Racial/Ethnic Disparities in Survival Among Patients With Young-Onset Colorectal Cancer.

PubMed

Holowatyj, Andreana N; Ruterbusch, Julie J; Rozek, Laura S; Cote, Michele L; Stoffel, Elena M

2016-06-20

Racial disparities in colorectal cancer (CRC) persist, despite overall reductions in morbidity and mortality. In addition, incidence is rising among individuals younger than 50 years of age. We compared the survival of young-onset CRC among non-Hispanic black (NHB), non-Hispanic white (NHW), and Hispanic individuals. Using the National Cancer Institute's Surveillance, Epidemiology, and End Results program data, we identified individuals between the ages of 20 and 49 years, diagnosed with CRC between 2000 and 2009. Survival rates and Cox proportional hazards models were used to compare stage-specific 5-year survival among NHBs, NHWs, and Hispanics. We identified 28,145 patients with young-onset CRC (19,497 NHW; 4,384 NHB; 4,264 Hispanic) during the 10-year study period. Overall survival at 5 years after CRC diagnosis was 54.9% among NHB, 68.1% among NHW, and 62.9% among Hispanic individuals (P < .001). NHB individuals had a significantly higher hazard of cancer-specific death compared with NHWs after adjusting for age, sex, race, stage, county-level poverty, and treatment history in cases of colon (hazard ratio [HR], 1.35; 95% CI 1.26 to 1.45) and rectum/rectosigmoid junction (HR, 1.51; 95% CI, 1.37 to 1.68) cancers, whereas there was no significant difference in survival between NHWs and Hispanics. The greatest racial disparities in cancer-specific survival were observed among NHB and NHW patients diagnosed with stage II cancers of the colon (HR, 1.69; 95% CI, 1.33 to 2.14) and stage III cancers of the rectum (HR, 1.98; 95% CI, 1.63 to 2.40). Survival after CRC diagnosis at a young age is significantly worse among NHBs compared with NHWs, even among patients with early-stage disease. Further study is needed to determine whether differences in tumor biology and/or treatment are associated with racial disparities in outcomes, which would have implications for CRC treatment and prevention. © 2016 by American Society of Clinical Oncology.

Age-Specific Patient Navigation Preferences Among Adolescents and Young Adults with Cancer.

PubMed

Pannier, Samantha T; Warner, Echo L; Fowler, Brynn; Fair, Douglas; Salmon, Sara K; Kirchhoff, Anne C

2017-11-23

Patient navigation is increasingly being directed at adolescent and young adult (AYA) patients. This study provides a novel description of differences in AYA cancer patients' preferences for navigation services by developmental age at diagnosis. Eligible patients were diagnosed with cancer between ages 15 and 39 and had completed at least 1 month of treatment. Between October 2015 and January 2016, patients completed semi-structured interviews about navigation preferences. Summary statistics of demographic and cancer characteristics were generated. Differences in patient navigation preferences were examined through qualitative analyses by developmental age at diagnosis. AYAs were interviewed (adolescents 15-18 years N = 8; emerging adults 19-25 years N = 8; young adults 26-39 years N = 23). On average, participants were 4.5 years from diagnosis. All age groups were interested in face-to-face connection with a navigator and using multiple communication platforms (phone, text, email) to follow-up. Three of the most frequently cited needs were insurance, finances, and information. AYAs differed in support, healthcare, and resource preferences by developmental age; only adolescents preferred educational support. While all groups preferred financial and family support, the specific type of assistance (medical versus living expenses, partner/spouse, child, or parental assistance) varied by age group. AYAs with cancer have different preferences for patient navigation by developmental age at diagnosis. AYAs are not a one-size-fits-all population, and navigation programs can better assist AYAs when services are targeted to appropriate developmental ages. Future research should examine fertility and navigation preferences by time since diagnosis. While some navigation needs to span the AYA age range, other needs are specific to developmental age.

Introduction to Adolescent and Young Adult Cancers

Cancer.gov

Cancer researchers, advocates, and a cancer survivor introduce the topic of adolescent and young adult (AYA) cancers, covering distinct aspects of cancer in these patients and research questions to answer.

Family history and outcome of young patients with breast cancer in the UK (POSH study).

PubMed

Eccles, B K; Copson, E R; Cutress, R I; Maishman, T; Altman, D G; Simmonds, P; Gerty, S M; Durcan, L; Stanton, L; Eccles, D M

2015-07-01

Young patients presenting to surgical clinics with breast cancer are usually aware of their family history and frequently believe that a positive family history may adversely affect their prognosis. Tumour pathology and outcomes were compared in young British patients with breast cancer with and without a family history of breast cancer. Prospective Outcomes in Sporadic versus Hereditary breast cancer (POSH) is a large prospective cohort study of women aged less than 41 years with breast cancer diagnosed and treated in the UK using modern oncological management. Personal characteristics, tumour pathology, treatment and family history of breast/ovarian cancer were recorded. Follow-up data were collected annually. Family history data were available for 2850 patients. No family history was reported by 65·9 per cent, and 34·1 per cent reported breast/ovarian cancer in at least one first- or second-degree relative. Patients with a family history were more likely to have grade 3 tumours (63·3 versus 58·9 per cent) and less likely to have human epidermal growth factor receptor 2-positive tumours (24·7 versus 28·8 per cent) than those with no family history. In multivariable analyses, there were no significant differences in distant disease-free intervals for patients with versus those without a family history, either for the whole cohort (hazard ratio (HR) 0·89, 95 per cent c.i. 0·76 to 1·03; P = 0·120) or when stratified by oestrogen receptor (ER) status (ER-negative: HR 0·80, 0·62 to 1·04, P = 0·101; ER-positive: HR 0·95, 0·78 to 1·15, P = 0·589). Young British patients presenting to breast surgical clinics with a positive family history can be reassured that this is not a significant independent risk factor for breast cancer outcome. © 2015 BJS Society Ltd Published by John Wiley & Sons Ltd.

Lifestyle advice provision to teenage and young adult cancer patients: the perspective of health professionals in the UK.

PubMed

Pugh, Gemma; Hough, Rachael; Gravestock, Helen; Williams, Kate; Fisher, Abigail

2017-12-01

Health professionals are an important source of information for teenage and young adult (TYA) cancer patients. However, little is known about health professionals' provision of lifestyle advice to young people with cancer who are in their care. An online survey was distributed to health professionals within the UK who identified themselves as working with TYA cancer patients. Health professional awareness of lifestyle guidance, provision of lifestyle advice to young people and views on lifestyle information format and delivery were explored. Ninety-five health professionals (44% nurses; 28% allied health professionals; 17% physicians) completed the survey. The majority (72%) of respondents were aware of some lifestyle guidance for cancer patients. However, less than half of TYA health professionals (46%) were able to successfully recall the source of the guidelines and less than a third reported proving specific advice to the majority of their patients on weight management, smoking, alcohol consumption and sun safety. Many health professionals (38%) felt that they were not the right person to provide advice and cited lack of resources as a key barrier to advice provision. The majority (95%) reported being interested in a resource containing relevant lifestyle information that could be given to young people with cancer. TYA health professionals' awareness of lifestyle guidance and provision of advice regarding health behaviour is sub-optimal. Clear and comprehensive guidance written specifically for TYA health professionals could overcome the reported barriers and improve professionals' confidence in addressing and providing advice on lifestyle to young people with cancer.

Do Patient Characteristics Decide if Young Adult Cancer Patients Undergo Fertility Preservation?

PubMed

Flink, Dina M; Sheeder, Jeanelle; Kondapalli, Laxmi A

2017-06-01

The Fertility Attitudes and Cancer Treatment Study (FACTS) is a two-phase research initiative aimed to understand factors involved with decision making for future fertility. The FACTS will improve services and utilization of fertility preservation (FP) before cancer treatment. Phase-I examined patient characteristics as associated with FP decision. A retrospective cohort study of 108 reproductive-aged (18-45 years) males and females who received a fertility consultation before cancer treatment from January 1, 2012 to April 30, 2014 was conducted. Chi-square, student's t-test, and logistic regression were conducted to examine associations with FP decision. The utilization rate of FP following fertility consultation was 49%. Gender was the most significant factor contributing to FP decision; 74% of those who choose FP were male (odds ratio = 12.5; 95% confidence interval 5.1-31.4). Those who opted for FP were more likely to be Caucasian (p = 0.042), have a solid tumor (p = 0.03), and have a shorter time from diagnosis to fertility consultation (29.5 vs. 58.8 days; p = 0.017). Age, relationship, tumor location, treatment plan, and parity were not significant predictors of FP. Current perceptions about patient demographics do not predict FP utilization by young adult cancer patients. Providing patients an informed fertility consultation has demonstrated an increase in FP utilization to nearly one-half of patients. Despite gender being a significant factor in choosing FP, the study did not provide reasons as to why. The phase-II study will explore patients' reasons for FP decision in a qualitative design to understand these differences.

Young breast cancer patients who develop distant metastasis after surgery have better survival outcomes compared with elderly counterparts.

PubMed

Wang, Jingjing; Wang, Jiayu; Li, Qing; Zhang, Pin; Yuan, Peng; Ma, Fei; Luo, Yang; Cai, Ruigang; Fan, Ying; Chen, Shanshan; Li, Qiao; Xu, Binghe

2017-07-04

To investigate the recurrence pattern and subsequent survival outcomes in young breast cancer population, 483 young patients (≤ 35) and 739 elderly patients (≥ 65), who received mastectomy or breast-conserving surgery from 2008 to 2012, were included in this study. The young population presented with a higher rate of pathologic tumor stage (P < 0.001), positive pathologic lymph node (P < 0.001), grade III tumors (P < 0.001), and lymphovascular invasion (P < 0.001). With a median follow-up of 56.5 months, young patients had a significantly lower 5-year disease-free survival (73.7% vs 83.4%, P = 0.001), while no difference in 5-year overall survival was observed (91.7% vs 91.7%, P = 0.721). The 5-year cumulative incidences of locoregional relapse (8.9% vs 4.3%, P = 0.009) and distant metastasis (18.8% vs 9.5%, P < 0.001) were significantly higher in the young population. However, for patients with distant metastasis, the survival outcomes were significantly better in the young patients (5-year overall survival since diagnosis: 60.0% vs 47.3%, P = 0.025; 5-year overall survival after recurrence: 31.0% vs 24.3%, P = 0.001). Young breast cancer patients present with more aggressive clinicopathological features and have poor prognosis compared with elderly. But young patients with distant metastasis might have better survival outcomes.

Emergency Department Visits by Adolescent and Young Adult Cancer Patients Compared with Pediatric Cancer Patients in the United States.

PubMed

Kaul, Sapna; Russell, Heidi; Livingston, John A; Kirchhoff, Anne C; Jupiter, Daniel

2018-06-20

Limited information exists on emergency department (ED) visits for adolescent and young adult (AYA) patients with cancer. We examined the clinical reasons for ED visits, and outcomes, for AYAs with cancer compared to pediatric cancer patients. The 2013 Nationwide Emergency Department Sample data were used to identify 53,274 AYA (ages 15-39) and 6952 pediatric (ages 0-14) cancer ED visits. We evaluated patient (i.e., demographic and diagnosis) and hospital characteristics, and the ED event outcome (admitted to the same hospital or treated/released). Clinical reasons for visits were identified as procedures, infections, or noninfectious toxicities. Variables were compared between groups using chi-squared tests. Logistic regressions identified characteristics associated with the outcome between and within groups. AYA cancer visits were more likely to be self-paid (15.8% vs. 1.9%, p < 0.001), and be from low-income households and nonmetro counties than pediatric visits. Toxicity was the most prevalent reason for AYA visits (46.0%) and infections for pediatrics (47.3%, p < 0.001). AYA cancer visits were less likely to be admitted (OR = 0.84, 95% CI = 0.71-0.98; p = 0.03) than pediatric cancer. Among AYAs, self-paid visits were less likely to be admitted compared with privately insured visits (OR = 0.58, 95% CI: 0.52-0.66, p < 0.001). Self-pay did not affect the outcome for pediatric visits. In the United States, compared with pediatric cancer patients, AYAs with cancer visit EDs more often for toxicity-related problems, and are more often self-paid and from poorer households. These distinctive features impacting health service use should be incorporated into care plans aimed at delineating effective care for these patients.

Radiation exposure from diagnostic imaging in young patients with testicular cancer.

PubMed

Sullivan, C J; Murphy, K P; McLaughlin, P D; Twomey, M; O'Regan, K N; Power, D G; Maher, M M; O'Connor, O J

2015-04-01

Risks associated with high cumulative effective dose (CED) from radiation are greater when imaging is performed on younger patients. Testicular cancer affects young patients and has a good prognosis. Regular imaging is standard for follow-up. This study quantifies CED from diagnostic imaging in these patients. Radiological imaging of patients aged 18-39 years, diagnosed with testicular cancer between 2001 and 2011 in two tertiary care centres was examined. Age at diagnosis, cancer type, dose-length product (DLP), imaging type, and frequency were recorded. CED was calculated from DLP using conversion factors. Statistical analysis was performed with SPSS. In total, 120 patients with a mean age of 30.7 ± 5.2 years at diagnosis had 1,410 radiological investigations. Median (IQR) surveillance was 4.37 years (2.0-5.5). Median (IQR) CED was 125.1 mSv (81.3-177.5). Computed tomography accounted for 65.3 % of imaging studies and 98.3 % of CED. We found that 77.5 % (93/120) of patients received high CED (>75 mSv). Surveillance time was associated with high CED (OR 2.1, CI 1.5-2.8). Survivors of testicular cancer frequently receive high CED from diagnostic imaging, mainly CT. Dose management software for accurate real-time monitoring of CED and low-dose CT protocols with maintained image quality should be used by specialist centres for surveillance imaging. • CT accounted for 98.3 % of CED in patients with testicular cancer. • Median CED in patients with testicular cancer was 125.1 mSv • High CED (>75 mSv) was observed in 77.5 % (93/120) of patients. • Dose tracking and development of low-dose CT protocols are recommended.

Does a dedicated program for young breast cancer patients affect the likelihood of fertility preservation discussion and referral?

PubMed

Srikanthan, Amirrtha; Amir, Eitan; Warner, Ellen

2016-06-01

To assess whether a dedicated program for young breast cancer patients, including a nurse navigator, improves the frequency of: a) fertility discussion documentation and b) fertility preservation (FP) referrals. A retrospective chart review and prospective survey were undertaken of breast cancer patients diagnosed at age 40 or younger between 2011 and 2013 who received adjuvant or neo-adjuvant chemotherapy at two academic cancer centers in Toronto, Canada. The Odette Cancer Centre (OCC) has a dedicated program for young breast cancer patients while Princess Margaret Cancer Centre (PM) does not. Patient demographics, tumor pathology, treatment and fertility discussion documentation prior to systemic chemotherapy administration were extracted from patient records. Prospective surveys were administered to the same cohort to corroborate data collected. Eighty-one patient charts were reviewed at both OCC and PM. Forty-seven and 49 at OCC and PM returned surveys for a response rate of 58% and 60% respectively. Chart reviews demonstrated no difference in the frequency of fertility discussion documentation (78% versus 75% for OCC and PM, p = 0.71); however, surveys demonstrated higher rates of recall of fertility discussion at OCC (96% versus 80%, p = 0.02). A greater proportion of women were offered FP referrals at OCC, as observed in chart reviews (56% versus 41%, p = 0.09), and surveys (73% versus 51%, p = 0.04). Time to initiation of chemotherapy did not differ between women who underwent FP and those who did not. A dedicated program for young breast cancer patients is associated with a higher frequency of FP referrals without delaying systemic therapy. Copyright © 2016 Elsevier Ltd. All rights reserved.

Health-related quality of life in young men with testicular cancer: validation of the Cancer Assessment for Young Adults (CAYA).

PubMed

Hoyt, Michael A; Cano, Stefan J; Saigal, Christopher S; Stanton, Annette L

2013-12-01

Patient-reported outcome instruments are needed to measure health-related quality of life (HRQOL) in young adults with cancer. The purpose of this project was to establish a conceptual model and measurement instrument for assessment of HRQOL in young men with testicular cancer. Patient interviews and a literature review were used to develop a conceptual framework of biopsychosocial domains of cancer-related quality of life and an initial pool of questionnaire items. Items were piloted and refined. Revised items were administered to a sample (N = 171) of young (ages 18-29) men with testicular cancer and repeated 4 weeks later. Rasch measurement methods guided item reduction and scale construction. Traditional psychometric analyses were also performed to allow for comparison with existing measures. The conceptual framework included seven biopsychosocial domains: physical, sexual, intrapersonal, cognitive-emotional, social-relational, educational-vocational-avocational, and spiritual to form independent scales of the resulting questionnaire, the Cancer Assessment for Young Adults-Testicular (CAYA-T). Each scale fulfilled Rasch and traditional psychometric criteria (i.e., person separation index, 0.34-0.82; Cronbach's alpha, 0.70-0.91; and an expected pattern of convergent and discriminant validity correlations). The CAYA-T can be used to assess HRQOL across a comprehensive set of domains as identified by young men with cancer. It passes strict psychometric criteria and has potential as a useful research and clinical tool. The CAYA-T has potential research and clinical value for addressing inter-related aspects of HRQOL in young adult men with cancer. The measure may assist with assessing and monitoring HRQOL across a range of domains and contributing to more comprehensive assessment of biopsychosocial needs of young adults.

The Oncofertility Consortium—addressing fertility in young people with cancer

PubMed Central

Woodruff, Teresa K.

2011-01-01

The number of young cancer survivors is increasing owing to advances in cancer therapeutics, but many face infertility as a result of their treatment. Technologies that already exist for cancer patients concerned about their future fertility include sperm banking for men and hormonal intervention followed by in vitro fertilization and embryo cryopreservation for women. However, logistical barriers to timely patient referral and coordination of care between specialties can limit patient access to all the available options. Moreover, there are few alternatives for young women and girls who cannot delay their cancer treatment, or who are unable to undergo hormonal intervention. The Oncofertility Consortium is a network of researchers, physicians and scholars who are advancing fertility preservation options for young cancer patients. Research into the societal, ethical, and legal implications is also an important part of the work performed by the Oncofertility Consortium, which is providing new perspectives on patient decision making about how to access these emerging reproductive technologies. Experts in the fields of oncology, reproductive medicine, the social sciences, law, education, and the humanities are working together to develop next generation reproductive interventions and promote communication between scholars, clinicians, patients, and the public to ensure that young cancer patients are equipped with the most appropriate information and options for having a family in the future. PMID:20498666

"I Got My Diagnosis on a Yellow Post-it Note": Young Adult Cancer Patients' Experiences of the Process of Being Diagnosed With Cancer.

PubMed

Hauken, May Aasebø; Hølge-Hazelton, Bibbi; Larsen, Torill M B

2018-06-01

Cancer in young adults is rare but young adult cancer patients (YACPs) are at an increased risk of severe physical and psychosocial impairments during cancer treatment and survivorship. However, little is known about the onset of this process. The aim of this study was to explore how young cancer survivors experience the process of being diagnosed with cancer. A qualitative method founded on a phenomenological-hermeneutical approach was used and included in-depth interviews with 20 young adult survivors (aged 24-35 years) with different cancer diagnoses, analyzed by Systematic Text Condensation. The participants' experiences of the diagnosis process were elaborated according to 3 main themes: (1) "I felt something was wrong, but…," (2) "The traumatic uncertainty," and (3) "The day my world collapsed." The findings indicate that the YACPs experienced a diagnosis of cancer as a highly traumatic and long-lasting process, characterized by lack of information and uncertainty. The findings indicate that healthcare professionals do not acknowledge the vulnerable phase of life and transitional challenges of YACPs. The findings highlight the need to raise awareness of cancer in young adulthood in the public and in the primary healthcare system, to shorten the diagnosis process, and to clarify responsibility for age-related information and psychosocial follow-up during the diagnosis process. Further research is highly warranted.

[Clinicopathologic characteristics and prognosis in young Chinese women with breast cancer].

PubMed

Liu, Xin; Liu, Qi-feng; Xu, Ye; Ouyang, Tao; Li, Jin-feng; Wang, Tian-feng; Fan, Zhao-qing; Fan, Tie; Lin, Ben-yao; Xie, Yun-tao

2011-07-12

To analyze the clinicopathologic characteristics and evaluate the prognosis in young Chinese women with breast cancer. A total of 1538 female patients with operable primary breast cancer (stage I-III) treated at our hospital from December 1994 to December 2003 were analyzed retrospectively. Among them, 1075 patients (≤ 60 yrs) with the complete follow-up data were divided into two groups according to age: young breast cancer group (≤ 40 yrs, n = 208) and control group (41 - 60 yrs, n = 867) to analyze the differences in their clinicopathologic characteristics and evaluate the prognosis of both groups. The patients with young breast cancer were more likely to have positive lymph nodes (P = 0.016), a negative expression of ER (estrogen receptor) (P = 0.016) and a positive expression of HER2 (P = 0.001). The 5-year disease-free survival (DFS) rates of young breast cancer group and control group were 73.3% and 84.1% (P < 0.001) and the 5-year overall survival (OS) rates 83.5% and 89.1% (P = 0.004) respectively. Moreover, the patients with young breast cancer had a worse DFS than control group in patients with stage I-II disease but not in those with stage III disease. And ≤ 40 years was an independent unfavorable prognostic factor of DFS (HR = 1.78, 95%CI: 1.19 - 2.66, P = 0.005) and OS (HR = 1.71, 95%CI: 1.01 - 2.90, P = 0.046) in the patients with stage I-II disease. Chinese women with young breast cancer have a worse prognosis, particularly in those with stage I-II disease.

Long-term prognosis of young breast cancer patients (≤40 years) who did not receive adjuvant systemic treatment: protocol for the PARADIGM initiative cohort study

PubMed Central

Dackus, Gwen MHE; ter Hoeve, Natalie D; Opdam, Mark; Vreuls, Willem; Varga, Zsuzsanna; Koop, Esther; Willems, Stefan M; Van Deurzen, Carolien HM; Groen, Emilie J; Cordoba, Alicia; Bart, Jos; Mooyaart, Antien L; van den Tweel, Jan G; Zolota, Vicky; Wesseling, Jelle; Sapino, Anna; Chmielik, Ewa; Ryska, Ales; Amant, Frederic; Broeks, Annegien; Kerkhoven, Ron; Stathonikos, Nikolas; Veta, Mitko; Voogd, Adri; Jozwiak, Katarzyna; Hauptmann, Michael; Hoogstraat, Marlous; Schmidt, Marjanka K; Sonke, Gabe; van der Wall, Elsken; Siesling, Sabine; van Diest, Paul J; Linn, Sabine C

2017-01-01

Introduction Currently used tools for breast cancer prognostication and prediction may not adequately reflect a young patient’s prognosis or likely treatment benefit because they were not adequately validated in young patients. Since breast cancers diagnosed at a young age are considered prognostically unfavourable, many treatment guidelines recommend adjuvant systemic treatment for all young patients. Patients cured by locoregional treatment alone are, therefore, overtreated. Lack of prognosticators for young breast cancer patients represents an unmet medical need and has led to the initiation of the PAtients with bReAst cancer DIaGnosed preMenopausally (PARADIGM) initiative. Our aim is to reduce overtreatment of women diagnosed with breast cancer aged ≤40 years. Methods and analysis All young, adjuvant systemic treatment naive breast cancer patients, who had no prior malignancy and were diagnosed between 1989 and 2000, were identified using the population based Netherlands Cancer Registry (n=3525). Archival tumour tissues were retrieved through linkage with the Dutch nationwide pathology registry. Tissue slides will be digitalised and placed on an online image database platform for clinicopathological revision by an international team of breast pathologists. Immunohistochemical subtype will be assessed using tissue microarrays. Tumour RNA will be isolated and subjected to next-generation sequencing. Differences in gene expression found between patients with a favourable and those with a less favourable prognosis will be used to establish a prognostic classifier, using the triple negative patients as proof of principle. Ethics and dissemination Observational data from the Netherlands Cancer Registry and left over archival patient material are used. Therefore, the Dutch law on Research Involving Human Subjects Act (WMO) is not applicable. The PARADIGM study received a ‘non-WMO’ declaration from the Medical Ethics Committee of the Netherlands Cancer

Recent developments in supporting adolescent and young adult siblings of cancer patients.

PubMed

Patterson, Pandora; Medlow, Sharon; McDonald, Fiona E J

2015-07-01

The psychosocial needs of adolescent and young adult (AYA) siblings of cancer patients are easily overlooked. Accordingly, the evidence base informing short and long-term outcomes for these young people is sparse. This review provides an overview of recent research highlighting the experiences, unmet needs and psychosocial issues of AYA siblings, together with recent interventions. The reviewed studies bring focus to the range of informational and supportive care needs that typically remain unmet in AYA siblings. The limited number of interventions designed specifically for this group not only appear to have positive results but also underscore the need for effective risk stratification preintervention and tailoring of interventions to the specific needs of participants. AYA siblings of cancer patients display a range of psychosocial symptoms that can be ameliorated with age-appropriate information and targeted intervention programs. Limited research suggests that the majority of unmet needs for AYA siblings seem to occur during the acute phases of the brother or sister's initial diagnosis, treatment and relapse. Further research is required on siblings' long-term psychosocial assessment and management, bereavement, family systems, the impact of the cancer experience on siblings' personality and identity, and the development and evaluation of tailored psychosocial interventions. Policy research is also required to identify opportunities for expanding established healthcare systems to include sibling support.

Fertility preservation and cancer: Challenges for adolescent and young adult patients

PubMed Central

Benedict, Catherine; Thom, Bridgette; Kelvin, Joanne

2016-01-01

Purpose of review With increasing survival rates, fertility is an important quality of life concern for many young cancer patients. There is a critical need for improvements in clinical care to ensure patients are well informed about infertility risks and fertility preservation (FP) options and to support them in their reproductive decision-making prior to treatment. Recent findings A number of barriers prevent fertility from being adequately addressed in the clinical context. Providers’ and patients’ incomplete or inaccurate understanding of infertility risks exacerbate patients’ reproductive concerns. For female patients in particular, making decisions about FP before treatment often leads to decision conflict, reducing the likelihood of making informed, values-based decisions, and post-treatment regret and distress. Recent empirically-based interventions to improve provider training around fertility issues and to support patient decision-making about FP show promise. Summary Providers should be knowledgeable about the infertility risks associated with cancer therapies and proactively address fertility with all patients who might one day wish to have a child. Comprehensive counseling should also include related issues such as contraceptive use and health implications of early menopause, regardless of desire for future children. Although the negative psychosocial impact of cancer-related infertility is now well accepted, limited work has been done to explore how to improve clinical management of fertility issues in the context of cancer care. Evidence-based interventions should be developed to address barriers and provide psychosocial and decision-making support to patients who are concerned about their fertility and interested in FP options. PMID:26730794

Breast cancer in young women.

PubMed

Radecka, Barbara; Litwiniuk, Maria

2016-01-01

Breast cancer (BC) in young women is rare, affecting only 4-6% of women under the age of 40. Regardless, BC remains the most common malignancy among younger patients. Recently, a significant increase in BC rates has been observed among pre-menopausal subjects. Breast cancer in young women requires special attention due to its specific morphologic and prognostic characteristics and unique aspects, including fertility preservation and psychosocial issues (e.g. its impact on family life and career). Young women are more likely to have tumors with higher incidence of negative clinicopathologic features (higher histological grade, more lymph node positivity, lower estrogen receptor (ER) positivity, higher rates of Her2/neu overexpression). Also, they tend to be diagnosed at more advanced stages of the disease. That, in turn, contributes to less favorable prognosis as compared to older women. Young women are generally treated similarly to older patients. Surgical management includes mastectomy or breast-conserving surgery, followed by radiation therapy (younger women have higher local recurrence rates than older women, especially after breast-conserving therapy). Although the basics of chemotherapy are the same for patients of all ages, younger women have some special considerations. It is important to consider options for fertility preservation before starting systemic treatment. Patients should have access to genetic testing as their results may affect the choice of therapy. Younger women and their families should receive adequate psychological support and counselling.

Information needs of adolescent and young adult cancer patients and their parent-carers.

PubMed

McCarthy, Maria C; McNeil, Robyn; Drew, Sarah; Orme, Lisa; Sawyer, Susan M

2018-05-01

This study aimed to explore health-related information needs of adolescent and young adults (AYAs) and their parent-carers and to examine demographic and clinical variables associated with unmet information needs, including patient activation. In a national cross-sectional study, 196 Australian AYAs diagnosed with cancer between 15 and 25 years and within 24 months of diagnosis and 204 parent-carers reported on total and unmet needs for cancer and health-related information. Fifty-one percent of AYAs were male, 81% had completed treatment and 86% were treated in adult hospitals. AYAs and parents reported high levels of total need for information. The mean number of unmet needs was 5.63 and 6.82 for AYAs and parents, respectively. AYAs reported the highest unmet needs in relation to their cancer (e.g. late effects and cancer recurrence, and having children in the future). The highest unmet parent information needs were related to medical information about their child as well as information on financial issues for their children and themselves. Unmet information need was associated with psychological distress (posttraumatic stress symptoms) for AYAs and parents. Patient activation was negatively associated with unmet information needs for AYAs. Demographic and treatment variables were not significantly associated with information needs. These findings indicate the importance of information needs for AYAs and their carers. The association between patient activation and information needs suggests that promoting young people's engagement with healthcare is a key opportunity within AYA care. Parent information needs and associated emotional distress additionally highlight the importance of family-centered care.

[Is vocational reintegration of young cancer patients possible?].

PubMed

Weiss, J; Kuhn, R; Wentrock, S; Malitz, J; Reuss-Borst, M

2013-12-01

Besides an improvement in quality of life, one of the major targets of rehabilitation programmes is to preserve the ability to work and to integrate the patient into working life again. Cancer in particular is often associated with a loss of employment and joblessness, frequently caused by incomplete rehabilitation. The programme is aimed at young cancer patients aged between 18 and 40 years. In addition to medical rehabilitation, they undergo a specially developed programme which they complete in groups of no more than 5 persons. At baseline and at the end of the 3 weeks rehabilitation, tests on physical and mental capacity are conducted. During rehabilitation, different training programmes concerning mobility at work, fine motor skills and cognitive abilities are held, complemented by an intensive psycho-social training programme. Additionally, patients receive individual social counselling. So far, 34 patients with an average age of 31.8 years have participated in the programme, 65% of them suffering from malignant haematological diseases. The combination of a medical and a vocational rehabilitation programme was judged extremely positively by the participants, which remained the case 6 months after completion of the programme. The rehabilitation programme significantly reduced work incapacity periods: at baseline, only 6% of the participants had not experienced such periods, but after 3 and 6 months, this rate had increased to 61% and 62% respectively. This was accompanied by an increased health-related quality of life and reduced fatigue. With our pilot project we were able to show that such a programme is feasible, can be well integrated into clinical routine and is successful.

Update on fertility preservation in young women undergoing breast cancer and ovarian cancer therapy.

PubMed

Lambertini, Matteo; Ginsburg, Elizabeth S; Partridge, Ann H

2015-02-01

The purpose of the article is to review the available options for fertility preservation in patients with breast and ovarian cancer, and the special issues faced by BRCA mutation carriers. Future fertility is an important consideration for many young patients with cancer. There are both experimental and standard available strategies for patients with breast and ovarian cancer to preserve fertility, and each has potential advantages and disadvantages. Embryo cryopreservation is widely available with a highly successful track record. Improvements in laboratory techniques have led to oocyte cryopreservation recently being recategorized as nonexperimental. Conservative gynecologic surgery is a standard consideration for patients with stage I ovarian cancer who desire future fertility. Ovarian tissue cryopreservation as well as ovarian suppression with luteinizing hormone-releasing hormone analogs during chemotherapy are considered experimental methods at this time, although recent data suggest both safety and efficacy for the use of luteinizing hormone-releasing hormone analogs in women receiving (neo)adjuvant chemotherapy for breast cancer. Special issues should be considered for women with BRCA mutations because of the need to undergo preventive surgery at young age. Multidisciplinary teams and well functioning relationships between the oncology and reproductive units are crucial to manage the fertility issues of young women with cancer.

Long-term prognosis of young breast cancer patients (≤40 years) who did not receive adjuvant systemic treatment: protocol for the PARADIGM initiative cohort study.

PubMed

Dackus, Gwen Mhe; Ter Hoeve, Natalie D; Opdam, Mark; Vreuls, Willem; Varga, Zsuzsanna; Koop, Esther; Willems, Stefan M; Van Deurzen, Carolien Hm; Groen, Emilie J; Cordoba, Alicia; Bart, Jos; Mooyaart, Antien L; van den Tweel, Jan G; Zolota, Vicky; Wesseling, Jelle; Sapino, Anna; Chmielik, Ewa; Ryska, Ales; Amant, Frederic; Broeks, Annegien; Kerkhoven, Ron; Stathonikos, Nikolas; Veta, Mitko; Voogd, Adri; Jozwiak, Katarzyna; Hauptmann, Michael; Hoogstraat, Marlous; Schmidt, Marjanka K; Sonke, Gabe; van der Wall, Elsken; Siesling, Sabine; van Diest, Paul J; Linn, Sabine C

2017-11-14

Currently used tools for breast cancer prognostication and prediction may not adequately reflect a young patient's prognosis or likely treatment benefit because they were not adequately validated in young patients. Since breast cancers diagnosed at a young age are considered prognostically unfavourable, many treatment guidelines recommend adjuvant systemic treatment for all young patients. Patients cured by locoregional treatment alone are, therefore, overtreated. Lack of prognosticators for young breast cancer patients represents an unmet medical need and has led to the initiation of the PAtients with bReAst cancer DIaGnosed preMenopausally (PARADIGM) initiative. Our aim is to reduce overtreatment of women diagnosed with breast cancer aged ≤ 40 years. All young, adjuvant systemic treatment naive breast cancer patients, who had no prior malignancy and were diagnosed between 1989 and 2000, were identified using the population based Netherlands Cancer Registry (n=3525). Archival tumour tissues were retrieved through linkage with the Dutch nationwide pathology registry. Tissue slides will be digitalised and placed on an online image database platform for clinicopathological revision by an international team of breast pathologists. Immunohistochemical subtype will be assessed using tissue microarrays. Tumour RNA will be isolated and subjected to next-generation sequencing. Differences in gene expression found between patients with a favourable and those with a less favourable prognosis will be used to establish a prognostic classifier, using the triple negative patients as proof of principle. Observational data from the Netherlands Cancer Registry and left over archival patient material are used. Therefore, the Dutch law on Research Involving Human Subjects Act (WMO) is not applicable. The PARADIGM study received a 'non-WMO' declaration from the Medical Ethics Committee of the Netherlands Cancer Institute - Antoni van Leeuwenhoek hospital, waiving individual patient

Listening through narratives: using a narrative approach when discussing fertility preservation options with young cancer patients

PubMed Central

Roher, S.I.G.; Gibson, J.; Gibson, B.E.; Gupta, A.A.

2017-01-01

Despite clinical practice guideline recommendations mandating that fertility preservation be discussed with young cancer patients, many providers fail to initiate such discussions with adolescents. Researchers and clinicians often focus on system-level changes to improve access to fertility preservation for adolescents and young adults in Canada. However, little of the available information considers the way in which health care providers approach those discussions. Research has shown that, even when fertility preservation options are broached with adolescents, survivors often report dissatisfaction with those conversations, thus raising additional concerns about their content and quality. Here, we consider how a narrative approach—and the Frank narrative typology in particular—could improve the quality of such conversations by helping providers to more accurately and thoughtfully respond to the needs of adolescent patients when discussing the possibility of fertility preservation. Based on findings from a qualitative research project, we provide concrete suggestions for how to more sensitively approach fertility preservation conversations with male adolescent cancer patients and survivors. PMID:28270719

Unique Characteristics of Adolescent and Young Adult Acute Lymphoblastic Leukemia, Breast Cancer, and Colon Cancer

PubMed Central

Seibel, Nita L.; Blair, Donald G.; Albritton, Karen; Hayes-Lattin, Brandon

2011-01-01

Each year in the United States, nearly 70 000 individuals between the ages of 15 and 40 years are diagnosed with cancer. Although overall cancer survival rates among pediatric and older adult patients have increased in recent decades, there has been little improvement in survival of adolescent and young adult (AYA) cancer patients since 1975 when collected data became adequate to evaluate this issue. In 2006, the AYA Oncology Progress Review Group made recommendations for addressing the needs of this population that were later implemented by the LIVESTRONG Young Adult Alliance. One of their overriding questions was whether the cancers seen in AYA patients were biologically different than the same cancers in adult and/or pediatric patients. On June 9–10, 2009, the National Cancer Institute (NCI) and the Lance Armstrong Foundation (LAF) convened a workshop in Bethesda, MD, entitled “Unique Characteristics of AYA Cancers: Focus on Acute Lymphocytic Leukemia (ALL), Breast Cancer and Colon Cancer” that aimed to examine the current state of basic and translational research on these cancers and to discuss the next steps to improve their prognosis and treatment. PMID:21436065

Lung cancer in younger patients.

PubMed

Abbasowa, Leda; Madsen, Poul Henning

2016-07-01

Lung cancer remains a leading cause of cancer-related death. The incidence increases with age and the occurrence in young patients is relatively low. The clinicopathological features of lung cancer in younger patients have not been fully explored previously. To assess the age differences in the clinical characteristics of lung cancer, we conducted a retrospective analysis comparing young patients ≤ 65 years of age with an elderly group > 65 years of age. Among 1,232 patients evaluated due to suspicion of lung cancer in our fast-track setting from January-December 2013, 312 newly diagnosed lung cancer patients were included. Patients ≤ 65 years had a significantly higher representation of females (p = 0.0021), more frequent familial cancer aggregation (p = 0.028) and a lower incidence of squamous cell carcinoma (p = 0.0133). When excluding pure carcinoid tumours, a significantly higher proportion of the younger patients presented with advanced stage disease (p = 0.0392). Combined modality therapy was more common in younger patients (p = 0.0009), while chemotherapy appeared less prevalent among the elderly (p = 0.0015). Lung cancer in younger patients comprises a distinct clinicopathological entity with more frequent advanced stage disease and a significantly greater proportion with a family history of cancer. Implementing genetic background assessments and considering lung cancer as a possible diagnosis in younger, symptomatic patients, is of paramount importance. none. The study was approved by the -Danish Data Protection Agency.

Experience of Southern Chinese: new challenges in treating young female breast cancer patients at child-bearing age--a call for multi-disciplinary collaboration.

PubMed

Kwong, Ava; Chu, Annie Tsz-Wai

2012-01-01

Compared with western populations, Southern Chinese, especially those residing in Hong Kong, are experiencing increasing breast cancer incidence and also a younger onset of breast cancer. Combating this problem and treating young women with breast cancer poses specific challenges and complicated considerations. With reference to the postponement in the age of marriage and reproduction in modern societies, the issue of fertility after breast cancer, especially for high-risk young patients, is one significant quality of life concern that cannot be underestimated as a secondary medical topic. While the issue has its significance and is confronting front-line breast cancer care teams of different disciplines, related research is mostly on Caucasians. In cultures where the traditional expectation on women for child-bearing is still prominent, young breast cancer patients may endure significant distress over fertility options after breast cancer. There is a lack of related data on Asian breast cancer survivors at child-bearing age, which calls for a pressing need to encourage qualitative groundwork, case reports, and cohort experiences in hope for providing insight and arouse research interest. In order to provide a long-term comprehensive multidisciplinary management service with encouragement to encompass prospects for a positive future among young breast cancer survivors, relevant disciplines need to collaborate and work efficaciously together both on clinical and research aspects of cancer-related fertility issues.

Sexual function in adolescent and young adult cancer survivors-a population-based study.

PubMed

Olsson, Maria; Steineck, Gunnar; Enskär, Karin; Wilderäng, Ulrica; Jarfelt, Marianne

2018-03-05

Previous research has established that treatments for cancer can result in short- and long-term effects on sexual function in adult cancer patients. The purpose was to investigate patient-reported physical and psychosexual complications in adolescents and young adults after they have undergone treatment for cancer. In this population-based study, a study-specific questionnaire was developed by a method used in several previous investigations carried out by our research group, Clinical Cancer Epidemiology. The questionnaire was developed in collaboration with adolescent and young adult cancer survivors (15-29 years) and validated by professionals from oncology units, midwives, epidemiologists, and statisticians. The topics covered in the questionnaire were psychosocial health, body image, sexuality, fertility, education, work, and leisure. The web-based questionnaire was sent to adolescent and young adult cancer survivors and matched controls in Sweden. In this study, adolescent and young adult cancer survivors (15-29 years) showed low satisfaction regarding sexual function compared to controls (P < 0.01). Female adolescent and young adult cancer survivors had a statistically significant lower frequency of orgasm during sexual activity than the controls (P < 0.01). Male adolescent and young adult cancer survivors had statistically significant lower sexual desire than the controls (P = 0.04). We found that adolescent and young adult cancer survivors perceived themselves as being less satisfied with their sexual function than matched population-based controls. Adolescent and young adult cancer survivors need psychological rehabilitation support from the health care profession during and after cancer treatment to help them to reduce their reported poor sexual function to enhance a good sexual quality of life.

Patient Navigation Preferences for Adolescent and Young Adult Cancer Services by Distance to Treatment Location.

PubMed

Warner, Echo L; Fowler, Brynn; Pannier, Samantha T; Salmon, Sara K; Fair, Douglas; Spraker-Perlman, Holly; Yancey, Jeffrey; Randall, R Lor; Kirchhoff, Anne C

2018-05-03

To describe how distance to treatment location influences patient navigation preferences for adolescent and young adult (AYA) cancer patients and survivors. This study is part of a statewide needs assessment to inform the development of an AYA cancer patient and survivor navigation program. Participants were recruited from outpatient oncology clinics in Utah. Eligible participants had been diagnosed with cancer between ages 15-39 and had completed at least 1 month of treatment. Participants completed a semi-structured interview on preferences for patient navigation. Summary statistics of demographic and cancer characteristics were generated. Thematic content analysis was used to describe navigation preferences among participants classified as distance (≥20 miles) and local (<20 miles), to explain differences in their needs based on distance from their treatment center. The top three patient navigation needs were general information, financial, and emotional support. More local patients were interested in patient navigation services (95.2%) compared to distance participants (77.8%). Fewer local (38.1%) than distance participants (61.1%) reported challenges getting to appointments, and distance patients needed specific financial support to support their travel (e.g., fuel, lodging). Both local and distance patients desired to connect with a navigator in person before using another form of communication and wanted to connect with a patient navigator at the time of initial diagnosis. Distance from treatment center is an important patient navigation consideration for AYA cancer patients and survivors. After initially connecting with AYAs in person, patient navigators can provide resources remotely to help reduce travel burden.

Documentation of fertility preservation discussions for young adults with cancer: Examining compliance with treatment guidelines

PubMed Central

Salsman, John M.; Yanez, Betina; Smith, Kristin N.; Beaumont, Jennifer L.; Snyder, Mallory A.; Barnes, Khouri; Clayman, Marla L.

2017-01-01

Background Professional guidelines have been developed to promote discussion between providers and newly diagnosed young adults with cancer about the possibility of cancer treatment-related infertility, but previous research suggests many young adults fail to receive this information. The aim of this study was to examine rates of and factors predictive of oncologists’ compliance with national guidelines for discussing potential treatment-related infertility with newly diagnosed young adults seen at an NCI-designated comprehensive cancer center. Methods We reviewed data from the electronic medical record for new clinic encounters between medical oncologists and young adults with cancer (ages 18–39) from 2010 to 2012. Data from oncologist discussions of fertility preservation were abstracted, as were patient (age, gender, race, ethnicity, cancer type) and oncologist (gender, graduation year from fellowship) characteristics. Results 1018 cases were reviewed with 454 patients (M=31.5 years old, 67.8% women) meeting inclusion criteria. Overall, 83% of patients were informed about potential treatment-related infertility with patients with breast cancer (85% informed), Hodgkin lymphoma (95% informed), Non-Hodgkin lymphoma (94% informed), leukemia (88% informed) or testicular cancer (100% informed) more likely to be informed than other cancer types (60%–74% informed). There was a significant effect for patient gender (OR=3.57, CI: 1.33, 9.60, p=0.012) with females being more likely to be informed than males. Conclusions Reported compliance with fertility preservation guidelines was greater than published rates. Higher compliance rates in female patients and in patients with cancers more common among young adults may reflect greater awareness of fertility-related concerns among these patients and their providers. PMID:26957616

Health-Related Quality of Life of Adolescent and Young Adult Patients With Cancer in the United States: The Adolescent and Young Adult Health Outcomes and Patient Experience Study

PubMed Central

Smith, Ashley Wilder; Bellizzi, Keith M.; Keegan, Theresa H.M.; Zebrack, Brad; Chen, Vivien W.; Neale, Anne Victoria; Hamilton, Ann S.; Shnorhavorian, Margarett; Lynch, Charles F.

2013-01-01

Purpose Adolescents and young adults (AYAs) diagnosed with cancer face numerous physical, psychosocial, and practical challenges. This article describes the health-related quality of life (HRQOL) and associated demographic and health-related characteristics of this developmentally diverse population. Patients and Methods Data are from the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort of 523 AYA patients with cancer, ages 15 to 39 years at diagnosis from 2007 to 2009. Comparisons are made by age group and with general and healthy populations. Multiple linear regression models evaluated effects of demographic, disease, health care, and symptom variables on multiple domains of HRQOL using the Pediatric Quality of Life Inventory (PedsQL) and the Short-Form Health Survey 12 (SF-12). Results Overall, respondents reported significantly worse HRQOL across both physical and mental health scales than did general and healthy populations. The greatest deficits were in limitations to physical and emotional roles, physical and social functioning, and fatigue. Teenaged patients (ages 15 to 17 years) reported worse physical and work/school functioning than patients 18 to 25 years old. Regression models showed that HRQOL was worse for those in treatment, with current/recent symptoms, or lacking health insurance at any time since diagnosis. In addition, sarcoma patients, Hispanic patients, and those with high school or lower education reported worse physical health. Unmarried patients reported worse mental health. Conclusion Results suggest that AYAs with cancer have major decrements in several physical and mental HRQOL domains. Vulnerable subgroups included Hispanic patients, those with less education, and those without health insurance. AYAs also experienced higher levels of fatigue that were influenced by current symptoms and treatment. Future research should explore ways to address poor functioning in this

[Pain experiences and life satisfaction of young adult cancer patients].

PubMed

Geue, K; Schmidt, R; Sender, A; Friedrich, M

2017-02-01

After having completed medical treatment cancer patients often suffer from pain that can impair the quality of life. While young adolescents and adults (AYA) with cancer have become the focus of research during recent years, literature on the prevalence, quality and relief of pain in AYA patients is lacking. This study investigated psychosocial data on pain experienced by AYA patients (e.g. prevalence, type, distress, anxiety and need for support) and the association with the quality of life. Standardized and validated questionnaires were used for assessing pain and quality of life in AYA patients defined as the patient group between 18 and 39 years. Calculated regression models were summarized in a pathway model. Out of 117 AYA patients (66 % women) 45 (39 %) suffered from pain and of these 73 % felt impaired due to the pain, 58 (50 %) had a fear of pain and 21 (20 %) reported a need for support. The severity of pain had a negative influence on physical functioning (β = -0.335) and health-related satisfaction (β = -0.415). Regarding the quality of life, 105 patients (90 %) were overall satisfied with their life. Dissatisfaction was reported in the areas of occupation (39.34 %), ability to relax (36.31 %), physical performance (34.29 %), income (32.27 %) and partnership/sexuality (29.25 %). This study provides evidence that pain plays a relevant role for AYA patients after the end of medical treatment. A substantial proportion of AYA patients reported the need for support so that the question arises whether medical pain management is sufficient, particularly as pain was associated with impairment and strongly negatively associated with health-related satisfaction.

Breast Cancer Prognosis for Young Patients

PubMed Central

OWRANG, MEHDI; COPELAND, L. ROBERT JR; RICKS-SANTI, J. LUISEL; GASKINS, MELVIN; BEYENE, DESTA; DEWITTY, L. ROBERT JR; KANAAN, M. YASMINE

2017-01-01

Background/Aims: Breast cancer (BCa) prognostication is a vital element for providing effective treatment for patients with BCa. Studies suggest that ethnicity plays a greater role in the incidence and poor prognosis of BCa in younger women than in their older counterparts. Therefore, the goal of this study was to assess the association between age and ethnicity on the overall final prognosis. Materials and Methods: Nottingham Prognostic Index (NPI) was used to analyze BCa prognosis using Howard University Cancer Center Tumor Registry and the National Cancer Institute’s Surveillance, Epidemiology, and End Results BCa datasets. Patients were grouped according to their predicted prognosis based on NPI scheme. Results: There was no correlation between the younger patients compared to their older counterparts for any of the prognostic clusters. The significance of ethnicity in poorer prognosis for younger age is not conclusive either. Conclusion: An extended prognostic tool/system needs to be evaluated for its usefulness in a clinical practice environment. PMID:28652435

Breast Cancer Prognosis for Young Patients.

PubMed

Owrang, Mehdi; Copeland, Robert L; Ricks-Santi, Luisel J; Gaskins, Melvin; Beyene, Desta; Dewitty, Robert L; Kanaan, Yasmine M

2017-01-01

Breast cancer (BCa) prognostication is a vital element for providing effective treatment for patients with BCa. Studies suggest that ethnicity plays a greater role in the incidence and poor prognosis of BCa in younger women than in their older counterparts. Therefore, the goal of this study was to assess the association between age and ethnicity on the overall final prognosis. Nottingham Prognostic Index (NPI) was used to analyze BCa prognosis using Howard University Cancer Center Tumor Registry and the National Cancer Institute's Surveillance, Epidemiology, and End Results BCa datasets. Patients were grouped according to their predicted prognosis based on NPI scheme. There was no correlation between the younger patients compared to their older counterparts for any of the prognostic clusters. The significance of ethnicity in poorer prognosis for younger age is not conclusive either. An extended prognostic tool/system needs to be evaluated for its usefulness in a clinical practice environment. Copyright© 2017, International Institute of Anticancer Research (Dr. George J. Delinasios), All rights reserved.

Health-related quality of life of adolescent and young adult patients with cancer in the United States: the Adolescent and Young Adult Health Outcomes and Patient Experience study.

PubMed

Smith, Ashley Wilder; Bellizzi, Keith M; Keegan, Theresa H M; Zebrack, Brad; Chen, Vivien W; Neale, Anne Victoria; Hamilton, Ann S; Shnorhavorian, Margarett; Lynch, Charles F

2013-06-10

Adolescents and young adults (AYAs) diagnosed with cancer face numerous physical, psychosocial, and practical challenges. This article describes the health-related quality of life (HRQOL) and associated demographic and health-related characteristics of this developmentally diverse population. Data are from the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort of 523 AYA patients with cancer, ages 15 to 39 years at diagnosis from 2007 to 2009. Comparisons are made by age group and with general and healthy populations. Multiple linear regression models evaluated effects of demographic, disease, health care, and symptom variables on multiple domains of HRQOL using the Pediatric Quality of Life Inventory (PedsQL) and the Short-Form Health Survey 12 (SF-12). Overall, respondents reported significantly worse HRQOL across both physical and mental health scales than did general and healthy populations. The greatest deficits were in limitations to physical and emotional roles, physical and social functioning, and fatigue. Teenaged patients (ages 15 to 17 years) reported worse physical and work/school functioning than patients 18 to 25 years old. Regression models showed that HRQOL was worse for those in treatment, with current/recent symptoms, or lacking health insurance at any time since diagnosis. In addition, sarcoma patients, Hispanic patients, and those with high school or lower education reported worse physical health. Unmarried patients reported worse mental health. Results suggest that AYAs with cancer have major decrements in several physical and mental HRQOL domains. Vulnerable subgroups included Hispanic patients, those with less education, and those without health insurance. AYAs also experienced higher levels of fatigue that were influenced by current symptoms and treatment. Future research should explore ways to address poor functioning in this understudied group.

Struggling with cancer and treatment: young athletes recapture body control and identity through exercise: qualitative findings from a supervised group exercise program in cancer patients of mixed gender undergoing chemotherapy.

PubMed

Adamsen, L; Andersen, C; Midtgaard, J; Møller, T; Quist, M; Rørth, M

2009-02-01

Cancer and treatment can negatively affect the body's performance and appearance. Exercise has been tested in a few studies for altered body image among middle-aged women with breast cancer. The aim of the study was to explore how young pre-cancer athletes of both genders experience disease- and treatment-related physical fitness and appearance changes while undergoing chemotherapy and participating in a 6-week group exercise intervention. A prospective, explorative study using semi-structured interviews was conducted before and at termination of the intervention. The study included 22 cancer patients (median age 28 years). The young athletes experienced a change from a high level of physical activity, body satisfaction and a positive self-identity to a low level of physical activity, body denial and a negative self-identity. In the program, the patients experienced increased physical strength and recapture of certain aspects of their former positive body perception. Deterioation of muscle functions caused by chemotherapy was particularly painful to these patients, independent of gender and age. Young physically active patients are heavily dependent on their physical capacity, body satisfaction and self-identity. This should be taken into account when designing programs to rehabilitate and encourage these patients through the often-strenuous antineoplastic treatments.

Principles and Recommendations for the Provision of Healthcare in Canada to Adolescent and Young Adult–Aged Cancer Patients and Survivors

PubMed Central

Fernandez, Conrad; Fraser, Graeme A.M.; Freeman, Carolyn; Grunfeld, Eva; Gupta, Abha; Mery, Leslie Stephen; De Pauw, Sonja

2011-01-01

Adolescents and young adults (AYA) with cancer and survivors of cancer in childhood, adolescence, and young adulthood are a constituency facing disparities of care affecting quality of life and other outcomes in many parts of the world. In Canada, this situation occurs in a nation with population-based cancer control programs and a government-funded healthcare system. The Canadian Task Force on Adolescents and Young Adults with Cancer was established in 2008 with a mission to ensure that AYA-aged Canadians with cancer and AYA survivors of cancer have prompt, equitable access to the best care, and to establish and support research to identify how their health outcomes and quality of life can be optimized. Following a survey of existing services, and in consultation with survivors, healthcare professionals, and policy makers, the Task Force identified principles of care, priority issues for research and the establishment of outcome metrics, and strategies for implementing change that are designed to improve the outcomes and quality of life of this specific cohort of patients and survivors with unique developmental needs. The six broad recommendations highlight the need for age-appropriate psychosocial, survivorship, palliative, and medical care as well as research to redress inequities in the care provided to this group relative to both younger and older cancer patients. Improved care for this group will enable individuals to reach their full potential as productive, functioning members of society, and will provide economic and other societal benefits. PMID:23610731

Psychological and Physical Interventions for 
the Management of Cancer-Related Pain in Pediatric and Young Adult Patients: An Integrative Review.

PubMed

Jibb, Lindsay A; Nathan, Paul C; Stevens, Bonnie J; Seto, Emily; Cafazzo, Joseph A; Stephens, Nisha; Yohannes, Liza; Stinson, Jennifer N

2015-11-01

To identify and appraise current evidence related to the effectiveness of psychological and physical (nonpharmacologic) pain management modalities for children and young adults with cancer
. Electronic searches in MEDLINE, EMBASE, CINAHL, PsycINFO, and Web of Science (from database inception to June 2013) for clinical trials. A total of 32 unique studies were identified. Substantial heterogeneity existed across identified studies, precluding meta-analysis. Therefore, a narrative review of included studies is presented. Studies featured psychological and/or physical pain interventions for children and young adults (N = 1,171) aged 1-21 years with a variety of cancer diagnoses. Interventions included aromatherapy, art therapy, distraction, hypnosis, physical activity, physical positioning, touch therapy, and multimodal cognitive-behavior therapy. Twenty-two studies (69%) reported success in preventing or reducing pain intensity. The level of evidence and methodologic quality of studies were generally low
. Current nonpharmacologic pain interventions for pediatric and young adult patients with cancer are diverse. Several modalities significantly decreased pain intensity, suggesting that these strategies may be effective methods of pain treatment, particularly in the case of painful medical procedures. Future well-designed, multicenter, randomized, controlled trials are needed to further discern treatment effects on pain and other health outcomes in this population and to compare the relative effectiveness of different modalities. Nurses play a key role in pain assessment and management in pediatric and young adult patients with cancer. The studies included in this review constitute the beginnings of an evidence base that supports the need to implement psychological and physical interventions to improve pain outcomes in pediatric and young adult patients with cancer.

Cancer treatment decision-making among young adults with lung and colorectal cancer: a comparison with adults in middle age.

PubMed

Mack, Jennifer W; Cronin, Angel; Fasciano, Karen; Block, Susan D; Keating, Nancy L

2016-09-01

Our aim is to understand experiences with treatment decision-making among young adults with cancer. We studied patients with lung cancer or colorectal cancer in the Cancer Care Outcomes Research and Surveillance Consortium, a prospective cohort study. We identified 148 young adult patients aged 21-40 years who completed baseline interview questions about cancer treatment decision-making; each was propensity score matched to three middle adult patients aged 41-60 years, for a cohort of 592 patients. Patients were asked about decision-making preferences, family involvement in decision-making, and worries about treatment. An ordinal logistic regression model evaluated factors associated with more treatment worries. Young and middle-aged adults reported similar decision-making preferences (p = 0.80) and roles relative to physicians (p = 0.36). Although family involvement was similar in the age groups (p = 0.21), young adults were more likely to have dependent children in the home (60% younger versus 28% middle-aged adults, p < 0.001). Young adults reported more worries about time away from family (p = 0.002), and, in unadjusted analyses, more cancer treatment-related worries (mean number of responses of 'somewhat' or 'very' worried 2.5 for younger versus 2.2 for middle-aged adults, p = 0.02.) However, in adjusted analyses, worries were associated with the presence of dependent children in the home (odds ratio [OR] 1.55, 95% CI = 1.07-2.24, p = 0.02), rather than age. Young adults involve doctors and family members in decisions at rates similar to middle-aged adults but experience more worries about time away from family. Patients with dependent children are especially likely to experience worries. Treatment decision-making strategies should be based on individual preferences and needs rather than age alone. Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd.

Psychological, social, and behavioral issues for young adults with cancer.

PubMed

Zebrack, Brad J

2011-05-15

Theories of human development suggest that, although all cancer patients experience a common set of life disruptions, they experience them differently, focus on different issues, and attach different levels of importance to different aspects of the experience depending on the time in life at which they were diagnosed. During the critical developmental transition from childhood to adulthood, older adolescents and young adults in particular have typical concerns with establishing identity, developing a positive body image and sexual identity, separating from parents, increasing involvement with peers and dating, and beginning to make decisions about careers or employment, higher education, and/or family. Accordingly, cancer-related issues such as premature confrontation with mortality, changes in physical appearance, increased dependence on parents, disruptions in social life and school/employment because of treatment, loss of reproductive capacity, and health-related concerns about the future may be particularly distressing for adolescents and young adults. Psychosocial and behavioral interventions for young adult cancer patients and survivors often involve assisting these individuals in retaining or returning to function in significant social roles, such as spouse, parent, student, worker, or friend. Successful interventions will enable these young people to overcome the detrimental impact of a health crisis and strengthen the internal and external coping resources available to them. © 2011 American Cancer Society

Impact of Cancer on Work and Education Among Adolescent and Young Adult Cancer Survivors

PubMed Central

Parsons, Helen M.; Harlan, Linda C.; Lynch, Charles F.; Hamilton, Ann S.; Wu, Xiao-Cheng; Kato, Ikuko; Schwartz, Stephen M.; Smith, Ashley W.; Keel, Gretchen; Keegan, Theresa H.M.

2012-01-01

Purpose To examine the impact of cancer on work and education in a sample of adolescent and young adult (AYA) patients with cancer. Patients and Methods By using the Adolescent and Young Adult Health Outcomes and Patient Experience Study (AYA HOPE)—a cohort of 463 recently diagnosed patients age 15 to 39 years with germ cell cancer, Hodgkin's lymphoma, non-Hodgkin's lymphoma, sarcoma, and acute lymphocytic leukemia from participating Surveillance, Epidemiology, and End Results (SEER) cancer registries—we evaluated factors associated with return to work/school after cancer diagnosis, a belief that cancer had a negative impact on plans for work/school, and reported problems with work/school after diagnosis by using descriptive statistics, χ2 tests, and multivariate logistic regression. Results More than 72% (282 of 388) of patients working or in school full-time before diagnosis had returned to full-time work or school 15 to 35 months postdiagnosis compared with 34% (14 of 41) of previously part-time workers/students, 7% (one of 14) of homemakers, and 25% (five of 20) of unemployed/disabled patients (P < .001). Among full-time workers/students before diagnosis, patients who were uninsured (odds ratio [OR], 0.21; 95% CI, 0.07 to 0.67; no insurance v employer-/school-sponsored insurance) or quit working directly after diagnosis (OR, 0.15; 95% CI, 0.06 to 0.37; quit v no change) were least likely to return. Very intensive cancer treatment and quitting work/school were associated with a belief that cancer negatively influenced plans for work/school. Finally, more than 50% of full-time workers/students reported problems with work/studies after diagnosis. Conclusion Although most AYA patients with cancer return to work after cancer, treatment intensity, not having insurance, and quitting work/school directly after diagnosis can influence work/educational outcomes. Future research should investigate underlying causes for these differences and best practices for

Survivor Fitness: An Exercise Program for Young Survivors and Patients With Cancer.

PubMed

Acevedo, Jose A

2017-04-01

Young survivors of cancer often face challenges reintegrating into their schools and communities after treatment. Maintaining a physically active lifestyle is recommended, but finding appropriate exercises that cater to their needs can be difficult. As a result, the pilot fitness program Move4Fun/Move4Fitness was developed. This 12-week basic fitness program teaches young survivors of cancer appropriate exercises and how they can exercise on their own with limited space and equipment. Participants experienced physical and mental transformations demonstrated through weight loss, building of muscle, and increased self-confidence.

Who cares for adolescents and young adults with cancer in Brazil?

PubMed

Martins, Helena T G; Balmant, Nathalie V; de Paula Silva, Neimar; Santos, Marceli de O; Reis, Rejane de S; de Camargo, Beatriz

2017-09-06

Approximately 6% of all cancers arise in adolescents and young adults. Currently, the ward type best placed to treat this patient group remains controversial. The aim of this study was to evaluate exactly where adolescents and young adults with cancer are treated in Brazil. Data were extracted from 271 Brazilian hospital-based cancer registries (2007-2011), including all five national regions (North, Northeast, Midwest, South, and Southeast). Variables included gender, age, ethnicity, National Code of Health Establishment, hospital unit state, and region. Tumors were classified according to the World Health Organization classification for adolescents and young adults with cancer. Odds ratios with 95% confidence intervals were computed by unconditional logistic regression. Most patients were managed on medical oncology wards, followed by pediatric oncology and then by non-specialist wards. Of patients aged 15-19 years, 49% were managed on pediatric wards; most of the older patients (96%; aged 20-24) were managed on adult wards. Patients were more likely to be seen in medical oncology wards as their age increased (OR=2.03 [1.98-2.09]), or if they were based in the South (OR=1.50 [1.29-1.73]). Conversely, bone tumors were less likely to be treated (decreased OR) on medical oncology wards, regardless of age, gender, and region. An elevated risk of treatment on medical oncology wards was observed for older patients and those treated in the South. Bone tumors were generally treated in pediatric oncology wards, while skin cancers were treated in medical oncology wards, regardless of age, gender, and region. Published by Elsevier Editora Ltda.

What do adolescents and young adults want from cancer resources? Insights from a Delphi panel of AYA patients.

PubMed

Cheung, Christabel K; Zebrack, Brad

2017-01-01

Cancer treatment programs and community-based support organizations are increasingly producing information and support resources geared to adolescent and young adult patients (AYAs); however, systematically-derived knowledge about user preferences for these resources is lacking. The primary purpose of this study was to generate findings from informed AYA cancer patients that resource developers can use to create products consistent with AYAs' expressed preferences for information and support. Utilizing a modified Delphi technique, AYA cancer patients identified barriers to optimal AYA cancer care, cancer resources that address their needs, and specific characteristics of cancer resources they find helpful. The Delphi panel consisted of a convenience sample of 21 patients aged 18-39 years, who were diagnosed with cancer between ages 15-39 and were no more than 8 years out from cancer treatment at the time of the study. Survey data were collected in three consecutive and iterative rounds over the course of 6 months in 2015. Findings indicated that AYA patients prefer resources that reduce feelings of loneliness, create a sense of community or belonging, and provide opportunities to meet other AYA patients. Among the top barriers to optimal cancer care, AYAs identified a lack of cancer care providers specializing in AYA care, a lack of connection to an AYA patient community, and their own lack of ability to navigate the health system. Participants also described aspects of cancer information and supportive care resources that they believe address AYAs' concerns. Information derived from this study will help developers of cancer information and support resources to better reach their intended audience. From the point of view of AYA cancer patients, optimal cancer care and utilization of information and support resources requires that cancer support programs foster meaningful connections among AYA patients. Results also suggest that patient resources should equip

Validity of self-reported fertility-threatening cancer treatments in female young adult cancer survivors.

PubMed

Roberts, Samantha C; Knight, Amber; Whitcomb, Brian W; Gorman, Jessica R; Dietz, Andrew C; Irene Su, H

2017-08-01

Detailed cancer treatment information is important to fertility and pregnancy care of female young adult cancer survivors. Accuracy of self-report of treatments that impact fertility and pregnancy is unknown. This study assessed agreement between self-report and medical records on receipt of fertility-threatening treatments. A national cohort study of female young adult cancer survivors reported cancer treatments via Web-based questionnaires. Primary cancer treatment records were abstracted. Self-reported exposure to fertility-threatening therapies (alkylating chemotherapy, stem cell transplant, pelvic radiation, hysterectomy, and/or oophorectomy) was compared to medical records. Logistic regression models estimated odds ratios (OR) for characteristics associated with inaccurate self-report of fertility-threatening therapies. The study included 101 survivors (mean age 28.2, SD 6.3). Lymphoma (33%), breast cancer (26%), and gynecologic cancers (10%) were the most common cancers. Accuracy of self-report was 68% for alkylating chemotherapy and 92-97% for radiation, surgery, and transplant. Significant proportions of survivors who were treated with transplant (8/13, 62%), alkylating chemotherapy (18/43, 42%), pelvic radiation (4/13, 31%), or hysterectomy and/or oophorectomy (3/13, 23%) did not report undergoing these therapies. In adjusted analysis, age ≤ 25 at diagnosis (OR 3.4, 95% CI 1.3-8.7) and recurrence (OR 6.0, 95% CI 1.5-24.4) were related to inaccurate self-report. Female young adult cancer survivors have limited recall of fertility-threatening cancer treatment exposures. Reproductive health providers and researchers who need this information may require primary medical records or treatment summaries. Additional patient education regarding treatment-related reproductive risks is needed to facilitate patient engagement in survivorship. Obtaining a cancer treatment summary will help survivors communicate their prior treatment exposures to reproductive

Childhood colon cancer in a patient with ataxia telangiectasia

PubMed Central

Jo, Kyeong Min; Park, Jong Ha; Kim, Tae Oh; Jeong, Heui Jeong; Heo, Chang Min; Jang, Ji Hoon; Hur, So Chong; Jeong, Na Ri; Jeong, Su Jin; Seol, Sang Hoon; Nam, Kyung Han

2016-01-01

Background Ataxia-telangiectasia (AT) is a rare autosomal recessive disease characterized by progressive neurologic impairment and cerebellar ataxia. In addition, patients with this disease are known to have an inherent increased susceptibility to the development of cancer, predominantly hematologic malignancies. Methods We report the case of a young boy with AT from Russia, who had abdominal pain. Laboratory tests and radiologic examinations were performed to him. Results After abdominal computed tomography (CT), colonoscopy and surgical interventions, the young boy was diagnosed with colon cancer that had signet ring cell features. Conclusions It is known that the patient with AT appeared to be predisposed to various tumors, including leukemia or lymphoma, which are more common in childhood. Even if the patient with AT could have solid tumor such as stomach cancer or breast cancer, it is less likely to have colon cancer, especially signet ring cell type. Actually, no case of colon cancer has ever been reported, especially in young patient and hence, we have focused on this point and are hereby reporting this unique case. PMID:26855947

"Joven & Fuerte": Program for Young Women with Breast Cancer in Mexico - Initial Results.

PubMed

Villarreal-Garza, Cynthia; Castro-Sánchez, Andrea; Platas, Alejandra; Miaja, Melina; Mohar-Betancourt, Alejandro; Barragan-Carrillo, Regina; Fonseca, Alan; Vega, Yoatzin; Martinez-Cannon, B Alejandra; Aguilar, Dione; Bargalló-Rocha, Enrique; Cardona-Huerta, Servando; Peña-Curiel, Omar; Matus-Santoso, Juan

2017-01-01

Despite the high rates of breast cancer among young Mexican women, their special needs and concerns have not been systematically addressed. To fulfill these unsatisfied demands, we have developed "Joven & Fuerte: Program for Young Women with Breast Cancer in Mexico," the first program dedicated to the care of young breast cancer patients in Latin America, which is taking place at the National Cancer Institute of Mexico and the two medical facilities of the Instituto Tecnológico y de Estudios Superiores de Monterrey. The program was created to optimize the complex clinical and psychosocial care of these patients, enhance education regarding their special needs, and promote targeted research, as well as to replicate this program model in other healthcare centers across Mexico and Latin America. From November 2013 to February 2017, the implementation of the "Joven & Fuerte" program has delivered specialized care to 265 patients, through the systematic identification of their particular needs and the provision of fertility, genetic, and psychological supportive services. Patients and families have engaged in pedagogic activities and workshops and have created a motivated and empowered community. The program developed and adapted the first educational resources in Spanish dedicated for young Mexican patients, as well as material for healthcare providers. As for research, a prospective cohort of young breast cancer patients was established to characterize clinicopathological features and psychosocial effects at baseline and during follow-up, as a guide for the development of specific cultural interventions addressing this vulnerable group. Eventually, it is intended that the program's organization and structure can reach national and international interactions and serve as a platform for other countries.

Assessing the Quality, Feasibility, and Efficacy of Electronic Patient Platforms Designed to Support Adolescents and Young Adults With Cancer: A Systematic Review Protocol

PubMed Central

McCann, Lisa

2017-01-01

Background A range of innovative websites, mobile technologies, eHealth and mHealth platforms have emerged to support adolescents and young adults (AYAs) with cancer. Previous reviews have identified these various applications and solutions, but no review has summarized the quality, feasibility, and efficacy of existing patient platforms (inclusive of websites, mobile technologies, mHealth and eHealth platforms) developed specifically for young people with cancer. Objective This paper describes the design of a protocol to conduct a review of published studies or reports which describe or report on an existing platform designed specifically for AYAs who have had a cancer diagnosis. Methods A search string was developed using a variety of key words and Medical Subject Heading and applied to bibliographic databases. General data (sample characteristics, patient platform development, design and, if applicable, pilot testing outcomes) will be extracted from reports and studies. Drawing on a previously developed coding schematic, the identified patient platforms will be coded for mode of delivery into (1) automated functions, (2) communicative functions, and (3) use of supplementary modes. An adapted version of the Mobile App Rating Scale (MARS) will be used to assess the of quality of each identified patient platform. The methodological quality of included studies will be assessed using the Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields (QualSyst). Both authors will independently screen eligible studies for final inclusion and will both be responsible for data extraction and appraisal. Data will be synthesized narratively to provide an overview of identified patient platforms. Results The review began in October 2016 and is currently in progress. The review paper will be submitted for peer-review and publication in the summer of 2017. Conclusions This review will be unique in its focus on assessing, where possible, the

Communication About Prognosis With Adolescent and Young Adult Patients With Cancer: Information Needs, Prognostic Awareness, and Outcomes of Disclosure.

PubMed

Mack, Jennifer W; Fasciano, Karen M; Block, Susan D

2018-04-23

Purpose Communication about prognosis affects decisions patients and family members make about cancer care, and most patients say they want to know about their chances of cure. We sought to evaluate experiences with prognosis communication among adolescents and young adults (AYAs) with cancer. Patients and Methods We surveyed 203 AYAs with cancer age 15 to 29 years (response rate, 74%) treated at Dana-Farber Cancer Institute and their oncologists. Patients were approached within 6 weeks of diagnosis and asked to report on their prognosis communication preferences and experiences, their beliefs about likelihood of cure, and psychosocial outcomes of communication, such as trust (using an item from the Trust in Physician Scale), peace of mind (using select items from the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale), and anxiety and depression (using the Hospital Anxiety and Depression Scale). Oncologists were asked to report the patient's likelihood of cure. Results Most patients (83%, 167 of 203 patients) considered prognostic information to be extremely or very important. Patients who reported having received more extensive prognostic disclosure had higher odds of trust in the oncologist (odds ratio [OR], 1.30; 95% CI, 1.01 to 1.67; P = .05), peace of mind (OR, 2.13; 95% CI, 1.29 to 3.51; P = .002), and hope related to physician communication (OR, 1.27; 95% CI, 1.01 to 1.59; P = .04), after adjusting for patient sex, age, race or ethnicity, prognosis, and diagnosis. Disclosure was also associated with lower distress related to knowing about prognosis (OR, 0.65; 95% CI, 0.44 to 0.95; P = .03). However, a majority of patients (62%) reported prognostic estimates that exceeded those reported by physicians (McNemar P < .001). Conclusion Most AYAs with cancer value receiving prognostic information, which is positively associated with aspects of well-being. However, most overestimate chances of cure relative to oncologists, highlighting the

Early impact of the Patient Protection and Affordable Care Act on insurance among young adults with cancer: Analysis of the dependent insurance provision.

PubMed

Parsons, Helen M; Schmidt, Susanne; Tenner, Laura L; Bang, Heejung; Keegan, Theresa H M

2016-06-01

The Patient Protection and Affordable Care Act (ACA) included provisions to extend dependent health care coverage up to the age of 26 years in 2010. The authors examined the early impact of the ACA (before the implementation of insurance exchanges in 2014) on insurance rates in young adults with cancer, a historically underinsured group. Using National Cancer Institute Surveillance, Epidemiology, and End Results data for 18 cancer registries, the authors examined insurance rates before (pre) (January 2007-September 2010) versus after (post) (October 2010-December 2012) dependent insurance provisions among young adults aged 18 to 29 years when diagnosed with cancer during 2007 through 2012. Using multivariate generalized mixed effect models, the authors conducted difference-in-differences analysis to examine changes in overall and Medicaid insurance after the ACA among young adults who were eligible (those aged 18-25 years) and ineligible (those aged 26-29 years) for policy changes. Among 39,632 young adult cancer survivors, the authors found an increase in overall insurance rates in those aged 18 to 25 years after the dependent provisions (83.5% for pre-ACA vs 85.4% for post-ACA; P<.01), but not among individuals aged 26 to 29 years (83.4% for pre-ACA vs 82.9% for post-ACA; P = .38). After adjusting for patient sociodemographics and cancer characteristics, the authors found that those aged 18 to 25 years had a 3.1% increase in being insured compared with individuals aged 26 to 29 years (P<.01); however, there were no significant changes noted in Medicaid enrollment (P = .17). The findings of the current study identify an increase in insurance rates for young adults aged 18 to 25 years compared with those aged 26 to 29 years (1.9% vs -0.5%) that was not due to increases in Medicaid enrollment, thereby demonstrating a positive impact of the ACA dependent care provisions on insurance rates in this population. Cancer 2016;122:1766-73. © 2016 American Cancer Society. �

Emerging issues among adolescent and young adult cancer survivors.

PubMed

Patterson, Pandora; McDonald, Fiona E J; Zebrack, Brad; Medlow, Sharon

2015-02-01

To review the characteristics of cancer in the adolescence and young adult age group; the medical, psychosocial and behavioral late effects; survivorship care planning and transition; current research priorities; and practice implications. Published articles, research studies and position statements. Survivors of cancers that occurred during adolescence and young adulthood (AYA) are confronted with the dual demands of managing their transition to independent adulthood, concurrently with their transition from cancer patient to cancer survivors, with an associated reduction in support from medical services. AYA survivors also face complex medical, psychosocial and behavioral late effects, including fertility and mental health issues. An understanding of the impact of cancer diagnoses among this age group, including survivors' abilities to reintegrate into 'normal' life and potential long term consequences, is necessary to provide the best support. This care and support can be enhanced through multidisciplinary teams who work together to address the medical and psychosocial needs of AYAs diagnosed with cancer. Copyright © 2015 Elsevier Inc. All rights reserved.

Post-Traumatic Growth and Resilience in Adolescent and Young Adult Cancer Patients: An Overview.

PubMed

Greup, Suzanne R; Kaal, Suzanne E J; Jansen, Rosemarie; Manten-Horst, Eveliene; Thong, Melissa S Y; van der Graaf, Winette T A; Prins, Judith B; Husson, Olga

2018-02-01

The aim of this study was to provide an overview of the literature on post-traumatic growth (PTG) and resilience among adolescent and young adult (AYA) cancer patients. A literature search in Embase, PsychInfo, PubMed, Web of Science, Cochrane Library, and Cinahl was carried out. Thirteen articles met the pre-defined inclusion criteria. Qualitative interview studies showed that AYA cancer patients report PTG and resilience: PTG is described by AYA cancer patients in terms of benefit finding, including changing view of life and feeling stronger and more confident, whereas resilience is described as a balance of several factors, including stress and coping, goals, optimism, finding meaning, connection, and belonging. Quantitative studies showed that sociodemographic and clinical characteristics were not associated with PTG. Enduring stress was negatively, and social support positively, associated with PTG. Symptom distress and defensive coping were negatively and adaptive cognitive coping was positively associated with resilience. Both PTG and resilience were positively associated with satisfaction with life and health-related quality of life (HRQoL). Resilience was found to be a mediator in the relationship between symptom distress and HRQoL. Two interventions aiming to promote resilience, a stress management and a therapeutic music video-intervention, were not successful in significantly increasing overall resilience. Most AYA cancer patients report at least some PTG or resilience. Correlates of PTG and resilience, including symptom distress, stress, coping, social support, and physical activity, provide further insight to improve the effectiveness of interventions aimed at promoting these positive outcomes and potentially buffer negative outcomes.

The art of age-appropriate care: reflecting on a conceptual model of the cancer experience for teenagers and young adults.

PubMed

Fern, Lorna A; Taylor, Rachel M; Whelan, Jeremy; Pearce, Susie; Grew, Tom; Brooman, Katie; Starkey, Carol; Millington, Hannah; Ashton, James; Gibson, Faith

2013-01-01

There is recognition that teenagers and young adults with cancer merit age-appropriate specialist care. However, outcomes associated with such specialist care are not defined. Patient experience and patient-reported outcomes such as quality of life are gaining importance. Nevertheless, there is a lack of theoretical basis and patient involvement in experience surveys for young people. We previously proposed a conceptual model of the lived experience of cancer. We aimed to refine this model adding to areas that were lacking or underreported. The proposed conceptual framework will inform a bespoke patient experience survey for young people. Using participatory research, 11 young people aged 13 to 25 years at diagnosis, participated in a 1-day workshop consisting of semistructured peer-to-peer interviews. Eight core themes emerged: impact of cancer diagnosis, information provision, place of care, role of health professionals, coping, peers, psychological support, and life after cancer. The conceptual framework has informed survey development for a longitudinal cohort study examining patient experience and outcomes associated with specialist cancer care. Young people must be kept at the center of interactions in recognition of their stated needs of engagement, of individually tailored information and support unproxied by parents/family. Age-appropriate information and support services that help young people deal with the impact of cancer on daily life and life after cancer must be made available. If we are to develop services that meet need, patient experience surveys must be influenced by patient involvement. Young people can be successfully involved in planning research relevant to their experience.

Screening for thyroid cancer in survivors of childhood and young adult cancer treated with neck radiation.

PubMed

Tonorezos, Emily S; Barnea, Dana; Moskowitz, Chaya S; Chou, Joanne F; Sklar, Charles A; Elkin, Elena B; Wong, Richard J; Li, Duan; Tuttle, R Michael; Korenstein, Deborah; Wolden, Suzanne L; Oeffinger, Kevin C

2017-06-01

The optimal method of screening for thyroid cancer in survivors of childhood and young adult cancer exposed to neck radiation remains controversial. Outcome data for a physical exam-based screening approach are lacking. We conducted a retrospective review of adult survivors of childhood and young adult cancer with a history of neck radiation followed in the Adult Long-Term Follow-Up Clinic at Memorial Sloan Kettering between November 2005 and August 2014. Eligible patients underwent a physical exam of the thyroid and were followed for at least 1 year afterwards. Ineligible patients were those with prior diagnosis of benign or malignant thyroid nodules. During a median follow-up of 3.1 years (range 0-9.4 years), 106 ultrasounds and 2277 physical exams were performed among 585 patients. Forty survivors had an abnormal thyroid physical exam median of 21 years from radiotherapy; 50% of those with an abnormal exam were survivors of Hodgkin lymphoma, 60% had radiation at ages 10-19, and 53% were female. Ultimately, 24 underwent fine needle aspiration (FNA). Surgery revealed papillary carcinoma in seven survivors; six are currently free of disease and one with active disease is undergoing watchful waiting. Among those with one or more annual visits, representing 1732 person-years of follow-up, no cases of thyroid cancer were diagnosed within a year of normal physical exam. These findings support the application of annual physical exam without routine ultrasound for thyroid cancer screening among survivors with a history of neck radiation. Survivors with a history of neck radiation may not require routine thyroid ultrasound for thyroid cancer screening. Among adult survivors of childhood and young adult cancer with a history of radiation therapy to the neck, annual physical exam is an acceptable thyroid cancer screening strategy.

Colorectal cancer outcomes and treatment patterns in patients too young for average-risk screening.

PubMed

Abdelsattar, Zaid M; Wong, Sandra L; Regenbogen, Scott E; Jomaa, Diana M; Hardiman, Karin M; Hendren, Samantha

2016-03-15

Although colorectal cancer (CRC) screening guidelines recommend initiating screening at age 50 years, the percentage of cancer cases in younger patients is increasing. To the authors' knowledge, the national treatment patterns and outcomes of these patients are largely unknown. The current study was a population-based, retrospective cohort study of the nationally representative Surveillance, Epidemiology, and End Results registry for patients diagnosed with CRC from 1998 through 2011. Patients were categorized as being younger or older than the recommended screening age. Differences with regard to stage of disease at diagnosis, patterns of therapy, and disease-specific survival were compared between age groups using multinomial regression, multiple regression, Cox proportional hazards regression, and Weibull survival analysis. Of 258,024 patients with CRC, 37,847 (15%) were aged <50 years. Young patients were more likely to present with regional (relative risk ratio, 1.3; P<.001) or distant (relative risk ratio, 1.5; P<.001) disease. Patients with CRC with distant metastasis in the younger age group were more likely to receive surgical therapy for their primary tumor (adjusted probability: 72% vs 63%; P<.001), and radiotherapy also was more likely in younger patients with CRC (adjusted probability: 53% vs 48%; P<.001). Patients younger than the recommended screening age had better overall disease-specific survival (hazards ratio, 0.77; P<.001), despite a larger percentage of these individuals presenting with advanced disease. Patients with CRC diagnosed at age <50 years are more likely to present with advanced-stage disease. However, they receive more aggressive therapy and achieve longer disease-specific survival, despite the greater percentage of patients with advanced-stage disease. These findings suggest the need for improved risk assessment and screening decisions for younger adults. © 2016 American Cancer Society.

Delays in diagnosis of young females with symptomatic cervical cancer in England: an interview-based study

PubMed Central

Lim, Anita W; Ramirez, Amanda J; Hamilton, William; Sasieni, Peter; Patnick, Julietta; Forbes, Lindsay JL

2014-01-01

Background Diagnosis may be delayed in young females with cervical cancer because of a failure to recognise symptoms. Aim To examine the extent and determinants of delays in diagnosis of young females with symptomatic cervical cancer. Design and setting A national descriptive study of time from symptoms to diagnosis of cervical cancer and risk factors for delay in diagnosis at all hospitals diagnosing cervical cancer in England. Method One-hundred and twenty-eight patients <30 years with a recent diagnosis of cervical cancer were interviewed. Patient delay was defined as ≥3 months from symptom onset to first presentation and provider delay as ≥ 3 months from first presentation to diagnosis. Results Forty (31%) patients had presented symptomatically: 11 (28%) delayed presentation. Patient delay was more common in patients <25 than patients aged 25–29 (40% versus 15%, P = 0.16). Vaginal discharge was more common among patients who delayed presentation than those who did not; many reported not recognising this as a possible cancer symptom. Provider delay was reported by 24/40 (60%); in some no report was found in primary care records of a visual inspection of the cervix and some did not re-attend after the first presentation for several months. Gynaecological symptoms were common (84%) among patients who presented via screening. Conclusions Young females with cervical cancer frequently delay presentation, and not recognising symptoms as serious may increase the risk of delay. Delay in diagnosis after first presentation is also common. There is some evidence that UK guidelines for managing young females with abnormal bleeding are not being followed. PMID:25267045

Prostate cancer in young adults-Seventeen-year clinical experience of a single center.

PubMed

Huang, Tzu-Hao; Kuo, Junne-Yih; Huang, Yi-Hsiu; Chung, Hsiao-Jen; Huang, William J S; Wu, Howard H H; Chang, Yen-Hwa; Lin, Alex T L; Chen, Kuang-Kuo

2017-01-01

In the general population, prostate adenocarcinoma affects predominately older men. If fact, most current guidelines suggest that males over the age of 50 years should undergo prostate cancer screening. However, the clinical behavior and prognosis of prostate cancer in young adults is not well defined. The aim of this study was to evaluate the clinical behavior, pathological characteristics, and prognosis of prostate cancer in young adults. We retrospectively reviewed the records of young patients (age, ≤50 years) in our hospital with prostate adenocarcinoma between 1997 and 2013. We compared data including initial presentation, cancer cell type, Gleason score, disease stage, prostate-specific antigen (PSA) level, prostate volume, treatment, and survival between patients both younger and older than 50 years. Data were analyzed using the Kaplan-Meier method to assess survival. Twenty-six patients were enrolled in our study, accounting for 0.55% of all patients with a diagnosis of prostate cancer at our facility. All 26 patients had a pathology diagnosis of adenocarcinoma, with a mean age on diagnosis of 46.8±2.8 years (range, 39-50 years). On initial presentation, patients older than 50 years more frequently displayed lower urinary tract symptoms (LUTS) than younger patients (62.3% vs. 30.4%, p=0.008). There was no statistical difference in histological grade, disease stage, PSA level, overall survival, and biochemical-free survival between the two groups. The result of our investigation indicated that prostate adenocarcinoma patients younger than 50 years had similar histological grade, disease stage, PSA level, overall survival, and biochemical-free survival as the older population. However, patients younger than 50 years with prostate cancer less frequently showed initial symptoms of LUTS. Copyright © 2016. Published by Elsevier Taiwan LLC.

The Patient Protection and Affordable Care Act dependent coverage expansion: Disparities in impact among young adult oncology patients.

PubMed

Alvarez, Elysia M; Keegan, Theresa H; Johnston, Emily E; Haile, Robert; Sanders, Lee; Wise, Paul H; Saynina, Olga; Chamberlain, Lisa J

2018-01-01

Private health insurance is associated with improved outcomes in patients with cancer. However, to the authors' knowledge, little is known regarding the impact of the Patient Protection and Affordable Care Act Dependent Coverage Expansion (ACA-DCE), which extended private insurance to young adults (to age 26 years) beginning in 2010, on the insurance status of young adults with cancer. The current study was a retrospective, population-based analysis of hospitalized young adult oncology patients (aged 22-30 years) in California during 2006 through 2014 (11,062 patients). Multivariable regression analyses examined factors associated with having private insurance. Results were presented as adjusted odds ratios and 95% confidence intervals. A difference-in-difference analysis examined the influence of the ACA-DCE on insurance coverage by race/ethnicity and federal poverty level. Multivariable regression demonstrated that patients of black and Hispanic race/ethnicity were less likely to have private insurance before and after the ACA-DCE, compared with white patients. Younger age (22-25 years) was associated with having private insurance after implementation of the ACA-DCE (odds ratio, 1.20; 95% confidence interval, 1.06-1.35). In the difference-in-difference analysis, private insurance increased among white patients aged 22 to 25 years who were living in medium-income (2006-2009: 64.6% vs 2011-2014: 69.1%; P = .003) and high-income (80.4% vs 82%; P = .043) zip codes and among Asians aged 22 to 25 years living in high-income zip codes (73.2 vs 85.7%; P = .022). Private insurance decreased for all Hispanic patients aged 22 to 25 years between the 2 time periods. The ACA-DCE provision increased insurance coverage, but not among all patients. Private insurance increased for white and Asian patients in higher income neighborhoods, potentially widening social disparities in private insurance coverage among young adults with cancer. Cancer 2018;124:110-7. © 2017 American

Defining Young in the Context of Prostate Cancer

PubMed Central

Lowe, Anthony; Hyde, Melissa K.; Zajdlewicz, Leah; Gardiner, Robert A.; Sandoe, David; Dunn, Jeff

2015-01-01

The experience of prostate cancer is for most men a major life stress with the psychological burden of this disease falling more heavily on those who are younger. Despite this, being young as it applies to prostate cancer is not yet clearly defined with varied chronological approaches applied. However, men’s responses to health crises are closely bound to life course and masculinities from which social roles emerge. This paper applied qualitative methodology (structured focus groups and semistructured interviews with expert informants) using interpretative phenomenological analysis to define what it means to be young and have prostate cancer. Structured focus groups were held with 26 consumer advisors (men diagnosed with prostate cancer who provide support to other men with prostate cancer or raise community awareness) and health professionals. As well, 15 men diagnosed with prostate cancer and in their 40s, 50s, or 60s participated in semi-structured interviews. Participants discussed the attributes that describe a young man with prostate cancer and the experience of being young and diagnosed with prostate cancer. Chronological definitions of a young man were absent or inconsistent. Masculine constructions of what it means to be a young man and life course characteristics appear more relevant to defining young as it applies to prostate cancer compared with chronological age. These findings have implications for better understanding the morbidities associated with this illness, and in designing interventions that are oriented to life course and helping young men reconstruct their identities after prostate cancer. PMID:24780936

Barriers to rehabilitative care for young breast cancer survivors: a qualitative understanding.

PubMed

Miedema, Baukje; Easley, Julie

2012-06-01

The goal of this study was to assess the rehabilitation needs of young women breast cancer survivors under the age of 50 and to identify factors that may impact or prevent cancer rehabilitation utilization. Utilizing a grounded theory methodology, 35 young breast cancer survivors were interviewed twice in four Atlantic Canadian provinces. A considerable number of barriers exist to receiving rehabilitative care post-treatment for young breast cancer survivors. The systemic barriers include the lack of availability of services, travel issues, cost of services, and the lack of support to address the unique needs for this age group. However, the most complicated barriers to accessing rehabilitative care were personal barriers which related more to choice and circumstances, such as the lack of time due to family responsibilities and appointment fatigue. Many of these personal barriers were rooted in the complex set of gender roles of young women as patients, mothers, workers, and caregivers. The contexts of young women's lives can have a substantial impact on their decisions to seek and receive rehabilitative care after breast cancer treatment. The systemic barriers can be reduced by introducing more services or financial assistance; however, the personal barriers to rehabilitation services are difficult to ameliorate due to the complex set of roles within and outside the family for this group of young breast cancer survivors. Health care providers need to take into consideration the multiple contexts of women's lives when developing and promoting breast cancer rehabilitation services and programs.

Prevalence and impact of severe fatigue in adolescent and young adult cancer patients in comparison with population-based controls.

PubMed

Poort, Hanneke; Kaal, Suzanne E J; Knoop, Hans; Jansen, Rosemarie; Prins, Judith B; Manten-Horst, Eveliene; Servaes, Petra; Husson, Olga; van der Graaf, Winette T A

2017-09-01

The current study determined the prevalence of severe fatigue in adolescent and young adult (AYA) cancer patients (aged 18-35 years at diagnosis) consulting a multidisciplinary AYA team in comparison with gender- and age-matched population-based controls. In addition, impact of severe fatigue on quality of life and correlates of fatigue severity were examined. AYAs with cancer (n = 83) completed questionnaires including the Checklist Individual Strength (CIS-fatigue), Quality of Life (QoL)-Cancer Survivor, Hospital Anxiety and Depression Scale (reflecting psychological distress), and the Cancer Worry Scale (reflecting fear of cancer recurrence or progression). The vast majority of participants had been treated with chemotherapy (87%) and had no active treatment at the time of participation (73.5%). Prevalence of severe fatigue (CIS-fatigue score ≥35) in AYAs with cancer (48%, n = 40/83) was significantly higher in comparison with matched population-based controls (20%, n = 49/249; p < .001). Severely fatigued AYAs with cancer reported lower QoL compared to non-severely fatigued AYAs with cancer (p < .05). Female gender, being unemployed, higher disease stage (III-IV) at diagnosis, receiving active treatment at the time of study participation, being treated with palliative intent, having had radiotherapy, higher fear of recurrence or progression, and higher psychological distress were significantly correlated with fatigue severity (p < .05). Severe fatigue based on a validated cut-off score was highly prevalent in this group of AYAs with cancer. QoL is significantly affected by severe fatigue, stressing the importance of detection and management of this symptom in those patients affected by a life-changing diagnosis of cancer in late adolescence or young adulthood.

Depression in adolescents and young adults with cancer

PubMed Central

Park, Eliza M.; Rosenstein, Donald L.

2015-01-01

Adolescents and young adults (AYAs) with cancer are at risk for depression due to disruptions in their developmental trajectory, greater physical symptom burden, and increased likelihood of developing aggressive disease. Rates of depression and other psychological disorders are substantially higher in AYAs with cancer when compared with older adults. Psychiatrists caring for these patients must consider the age-appropriate developmental context of these patients along with familial and medical factors that may influence the presentation and treatment of depression. Previous research suggests that psychosocial interventions specifically designed for AYA patients are promising, but studies of psychopharmacology treatments for depression are lacking. There is a pressing need for prospective studies and controlled clinical trials that evaluate the optimal strategies for treating depression in this patient group. PMID:26246791

A review of mobile applications to help adolescent and young adult cancer patients

PubMed Central

Wesley, Kimberly M; Fizur, Philip J

2015-01-01

Objective To review research articles utilizing mobile applications with adolescent and young adult (AYA) cancer patients. Materials and methods We identified articles via online searches and reference lists (eg, PsycInfo, PubMed). Articles were reviewed by two study team members for target population, stated purpose, technological utilization, sample size, demographic characteristics, and outcome data. Strengths and weaknesses of each study were described. Results Of 19 identified manuscripts, six met full inclusion criteria for this review (four smartphone applications and two tablet applications). One additional article that included an application not specific to oncology but included AYA patients with cancer within the target sample was also reviewed. Uses of these applications included symptom tracking, pain management, monitoring of eating habits following bone marrow transplant, monitoring of mucositis, and improving medication management. Utility results from pilot studies are presented. Conclusion Mobile applications are growing in number and increasingly available to AYAs with and without chronic illness. These applications may prove useful in helping to support AYAs throughout their cancer treatment and beyond. However, few applications provide empirical data supporting their utility. Numerous strengths and benefits of these applications include increased accessibility to educational resources and self-management strategies, more frequent physical and emotional symptom tracking, and increased access to peer support. Despite these strengths, numerous limitations are identified, highlighting the need for future research in this area. PMID:26316835

Study protocol for Young & Strong: a cluster randomized design to increase attention to unique issues faced by young women with newly diagnosed breast cancer.

PubMed

Greaney, Mary L; Sprunck-Harrild, Kim; Ruddy, Kathryn J; Ligibel, Jennifer; Barry, William T; Baker, Emily; Meyer, Meghan; Emmons, Karen M; Partridge, Ann H

2015-01-31

Each year, approximately 11% of women diagnosed with breast cancer in the United States are 45 years of age or younger. These women have concerns specific to or accentuated by their age, including fertility-related concerns, and have higher rates of psychosocial distress than women diagnosed at older ages. Current guidelines recommend that fertility risks be considered early in all treatment plans; however, the extant research indicates that attention to fertility by the healthcare team is limited. Importantly, attention to fertility may be a proxy for whether or not other important issues warranting attention in younger women with breast cancer are addressed, including genetic risks, psychosocial distress, sexual functioning, and body image concerns. The Young & Strong study tests the efficacy of an intervention designed for young women recently diagnosed with breast cancer and their oncologists with the intention to: 1) increase attention to fertility as an important surrogate for other issues facing young women, 2) educate and support young women and their providers, and 3) reduce psychosocial distress among young women with breast cancer. The study employs a cluster randomized design including 14 academic institutions and 40 community sites across the U.S. assigned to either the study intervention arm or contact-time comparison intervention arm. Academic institutions enroll up to 15 patients per site while community sites enroll up to 10 patients. Patient eligibility requirements include: an initial diagnosis of stage I-III invasive breast cancer within three months prior, without a known recurrence or metastatic breast cancer; 18-45 years of age at diagnosis; ability to read and write in English. The primary outcome is oncologists' attention to fertility concerns as determined by medical record review. Secondary outcomes include differences in patient satisfaction with care and psychosocial distress between the two study arms. Study findings will provide

Young adult cancer survivors and work: a systematic review.

PubMed

Stone, Dawn S; Ganz, Patricia A; Pavlish, Carol; Robbins, Wendie A

2017-12-01

Sixty-three percent of cancer survivors continue to work, or return to work after treatment. Among this population, work ability and challenges encountered in the workplace by young adult cancer survivors have not been well established. The purposes of the study are to describe what is currently known about work-related issues for young adult cancer survivors diagnosed between ages 15 and 39, to identify gaps in the research literature, and to suggest interventions or improvements in work processes and occupational settings. A narrative review of articles using PubMed, CINAHL, and PsychInfo was conducted without date limitations. Search phrases included young adult cancer survivors, long-term cancer survivors, young adults affected by cancer, further combined with key terms employment, work, and occupationally active. Inclusion criteria for publications were young adult cancer survivors initially diagnosed between the ages of 15 and 39, data about work or employment was presented, and articles written in English. Twenty-three publications met the inclusion criteria. Work-related issues included the potential for reduced work productivity from cancer-changed physical and cognitive functional ability that affected income, and resulted in distress. Coping style, support systems, and changing perspectives about work and life in general were also influential on career decisions among young adult cancer survivors. More research is needed to study interventions to better manage health changes in young adult cancer survivors within the context of the workplace. Since financial hardship has been shown to be especially high among young cancer survivors, employment is essential to ensure payment of cancer-associated costs and continued medical care. While young adult cancer survivors may initially grapple with cancer-related physical and psychosocial changes that impact work productivity or influence choice of occupation, employment appears to enhance overall quality of life.

Nursing young people with cancer: What is "different" about it?

PubMed

Morgan, Sue; Soanes, Louise

2016-12-01

Nursing Adolescents and Young Adults (AYA) with cancer is a relatively new specialty, with much work having been undertaken across Europe. As this evolving specialty develops, nurses are required to develop networks, learn from each other and help to shape services across countries. Describing the cancer journey, this paper looks at the literature and, merging it with over 20years of experience, describes 'what is different' about looking after this group of young people. Looking at the specific issues about caring for AYA, including those issues that are pertinent in this age range: i.e. education/employment, fertility, body image, peers, family relationships, it discusses the development of specific services for this cohort of patients; one that is centred around the young person and their friends and families. Taking into account the need to develop multidisciplinary teams, it also highlights the needs of nurses who work in these teams, the education, skills and attributes needed to develop gold standard services for these challenging young people. The further development of nursing networks internationally is urged in order to share practice and expertise, nurture teams and bring the AYA with cancer into sharp focus. Copyright © 2016 Société Française du Cancer. All rights reserved.

Breast cancer in young women in a limited-resource environment.

PubMed

Basro, Sarinah; Apffelstaedt, Justus P

2010-07-01

Despite the higher incidence of breast cancer in young women in developing countries, there is a paucity of data on their management. We present the clinicopathological features and outcome of treatment of women 35 years or younger with breast cancer in a resource-restricted environment. A total of 141 patients who were diagnosed with primary breast cancer at 35 years or younger from January 2000 to June 2008 were retrieved from the cancer registry of a breast clinic at a tertiary hospital and a private breast health center in South Africa. Clinicopathological features, treatment, and survival were analyzed. Two patients presented with TNM stage 0 (1.4%), 14 with stage I (9.9%), 47 with stage II (33.35%), 47 with stage III (33.3%), and 31 with stage IV (21.9%). Tumor grade was 3 in 47%, grade 2 in 37%, and grade 1 in 16% of patients. One hundred and four patients with stage 0-III disease underwent treatment with curative intent, 83 had a mastectomy, and 12 had breast-conserving surgery. Ninety patients (86.5%) had chemotherapy, 68 (65.4%) had radiotherapy, and 50 (48.1%) had hormonal therapy. Of 93 patients who completed primary therapy, 4 developed contralateral cancers, 3 had locoregional recurrence, 8 developed synchronous locoregional and distant recurrence, and 19 relapsed with distant metastasis only. The 2-year disease-free and overall survival for stage 0-III disease was 48 and 56%, respectively. Young women with breast cancer in a resource-limited environment have similar adverse clinicopathological features to those in developed countries. Their disease is more advanced at presentation with poorer outcome. Increased awareness, better systemic therapy, and more comprehensive genetic studies are essential to improve the dismal outcome.

Young Women with Breast Cancer: A Focus Group Study of Unmet Needs.

PubMed

Ruddy, Kathryn J; Greaney, Mary L; Sprunck-Harrild, Kim; Meyer, Meghan E; Emmons, Karen M; Partridge, Ann H

2013-12-01

Purpose: Young women with breast cancer suffer distress both at the time of diagnosis and afterwards. This study aimed to elucidate which issues are most disturbing to this population and which might be amenable to intervention. Methods: English-speaking women treated or involved in research at the Dana-Farber Cancer Institute for stage I-III breast cancer while aged 18-42 years were invited to participate in one of four focus groups. A trained moderator led each 90-minute audio-recorded group using a semi-structured interview guide. All transcripts were coded using thematic content analysis with NVivo software. Results: Thirty-six women participated. Three major themes emerged from the analyses of these focus groups' data: (1) participants felt different from older breast cancer patients with regard to relationships, fertility, menopausal symptoms, treatment side effects, and work/finances; (2) participants faced unique challenges transitioning into the survivorship phase of care; and (3) participants desired assistance, including connections with other young patients, help navigating the healthcare system, educational materials, and lists of appropriate counselors. Conclusion: Young women with breast cancer have unmet needs for psychosocial support, education, and symptom management, and can identify potential support that may help meet these needs.

Development of a Self-Help Web-Based Intervention Targeting Young Cancer Patients With Sexual Problems and Fertility Distress in Collaboration With Patient Research Partners.

PubMed

Winterling, Jeanette; Wiklander, Maria; Obol, Claire Micaux; Lampic, Claudia; Eriksson, Lars E; Pelters, Britta; Wettergren, Lena

2016-04-12

The Internet should be suitable for delivery of interventions targeting young cancer patients. Young people are familiar with the technologies, and this patient group is small and geographically dispersed. Still, only few psycho-educational Web-based interventions are designed for this group. Young cancer patients consider reproductive health, including sexuality, an area of great importance and approximately 50% report sexual problems and fertility-related concerns following cancer treatment. Therefore, we set out to develop a self-help Web-based intervention, Fex-Can, to alleviate such problems. To improve its quality, we decided to involve patients and significant others as research partners. The first 18 months of our collaboration are described in this paper. The intervention will subsequently be tested in a feasibility study followed by a randomized controlled trial. The study aims to describe the development of a Web-based intervention in long-term collaboration with patient research partners (PRPs). Ten former cancer patients and two significant others participated in building the Web-based intervention, using a participatory design. The development process is described according to the design step in the holistic framework presented by van Gemert-Pijnen et al and evaluates the PRPs' impact on the content, system, and service quality of the planned intervention. The collaboration between the research group and the PRPs mainly took place in the form of 1-day meetings to develop the key components of the intervention: educational and behavior change content, multimedia (pictures, video vignettes, and audios), interactive online activities (eg, self-monitoring), and partial feedback support (discussion forum, tailored feedback from experts). The PRPs influenced the intervention's content quality in several ways. By repeated feedback on prototypes, the information became more comprehensive, relevant, and understandable. The PRPs gave suggestions concerning the

Alcohol use assessment in young adult cancer survivors.

PubMed

Breitenbach, Katherine; Epstein-Reeves, Marc; Hacker, Eileen; Corte, Colleen; Piano, Mariann R

2014-09-01

To determine whether oncology practitioners assess for alcohol consumption rates and usage patterns among young adult cancer survivors, and to determine drinking patterns and frequency of alcoholic beverage consumption among young adult cancer survivors. Retrospective chart review. Two outpatient cancer clinics. 77 young adult survivors of childhood cancer aged 18-30 years. Charts were selected from June to December 2009 and data were extracted using a structured questionnaire. Oncology practitioner assessment of alcohol use and alcohol consumption of young adult cancer survivors. Alcohol screening was conducted for 48 participants. No significant differences were noted in most variables between those not screened for alcohol use and those screened for alcohol use. Of the 48 screened for alcohol use, 30 reported "no use." For the 18 who reported alcohol use, the terms used to describe the frequency varied and were vague. The key finding of the study was that screening and documentation of alcohol consumption was poorly and inconsistently performed in the authors' sample of young adult cancer survivors. Similar to healthy young adults aged 18-30 years, young adult cancer survivors are at a developmental age where it is likely they will engage in unhealthy drinking; therefore, they should be screened for alcohol use and binge drinking. Practitioners can incorporate simple, short questions into health assessment visits that allow them to screen for unhealthy alcohol use.

Young breast cancer patients' involvement in treatment decisions: the major role played by decision-making about surgery.

PubMed

Seror, Valérie; Cortaredona, Sébastien; Bouhnik, Anne-Deborah; Meresse, Mégane; Cluze, Camille; Viens, Patrice; Rey, Dominique; Peretti-Watel, Patrick

2013-11-01

The objective of this study is to investigate young breast cancer patients' preferred and actual involvement in decision-making about surgery, chemotherapy, and adjuvant endocrine therapy (AET). A total of 442 women aged 18-40 years at the time of the diagnosis participated in the region-wide ELIPPSE40 cohort study (southeastern France). Logistic regression analyses were performed on various factors possibly affecting patients' preferred and perceived involvement in the decisions about their cancer treatment. The women's mean age was 36.8 years at enrollment. Preference for a fully passive role in decision-making was stated by 20.7% of them. It was favored by regular breast surveillance (p = 0.04) and positive experience of being informed about cancer diagnosis (p = 0.02). Patients' preferences were independently associated with their reported involvement in decision-making about surgery (p = 0.01). A fully passive role in decision-making about chemotherapy and AET was more likely to be reported by patients who perceived their involvement in decision-making about surgery as having been fully passive (adjusted odds ratio = 4.8, CI95% [2.7-8.7], and adjusted odds ratio = 9.8, CI95% [3.3-29.2], respectively). This study shows a significant relationship between the use of antidepressants and involvement in decision-making about surgery, and confirms the relationship between impaired quality of life (in the psychological domain) and a fully passive role in decisions about cancer treatment. Patients' involvement in decision-making about chemotherapy and AET was strongly influenced by their experience of decision-making about surgery, regardless of their tumor stage and history of breast or ovarian cancer. When decisions are being made about surgery, special attention should be paid to facilitating breast cancer patients' involvement in the decision-making. Copyright © 2013 John Wiley & Sons, Ltd.

"Cancer sucks," and other ponderings by adolescent and young adult cancer survivors.

PubMed

Zebrack, Brad; Kent, Erin E; Keegan, Theresa H M; Kato, Ikuko; Smith, Ashley Wilder

2014-01-01

As part of the National Cancer Institute's AYA HOPE study, 296 adolescent and young adults (AYAs) completed an open-ended survey item asking them to describe their medical care or experience with cancer. Patient, provider, and system-level characteristics all appear to influence AYAs' perceptions of their medical care. Participants attributed levels of satisfaction with care to the availability and communication of information, the management of side-effects, and the expediency and flexibility of treatments. Struggles with health insurance and finances were evident. Findings contribute to a better understanding of AYAs' cancer treatment experiences and will inform improvements to oncology care for this population.

Breast Cancer in Young Women in Latin America: An Unmet, Growing Burden

PubMed Central

Aguila, Christian; Magallanes-Hoyos, Maria C.; Mohar, Alejandro; Bargalló, Enrique; Meneses, Abelardo; Cazap, Eduardo; Gomez, Henry; López-Carrillo, Lizbeth; Chávarri-Guerra, Yanin; Murillo, Raúl; Barrios, Carlos

2013-01-01

Background. Breast cancer (BC) is the leading cause of malignancy-related deaths among women aged ≤45 years. There are unexplored and uncertain issues for BC in this particular group in Latin America. The aim of this study is to evaluate BC incidence and mortality among young women and related clinicopathological and survivorship aspects in this region. Materials and Methods. Data were obtained from Globocan 2008 and the International Agency for Research on Cancer's Cancer Incidence in Five Continents series plus databases. We requested collaboration from the 12 different national cancer institutes in Latin America through SLACOM, the Latin American and Caribbean Society of Medical Oncology, and conducted a systematic literature review to obtain local data regarding the prevalence of BC among young women and their characteristics, outcomes, and survivorship-related issues. Results. BC incidence and mortality proportions for Latin American women aged <44 years were higher when compared with those of developed countries (20% vs. 12% and 14% vs. 7%, respectively). We found only a few Latin American series addressing this topic, and prevalence varied between 8% and 14%. Stage II and III disease, high histological grade, and triple-negative and HER2 BC were features frequently observed among young Latin American BC patients. Conclusion. The rising incidence and mortality of BC in young Latin American women is a call to action in the region. It is necessary to monitor the epidemiological and clinical data through reliable cancer registries and to consider the implementation of protocols for education of patients and health professionals. This unmet, growing burden must be considered as a top priority of the national programs in the fight against BC, and models of specialized units should be implemented for this particular group of patients to provide better care for this emergent challenge. PMID:24277771

Prognosis for Survival of Young Women with Breast Cancer by Quantitative p53 Immunohistochemistry

PubMed Central

Axelrod, David E.; Shah, Kinsuk; Yang, Qifeng; Haffty, Bruce G.

2015-01-01

p53 protein detected immunohistochemically has not been accepted as a biomarker for breast cancer patients because of disparate reports of the relationship between the amount of p53 protein detected and patient survival. The purpose of this study was to determine experimental conditions and methods of data analysis for which p53 stain intensity could be prognostic for survival of young breast cancer patients. A tissue microarray of specimens from 93 patients was stained with anti-p53 antibody, and stain intensity measured with a computer-aided image analysis system. A cut-point at one standard deviation below the mean of the distribution of p53 stain intensity separated patients into two groups with significantly different survival. These results were confirmed by Quantitative Nuclear Grade determined by DNA-specific Feulgen staining. P53 provided information beyond ER and PR status. Therefore, under the conditions reported here, p53 protein can be an effective prognostic factor for young breast cancer patients. PMID:26322145

Palliative care for adolescents and young adults with cancer

PubMed Central

Rosenberg, Abby R; Wolfe, Joanne

2017-01-01

Adolescents and young adults (AYAs) with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the total care of a patient, regardless of his or her disease status, and aims to improve quality of life by controlling symptoms and alleviating physical, social, psychological, and spiritual suffering. Integrating palliative care into standard oncology practice for AYAs is therefore valuable, if not imperative, in improving their overall cancer experience. In this review, we aimed to describe the scope, benefits, and challenges of palliative care for AYA oncology patients. We provide a broad impression of the existing literature describing or investigating palliative care in this population. Put together, the evidence suggests that palliative care is not only needed, but can also be critically beneficial to patients, families, and health care professionals alike. As we increase public and professional awareness of the needs and applications of palliative care for AYA patients with cancer, we will ultimately enable better psychosocial outcomes of the AYA patients and their larger communities. PMID:21523753

Impact of Young Age on Treatment Efficacy and Safety in Advanced Colorectal Cancer: A Pooled Analysis of Patients From Nine First-Line Phase III Chemotherapy Trials

PubMed Central

Blanke, Charles D.; Bot, Brian M.; Thomas, David M.; Bleyer, Archie; Kohne, Claus-Henning; Seymour, Matthew T.; de Gramont, Aimery; Goldberg, Richard M.; Sargent, Daniel J.

2011-01-01

Purpose Colorectal cancer predominantly occurs in the elderly, but approximately 5% of patients are 50 years old or younger. We sought to determine whether young age is prognostic, or whether it influences efficacy/toxicity of chemotherapy, in patients with advanced disease. Methods We analyzed individual data on 6,284 patients from nine phase III trials of advanced colorectal cancer (aCRC) that used fluorouracil-based single-agent and combination chemotherapy. End points included progression-free survival (PFS), overall survival (OS), response rate (RR), and grade 3 or worse adverse events. Stratified Cox and adjusted logistic-regression models were used to test for age effects and age-treatment interactions. Results A total of 793 patients (13%) were younger than 50 years old; 188 of these patients (3% of total patients) were younger than 40 years old. Grade 3 or worse nausea (10% v 7%; P = .01) was more common, and severe diarrhea (11% v 14%; P = .001) and neutropenia (23% v 26%; P < .001) were less common in young (younger than 50 years) than in older (older than 50 years) patients. Age was prognostic for PFS, with poorer outcomes occurring in those younger than 50 years (median, 6.0 v 7.5 months; hazard ratio, 1.10; P = .02), but it did not affect RR or OS. In the subset of monotherapy versus combination chemotherapy trials, the relative benefits of multiagent chemotherapy were similar for young and older patients. Results were comparable when utilizing an age cut point of 40 years. Conclusion Young age is modestly associated with poorer PFS but not OS or RR in treated patients with aCRC, and young patients have more nausea but less diarrhea and neutropenia with chemotherapy in general. Young versus older patients derive the same benefits from combination chemotherapy. Absent results of a clinical trial, standard combination chemotherapy approaches are appropriate for young patients with aCRC. PMID:21646604

Viable Options for Fertility Preservation in Breast Cancer Patients: A Focus on Latin America.

PubMed

Lambertini, Matteo; Goldrat, Oranite; Barragan-Carrillo, Regina; Viglietti, Giulia; Demeestere, Isabelle; Villarreal-Garza, Cynthia

2017-01-01

Thanks to the improved survival outcomes observed in recent years, a growing attention has been given to the quality of life issues faced by young women with breast cancer such as fertility preservation and concerns related to future pregnancies. However, several challenges remain for young women with breast cancer considering undergoing fertility preservation strategies. Further specific issues on this regard should be taken into account in Latin America, where patients and physicians face particular barriers that hinder the routine adoption of this practice. Hence, further efforts are needed to overcome these deficiencies and improve the correct referral of breast cancer patients to fertility preservation strategies. The aim of the present review is to focus on the risk of anticancer treatment-related premature ovarian failure and infertility in young breast cancer patients, to summarize the current knowledge on the available options for fertility preservation, and to discuss the safety issues of pregnancy in breast cancer survivors. Furthermore, this review aims to highlight the specific clinical challenges in this field encountered by healthcare providers and young breast cancer patients from Latin American countries.

The Prognostic Impact of Molecular Subtypes and Very Young Age on Breast Conserving Surgery in Early Stage Breast Cancer

PubMed Central

McGuire, Kandace; Alco, Gul; Nur Pilanci, Kezban; Koksal, Ulkuhan I; Elbüken, Filiz; Erdogan, Zeynep; Agacayak, Filiz; Ilgun, Serkan; Sarsenov, Dauren; Öztürk, Alper; İğdem, Şefik; Okkan, Sait; Eralp, Yeşim; Dincer, Maktav; Ozmen, Vahit

2016-01-01

Background Premenopausal breast cancer with a triple-negative phenotype (TNBC) has been associated with inferior locoregional recurrence free survival (LRFS) and overall survival (OS) after breast conserving surgery (BCS). The aim of this study is to analyze the association between age, subtype, and surgical treatment on survival in young women (≤40 years) with early breast cancer in a population with a high rate of breast cancer in young women. Methods Three hundred thirty-two patients ≤40 years old with stage I-II invasive breast cancer who underwent surgery at a single institution between 1998 and 2012 were identified retrospectively. Uni- and multivariate analysis evaluated predictors of LRFS, OS, and disease free survival (DFS). Results Most patients (64.2%) underwent BCS. Mean age and follow-up time were 35 (25 ± 3.61) years, and 72 months (range, 24–252), respectively. In multivariate analysis, multicentricity/multifocality and young age (<35 years) independently predicted for poorer DFS and OS. Those aged 35–40 years had higher LRFS and DFS than those <35 in the mastectomy group (p=0.007 and p=0.039, respectively). Patients with TNBC had lower OS compared with patients with luminal A subtype (p=0.042), and those who underwent BCS had higher OS than patients after mastectomy (p=0.015). Conclusion Young age (< 35 years) is an independent predictor of poorer OS and DFS as compared with ages 35–40, even in countries with a lower average age of breast cancer presentation. In addition, TNBC in the young predicts for poorer OS. BCS can be performed in young patients with TNBC, despite their poorer overall survival. PMID:27433412

Current lifestyle of young adults treated for cancer in childhood.

PubMed

Evans, S E; Radford, M

1995-05-01

The aim of this study was to look at the current lifestyle of young adult survivors of childhood cancer between the ages of 16 and 30 years to document their achievements and expose any psychosocial problems. Sixty six young adult survivors were contacted and asked if they and their siblings (16-30 years) would take part in a lifestyle study; 48 patients and 38 sibling controls were interviewed. This took the form of a structured lifestyle questionnaire, a self esteem questionnaire (Oxford Psychologists Press), and an unstructured interview. Fifty five per cent of patients achieved five or more A-C grades at 'O' level/GCSE compared with 62% of siblings and a national average of 30%. Despite that these patients were significantly less likely to go on to higher education than their siblings. The two groups were equally employable and earning similar salaries. There were three cases of known employer prejudice. A slightly higher percentage of patients than siblings had their driving licence. Seventeen patients felt their appearance had changed and eight felt that they had a residual physical mobility problem. Both groups were socially active and equally likely to partake in competitive sports. There was no overall difference in the self esteem of the two groups. In general the survivors of childhood cancer were coping well in their young adult life and achieving the same lifestyle goals as their siblings. However, significant problems have been identified.

Unmet Information Needs and Quality of Life in Young Breast Cancer Survivors in Japan

PubMed Central

Miyashita, Mika; Ohno, Shinji; Kataoka, Akemi; Tokunaga, Eriko; Masuda, Norikazu; Shien, Tadahiko; Kawabata, Kimiko; Takahashi, Miyako

2015-01-01

Background: Young breast cancer survivors have specific needs related to age. Clarifying the relationships between unmet information needs and quality of life (QOL) in young breast cancer survivors can contribute to constructing a support system to enhance QOL in patients. Objective: This study aimed to identify the unmet information needs and examine the relationships between unmet information needs and QOL in young breast cancer survivors in Japan. Methods: Participants completed an information needs questionnaire containing 26 items, the World Health Organization Quality of Life Instrument–Short Form (WHOQOL-BREF), and a demographic and medical information questionnaire. Results: Fifty participants (30.7%) were unsatisfied with “overall communication with medical professionals.” The mean scores on all subscales of the WHOQOL-BREF of the participants who were satisfied with “overall communication with medical professionals” were significantly higher than those of the unsatisfied group. “follow-up tests,” “treatment for recurrence of breast cancer,” “strategies about communication with medical staff,” and “nutrition” were significantly related with all subscales in the WHOQOL-BREF. “Secondary menopause caused by hormonal therapy” was significantly related with physical and psychological health. Conclusions: Japanese young breast cancer survivors have unmet information needs, including age-specific issues. These unmet information needs are related to QOL. In particular, “overall communication with medical professionals,” which is the most unmet information need, is related to QOL. Implications for Practice: Oncology nurses should teach patients communication skills, provide adequate information, and provide education and emotional support to medical professionals to improve QOL in young breast cancer survivors. PMID:25254410

Adolescent and Young Adult Patient Engagement and Participation in Survey-Based Research: A Report From the "Resilience in Adolescents and Young Adults With Cancer" Study.

PubMed

Rosenberg, Abby R; Bona, Kira; Wharton, Claire M; Bradford, Miranda; Shaffer, Michele L; Wolfe, Joanne; Baker, Kevin Scott

2016-04-01

Conducting patient-reported outcomes research with adolescents and young adults (AYAs) is difficult due to low participation rates and high attrition. Forty-seven AYAs with newly diagnosed cancer at two large hospitals were prospectively surveyed at the time of diagnosis and 3-6 and 12-18 months later. A subset participated in 1:1 semistructured interviews. Attrition prompted early study closure at one site. The majority of patients preferred paper-pencil to online surveys. Interview participants were more likely to complete surveys (e.g., 93% vs. 58% completion of 3-6 month surveys, P = 0.02). Engaging patients through qualitative methodologies and using patient-preferred instruments may optimize future research success. © 2015 Wiley Periodicals, Inc.

TEN-YEAR RECURRENCE RATES IN YOUNG WOMEN WITH BREAST CANCER BY LOCOREGIONAL TREATMENT APPROACH

PubMed Central

Beadle, Beth M.; Woodward, Wendy A.; Tucker, Susan L.; Outlaw, Elesyia D.; Allen, Pamela K.; Oh, Julia L.; Strom, Eric A.; Perkins, George H.; Tereffe, Welela; Yu, Tse-Kuan; Meric-Bernstam, Funda; Litton, Jennifer K.; Buchholz, Thomas A.

2011-01-01

Purpose Young women with breast cancer have higher locoregional recurrence (LRR) rates than older patients. The goal of this study is to determine the impact of locoregional treatment strategy, breast-conserving therapy (BCT), mastectomy alone (M), or mastectomy with adjuvant radiation (MXRT), on LRR for patients 35 years or younger. Methods and Materials Data for 668 breast cancers in 652 young patients with breast cancer were retrospectively reviewed; 197 patients were treated with BCT, 237 with M, and 234 with MXRT. Results Median follow-up for all living patients was 114 months. In the entire cohort, 10-year actuarial LRR rates varied by locoregional treatment: 19.8% for BCT, 24.1% for M, and 15.1% for MXRT (p = 0.05). In patients with Stage II disease, 10-year actuarial LRR rates by locoregional treatment strategy were 17.7% for BCT, 22.8% for M, and 5.7% for MXRT (p = 0.02). On multivariate analysis, M (hazard ratio, 4.45) and Grade III disease (hazard ratio, 2.24) predicted for increased LRR. In patients with Stage I disease, there was no difference in LRR rates based on locoregional treatment (18.0% for BCT, 19.8% for M; p = 0.56), but chemotherapy use had a statistically significant LRR benefit (13.5% for chemotherapy, 27.9% for none; p = 0.04). Conclusions Young women have high rates of LRR after breast cancer treatment. For patients with Stage II disease, the best locoregional control rates were achieved with MXRT. For patients with Stage I disease, similar outcomes were achieved with BCT and mastectomy; however, chemotherapy provided a significant benefit to either approach. PMID:18707822

Young women's construction of their post-cancer fertility.

PubMed

Dryden, Amy; Ussher, Jane M; Perz, Janette

2014-01-01

Younger women diagnosed with cancer often face compromised fertility as a result of their treatment. However, previous research has adopted a biomedical model of fertility and utilised hypothetico-deductive research methods which have not allowed for full exploration of women's subjectivity. This study explored younger women's construction of their fertility post-cancer, and their discussions of fertility with healthcare professionals, from a social constructionist epistemology. Semi-structured one-to-one interviews were conducted with eight women aged 18-26, across a variety of cancer types. Foucaultian Discourse Analysis identified three subject positions associated with fertility concerns: 'Inadequate woman: Accepting the motherhood mandate'; 'Adequate woman: Resisting the motherhood mandate'; and 'Survival of the fittest: Woman as genetically defective'. Implications of these subject positions included feelings of inadequacy, fear and devastation; feeling undesirable to romantic partners; and concern about passing on cancer-positive genes. In describing healthcare professional interactions, women adopted positions of 'Satisfied patient'; 'Passive recipient patient'; or 'Resisting the passive patient position'. Accounts of inadequate information provision were associated with anger and frustration, whereas feeling adequately informed was associated with satisfaction at making decisions about fertility preservation. These results suggest that fertility is of importance to young women cancer survivors, and that compromised fertility can negatively impact subjectivity.

Young Vs Old Colorectal Cancer in Indian Subcontinent: a Tertiary Care Center Experience.

PubMed

Pokharkar, Ashish B; Bhandare, Manish; Patil, Prachi; Mehta, Shaesta; Engineer, Reena; Saklani, Avanish P

2017-12-01

This study aims to compare patient, tumor, treatment-related factors and survival between young (<45 years) and old (>45 years) Indian colorectal cancer (CRC) patients. Total 778 patients of CRC were registered at tertiary cancer center in India between 1 August 2013 and 31 July 2014. Patients were followed up for median period of 27.73 months. Data regarding patient, tumor, treatment and survival-related factors were collected. Patients were divided in young (≤45 years) and old (>45 years) age groups. Statistical analysis was done with SPSS software version 23. Young age group patients presented more commonly with poor histology, node-positive disease, and rectal site. Younger age group patients received multiple lines of neoadjuvant treatment. There was no significant overall survival difference in both groups of patients. On stratified stage-wise analysis, no significant overall survival (OS) difference was found between two groups (young vs old-1- and 3-year OS: 85.2 and 61.5% vs 81.5 and 64.5%, respectively; P  = 0.881). On univariate analysis, gender, performance status, site, stage, differentiation, TRG, CRM status, signet ring type, and CEA level were significant prognostic factors. In disease-free survival (DFS) analysis, it is found that there is statistically significant difference in DFS (young vs old: 1 and 3 years; 77.6 and 62.8% vs 85.8 and 74.1%, respectively; P value, 0.02), but when OS was analyzed for same group of patient, there was no statistical difference ( P  = 0.302). This study confirms the high incidence rates of CRC in young Indian patients. There is no OS difference between two age groups. In operated group of patients, there is higher DFS in older patients but no OS advantage at 3 years follow-up. Further long-term follow-up is required to see any OS difference.

Counseling Preferences of Young Adults with Cancer

ERIC Educational Resources Information Center

Taylor, Jessica Z.; Kashubeck-West, Susan

2017-01-01

This study examined preferences for counseling topics to discuss in individual, group, and family counseling among young adults with cancer, as well as their ranked preferences for attending individual, group, and family counseling. A sample of 320 young adults with cancer (18-39 years old) completed an online survey containing items relevant to…

Cancer in American Indian and Alaska Native young adults (ages 20-44 years): US, 1999-2004.

PubMed

Weir, Hannah K; Jim, Melissa A; Marrett, Loraine D; Fairley, Temeika

2008-09-01

An examination of cancer incidence patterns in American Indians and Alaska Native (AI/AN) young adults may provide insight into their present and future cancer burden. To reduce racial misclassification, incidence data were linked with the Indian Health Service (IHS) patient services database. Age-adjusted cancer incidence rates per 100,000 (AAR) and corresponding rate ratios (RR) for young adults (ages 20-44 years) were compared across IHS regions and for selected cancers within Contract Health Service Delivery Area counties by race (AI/AN vs non-Hispanic whites [NHW]) and sex. The all-sites cancer incidence rate was lower for AI/ANs (AAR of 83.8) than for NHWs (AAR of 111.2) (RR of 0.75) but varied by IHS regions. Among the leading cancers in AI/AN females the risk was elevated for stomach (RR of 3.22), colorectal (RR of 1.30), uterine (RR of 1.61), and kidney (RR of 1.39) cancers and was lower for breast (RR of 0.70) and thyroid (RR of 0.71) cancers. Among AI/AN young adult males the risk was elevated for stomach (RR of 2.62), liver (RR of 1.89), and kidney (RR of 1.59) cancers and lower for testicular germ cell cancer (RR of 0.64) and lymphoma (RR of 0.60). The risk for these and other cancers varied across IHS regions. Many of the cancer patterns that characterize the AI/AN population overall are apparent among young adults. Compared with NHW young adults, the overall cancer burden among AI/AN young adults was lower but varied for selected cancers and across IHS regions. Cancer control and research strategies are needed to address the unique genetic, social, cultural, and lifestyle aspects of AI/AN young adults.

Psychosocial needs of young breast cancer survivors in Mexico City, Mexico

PubMed Central

Rosenberg, Shoshana M.; González-Robledo, Maria Cecilia; Cohn, Julia G.; Villarreal-Garza, Cynthia; Partridge, Ann H.; Knaul, Felicia M.

2018-01-01

Objective Young breast cancer survivors in Mexico face distinct psychosocial challenges that have not been characterized. This study aims to describe the psychosocial needs of young breast cancer survivors in Mexico at 5 or more years of survivorship, identifying areas of focus for early interventions. Methods Breast cancer patients diagnosed at age 40 or prior with 5 or more years since diagnosis were invited to participate in one-on-one 30–60 minute semi-structured audio-recorded interviews at the Instituto Nacional de Cancerología in Mexico City. Transcripts were coded using thematic analysis with NVivo software. Results 25 women participated. Five major phenomena emerged from analysis: (1) minimization of fertility concerns; (2) persistence of body image disturbance over time; (3) barriers to employment during survivorship; (4) impact on family relationships and social networks; & (5) unmet psychological care and informational needs. Conclusions Early interventions with a focus on fertility loss education, access to reconstructive surgery and body image support, guidance during return-to-work, assistance with childcare, integration of psychological care and the fulfillment of informational needs could ameliorate long-term psychological and social distress for young breast cancer survivors in Mexico. PMID:29787612

Psychosocial needs of young breast cancer survivors in Mexico City, Mexico.

PubMed

Hubbeling, Harper G; Rosenberg, Shoshana M; González-Robledo, Maria Cecilia; Cohn, Julia G; Villarreal-Garza, Cynthia; Partridge, Ann H; Knaul, Felicia M

2018-01-01

Young breast cancer survivors in Mexico face distinct psychosocial challenges that have not been characterized. This study aims to describe the psychosocial needs of young breast cancer survivors in Mexico at 5 or more years of survivorship, identifying areas of focus for early interventions. Breast cancer patients diagnosed at age 40 or prior with 5 or more years since diagnosis were invited to participate in one-on-one 30-60 minute semi-structured audio-recorded interviews at the Instituto Nacional de Cancerología in Mexico City. Transcripts were coded using thematic analysis with NVivo software. 25 women participated. Five major phenomena emerged from analysis: (1) minimization of fertility concerns; (2) persistence of body image disturbance over time; (3) barriers to employment during survivorship; (4) impact on family relationships and social networks; & (5) unmet psychological care and informational needs. Early interventions with a focus on fertility loss education, access to reconstructive surgery and body image support, guidance during return-to-work, assistance with childcare, integration of psychological care and the fulfillment of informational needs could ameliorate long-term psychological and social distress for young breast cancer survivors in Mexico.

Young adult cancer survivors' follow-up care expectations of oncologists and primary care physicians.

PubMed

Hugh-Yeun, Kiara; Kumar, Divjot; Moghaddamjou, Ali; Ruan, Jenny Y; Cheung, Winson Y

2017-06-01

Young adult cancer survivors face unique challenges associated with their illness. While both oncologists and primary care physicians (PCPs) may be involved in the follow-up care of these cancer survivors, we hypothesized that there is a lack of clarity regarding each physician's roles and responsibilities. A self-administered survey was mailed to young adult cancer survivors in British Columbia, Canada, who were aged 20 to 39 years at the time of diagnosis and alive at 2 to 5 years following the diagnosis to capture their expectations of oncologists and PCPs in various important domains of cancer survivorship care. Multivariate logistic regression models that adjusted for confounders were constructed to examine for predictors of the different expectations. Of 722 young cancer survivors surveyed, 426 (59%) responded. Among them, the majority were White women with breast cancer. Oncologists were expected to follow the patient's most recent cancer and treatment-related side effects while PCPs were expected to manage ongoing and future cancer surveillance as well as general preventative care. Neither physician was perceived to be responsible for addressing the return to daily activities, reintegration to interpersonal relationships, or sexual function. Older survivors were significantly less likely to expect oncologists (p = 0.03) and PCPs (p = 0.01) to discuss family planning when compared to their younger counterparts. Those who were White were significantly more likely to expect PCPs to discuss comorbidities (p = 0.009) and preventative care (p = 0.001). Young adult cancer survivors have different expectations of oncologists and PCPs with respect to their follow-up care. Physicians need to better clarify their roles in order to further improve the survivorship phase of cancer care for young adults. Young adult cancer survivors have different expectations of their oncologists and PCPs. Clarification of the roles of each physician group during follow-up can

Symptom burden among young adults with breast or colorectal cancer.

PubMed

Sanford, Stacy D; Zhao, Fengmin; Salsman, John M; Chang, Victor T; Wagner, Lynne I; Fisch, Michael J

2014-08-01

Cancer incidence has increased among young adults (YAs) and survival rates have not improved compared with other age groups. Patient-reported outcomes may enhance our understanding of this vulnerable population. In a multisite prospective study, patients completed a cancer symptom inventory at the time of enrollment (T1) and 4 weeks to 5 weeks later (T2). YAs (those aged ≤ 39 years) with breast or colorectal cancer were compared with older adults (those aged ≥ 40 years) with breast or colorectal cancer with regard to symptom severity, symptom interference, changes over time, and medical care. Participants included 1544 patients with breast cancer (96 of whom were YAs) and 718 patients with colorectal cancer (37 of whom were YAs). Compared with older adults, YAs with breast cancer were more likely to report moderate/severe drowsiness, hair loss, and symptom interference with relationships at T1. YAs with colorectal cancer were more likely to report moderate/severe pain, fatigue, nausea, distress, drowsiness, shortness of breath, and rash plus interference in general activity, mood, work, relationships, and life enjoyment compared with older adults. Compared with older adults, shortness of breath, appetite, and sore mouth were more likely to improve in YAs with breast cancer; vomiting was less likely to improve in YAs with colorectal cancer. Referrals for supportive care were few, especially among patients with colorectal cancer. YAs with breast cancer were somewhat more likely to be referred to nutrition and psychiatry services than older patients. YAs reported symptom severity, symptom interference, and variations over time that were distinct from older patients. Distinctions were found to differ by diagnostic group. These findings enhance the understanding of symptom burden in YAs and inform the development of targeted interventions and future research. © 2014 American Cancer Society.

The evaluation and management of pain in the infant and young child with cancer.

PubMed Central

Berman, D.; Duncan, A. M.; Zeltzer, L. K.

1992-01-01

In the last decade, there has been a developing awareness of pain in paediatric patients and especially in young patients who may be unable to express their pain. This paper addresses the issue of pain in the infant and young child with cancer. Current understanding of pain and its physiological consequences are explored. Evaluation of pain within a developmental context is outlined. Guidelines are presented for the behavioural and pharmacological management of pain with emphasis on appropriate therapy for the infant and young child. PMID:1503933

Web-based survey of fertility issues in young women with breast cancer.

PubMed

Partridge, Ann H; Gelber, Shari; Peppercorn, Jeffrey; Sampson, Ebonie; Knudsen, Katherine; Laufer, Marc; Rosenberg, Randi; Przypyszny, Michele; Rein, Alison; Winer, Eric P

2004-10-15

Young women with breast cancer often seek advice about whether treatment will affect their fertility. We sought to gain a better understanding of women's attitudes about fertility and how these concerns affect decision making. We developed a survey about fertility issues for young women with a history of early-stage breast cancer. The survey was e-mailed to all registered Young Survival Coalition survivor members (N = 1,702). E-mail reminders were used. Six hundred fifty-seven eligible respondents completed the survey. Mean age at breast cancer diagnosis was 32.9 years; mean current age was 35.8 years. Ninety percent of women were white; 62% were married; 76% were college graduates. Stages at diagnosis were as follows: 0, 10%; I, 27%; II, 47%; III, 13%. Sixty-two percent of women were within 2 years of diagnosis. Fifty-seven percent recalled substantial concern at diagnosis about becoming infertile with treatment. In multivariate logistic regression, greater concern about infertility was associated with wish for children/more children (odds ratio [OR], 120; P < .0001), number of prior pregnancies (OR, 0.78; P = .01), and prior difficulty conceiving (OR, 1.86; P = .08). Twenty-nine percent of women reported that infertility concerns influenced treatment decisions. Seventy-two percent of women reported discussing fertility concerns with their doctors; 51% felt their concerns were addressed adequately. Women seemed to overestimate their risk of becoming postmenopausal with treatment. Fertility after treatment is a major concern for young women with breast cancer. There is a need to communicate with and educate young patients regarding fertility issues at diagnosis and a need for future research directed at preserving fertility for young breast cancer survivors.

Urological Survivorship Issues Among Adolescent Boys and Young Men Who Are Cancer Survivors.

PubMed

Sukhu, Troy; Ross, Sherry; Coward, R Matthew

2018-01-27

Urological survivorship issues encompass an area that may potentially be overlooked after treatment of childhood cancer in adolescent boys and young men. Side effects of cancer therapy may include subsequent development of erectile dysfunction (ED), hypogonadism, and infertility in adulthood. The purpose of this review is to focus on the etiology and prevalence of the range of sexual and gonadal dysfunction in adolescent boys and young men who are cancer survivors, while discussing current recommendations for evaluation and treatment. We performed a literature review of articles evaluating hypogonadism, sexual dysfunction, ED, and infertility in young men cancer survivors. There is compelling evidence that significant survivorship issues are faced by boys entering adulthood after completing cancer therapy. Overall, young men cancer survivors are much more likely to report symptoms of sexual dysfunction than the general population of men. These patients can develop ED due to physiologic and psychological changes that take place with diagnosis of a malignancy and subsequent treatment. Primary hypogonadism can arise due to pelvic radiation or chemotherapy, and central hypogonadism may arise from pituitary insufficiency after brain radiation or surgery. Infertility develops from direct damage to the Sertoli cells and germinal epithelium from radiotherapy or chemotherapy. Cancer survivors who are men should therefore be screened for these important urological survivorship issues, although exact surveillance strategies remain unclear. Urological survivorship issues including ED, hypogonadism, and infertility are common among cancer survivors and result in significant morbidity. Due to the medical complexity of cancer survivorship, the population of adolescent and young adult survivors would benefit from a network of multidisciplinary survivorship experts to aid the transition into adulthood. Improved research efforts may help to clarify risk factors and to develop

Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients.

PubMed

Zebrack, Brad J; Block, Rebecca; Hayes-Lattin, Brandon; Embry, Leanne; Aguilar, Christine; Meeske, Kathleen A; Li, Yun; Butler, Melissa; Cole, Steven

2013-01-01

Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psychosocial issues distinct from those of children or older adults. In this study, the authors examined and compared the extent to which AYAs treated in pediatric or adult oncology settings reported use of, and unmet need for, psychosocial support services. Within 4 months of initial cancer diagnosis, 215 AYAs ages 14 to 39 years (99 from pediatric care settings and 116 from adult care settings; 75% response rate) were assessed for reporting use of information resources, emotional support services, and practical support services. Statistical analyses derived odds ratios and 95% confidence intervals for service use and unmet needs after controlling for race, employment/school status, sex, relationship status, severity of cancer, treatment, and treatment-related side effects. AYAs ages 20 to 29 years were significantly less likely than teens and older patients ages 30 to 39 years to report using professional mental health services and were significantly more likely to report an unmet need with regard to cancer information, infertility information, and diet/nutrition information. Compared with teens who were treated in pediatric facilities, AYAs who were treated in adult facilities were more likely to report an unmet need for age-appropriate Internet sites, professional mental health services, camp/retreats programs, transportation assistance, and complementary and alternative health services. Substantial proportions of AYAs are not getting their psychosocial care needs met. Bolstering psychosocial support staff and patient referral to community-based social service agencies and reputable Internet resources may enhance care and improve quality of life for AYAs. Copyright © 2012 American Cancer Society.

Urothelial cancer of bladder in young versus older adults: clinical and pathological characteristics and outcomes.

PubMed

Telli, Onur; Sarici, Hasmet; Ozgur, Berat Cem; Doluoglu, Omer Gokhan; Sunay, Mehmet Melih; Bozkurt, Selen; Eroglu, Muzaffer

2014-09-01

Bladder urothelial carcinoma is rare in young adults and occurs more commonly in older individuals. The aim of this study was to compare the clinical behavior, pathologic characteristics, and prognosis of urothelial carcinoma of urinary bladder in young versus older adults. A retrospective review of our records between 2007 and 2013 identified 56 patients (42 males and 14 females) with transitional cell carcinoma of the bladder who were less than 40 years old. Clinical and pathological parameters of patients who were less than 40 years of age were compared with those of a series of patients older than 40 years of age (the control group) during the same period. A survival analysis was performed using the Kaplan-Meier method and log-rank test, and Cox regression was performed to identify clinical parameters that affected the clinical outcomes. The mean age was 29.21 years (range, 5-40 years) for patients less than 40 years old and 61.66 years (range, 41-75) for those older than 40 years. The mean follow-up was 40.26 months (range, 12-65 months) for young patients and 42.57 months (range, 12-72 months) for the older patients. Young bladder cancer patients had smaller-sized tumors (less than 3 cm), less high-grade cancers, higher papillary urothelial neoplasms of low malignant potential, and low-grade tumors than patients older than 40 years. Multivariate logistic regression analysis predicted tumor recurrence in young patients with high-grade tumors [odds ratio (OR), 1.959; 95% confidence interval (CI), 1.235-2.965; p = 0.046] and tumors larger than 3 cm (OR, 1.772; 95% CI, 1.416-1.942; p = 0.032). The 5-year overall survival rate was 100% for young patients and 88.1% for older patients. No difference was observed in the recurrence-free (p = 0.321) and progression-free (p = 0.422) survival rates between the two groups. We concluded that although the clinical stage distribution, natural history, and outcomes of bladder urothelial cancer in young adults are

Hacking the hospital environment: young adults designing youth-friendly hospital rooms together with young people with cancer experiences.

PubMed

Boisen, Kirsten A; Boisen, Anne; Thomsen, Stine Legarth; Matthiesen, Simon Meggers; Hjerming, Maiken; Hertz, Pernille Grarup

2015-12-09

There is a need for youth-friendly hospital environments as the ward environment may affect both patient satisfaction and health outcomes. To involve young people in designing youth-friendly ward environment. We arranged a design competition lasting 42 h (Hackathon). Students in architecture, design, engineering, communication and anthropology participated (27 young adults) - forming eight groups. Adolescents and young adults (AYA) with current or former cancer experience participated as sparring partners. We provided workspace and food during the weekend. The groups presented their products to a jury and relevant stakeholders. The groups created eight unique design concepts. The young designers were extremely flexible listening to ideas and experiences from the young patients, which led to common features including individual and flexible design, privacy in two-bed wardrooms and social contact with other hospitalized AYA. The winning project included an integrated concept for both wardrooms and the AYA day room, including logos and names for the rooms and an 'energy wall' in the day room. A hackathon event was an effective mode of youth participation. The design concepts and ideas were in line with current evidence regarding pleasing hospital environment and youth-friendly inpatient facilities and may be applicable to other young patients.

Long-term survival and conditional survival of cancer patients in Japan using population-based cancer registry data

PubMed Central

Ito, Yuri; Miyashiro, Isao; Ito, Hidemi; Hosono, Satoyo; Chihara, Dai; Nakata-Yamada, Kayo; Nakayama, Masashi; Matsuzaka, Masashi; Hattori, Masakazu; Sugiyama, Hiromi; Oze, Isao; Tanaka, Rina; Nomura, Etsuko; Nishino, Yoshikazu; Matsuda, Tomohiro; Ioka, Akiko; Tsukuma, Hideaki; Nakayama, Tomio

2014-01-01

Although we usually report 5-year cancer survival using population-based cancer registry data, nowadays many cancer patients survive longer and need to be followed-up for more than 5 years. Long-term cancer survival figures are scarce in Japan. Here we report 10-year cancer survival and conditional survival using an established statistical approach. We received data on 1 387 489 cancer cases from six prefectural population-based cancer registries in Japan, diagnosed between 1993 and 2009 and followed-up for at least 5 years. We estimated the 10-year relative survival of patients who were followed-up between 2002 and 2006 using period analysis. Using this 10-year survival, we also calculated the conditional 5-year survival for cancer survivors who lived for some years after diagnosis. We reported 10-year survival and conditional survival of 23 types of cancer for 15–99-year-old patients and four types of cancer for children (0–14 years old) and adolescent and young adults (15–29 years old) patients by sex. Variation in 10-year cancer survival by site was wide, from 5% for pancreatic cancer to 95% for female thyroid cancer. Approximately 70–80% of children and adolescent and young adult cancer patients survived for more than 10 years. Conditional 5-year survival for most cancer sites increased according to years, whereas those for liver cancer and multiple myeloma did not increase. We reported 10-year cancer survival and conditional survival using population-based cancer registries in Japan. It is important for patients and clinicians to report these relevant figures using population-based data. PMID:25183551

Educational Needs of Health Professionals Caring for Adolescents and Young Adults with Cancer.

PubMed

Bradford, Natalie K; Greenslade, Rebecca; Edwards, Rachel M; Orford, Rebekah; Roach, Jane; Henney, Roslyn

2018-01-16

Young people with cancer have distinct clinical and psychosocial needs during and after cancer treatment. However, as adolescent and young adult (AYA) cancer is rare, and only recently recognized as specialty, health professionals may not have the skills, competence, and confidence to meet the needs of the young patient with cancer. The aim of this study was to identify the learning needs of health professionals providing cancer care to adolescents and young adults before and following the introduction of a state-wide AYA cancer education program. A survey of educational needs of health professionals was undertaken in 2013 at the commencement of the Queensland Youth Cancer Service. The survey was used to develop the education program of the service. The education program was delivered across the state in a variety of formats, covering a range of topics throughout 2013-2016. The second survey was completed in 2017. Results were compared to identify if educational needs or the self-rated confidence of health professionals in regard to AYA cancer care had changed over time. One hundred twenty-two participants completed the first survey and 73 completed the second. The most prominent educational needs in 2013 were palliative care and biomedical topics such as understanding AYA growth and development as well as specific AYA cancers and treatment. The second survey identified that palliative care education remained important; however, there was a shift toward health professionals request for more psychosocial and practical education on topics including fertility, sexuality, and managing late effects. To provide high-quality healthcare to AYAs with cancer, health professionals require ongoing opportunities for education and training.

Distress among young adult cancer survivors: a cohort study.

PubMed

Yanez, Betina; Garcia, Sofia F; Victorson, David; Salsman, John M

2013-09-01

Being diagnosed with cancer as a young adult can lead to significant psychological distress and impaired quality of life. Compared to children and older adults diagnosed with cancer, fewer studies have addressed psychological distress among young adult cancer survivors. This study sought to identify the prevalence of, and factors associated with, distress among young adult cancer survivors (ages 18-39). Young adult cancer survivors (N = 335, mean age = 31.8, women = 68.4%) were recruited from an online research panel and stratified by cohort (time postactive treatment: 0-12, 13-24, and 25-60 months). Participants completed measures assessing demographic and clinical characteristics, global impact of cancer, cancer-related education and work interruption, and cancer-specific distress using the impact of event scale (IES). The mean score on the IES (M = 31.0, range = 0-75) was above the cut point of 20, suggesting clinically elevated distress. Analysis of covariance revealed significant main effects for cohort, global impact and cancer-related education/work interruption, and an interaction between cohort and cancer-related education/work interruption on distress. Although there was no significant effect of education/work interruption on distress for those in the 0-12 month cohort (p = .88), survivors in the 13-24 and 25-60 month cohorts reporting education/work interruption were significantly more distressed than those not reporting education/work interruption in the respective cohorts (p < .05). Young adult cancer survivors face unique challenges. These data underscore the importance of attending to cancer-related distress beyond the completion of treatment and may help inform targeted interventions to prevent or reduce significant distress and related sequelae in this population.

Menopausal symptoms in young survivors of breast cancer: a growing problem without an ideal solution.

PubMed

Murthy, Vijayashree; Chamberlain, Ronald S

2012-10-01

New breast cancers occur in 25% to 30% of women < 50 years of age. These young women undergo ablative surgery, chemotherapy, or hormonal/targeted treatment. These treatments have resulted in increased survival but at the expense of early menopause, marked by distressing vasomotor symptoms, sexual dysfunction, decreased metabolism, and musculoskeletal and cardiovascular effects. A comprehensive literature search was performed using PubMed. This article reviews the evidence-based approaches to the treatment of these distressing symptoms in young breast cancer survivors. Menopausal symptoms in young patients are typically more severe due to the abrupt and rapid decrease in estrogen, and chemotherapy and hormones worsen these symptoms. Evidence supporting the efficacy of most complementary therapies is scarce. Behavioral modification and yoga may be helpful in mild cases of vasomotor symptoms, whereas newer antidepressants are promising in moderate to severe cases, and stellate ganglion block may be used in refractory cases. Local vaginal moisturizers, and in refractory cases low-dose estrogen creams, may ameliorate most urogenital symptoms. Bisphosphonates, vitamin D, and calcium can treat osteoporosis, and weight-bearing exercises decrease bone mineral density loss and help to control weight. Smoking cessation, exercise, and dietary modifications should be recommended to all young patients to decrease cardiac morbidity. At present, there is insufficient evidence to support any natural agent as a viable alternative to hormone replacement therapy to treat these symptoms. No single agent can ameliorate vasomotor, cardiac, skeletal, and sexual concerns of young breast cancer survivors coping with menopausal symptoms. Quality-of-life research involving premenopausal breast cancer survivors is lacking. Further study is needed to identify safe and effective treatments for menopausal symptoms and to confirm their long-term safety in young breast cancer survivors.

Adolescents and Young Adults With Cancer: Oncology Nurses Report Attitudes and Barriers to Discussing Fertility Preservation.

PubMed

Nobel Murray, Alexandra; Chrisler, Joan C; Robbins, Mark L

2016-08-01

Fertility issues have been found to be an important topic for adolescents and young adults (AYAs) with cancer. Medical technology has made fertility preservation (FP) increasingly effective for postpubertal patients whose treatment course may inhibit their future ability to achieve biologic parenthood. Oncology providers' recommendations have been shown to vary, potentially affecting patients' decision-making processes regarding FP. This study was designed to assess oncology nurses' recommendations for patients to consider FP options and to explore what patient-related factors may influence discussion of FP with AYAs with cancer. 116 oncology nurses participated in this study and were randomized to read one of four vignettes about a patient whose proposed treatment course could affect his or her fertility. Participants' recommendations to partake in FP were analyzed to test for differences by patient age and gender. Open-ended responses to questions about their experiences as oncology nurses were analyzed descriptively. Nurses strongly recommended that all patients explore FP options before the start of treatment. Oncology nurses endorsed stronger opinions that young adult female patients should be given independent decision-making power to delay treatment for FP, compared to male and female adolescent patients and young adult male patients. Participants mentioned barriers to discussions that included concerns about exacerbating negative emotions and the decision-making capacity of young patients.

The degree of social difficulties experienced by cancer patients and their spouses.

PubMed

Takeuchi, Takashi; Ichikura, Kanako; Amano, Kanako; Takeshita, Wakana; Hisamura, Kazuho

2018-06-08

Although recent studies have increasingly reported physical and psychological problems associated with cancer and its treatment, social problems of cancer patients and their families have not been sufficiently elucidated. The present study aimed to identify cancer-associated social problems from the perspectives of both patients and their spouses and to compare and analyze differences in their problems. This was a cross-sectional internet-based study. Subjects were 259 patients who developed cancer within the previous five years and 259 patients' spouses; the data were derived from two surveys in 2010 (patients) and 2016 (spouses) whose participants were not part of the same dyad but matched by propensity scores, estimated for age, sex, and the presence or absence of recurrence. We investigated the social difficulties of cancer patients and patients' spouses. Regarding social difficulties experienced by cancer patients and spouses, the 60 patient survey items were categorized into 14 labels by the Jiro Kawakita (KJ) method, which is a qualitative synthesis method developed by Kawakita to classify categorical data. Although patients had higher scores on most subcategories, young spouses aged 39 or younger and female spouses had difficulty scores as high as the corresponding patients on many subcategories. Health care providers should show sufficient concern for both patients and their spouses, particularly young and female spouses.

Discursive constructions of youth cancer: findings from creative methods research with healthy young people.

PubMed

Mooney-Somers, Julie; Lewis, Peter; Kerridge, Ian

2016-06-01

As part of work to understand the experiences of young people who had cancer, we were keen to examine the perspectives of peers who share their social worlds. Our study aimed to examine how cancer in young people, young people with cancer and young cancer survivors are represented through language, metaphor and performance. We generated data using creative activities and focus group discussions with three high school drama classes and used Foucauldian discourse analysis to identify the discursive constructions of youth cancer. Our analysis identified two prevailing discursive constructions: youth cancer as an inevitable decline towards death and as overwhelming personhood by reducing the young person with cancer to 'cancer victim'. If we are to understand life after cancer treatment and how to support young people who have been treated for cancer, we need a sophisticated understanding of the social contexts they return to. Discourses shape the way young people talk and think about youth cancer; cancer as an inevitable decline towards death and as overwhelming personhood is a key discursive construction that young people draw on when a friend discloses cancer. The way cancer is constructed shapes how friends react to and relate to a young person with cancer. These constructions are likely to shape challenging social dynamics, such as bullying, that many young cancer survivors experience. Awareness of these discursive constructions can better equip young cancer survivors, their family and health professionals negotiate life after cancer.

Causes of death among cancer patients.

PubMed

Zaorsky, N G; Churilla, T M; Egleston, B L; Fisher, S G; Ridge, J A; Horwitz, E M; Meyer, J E

2017-02-01

The purpose of our study was to characterize the causes of death among cancer patients as a function of objectives: (i) calendar year, (ii) patient age, and (iii) time after diagnosis. US death certificate data in Surveillance, Epidemiology, and End Results Stat 8.2.1 were used to categorize cancer patient death as being due to index-cancer, nonindex-cancer, and noncancer cause from 1973 to 2012. In addition, data were characterized with standardized mortality ratios (SMRs), which provide the relative risk of death compared with all persons. The greatest relative decrease in index-cancer death (generally from > 60% to < 30%) was among those with cancers of the testis, kidney, bladder, endometrium, breast, cervix, prostate, ovary, anus, colorectum, melanoma, and lymphoma. Index-cancer deaths were stable (typically >40%) among patients with cancers of the liver, pancreas, esophagus, and lung, and brain. Noncancer causes of death were highest in patients with cancers of the colorectum, bladder, kidney, endometrium, breast, prostate, testis; >40% of deaths from heart disease. The highest SMRs were from nonbacterial infections, particularly among <50-year olds (e.g. SMR >1,000 for lymphomas, P < 0.001). The highest SMRs were typically within the first year after cancer diagnosis (SMRs 10-10,000, P < 0.001). Prostate cancer patients had increasing SMRs from Alzheimer's disease, as did testicular patients from suicide. The risk of death from index- and nonindex-cancers varies widely among primary sites. Risk of noncancer deaths now surpasses that of cancer deaths, particularly for young patients in the year after diagnosis. © The Author 2016. Published by Oxford University Press on behalf of the European Society for Medical Oncology. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

Clinicopathologic and prognostic features of breast cancer in young women: a series from North of Morocco.

PubMed

Bakkach, Joaira; Mansouri, Mohamed; Derkaoui, Touria; Loudiyi, Ali; Fihri, Mohamed; Hassani, Samia; Barakat, Amina; Ghailani Nourouti, Naima; Bennani Mechita, Mohcine

2017-11-09

Literature data reported a higher frequency of breast cancer in young women (BCYW) in developing countries. BCYW is associated with delayed diagnosis, aggressive biology and poor prognosis. However, our knowledge of biological profile, treatment received and outcome of young patients is still limited in Morocco. We propose to analyze clinicopathologic, therapeutic and prognostic features of BCYW among a series of patients native and/or inhabitant of North of Morocco. We carried out a retro-prospective study of 331 infiltrating breast cancer cases registered between January 2010 and December 2015. Details of tumor pathology, treatment and outcome were collected. Disease-Free Survival (DFS) and Overall Survival (OS) were assessed by Kaplan-Meier analysis. A total of 82 patients were diagnosed with breast cancer at the age of 40 or younger (24.8%). Median age was 36 years. More than one quarter (26%) of patients had family history of breast or ovarian cancer. Advanced stages accounted for 34.2% of cases. Median tumor diameter was 2.8 cm. Intermediate and high-grade tumors represented 47.6% and 40.2%, respectively. Nodal involvement was present in 58.5% and lymphovascular invasion was found in 47.7% of the patients. About two thirds (66.2%) of tumors were hormone receptor positive, 29.2% over-expressed HER2 receptor and 23% were triple negative. Patients underwent breast conserving surgery in 38.2% of cases, 61.7% were offered adjuvant chemotherapy and 84.6% received hormone therapy. Five-year DFS and OS were respectively 88.9% and 75.6%. Locoregional recurrence occurred in 2.8% of cases and 8.3% of patients developed distant metastases. Our findings are in accordance with previous studies that have shown a higher frequency of breast cancer among Moroccan young women. In line with literature data, clinicopathologic profile seems to be aggressive and prognosis is pejorative in our series.

Cancer in adolescents and young adults in countries with limited resources.

PubMed

Magrath, Ian; Epelman, Sidnei

2013-08-01

Cancer in adolescents and young adults (AYA) represents a higher fraction of all cancer in countries that are still undergoing a demographic transition. Such countries tend to have much younger populations, and therefore unless they have a particularly low incidence of cancer in this age group, will have a higher burden of cancer (absolute number of cases with cancer) in AYA. Cancers in AYA are comprised of the tail end of the incidence curve of cancers that have their peak incidence, or occur almost exclusively in childhood, the beginning of the incidence curve of cancers that primarily affect the elderly, and a third set of cancers that have their peak incidence (or are at least common) in the AYA age group (e.g., testicular cancer, sarcomas, melanoma, thyroid cancer). Many, but not all, of these cancers require radiation or cancer surgery, but the poorest countries do not have a sufficient number of radiation therapy units and surgical oncologists, or indeed medical and pediatric oncologists, to deal with the burden of cancer they face. The AYA age group is particularly important, both with regard to their contribution to the economy now and in the future (the majority are in the "working" age-group defined as 15-64 years), as well as their important role in caring for their families. Moreover, some of these cancers are eminently curable with chemotherapy alone, and more could be cured by simply improving the efficiency of existing health services and providing education and training to both the public as well as oncologists and other specialists required for the care of AYA (although such individuals will not necessarily be exclusively concerned with this age group). Of particular importance is the detection and diagnosis of cancer patients at the earliest possible time in the course of their disease. Avoiding delays in initiating therapy, which are partly due to the poverty and lack of education of the public as well as to a failure on the part of primary

'Am I really gonna go sixty years without getting cancer again?' Uncertainty and liminality in young women's accounts of living with a history of breast cancer.

PubMed

Rees, Sophie

2017-05-01

Although much research has examined the experience of breast cancer, the distinctive perspectives and lives of young women have been relatively neglected. Women diagnosed with breast cancer under the age of 45, and who had completed their initial treatment, were interviewed, and social constructionist grounded theory methods were used to analyse the data. The end of initial treatment was accompanied by a sense of unease and uncertainty in relation to recurrence and survival, and also fertility and menopausal status. The young women's perceptions about the future were altered, and their fears about recurrence were magnified by the possibility of many decades ahead during which breast cancer could recur. The implications for the young women's life course, in terms of whether they would be able to have children, would not become clear for several years after initial treatment. This resulted in a liminal state, in which young women found themselves neither cancer-free nor cancer patients, neither pre- nor post-menopausal, neither definitively fertile nor infertile. This liminal state had a profound impact on young women's identities and sense of agency. This extends previous understanding of life after cancer, exploring the age-related dimensions of liminality.

The relationship between ovarian function and ovarian limited dose in radiotherapy postoperation of ovarian transposition in young patients with cervical cancer.

PubMed

Du, Zhenhua; Qu, Hui

2017-03-01

In this study, the relationship between ovarian function and ovarian limited dose in radiotherapy was evaluated in young patients with cervical cancer who underwent ovarian transposition (Fig1B). Moreover, the novel ovarian dose limit for a better preservation of ovarian function in intensity-modulated radiation therapy (IMRT) was determined. We retrospectively analyzed data from 86 patients with cervical cancer who received radical hysterectomy and ovarian transposition from January 2013 to June 2015. In agreement with the National Comprehensive Cancer Network Guidelines (NCCN) for Cervical Cancer Version 2.2015, 65 patients with pathological high-risk factors were administered adjuvant radiotherapy-20 of them received three-dimensional conformal radiotherapy (Observation Group A), 24 patients received IMRT with no limitation on radiation dose to ovaries (Observation Group B), and 21 patients underwent IMRT with limited radiation dose(V 10 <20%) to ovaries (Observation Group C). Twenty-one patients without any predetermined high-risk factors did not received radiation therapy (Control Group D). Patients from all four groups were followed up, and sex hormone levels (E 2 , P, follicle-stimulating hormone [FSH], LH) before radiation, postradiation, 3 month, and 6 month after the radiation therapy were measured by electrochemiluminescence immunoassay. Subsequently, changes in sex hormone levels in all four groups of patients at various time points were analyzed. The levels of sexual hormones (E 2 , P, FSH, LH) before radiation, postradiation, 3 month, and 6 month after the radiation therapy in patients from all three observation groups were significantly lower than those in patients of the control group (P < 0.05). There was no statistically significant difference in the levels of sex hormones in patients of the control group at different time points (P > 0.05). Within each observation group, there was a statistically significant difference in the sex hormone

Fertility preservation knowledge, counseling, and actions among adolescent and young adult patients with cancer: A population-based study.

PubMed

Shnorhavorian, Margarett; Harlan, Linda C; Smith, Ashley Wilder; Keegan, Theresa H M; Lynch, Charles F; Prasad, Pinki K; Cress, Rosemary D; Wu, Xiao-Cheng; Hamilton, Ann S; Parsons, Helen M; Keel, Gretchen; Charlesworth, Sarah E; Schwartz, Stephen M

2015-10-01

The fertility of adolescent and young adult (AYA) patients with cancer can be threatened by treatments, but to the authors' knowledge little is known regarding the extent to which providers discuss this with patients or recommend fertility preservation, or the patient and physician characteristics associated with these interactions. Questionnaires from 459 AYA patients with cancer who were diagnosed between 2007 and 2008 and recruited through 7 US population-based cancer registries were analyzed using sex-specific multivariable models. The authors assessed characteristics associated with not discussing therapy effects on fertility or fertility preservation options, and not making fertility preservation arrangements. Males without a medical oncologist were more likely not to be told that therapy might affect fertility than those with a medical oncologist (male odds ratio [OR], 2.28; 95% confidence interval [95% CI], 1.03-5.00). Individuals without insurance (male OR, 2.91 [95% CI, 1.41-5.91] and female OR, 5.46 [95% CI, 1.59-18.72]); those raising children aged <18 years; and, among males only, those who received treatment posing no or a low fertility risk (OR, 3.39; 95% CI, 1.60-7.16) were more likely not to discuss fertility preservation with providers. Finally, among males, those without a college degree (OR, 1.98; 95% CI, 1.00-3.97), lacking private insurance (OR, 2.97; 95% CI, 1.16-7.63), and raising children aged <18 years (OR, 3.53; 95% CI, 1.63-7.65) were more likely to not make fertility preservation arrangements; too few females had made fertility preservation arrangements for similar analyses to be performed. Discussion and action surrounding fertility preservation for AYA patients with cancer are associated with medical factors, patient socioeconomic data, and child-rearing status. These results highlight the need for insurance coverage for fertility preservation and increased awareness of fertility preservation options. © 2015 American Cancer Society.

A Rising Trend in the Incidence of Advanced Gastric Cancer in Young Hispanic Men

PubMed Central

Merchant, Shaila J.; Kim, Joseph; Choi, Audrey H.; Sun, Virginia; Chao, Joseph; Nelson, Rebecca

2017-01-01

BACKGROUND Although the incidence of gastric cancer has been decreasing, recent reports suggest an increased rate in select populations. We sought to evaluate trends in gastric cancer incidence to identify high risk populations. METHODS Gastric cancer incidence rates from 1992 to 2011 were computed using the Surveillance, Epidemiology and End Results (SEER) registry. We evaluated trends in incidence rates by calculating annual percent change (APC) across 3 age groups (20–49, 50–64, ≥65) and 4 racial/ethnic groups (Hispanics, non-Hispanic Whites, Blacks, and Asian/Pacific Islanders). RESULTS We identified 41,428 patients with gastric cancer. For the entire cohort over the study period, the APC was decreased. When patients were grouped according to sex, APC was flat or decreased in women regardless of age or race/ethnicity. APC was also flat or decreased for all men except young Hispanic males (20–49 years), who had an increased APC of nearly 1.6% per year (1.55%, 95% CI:0.26 to 2.86%). Furthermore, young Hispanic males were the only group to have increased incidence of Stage 4 disease (APC 4.34%, 95% CI:2.76 to 5.94%) and poorly differentiated tumors (APC 2.08%, 95% CI:0.48 to 3.70%). CONCLUSIONS The APC of young Hispanic male gastric cancer places it among the top cancers with rising incidence in the United States. This is concomitant with increased incidence of advanced disease at presentation. This major public health concern warrants additional research to determine the etiology of the increasing incidence in this group. PMID:26924751

DNA Mismatch Repair Status Predicts Need for Future Colorectal Surgery for Metachronous Neoplasms in Young Individuals Undergoing Colorectal Cancer Resection.

PubMed

Aronson, Melyssa; Holter, Spring; Semotiuk, Kara; Winter, Laura; Pollett, Aaron; Gallinger, Steven; Cohen, Zane; Gryfe, Robert

2015-07-01

The treatment of colorectal cancer in young patients involves both management of the incident cancer and consideration of the possibility of Lynch syndrome and the development of metachronous colorectal cancers. This study aims to assess the prognostic role of DNA mismatch repair deficiency and extended colorectal resection for metachronous colorectal neoplasia risk in young patients with colorectal cancer. This is a retrospective review of 285 patients identified in our GI cancer registry with colorectal cancer diagnosed at 35 years or younger in the absence of polyposis. Using univariate and multivariate analysis, we assessed the prognostic role of mismatch repair deficiency and standard clinicopathologic characteristics, including the extent of resection, on the rate of developing metachronous colorectal neoplasia requiring resection. Mismatch repair deficiency was identified in biospecimens from 44% of patients and was significantly associated with an increased risk for metachronous colorectal neoplasia requiring resection (10-year cumulative risk, 13.5% ± 4.2%) compared with 56% of patients with mismatch repair-intact colorectal cancer (10-year cumulative risk, 5.8% ± 3.3%; p = 0.011). In multivariate analysis, mismatch repair deficiency was associated with a HR of 3.65 (95% CI, 1.44-9.21; p = 0.006) for metachronous colorectal neoplasia, whereas extended resection with ileorectal or ileosigmoid anastomosis significantly decreased the risk of metachronous colorectal neoplasia (HR, 0.21; 95% CI, 0.05-0.90; p = 0.036). This study had a retrospective design, and, therefore, recommendations for colorectal cancer surgery and screening were not fully standardized. Quality of life after colorectal cancer surgery was not assessed. Young patients with colorectal cancer with molecular hallmarks of Lynch syndrome were at significantly higher risk for the development of subsequent colorectal neoplasia. This risk was significantly reduced in those who underwent extended

Young People with Cancer: A Handbook for Parents. Revised Edition.

ERIC Educational Resources Information Center

National Cancer Inst. (NIH), Bethesda, MD.

This book informs parents and families of children and young adults with cancer about the most common types of cancer in the young, treatments and their side effects, and common issues that arise with a cancer diagnosis. Aspects of the disease, including characteristics of leukemia and solid tumors, are described. Treatment issues discussed…

Oncofertility for gynecologic and non-gynecologic cancers: fertility sparing in young women of reproductive age.

PubMed

Dursun, Polat; Doğan, N Utku; Ayhan, Ali

2014-12-01

About ten percent of all female cancer survivors is younger than 40 years of age. For these young women the primary goal is to ensure the highest possibility of cure and to maintain the reproductive functions as well. Oncofertility is a new concept including both oncology and reproductive medicine. By this recently defined concept young women will have maximal chance to make an optimal decision without any significant impact and delay in oncologic outcome. Oncofertility concept could be applied for genital cancer as well as non-genital cancer of reproductive age. Currently sperm and embryo banking are the standard methods used for young patients with cancer whose future fertility is under risk. In contrary oocyte banking, ovarian tissue cryopreservation are all controversial procedures and still accepted as experimental by many authors although American Society of Reproductive Medicine (ASRM) consideres oocyte cryopreservation "no longer experimental". For genital cancers procedures for oncofertility depends on the type of the cancer and the treatment of choice. In this review the current data and concepts regarding oncofertility concept including the gynecologic oncologic perspective is reviewed. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

Young patients', parents', and survivors' communication preferences in paediatric oncology: results of online focus groups.

PubMed

Zwaanswijk, Marieke; Tates, Kiek; van Dulmen, Sandra; Hoogerbrugge, Peter M; Kamps, Willem A; Bensing, Jozien M

2007-11-09

Guidelines in paediatric oncology encourage health care providers to share relevant information with young patients and parents to enable their active participation in decision making. It is not clear to what extent this mirrors patients' and parents' preferences. This study investigated communication preferences of childhood cancer patients, parents, and survivors of childhood cancer. Communication preferences were examined by means of online focus groups. Seven patients (aged 8-17), 11 parents, and 18 survivors (aged 8-17 at diagnosis) participated. Recruitment took place by consecutive inclusion in two Dutch university oncological wards. Questions concerned preferences regarding interpersonal relationships, information exchange and participation in decision making. Participants expressed detailed and multi-faceted views regarding their needs and preferences in communication in paediatric oncology. They agreed on the importance of several interpersonal and informational aspects of communication, such as honesty, support, and the need to be fully informed. Participants generally preferred a collaborative role in medical decision making. Differences in views were found regarding the desirability of the patient's presence during consultations. Patients differed in their satisfaction with their parents' role as managers of the communication. Young patients' preferences mainly concur with current guidelines of providing them with medical information and enabling their participation in medical decision making. Still, some variation in preferences was found, which faces health care providers with the task of balancing between the sometimes conflicting preferences of young cancer patients and their parents.

The work life and career development of young breast cancer survivors.

PubMed

Raque-Bogdan, Trisha L; Hoffman, Mary Ann; Ginter, Amanda C; Piontkowski, Sarah; Schexnayder, Kelci; White, Rachel

2015-10-01

Breast cancer survivors represent the largest proportion of cancer survivors, and the rate of young breast cancer survivors who are diagnosed before the age of 40 is increasing. Cancer survivorship scholarship has begun to address many aspects of survivors' quality of life, yet the role of work and career issues have been understudied, particularly for young survivors. To explore the work lives and career development of young breast cancer survivors, this study used consensual qualitative research methodology (Hill, Thompson, & Williams, 1997) to analyze data from qualitative interviews with 13 young women diagnosed with breast cancer before the age of 40. The 4 career-related domains that emerged from the data were (a) cancer-related work challenges, (b) coping with cancer-related work challenges, (c) reappraisal of career development after cancer, and (d) components of career and life satisfaction after cancer. Experiencing breast cancer at a young age was viewed by participants as contributing to an increased desire for work to provide a sense of meaning as well as financial security and insurance. Cancer was further viewed as contributing to lost control over career success and work choices, treatment side effects that interfere with work self-efficacy and capabilities, and interpersonal difficulties connecting within and outside of work. Women with more extensive cancer treatment and side effects reported greater work struggles. Despite this, participants' cancer narratives were characterized by a range of coping strategies, including reframing and seeking control, and by evidence of persistence, resilience, and hope. Implications for research and practice are discussed. (c) 2015 APA, all rights reserved).

Measuring Development of Adolescent and Young Adult Cancer Patients: An Integrative Review of Available Instruments.

PubMed

Bell, Cynthia J; Bell, Ryan A; Zebrack, Brad; Kato, Ikuko; Morse, Alyssa; Borinstein, Scott C

2018-06-01

Adolescents and young adults (AYAs) 15-39 years old face unique challenges during cancer treatment as developmental and social needs are often disrupted to achieve cure. Developmentally appropriate supportive care for AYAs across the cancer trajectory is needed. The purpose of this review is to identify and describe instruments that measure AYA development across physical, psychological, and social domains, commenting on the instruments' psychometric properties and usefulness in clinical practice and research. A computerized literature search published in English from 1950 to January of 2017 was conducted utilizing the following databases: Mental Measurements Yearbook (MMY), Health and Psychosocial Instruments, PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, and Google Scholar. The following instruments were identified and described: the Child Health and Illness Profile-Adolescent Edition (CHIP-AE); the Course of Life Questionnaire; the Developmental Task Questionnaire (DTQ); the Impact of Cancer scale for childhood survivors and AYAs (IOC-CS and IOC-AYA); the McCleery Scale of Adolescent Development (MSAD); and the Minneapolis-Manchester Quality of Life Adolescent and Young Adult Form (MMQL-AF and MMQL-YA). Among currently available instruments, the IOC-AYA and MMQL-AF were relevant to AYAs undergoing or completing cancer therapy. However, validation for the IOC-AYA occurred in cancer survivors off treatment so further psychometric evaluation is needed in AYAs currently undergoing cancer treatment. Furthermore, the MMQL-AF has been validated for use during active cancer treatment, but is limited to adolescents 13-20 years. Further research may be needed to create or refine instruments measuring the developmental impact in AYAs, particularly emerging adults undergoing active cancer treatment.

Young women's responses to smoking and breast cancer risk information

PubMed Central

Bottorff, Joan L.; McKeown, Stephanie Barclay; Carey, Joanne; Haines, Rebecca; Okoli, Chizimuzo; Johnson, Kenneth C.; Easley, Julie; Ferrence, Roberta; Baillie, Lynne; Ptolemy, Erin

2010-01-01

Current evidence confirms that young women who smoke or who have regular long-term exposure to secondhand smoke (SHS) have an increased risk of developing premenopausal breast cancer. The aim of this research was to examine the responses of young women to health information about the links between active smoking and SHS exposure and breast cancer and obtain their advice about messaging approaches. Data were collected in focus groups with 46 women, divided in three age cohorts: 15–17, 18–19 and 20–24 and organized according to smoking status (smoking, non-smoking and mixed smoking status groups). The discussion questions were preceded by information about passive and active smoking and its associated breast cancer risk. The study findings show young women's interest in this risk factor for breast cancer. Three themes were drawn from the analysis: making sense of the information on smoking and breast cancer, personal susceptibility and tobacco exposure and suggestions for increasing awareness about tobacco exposure and breast cancer. There was general consensus on framing public awareness messages about this risk factor on ‘protecting others’ from breast cancer to catch smokers’ attention, providing young women with the facts and personal stories of breast cancer to help establish a personal connection with this information and overcome desensitization related to tobacco messages, and targeting all smokers who may place young women at risk. Cautions were also raised about the potential for stigmatization. Implications for raising awareness about this modifiable risk factor for breast cancer are discussed. PMID:20080807

Medication adherence decision-making among adolescents and young adults with cancer.

PubMed

McGrady, Meghan E; Brown, Gabriella A; Pai, Ahna L H

2016-02-01

Nearly half of all adolescents and young adults (AYAs) with cancer struggle to adhere to oral chemotherapy or antibiotic prophylactic medication included in treatment protocols. The mechanisms that drive non-adherence remain unknown, leaving health care providers with few strategies to improve adherence among their patients. The purpose of this study was to use qualitative methods to investigate the mechanisms that drive the daily adherence decision-making process among AYAs with cancer. Twelve AYAs (ages 15-31) with cancer who had a current medication regimen that included oral chemotherapy or antibiotic prophylactic medication participated in this study. Adolescents and young adults completed a semi-structured interview and a card sorting task to elucidate the themes that impact adherence decision-making. Interviews were transcribed verbatim and coded twice by two independent raters to identify key themes and develop an overarching theoretical framework. Adolescents and young adults with cancer described adherence decision-making as a complex, multi-dimensional process influenced by personal goals and values, knowledge, skills, and environmental and social factors. Themes were generally consistent across medication regimens but differed with age, with older AYAs discussing long-term impacts and receiving physical support from their caregivers more than younger AYAs. The mechanisms that drive daily adherence decision-making among AYAs with cancer are consistent with those described in empirically-supported models of adherence among adults with other chronic medical conditions. These mechanisms offer several modifiable targets for health care providers striving to improve adherence among this vulnerable population. Copyright © 2015 Elsevier Ltd. All rights reserved.

Medication Adherence Decision-Making Among Adolescents and Young Adults with Cancer

PubMed Central

McGrady, Meghan E.; Brown, Gabriella A.; Pai, Ahna L. H.

2015-01-01

Purpose Nearly half of all adolescents and young adults (AYAs) with cancer struggle to adhere to oral chemotherapy or antibiotic prophylactic medication included in treatment protocols. The mechanisms that drive non-adherence remain unknown, leaving health care providers with few strategies to improve adherence among their patients. The purpose of this study was to use qualitative methods to investigate the mechanisms that drive the daily adherence decision-making process among AYAs with cancer. Methods Twelve AYAs (ages 15–31) with cancer who had a current medication regimen that included oral chemotherapy or antibiotic prophylactic medication participated in this study. Adolescents and young adults completed a semi-structured interview and a card sorting task to elucidate the themes that impact adherence decision-making. Interviews were transcribed verbatim and coded twice by two independent raters to identify key themes and develop an overarching theoretical framework. Results Adolescents and young adults with cancer described adherence decision-making as a complex, multi-dimensional process influenced by personal goals and values, knowledge, skills, and environmental and social factors. Themes were generally consistent across medication regimens but differed with age, with older AYAs discussing long-term impacts and receiving physical support from their caregivers more than younger AYAs. Conclusions The mechanisms that drive daily adherence decision-making among AYAs with cancer are consistent with those described in empirically-supported models of adherence among adults with other chronic medical conditions. These mechanisms offer several modifiable targets for health care providers striving to improve adherence among this vulnerable population. PMID:26372619

Patient-provider communication about the emotional cues and concerns of adolescent and young adult patients and their family members when receiving a diagnosis of cancer.

PubMed

Korsvold, Live; Mellblom, Anneli V; Lie, Hanne C; Ruud, Ellen; Loge, Jon Håvard; Finset, Arnstein

2016-10-01

This study aimed to examine how emotional cues/concerns are expressed and responded to in medical consultations with adolescent and young adults (AYA), an understudied patient group, at the time of cancer diagnosis. Nine consultations in which AYA patients aged 12-25 years were informed about their cancer diagnosis and treatment plans were audio recorded. Expressions of emotional cues/concerns and physicians' responses were identified and coded using The Verona Coding Definitions of Emotional Sequences (VR-CoDES). A total of 135 emotional cues/concerns (range: 2-26, median: 13) were identified. Cues or concerns that were expressed by patients and relatives following questions from physicians were more often explicit than patient-initiated cues/concerns. Questions about medical and practical issues could often be understood as ways of expressing emotional cues. When patients or relatives expressed less explicit verbal cues about underlying concerns, physicians often responded by presenting medical information without commenting on the emotional aspect indicated by the cue. The communication was dominated by information-giving, but the questions from patients and relatives and their responses to the information often had emotional connotations. Patients' requests for information may include an emotional aspect. These preliminary findings should be tested in a larger sample. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Providing developmentally appropriate psychosocial care to adolescent and young adult cancer survivors.

PubMed

D'Agostino, Norma M; Penney, Annette; Zebrack, Brad

2011-05-15

To deliver developmentally appropriate psychosocial care, the key developmental tasks facing adolescents and young adults (AYA) need to be taken into consideration. These include establishing autonomy from parents; a personal set of values and identity; strong peer relationships, including intimate and sexual relationships; and obtaining adequate preparation to join the workforce. To minimize the amount of disruption caused by the cancer experience and to maximize the health-related quality of life of AYA patients, young individuals with cancer need opportunities to participate as much as possible in typical AYA activities and to master the developmental tasks of this life stage. Promoting a sense of normalcy is essential. To achieve this, the health care environment must be flexible and recognize the important role of peers. Informational and practical supports also are necessary for AYA to stay on track developmentally in the context of coping with cancer. Critical elements of effective AYA psychosocial services should include access to AYA-specific information and support resources, fertility and sexuality counseling, programs to maximize academic and vocational functioning, and financial support. © 2011 American Cancer Society

Teenagers and young adults with cancer in Europe: from national programmes to a European integrated coordinated project.

PubMed

Stark, D; Bielack, S; Brugieres, L; Dirksen, U; Duarte, X; Dunn, S; Erdelyi, D J; Grew, T; Hjorth, L; Jazbec, J; Kabickova, E; Konsoulova, A; Kowalczyk, J R; Lassaletta, A; Laurence, V; Lewis, I; Monrabal, A; Morgan, S; Mountzios, G; Olsen, P R; Renard, M; Saeter, G; van der Graaf, W T; Ferrari, A

2016-05-01

Over 14 000 patients aged 15-24 are estimated to be diagnosed with cancer in the European Union (EU) each year. Teenagers and young adults (TYA) often fall down gaps between children's and adults cancer services. The specific challenges of providing optimal care to them are described, but we present a summary of recent progress. Progress to overcome these challenges is happening at different rates across Europe. We summarise the European national projects in this field but more recently we have seen the beginnings of European coordination. Within the EU 7th Funding Programme (FP7) European Network for Cancer Research in Children and Adolescents programme (ENCCA), a specific European Network for Teenagers and Young Adults with Cancer has held a series of scientific meetings, including professionals, patients and caregivers. This group has proposed unanswered research questions and agreed key features of a high-quality service that can improve outcomes for TYA with cancer, including the primacy of collaboration between adult and paediatric services to eliminate the gap in the management of TYA with cancer. © 2015 John Wiley & Sons Ltd.

Social Media: Support for Survivors and Young Adults With Cancer.

PubMed

Walton, AnnMarie L; Albrecht, Tara A; Lux, Lauren; Judge Santacroce, Sheila

2017-10-01

Social media use is ubiquitous among young adults. Young adults with cancer must make important decisions about where, what, and how to share information on social media. Oncology nurses are in a unique position to start conversations about the risks and benefits of social media use. This column aims to review a variety of social media platforms that may be used by young adults with cancer and provide guidance to nurses on initiating open dialogue with young adults about social media usage. 
.

A qualitative exploration of supports and unmet needs of diverse young women with breast cancer.

PubMed

Ruddy, Kathryn J; Greaney, Mary L; Sprunck-Harrild, Kim; Meyer, Meghan E; Emmons, Karen M; Partridge, Ann H

2015-09-01

Young women with breast cancer face different challenges than those faced by older women because of their age and life stage, yet few studies have focused on the different challenges faced by women from diverse populations. To explore existing supports that are important during diagnosis and treatment and the unmet needs for information and support in young women with breast cancer. We conducted 20 semistructured interviews in English with women aged 42 or younger who had been diagnosed with stage I-III invasive breast cancer within the previous 4 years. We recorded and transcribed the interviews and used collaborative group immersion/ crystallization to analyze data, identify emergent themes, and determine if there were differences by race/ethnicity. 20 participants, recruited from 9 US states and Canada, were interviewed, of whom 25% were Hispanic, 15% were black, 50% were white and non-Hispanic, and 10% were another race/ethnicity. Faith and/or spirituality and family were reported as important sources of support by many of the participants. Most of them lamented the inadequacy of their connections with other young survivors and also of supports for their family. Some recommended that young patients be provided with more information about: treatment-related physical and emotional changes; fertility and menopause; relationships after cancer; navigating work challenges; and transitioning into survivorship. None of these supports or recommendations was limited to a specific race/ethnicity or geographic region. Small sample size, exclusion of non-English speakers. Conclusions Key informant interviews of young breast cancer survivors identified similar needs for education and support across various races/ethnicities and geographies. Key informant interviews of young breast cancer survivors identified similar needs for education and support across various races/ethnicities and geographies. ©2015 Frontline Medical Communications.

Exploring Coping Strategies Among Young Asian American Women Breast Cancer Survivors.

PubMed

Yoo, Grace J; Sudhakar, Anantha; Le, Mai Nhung; Levine, Ellen G

2017-03-01

In recent years, breast cancer rates among young Asian American women have been increasing. Despite increases in breast cancer among young Asian American women, little is known about how this population copes throughout diagnosis, treatment, and survivorship. This study was a qualitative exploration of how young Asian American women cope with breast cancer diagnosis, treatment, and survivorship. In-depth interviews with 22 young (under the age of 50) Asian American women diagnosed with early stage breast cancer were conducted. Through qualitative data analysis, three major themes emerged including moving from managing the emotions of others to expressing emotional vulnerability, moving from work and productivity to work-life balance, and moving beyond the family and reaching out to breast cancer survivors. At diagnosis, participants worked to maintain normalcy including caring for others and working during treatment. Once treatment was over, women worked to find ways to use their experience as a transformative one and also to develop more positive coping skills including expressing emotional vulnerability and reaching out to others. Further studies are needed to create and test culturally tailored supportive interventions that enhance positive coping tools among young Asian American women diagnosed by breast cancer.

Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP).

PubMed

Clinton-McHarg, Tara; Carey, Mariko; Sanson-Fisher, Rob; D'Este, Catherine; Shakeshaft, Anthony

2012-01-30

Adolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development. The aim of this study was to develop a psychometrically rigorous measure of unmet need to capture the specific needs of this group. Items were developed following a comprehensive literature review, focus groups with AYAs, and feedback from health care providers, researchers and other professionals. The measure was pilot tested with 32 AYA cancer survivors recruited through a state-based cancer registry to establish face and content validity. A main sample of 139 AYA cancer patients and survivors were recruited through seven treatment centres and invited to complete the questionnaire. To establish test-retest reliability, a sub-sample of 34 participants completed the measure a second time. Exploratory factor analysis was performed and the measure was assessed for internal consistency, discriminative validity, potential responsiveness and acceptability. The Cancer Needs Questionnaire - Young People (CNQ-YP) has established face and content validity, and acceptability. The final measure has 70 items and six factors: Treatment Environment and Care (33 items); Feelings and Relationships (14 items); Daily Life (12 items); Information and Activities (5 items); Education (3 items); and Work (3 items). All domains achieved Cronbach's alpha values greater than 0.80. Item-to-item test-retest reliability was also high, with all but four items reaching weighted kappa values above 0.60. The CNQ-YP is the first multi-dimensional measure of unmet need which has been developed specifically for AYA cancer patients and survivors. The measure displays a strong factor structure, and excellent internal consistency and test-retest reliability. However, the small sample size has implications for the reliability of the statistical analyses undertaken, particularly the exploratory factor analysis. Future studies with a

Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP)

PubMed Central

2012-01-01

Background Adolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development. The aim of this study was to develop a psychometrically rigorous measure of unmet need to capture the specific needs of this group. Methods Items were developed following a comprehensive literature review, focus groups with AYAs, and feedback from health care providers, researchers and other professionals. The measure was pilot tested with 32 AYA cancer survivors recruited through a state-based cancer registry to establish face and content validity. A main sample of 139 AYA cancer patients and survivors were recruited through seven treatment centres and invited to complete the questionnaire. To establish test-retest reliability, a sub-sample of 34 participants completed the measure a second time. Exploratory factor analysis was performed and the measure was assessed for internal consistency, discriminative validity, potential responsiveness and acceptability. Results The Cancer Needs Questionnaire - Young People (CNQ-YP) has established face and content validity, and acceptability. The final measure has 70 items and six factors: Treatment Environment and Care (33 items); Feelings and Relationships (14 items); Daily Life (12 items); Information and Activities (5 items); Education (3 items); and Work (3 items). All domains achieved Cronbach's alpha values greater than 0.80. Item-to-item test-retest reliability was also high, with all but four items reaching weighted kappa values above 0.60. Conclusions The CNQ-YP is the first multi-dimensional measure of unmet need which has been developed specifically for AYA cancer patients and survivors. The measure displays a strong factor structure, and excellent internal consistency and test-retest reliability. However, the small sample size has implications for the reliability of the statistical analyses undertaken, particularly the exploratory

Factors influencing the documentation of fertility-related discussions for adolescents and young adults with cancer.

PubMed

Skaczkowski, G; White, V; Thompson, K; Bibby, H; Coory, M; Pinkerton, R; Nicholls, W; Orme, L M; Conyers, R; Phillips, M B; Osborn, M; Harrup, R; Anazodo, A

2018-06-01

A cancer diagnosis and treatment may have significant implications for a young patient's future fertility. Documentation of fertility-related discussions and actions is crucial to providing the best follow-up care, which may occur for many years post-treatment. This study examined the rate of medical record documentation of fertility-related discussions and fertility preservation (FP) procedures for adolescents and young adults (AYAs) with cancer in Australia. A retrospective review of medical records for 941 patients in all six Australian states. Patients were identified through population-based cancer registries (four states) and hospital admission lists (two states). Trained data collectors extracted information from medical records using a comprehensive data collection survey. Records were reviewed for AYA patients (aged 15-24 years at diagnosis), diagnosed with acute myeloid leukaemia, acute lymphoblastic leukaemia, central nervous system (CNS) tumours, soft tissue sarcomas (STS), primary bone cancer or Ewing's family tumours between 2007 and 2012. 47.2% of patients had a documented fertility discussion and 35.9% had a documented FP procedure. Fertility-related documentation was less likely for female patients, those with a CNS or STS diagnosis and those receiving high-risk treatments. In multivariable models, adult hospitals with an AYA focus were more likely to document fertility discussions (odds ratio[OR] = 1.60; 95%CI = 1.08-2.37) and FP procedures (OR = 1.74; 95%CI = 1.17-2.57) than adult hospitals with no AYA services. These data provide the first national, population-based estimates of fertility documentation for AYA cancer patients in Australia. Documentation of fertility-related discussions was poor, with higher rates observed in hospitals with greater experience of treating AYA patients. Copyright © 2018 Elsevier Ltd. All rights reserved.

Tailoring the delivery of cancer diagnosis to adolescent and young adult patients displaying strong emotions: An observational study of two cases

PubMed Central

Korsvold, Live; Lie, Hanne Cathrine; Mellblom, Anneli Viktoria; Ruud, Ellen; Loge, Jon Håvard; Finset, Arnstein

2016-01-01

Delivering the bad news of a cancer diagnosis to adolescent and young adult (AYA) patients who display strong emotions is particularly challenging not the least because AYAs are at a vulnerable developmental stage. Due to the lack of research on how to personalize the delivery of bad news to AYA patients’ emotions we report a case study of the communicative behavior of oncologists in two such consultations to describe the complexity of the phenomena at study. We audio-recorded and transcribed consultations where oncologists delivered cancer diagnoses to nine AYAs aged 12–25 years. Two of these patients displayed particularly strong emotional behavior (anger, fear, and sadness) and were chosen as cases. An interpretative analysis in three steps was applied to investigate the oncologists’ communicative behavior when delivering bad news. The focus was on how the oncologists responded to the strong but different emotional behaviors of the AYAs. We also related the oncologists’ communicative behavior to elements from a widely used protocol for delivering bad news. We found that the oncologists applied five communication strategies: elicit patient perspective, provide information, respond to patient's expression of emotion (acknowledging and containing emotions), encourage commitment to treatment, and provide hope. The findings illustrate how oncologists’ communicative behavior may be tailored to individual expressions of emotions in AYA cancer patients. PMID:27125477

Recurrent TP53 missense mutation in cancer patients of Arab descent.

PubMed

Zick, Aviad; Kadouri, Luna; Cohen, Sherri; Frohlinger, Michael; Hamburger, Tamar; Zvi, Naama; Plaser, Morasha; Avital, Eilat; Breuier, Shani; Elian, Firase; Salah, Azzam; Goldberg, Yael; Peretz, Tamar

2017-04-01

Hereditary cancer comprises more than 10% of all breast cancer cases. Identification of germinal mutations enables the initiation of a preventive program that can include early detection or preventive treatment and may also have a major impact on cancer therapy. Several recurrent mutations were identified in the BRCA1/2 genes in Jewish populations however, in other ethnic groups in Israel, no recurrent mutations were identified to date. Our group established panel sequencing in cancer patients to identify recurrent, founder, and new mutations in the heterogeneous and diverse populations in Israel, We evaluated five breast cancer patients of Arab descent diagnosed with cancer before the age of 50 years and identified the previously described TP53 mutation, c.541C>T, R181C (rs587782596), in two women from unrelated Arab families. The two probands were diagnosed with breast cancer at a young age (27 and 34 years) and had significant family history spanning a wide range of tumors (breast cancer (BC), papillary thyroid cancer, glioblastoma multiform (GBM), colon cancer and leukemia). The R181C variant is expected to disrupt p53 at the ASPP2 binding domain but not the DNA binding domain and is defined by Clinvar as likely pathogenic and in HGMD as disease mutation. We further tested 85 unrelated Arab cancer patients and father of a BC carrier patient for TP53 c.541C>T using a real time polymerase chain reaction (RT-PCR) approach and identified four additional carriers, two with BC one with lung cancer, and the father of a BC carrier patient, diagnosed with GBM. Another carrier suffering from BC was identified using a Myriad panel, suggesting a recurrent mutation in this population with a frequency of 5/42 (11.9%) of our selected BC patients. We suggest testing Arab women with a breast cancer at a young age, Arab patients with multiple malignancies, or with suggestive family history for TP53 c.541C>T.

A rising trend in the incidence of advanced gastric cancer in young Hispanic men.

PubMed

Merchant, Shaila J; Kim, Joseph; Choi, Audrey H; Sun, Virginia; Chao, Joseph; Nelson, Rebecca

2017-03-01

Although the incidence of gastric cancer has been decreasing, recent reports suggest an increased rate in select populations. We sought to evaluate trends in gastric cancer incidence to identify high-risk populations. Gastric cancer incidence rates from 1992 to 2011 were computed with use of the Surveillance, Epidemiology, and End Results (SEER) registry. We evaluated trends in incidence rates by calculating the annual percent change (APC) across three age groups (20-49 years, 50-64 years, and 65 years or older) and four racial/ethnic groups (Hispanics, non-Hispanic whites, blacks, and Asian/Pacific Islanders). We identified 41,428 patients with gastric cancer. For the entire cohort during the study period, the APC was decreased. When patients were grouped according to sex, the APC was flat or decreased in women regardless of age or race/ethnicity. The APC was also flat or decreased for all men except young Hispanic men (20-49 years), who had an increased APC of nearly 1.6 % (1.55 %, 95 % confidence interval 0.26-2.86 %). Furthermore, young Hispanic men were the only group to have increased incidence of stage IV disease (APC 4.34 %, 95 % confidence interval 2.76-5.94 %) and poorly differentiated tumors (APC 2.08 %, 95 % confidence interval 0.48-3.70 %). The APC of the incidence of gastric cancer in young Hispanic men places it among the top cancers with rising incidence in the USA. This is concomitant with increased incidence of advanced disease at presentation. This major public health concern warrants additional research to determine the cause of the increasing incidence in this group.

Prevalence of mental disorders and psychosocial distress in German adolescent and young adult cancer patients (AYA).

PubMed

Geue, Kristina; Brähler, Elmar; Faller, Hermann; Härter, Martin; Schulz, Holger; Weis, Joachim; Koch, Uwe; Wittchen, Hans-Ulrich; Mehnert, Anja

2018-04-12

This study provides prevalence data of mental disorders (4-week, 1-year, lifetime) and psychological distress in Adolescent and Young Adult (AYAs) with cancer. We included an AYA subsample (15 to 39 year olds; diagnosed within the last 5 years) extracted from a larger sample (4.020 cancer patients) who had been recruited for an epidemiological study across all major tumor entities. Participants were assessed with a depression screener (PHQ-9). Following that, 50% of the participants who scored below the cutoff of 9 and all patients who scored above were assessed using the Composite International Diagnostic Interview for Oncology (CIDI-O). Patients also completed an anxiety screener (GAD-7). A total of 302 AYA (167 completed CIDI-O) were identified. With regard to psychological distress, 29.5% of the AYA had increased depression symptoms (PHQ-9), and 20.8% had increased anxiety symptoms (GAD-7). Gender and age were associated with psychological distress, with women and older AYA being found to have higher distress. The 4-week prevalence of mental disorders of any kind was 46.7% (95%-CI:39%-55%). Anxiety (24.4%; 95%-CI:20%-36%) and adjustment disorders (14.1%; 95%-CI:9%-19%) had the highest prevalence rates. The lowest prevalence rates were reported for alcohol dependence (0.8%; 95%-CI:0%-2%) and somatoform disorders (3.7%; 95%-CI:1%-7%). The 1-year-prevalence was 55.4% (CI:47.36-62.64), and the lifetime-prevalence was 69.5% (CI: 62.29-77.06). Our findings may sensitize clinicians to the possible presence of mental disorders in AYA. The results indicate that there is a strong need for psycho-oncological interventions designed to improve mental health in AYAs with cancer at all stages of medical care. Copyright © 2018 John Wiley & Sons, Ltd.

The prevalence of thyroid cancer in patients with hyperthyroidism.

PubMed

Kunjumohamed, Fathimabeebi P; Al-Busaidi, Noor B; Al-Musalhi, Hilal N; Al-Shereiqi, Sulaiman Z; Al-Salmi, Issa S

2015-07-01

To determine the prevalence of thyroid cancer in patients with hyperthyroidism. This is a retrospective observational study using the data of 71 Omani patients with a diagnosis of hyperthyroidism due to Grave's disease, toxic multinodular goiter, and solitary toxic adenoma. These patients underwent thyroidectomy at the Royal Hospital (RH), Muscat, Oman, and were followed up at the National Diabetes and Endocrine Center (NDEC) between 2007 and 2013. The details were collected from the medical records of both the RH and the NDEC. Patients who underwent thyroidectomy for other reasons like non-toxic goiter and hypothyroidism with cancer were excluded from the study. Thyroid cancer was identified in 32.8% (n=23) of patients with hyperthyroidism. Half of these patients 52.1% (n=12) had papillary micro-cancer (intra-thyroidal), and 3 patients with Grave's disease (13%) had lymph nodes metastasis (loco-regional infiltration. The cancer preponderance was higher in young (n=21, 91.3%) and female patients (n=18, 73.9%). Most patients with thyroid cancer had abnormal ultrasound neck findings and thyroid scintigraphy (99 mTc uptake). Many patients with hyperthyroidism in Muscat, Oman, especially those with Grave's disease, show malignancy, and hence a proper initial evaluation of these patients is required as part of long-term management.

Congenital neurodevelopmental anomalies in pediatric and young adult cancer.

PubMed

Wong-Siegel, Jeannette R; Johnson, Kimberly J; Gettinger, Katie; Cousins, Nicole; McAmis, Nicole; Zamarione, Ashley; Druley, Todd E

2017-10-01

Congenital anomalies that are diagnosed in at least 120,000 US infants every year are the leading cause of infant death and contribute to disability and pediatric hospitalizations. Several large-scale epidemiologic studies have provided substantial evidence of an association between congenital anomalies and cancer risk in children, suggesting potential underlying cancer-predisposing conditions and the involvement of developmental genetic pathways. Electronic medical records from 1,107 pediatric, adolescent, and young adult oncology patients were reviewed. The observed number (O) of congenital anomalies among children with a specific pediatric cancer subtype was compared to the expected number (E) of anomalies based on the frequency of congenital anomalies in the entire study population. The O/E ratios were tested for significance using Fisher's exact test. The Kaplan-Meier method was used to compare overall and neurological malignancy survival rates following tumor diagnosis. Thirteen percent of patients had a congenital anomaly diagnosis prior to their cancer diagnosis. When stratified by congenital anomaly subtype, there was an excess of neurological anomalies among children with central nervous system tumors (O/E = 1.56, 95%CI 1.13-2.09). Male pediatric cancer patients were more likely than females to have a congenital anomaly, particularly those <5 years of age (O/E 1.35, 95%CI 0.97-1.82). Our study provides additional insight into the association between specific congenital anomaly types and pediatric cancer development. Moreover, it may help to inform the development of new screening policies and support hypothesis-driven research investigating mechanisms underlying tumor predisposition in children with congenital anomalies. © 2017 The Authors. American Journal of Medical Genetics Part A Published by Wiley Periodicals, Inc.

Epidemiology and prognosis of breast cancer in young women

PubMed Central

Assi, Hussein A.; Khoury, Katia E.; Dbouk, Haifa; Khalil, Lana E.; Mouhieddine, Tarek H.

2013-01-01

Breast cancer is the most common malignancy in women with 6.6% of cases diagnosed in young women below the age of 40. Despite variances in risk factors, Age Standardized Incidence Rates of breast cancer in young women vary little between different countries. Review of modifiable risk factors shows that long-term use of oral contraceptives, low body mass index (BMI) and high animal fat diet consumption are associated with increased risk of premenopausal breast cancer. Decreased physical activity and obesity increase risks of breast cancer in postmenopausal women, but data on premenopausal women rather shows that high BMI is associated with decreased risk of breast cancer. Non-modifiable risk factors such as family history and genetic mutations do account for increased risks of breast cancer in premenopausal women. Breast cancer in young women is associated with adverse pathological factors, including high grade tumors, hormone receptor negativity, and HER2 overexpression. This has a significant negative impact on the rate of local recurrence and overall survival. Moreover, younger women often tend to present with breast cancer at a later stage than their older counterparts, which further explains worse outcome. Despite these factors, age per se is still being advocated as an independent role player in the prognosis. This entails more aggressive treatment modalities and the need for closer monitoring and follow-up. PMID:23819024

Young Kim, PhD | Division of Cancer Prevention

Cancer.gov

Young S Kim, PhD, joined the Division of Cancer Prevention at the National Cancer Institute in 1998 as a Program Director who oversees and monitors NCI grants in the area of Nutrition and Cancer. She serves as an expert in nutrition, molecular biology, and genomics as they relate to cancer prevention. Dr. Kim assists with research initiatives that will advance nutritional

Perceptions of risk among childhood and young adult cancer survivors who smoke.

PubMed

Ford, Jennifer S; Puleo, Elaine; Sprunck-Harrild, Kim; deMoor, Janet; Emmons, Karen M

2014-08-01

Despite the fact that childhood and young adult cancer survivors are at increased risk for chronic health problems as a result of their cancer treatment, many use tobacco, thereby increasing their risks. Perceptions of risk related to tobacco use can be targeted for interventions aimed at improving health behaviors for childhood, adolescent, and young adult cancer survivors. Understanding the covariates of perceptions of health risks among young adult survivors who smoke will help to determine targets for intervention. Three hundred seventy-four participants who were diagnosed with cancer prior to age 35, currently between 18 and 55 years of age, and current smokers were recruited as part of a larger smoking cessation study, Partnership for Health-2 (PFH-2). Data were collected by telephone survey. Overall, women had the highest perception of risk for serious health problems, a second cancer, and heart problems. Additionally, those participants who were dependent on nicotine endorsed that they were at higher risk of serious health problems and second cancers, but not heart problems. Finally, Hodgkin lymphoma survivors reported that they were at increased risk for second cancers and heart problems compared to their “healthy” peers. Young adult cancer survivors who smoke correctly perceived some of their increased health risks. Additional motivation and education is needed for those young adult cancer survivors who perceive their increased health risks yet continue to smoke. Further education is needed for young survivors so they have a fully appropriate sense of risk, especially as it relates to their tobacco use.

76 FR 787 - Advisory Committee on Breast Cancer in Young Women (ACBCYW)

Federal Register 2010, 2011, 2012, 2013, 2014

2011-01-06

... Committee on Breast Cancer in Young Women (ACBCYW) In accordance with section 10(a)(2) of the Federal... and evaluation of evidence-based activities designed to prevent breast cancer (particularly among... aspects of breast cancer in young women including biology, genomics, prevention, early diagnosis...

Coping with changes and uncertainty: A qualitative study of young adult cancer patients' challenges and coping strategies during treatment.

PubMed

Lie, Nataskja-Elena Kersting; Larsen, Torill Marie Bogsnes; Hauken, May Aasebø

2017-07-31

Young adult cancer patients (YACPs), aged 18-35 years when diagnosed with cancer, are in a vulnerable transitioning period from adolescence to adulthood, where cancer adds a tremendous burden. However, YACPs' challenges and coping strategies are under-researched. The objective of this study was to explore what challenges YACP experience during their treatment, and what coping strategies they applied to them. We conducted a qualitative study with a phenomenological-hermeneutic design, including retrospective, semi-structured interviews of 16 YACPs who had undergone cancer treatment. Data were analysed using thematic analysis and interpreted applying the Cognitive Activation Theory of Stress (CATS). We found "coping with changes and uncertainty" as overarching topic for YACPs' challenges, particularly related to five themes, including (1) receiving the diagnosis, (2) encountering the healthcare system, (3) living with cancer, (4) dealing with the impact of the treatment and (5) reactions from the social network. YACPs' coping strategies applied to these challenges varied broadly and ranged from maladaptive strategies, such as neglecting the situation, to conducive emotional or instrumental approaches to manage their challenges. The findings call for age-specific needs assessments, information and support for YACPs, and their families in order to facilitate YACPs' coping during their treatment. © 2017 John Wiley & Sons Ltd.

Increasing access to care for young adults with cancer: Results of a quality-improvement project using a novel telemedicine approach to supportive group psychotherapy.

PubMed

Melton, Laura; Brewer, Benjamin; Kolva, Elissa; Joshi, Tanisha; Bunch, Michelle

2017-04-01

Young adults with cancer experience high levels of psychological distress. Group interventions for cancer patients have been effective in reducing levels of psychological distress but suffer from high levels of attrition and serve a limited geographic area. In a quality-improvement project, we converted an existing in-person support group to a telemedicine format in the hopes of improving attendance and reducing geographic disparities in access to care. Eight young adults (18-40 years) with cancer were recruited from across Colorado. Participants received a tablet equipped with Wi-Fi and downloaded an HIPAA-compliant video-conferencing application. Participants attended six weekly supportive psychotherapy sessions. Participants found the group to be beneficial: the technology worked, they enjoyed the group format, and they would recommend it to others. The novel treatment interface allowed for low attrition rates due to the flexibility of a patient's location during the intervention. It allowed for provision of services to a geographically diverse population of medically ill young adults, as participants lived an average of 148 miles from the cancer center (range = 25-406 miles). Internet-based mental health care is an area of growing interest for providers, but few studies have evaluated its efficacy in patients with cancer, and even fewer in young adults with cancer. Incorporating technological advances into clinical practice will increase access to care, reduce geographic health disparities, and provide more consistent services.

Integrative clinical sequencing in the management of children and young adults with refractory or relapsed cancer

PubMed Central

Mody, Rajen J.; Wu, Yi-Mi; Lonigro, Robert J.; Cao, Xuhong; Roychowdhury, Sameek; Vats, Pankaj; Frank, Kevin M.; Prensner, John R.; Asangani, Irfan; Palanisamy, Nallasivam; Dillman, Jonathan R.; Rabah, Raja M.; Kunju, Laxmi Priya; Everett, Jessica; Raymond, Victoria M.; Ning, Yu; Su, Fengyun; Wang, Rui; Stoffel, Elena M.; Innis, Jeffrey W.; Roberts, J. Scott; Robertson, Patricia L.; Yanik, Gregory; Chamdin, Aghiad; Connelly, James A.; Choi, Sung; Harris, Andrew C.; Kitko, Carrie; Rao, Rama Jasty; Levine, John E.; Castle, Valerie P.; Hutchinson, Raymond J.; Talpaz, Moshe; Robinson, Dan R.; Chinnaiyan, Arul M.

2016-01-01

Importance Cancer is caused by a diverse array of somatic and germline genomic aberrations. Advances in genomic sequencing technologies have improved the ability to detect these molecular aberrations with greater sensitivity. However, integrating them into clinical management in an individualized manner has proven challenging. Objective To evaluate the use of integrative clinical sequencing and genetic counseling in the assessment and treatment of children and young adults with cancer. Design, Settings and Participants An observational, consecutive case series (May 2012–October 2014) of 102 children and young adults (mean age, 10.6; median age, 11.5, range: 0–22 years) with relapsed, refractory, or rare cancer at a single major academic medical center. Exposures Each participant underwent integrative clinical exome (tumor and germline DNA) and transcriptome (tumor RNA) sequencing along with genetic counseling. Results were discussed in a multi-disciplinary Precision Medicine Tumor Board (PMTB) and recommendations were reported to treating physicians and families. Main Outcomes and Measures Proportion of patients with potentially actionable findings (PAF), results of clinical actions based on integrative clinical sequencing (ICS), and estimated proportion of patients or their families at risk for future cancer. PAF was defined as any genomic findings discovered during sequencing analysis that could lead to a 1) change in patient management by providing a targetable molecular aberration, 2) change in diagnosis or risk stratification or 3) provides cancer-related germline findings, which inform patients/families about a potential future risk of various cancers; Results We screened 104 patients and enrolled 102 patients of which 91 (89%) had adequate tumor tissue available to complete sequencing and only these patients were included in all subsequent calculations, including 28 (31%) with hematological malignancies and 63 (69%) with solid tumors. Overall, 42 (46

The 'lost tribe' reconsidered: Teenagers and young adults treated for cancer in adult settings in the UK.

PubMed

Marshall, Steve; Grinyer, Anne; Limmer, Mark

2018-04-01

Although the UK has pioneered the development of specialist adolescent cancer units, the majority of teenagers and young adults (TYAs) continue to be treated at their local hospital or at a cancer centre alongside adults of all ages. This study aimed to elicit young people's views on this experience of having cancer treatment in an adult setting. Seventeen participants who had been treated for cancer in an adult hospital between the ages of 15 and 24 were recruited via cancer charities and social media. Telephone interviews were conducted with the participants and the resulting data were analysed using thematic analysis. Already feeling out of sync as a TYA with cancer, participants felt out of place in the adult setting. Four factors contributed to this negative experience: a lack of affinity with older patients; the challenging issues in the adult setting; the absence of empathy towards TYAs by staff; and the unsuitability of the environment for adolescents. Staff working with TYAs with cancer in the adult setting should be aware of the potentially detrimental impact of this environment on this cohort of patients, and consider ways of adapting and modifying their approach. Crown Copyright © 2018. Published by Elsevier Ltd. All rights reserved.

76 FR 47590 - Advisory Committee on Breast Cancer in Young Women (ACBCYW)

Federal Register 2010, 2011, 2012, 2013, 2014

2011-08-05

... Committee on Breast Cancer in Young Women (ACBCYW) In accordance with section 10(a)(2) of the Federal... designed to prevent breast cancer (particularly among those at heightened risk) and promote the early... communications tools and resources related to breast cancer in young women including appropriate venues to...

78 FR 75923 - Advisory Committee on Breast Cancer in Young Women (ACBCYW)

Federal Register 2010, 2011, 2012, 2013, 2014

2013-12-13

... Committee on Breast Cancer in Young Women (ACBCYW) In accordance with section 10(a)(2) of the Federal... evaluation of evidence-based activities designed to prevent breast cancer (particularly among those at... include discussions on the current and emerging topics related to breast cancer in young women. These may...

78 FR 57391 - Advisory Committee on Breast Cancer in Young Women (ACBCYW)

Federal Register 2010, 2011, 2012, 2013, 2014

2013-09-18

... Committee on Breast Cancer in Young Women (ACBCYW) In accordance with section 10(a)(2) of the Federal... prevent breast cancer (particularly among those at heightened risk) and promote the early detection and... emerging topics related to breast cancer in young women. These may include risk communication and health...

Personality Traits and Health-Related Quality of Life Among Adolescent and Young Adult Cancer Patients: The Role of Psychological Distress.

PubMed

Husson, Olga; Zebrack, Bradley; Block, Rebecca; Embry, Leanne; Aguilar, Christine; Hayes-Lattin, Brandon; Cole, Steve

2017-06-01

Personality may affect the way adolescents and young adults (AYAs) with cancer report health-related quality of life (HRQoL). Patients aged 15-39 years (n = 165) completed a survey at 12-16 months postdiagnosis. The survey included questions on HRQoL (SF-36), distress Brief Symptom Inventory-18, and personality (NEO-Five-Factor Inventory). Personality traits were not associated with physical HRQoL. The personality trait neuroticism was negatively associated with mental HRQoL (β = -0.37; p < 0.001) and positively with psychological distress (β = 0.47; p < 0.001). Hierarchical regression and mediation analyses indicated that psychological distress fully mediated the association between neuroticism and mental HRQoL. Findings emphasize the importance of psychosocial intervention for distress in AYAs with cancer.

Fertility concerns among breast cancer patients in Mexico.

PubMed

Villarreal-Garza, Cynthia; Martinez-Cannon, Bertha Alejandra; Platas, Alejandra; Mohar, Alejandro; Partridge, Ann H; Gil-Moran, Arnoldo; Fonseca, Alan; Vega, Yoatzin; Bargallo-Rocha, Enrique; Cardona-Huerta, Servando; Lopez-Aguirre, Yadira Estefany; Barragan-Carrillo, Regina; Castro-Sanchez, Andrea

2017-06-01

Young women represent a high proportion of the total number of breast cancer (BC) patients in Mexico; however, no previous studies addressing their attitudes regarding the risk of chemotherapy-induced infertility and its contributing factors are available. The aim of this study was to evaluate the concerns of young women with BC towards the risk of infertility in two referral centers in Mexico with access to public health services. A cross-sectional study including women with newly or previously detected BC aged 40 years or younger at diagnosis was conducted. Variables regarding concerns about fertility were collected from an adapted version of the Fertility Issues Survey. 134 consecutive eligible women responded to the in-person paper survey. 55% were partnered, 35.1% had no children, and 48% reported willingness to have children prior to BC diagnosis. Only 3% of patients considered to be able to afford extra expenses. At diagnosis, 44% of women expressed some level of concern about infertility risk. The only factor significantly associated with fertility concern was the desire of having children prior to diagnosis (OR 11.83, p = 0.006). Only 30.6% patients recalled having received information regarding infertility risk from their physicians. A minority of young women with breast cancer in Mexico is informed about the risk of BC treatment-induced infertility, despite substantial interest. Informing all patients about infertility risk and available options for fertility preservation should be an essential aspect of the supportive care of young women with BC, even in low-middle income countries such as Mexico. Copyright © 2017 Elsevier Ltd. All rights reserved.

Colorectal Cancer in Young African Americans: Is it time to revisit guidelines and prevention?

PubMed Central

Ashktorab, Hassan; Vilmenay, Kimberly; Brim, Hassan; Laiyemo, Adeyinka O; Kibreab, Angesom; Nouraie, Mehdi

2016-01-01

Previous studies have suggested an increase in the incidence of colorectal cancer (CRC) in young adults (younger than 50 years). Among older people, African Americans have disproportionally higher CRC incidence and mortality. It is unclear if this CRC disparity also applies to CRC diagnosed among young people Methods Using the Surveillance, Epidemiology, and End Results (SEER) cancer registries, a population-based cancer registry covering 25.6% of the United States’ African American population, we identified patients diagnosed with CRC between the years of 2000-2012. The age-adjusted rates for non-Hispanic whites (NHW), African Americans and Asian Pacific Islanders (API) were calculated for the age categories 20-24, 25-29, 30-34, 35-39, and 40-44. Results CRC age-adjusted incidence is increasing among all three racial groups and was higher for African Americans compared to NHW and API across all years 2000-2012 (P<0.001). Stage IV CRC was higher in African Americans compared with NHW while there was higher stage III CRC in API compared with NHWs. Conclusion CRC incidence is increasing among the young in all racial groups under study. This increase in frequency of CRC is true among young African American adults who display highly advanced tumors in comparison to other races. While the present attention to screening seems to have decreased CRC prevalence in individuals older than 50, special attention needs to be addressed to young African American adults as well, to counter the observed trend, as they have the highest incidence of CRC among young population groups by race/ethnicity. PMID:27278956

Use of appropriate initial treatment among adolescents and young adults with cancer.

PubMed

Potosky, Arnold L; Harlan, Linda C; Albritton, Karen; Cress, Rosemary D; Friedman, Debra L; Hamilton, Ann S; Kato, Ikuko; Keegan, Theresa H M; Keel, Gretchen; Schwartz, Stephen M; Seibel, Nita L; Shnorhavorian, Margarett; West, Michele M; Wu, Xiao-Cheng

2014-11-01

There has been little improvement in the survival of adolescent and young adult (AYA) cancer patients aged 15 to 39 years relative to other age groups, raising the question of whether such patients receive appropriate initial treatment. We examined receipt of initial cancer treatment for a population-based sample of 504 AYAs diagnosed in 2007-2008 with acute lymphoblastic leukemia (ALL), Hodgkin's or non-Hodgkin's lymphoma, germ cell cancer, or sarcoma. Registry data, patient surveys, and detailed medical record reviews were used to evaluate the association of patient demographic, socioeconomic, and health care setting characteristics with receipt of appropriate initial treatment, which was defined by clinical specialists in AYA oncology based on adult guidelines and published literature available before 2009 and analyzed with multivariable logistic regression. All statistical tests were two-sided. Approximately 75% of AYA cancer patients in our sample received appropriate treatment, 68% after excluding stage I male germ cell patients who all received appropriate treatment. After this exclusion, appropriate treatment ranged from 79% of sarcoma patients to 56% of ALL patients. Cancer type (P < .01) and clinical trial participation (P = .04) were statistically significantly associated with appropriate treatment in multivariable analyses. Patients enrolled in clinical trials were more likely to receive appropriate therapy relative to those not enrolled (78% vs 67%, adjusted odds ratio = 2.6, 95% confidence interval = 1.1 to 6.4). Except for those with early stage male germ cell tumors, approximately 30% (or 3 in 10) AYA cancer patients did not receive appropriate therapy. Further investigation is required to understand the reasons for this potential shortfall in care delivery. © The Author 2014. Published by Oxford University Press. All rights reserved. For Permissions, please e-mail: journals.permissions@oup.com.

Human Papilloma Virus Identification in Breast Cancer Patients with Previous Cervical Neoplasia.

PubMed

Lawson, James S; Glenn, Wendy K; Salyakina, Daria; Clay, Rosemary; Delprado, Warick; Cheerala, Bharathi; Tran, Dinh D; Ngan, Christopher C; Miyauchi, Shingo; Karim, Martha; Antonsson, Annika; Whitaker, Noel J

2015-01-01

Women with human papilloma virus (HPV)-associated cervical neoplasia have a higher risk of developing breast cancer than the general female population. The purpose of this study was to (i) identify high-risk HPVs in cervical neoplasia and subsequent HPV positive breast cancers which developed in the same patients and (ii) determine if these HPVs were biologically active. A range of polymerase chain reaction and immunohistochemical techniques were used to conduct a retrospective cohort study of cervical precancers and subsequent breast cancers in the same patients. The same high-risk HPV types were identified in both the cervical and breast specimens in 13 (46%) of 28 patients. HPV type 18 was the most prevalent. HPVs appeared to be biologically active as demonstrated by the expression of HPV E7 proteins and the presence of HPV-associated koilocytes. The average age of these patients diagnosed with breast cancer following prior cervical precancer was 51 years, as compared to 60 years for all women with breast cancer (p for difference = 0.001). These findings indicate that high-risk HPVs can be associated with cervical neoplasia and subsequent young age breast cancer. However, these associations are unusual and are a very small proportion of breast cancers. These outcomes confirm and extend the observations of two similar previous studies and offer one explanation for the increased prevalence of serious invasive breast cancer among young women.

Impact of cancer and chemotherapy on autonomic nervous system function and cardiovascular reactivity in young adults with cancer: a case-controlled feasibility study.

PubMed

Adams, Scott C; Schondorf, Ronald; Benoit, Julie; Kilgour, Robert D

2015-05-18

Preliminary evidence suggests cancer- and chemotherapy-related autonomic nervous system (ANS) dysfunction may contribute to the increased cardiovascular (CV) morbidity- and mortality-risks in cancer survivors. However, the reliability of these findings may have been jeopardized by inconsistent participant screening and assessment methods. Therefore, good laboratory practices must be established before the presence and nature of cancer-related autonomic dysfunction can be characterized. The purpose of this study was to assess the feasibility of conducting concurrent ANS and cardiovascular evaluations in young adult cancer patients, according to the following criteria: i) identifying methodological pitfalls and proposing good laboratory practice criteria for ANS testing in cancer, and ii) providing initial physiologic evidence of autonomic perturbations in cancer patients using the composite autonomic scoring scale (CASS). Thirteen patients (mixed diagnoses) were assessed immediately before and after 4 cycles of chemotherapy. Their results were compared to 12 sex- and age-matched controls. ANS function was assessed using standardized tests of resting CV (tilt-table, respiratory sinus arrhythmia and Valsalva maneuver) and sudomotor (quantitative sudomotor axon reflex test) reactivity. Cardiovascular reactivity during exercise was assessed using a modified Astrand-Ryhming cycle ergometer protocol. Our feasibility criteria addressed: i) recruitment potential, ii) retention rates, iii) pre-chemotherapy assessment potential, iv) test performance/tolerability, and v) identification and minimizing the influence of potentially confounding medication. T-tests and repeated measures ANOVAs were used to assess between- and within-group differences at baseline and follow-up. The overall success rate in achieving our feasibility criteria was 98.4 %. According to the CASS, there was evidence of ANS impairment at baseline in 30.8 % of patients, which persisted in 18.2 % of patients

[Psychosocial and developmental outcomes of TYAs with cancer: Are there any specific characteristics for the young adults?

PubMed

Leprince, Tanguy; Sauveplane, Dominique; Ricadat, Elise; Seigneur, Étienne; Marioni, Gabrielle

2016-12-01

During the last few years, specific support devices and even dedicated units for teenagers and young adults (TYAs - patients grouped in the 15-25 years age group) appeared in oncology. If the existing literature review allows identifying many written work related to the experience of cancer during adolescence, resources about "young adults" are not only far less abundant, but rarely give the definition of what is a "young adult". Based on this observation, it appears necessary, at this stage of our practice, to question the definition and psychosocial outcomes of those psychiatrists and psychologists also call "young adults". Are they so different compared to teenagers? Do they have their own specificities? Based on the analysis of the general literature, we will seek to define the highlights of this moment of life and to identify their specific psychosocial and developmental outcomes. Thus, we will be able to study more accurately the experience of young adults facing cancer and the associated psychological side effects. Based on this analysis, we will present the issues which seemed to be specific in the psychological support of young adults and their relatives. Copyright © 2016 Société Française du Cancer. Published by Elsevier Masson SAS. All rights reserved.

The prevalence of thyroid cancer in patients with hyperthyroidism

PubMed Central

Kunjumohamed, Fathimabeebi P.; Al-Busaidi, Noor B.; Al-Musalhi, Hilal N.; Al-Shereiqi, Sulaiman Z.; Al-Salmi, Issa S.

2015-01-01

Objectives: To determine the prevalence of thyroid cancer in patients with hyperthyroidism. Methods: This is a retrospective observational study using the data of 71 Omani patients with a diagnosis of hyperthyroidism due to Grave’s disease, toxic multinodular goiter, and solitary toxic adenoma. These patients underwent thyroidectomy at the Royal Hospital (RH), Muscat, Oman, and were followed up at the National Diabetes and Endocrine Center (NDEC) between 2007 and 2013. The details were collected from the medical records of both the RH and the NDEC. Patients who underwent thyroidectomy for other reasons like non-toxic goiter and hypothyroidism with cancer were excluded from the study. Results: Thyroid cancer was identified in 32.8% (n=23) of patients with hyperthyroidism. Half of these patients 52.1% (n=12) had papillary micro-cancer (intra-thyroidal), and 3 patients with Grave’s disease (13%) had lymph nodes metastasis (loco-regional infiltration. The cancer preponderance was higher in young (n=21, 91.3%) and female patients (n=18, 73.9%). Most patients with thyroid cancer had abnormal ultrasound neck findings and thyroid scintigraphy (99 mTc uptake). Conclusion: Many patients with hyperthyroidism in Muscat, Oman, especially those with Grave’s disease, show malignancy, and hence a proper initial evaluation of these patients is required as part of long-term management. PMID:26108596

Characteristics of cancer patients who died by suicide in the Tokyo metropolitan area.

PubMed

Fujimori, Maiko; Hikiji, Wakako; Tanifuji, Takanobu; Suzuki, Hideto; Takeshima, Tadashi; Matsumoto, Toshihiko; Yamauchi, Takashi; Kawano, Kenji; Fukunaga, Tatsushige

2017-05-01

The purpose of this study was to investigate the sociodemographic characteristics of cancer patients who died by suicide in comparison with cancer-free cases. Suicide data from the Tokyo Medical Examiner's Office from 2009 to 2013 were extracted retrospectively. A total of 503 (5.1%) out of 9841 people who committed suicide had cancer; age ranged from 26 to 97 years. The cancer patients were significantly older than the cancer-free cases. There were significantly more cancer patients with cohabiters than cancer-free cases with cohabiters. Only half of young to middle-aged subjects had a job in both groups. There were significantly more cancer patients who lived on pensions and welfare assistance, and less cancer patients who drink or smoke than those without cancer. Given the high incidence of suicide in elderly cancer patients, healthcare professionals should pay attention for risk even in cancer patients who have cohabiters, benefit from a pension, and do not drink or smoke. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Treatment of multiple synchronous misdiagnosed renal cell cancers in a young patient affected by a "de novo" Von Hippel-Lindau syndrome.

PubMed

Allasia, Marco; Battaglia, Antonino; Pasini, Barbara; Gazzera, Carlo; Calandri, Marco; Bosio, Andrea; Gontero, Paolo; Destefanis, Paolo

2017-02-28

Von Hippel-Lindau (VHL) disease is an autosomal dominant inherited syndrome occurring in one out of 36,000 live births. Diagnosis could be a challenge in patients with no familial VHL history. Renal cancer (RCC) represents one of the most important manifestations. RCC is usually recurrent and multifocal. Actually treating RCC in VHL patients represent a clinical dilemma: the oncological outcomes must be balanced against renal function preservation. A young man with a negative familial history was referred to our department with seven misdiagnosed renal masses. VHL disease was determined through genetic test. The multiple RCCs were treated by surgery and percutaneous thermal ablation by radiofrequency ablation (RFA) with complete control of RCC and no impairment of renal function. This case history confirms that VHL disease has to be suspected in young patients with evidence of synchronous multiple renal masses and in presence of specific clinical criteria.RFA appears to be safe in terms of oncological radicalism and in renal function preservation.In hereditary RCC, we should purpose, whenever it is possible, minimally invasive treatment in terms of low hospital stay and a minimal loss of renal tissue.

A participatory study of teenagers and young adults views on access and participation in cancer research.

PubMed

Taylor, Rachel M; Solanki, Anita; Aslam, Natasha; Whelan, Jeremy S; Fern, Lorna A

2016-02-01

The purpose of this study was to elicit young people's views on access and participation in cancer research. Eight young people aged 18-25 years with a previous cancer diagnosis aged 15-24 participated in a one day workshop utilising participatory methodology. The workshop consisted of four exercises: role play/scene setting; focus group examining thoughts and opinions of research access and participation; individual reflection on access to different types of research; and creative interpretation of the workshop. Further consultation with 222 young people with cancer was conducted using an electronic survey. Three themes emerged: • Patient choice: Young people thought it was their right to know all options about available research. Without knowledge of all available studies they would be unable to make an informed choice about participation. • Role of healthcare professionals as facilitators/barriers: Young people suggested non-clinical healthcare professionals such as social workers and youth support coordinators may be more suited to approaching young people about participation in psychosocial and health services research. • Value of the research: The what, when and how information was delivered was key in relaying the value of the study and assisting young people in their decision to participate. Further consultation showed approximately 70% wanted to find out about all available research. However, one third trusted healthcare professionals to decide which research studies to inform them of. Effective ways to support healthcare professionals approaching vulnerable populations about research are needed to ensure young people are empowered to make informed choices about research participation. Copyright © 2015 Elsevier Ltd. All rights reserved.

Impact of Cancer on Romantic Relationships Among Young Adults: A Systematic Review.

PubMed

Rabin, Carolyn

2018-04-24

The aim of this review was to determine the impact of a cancer diagnosis and history on young adults' ability to initiate and maintain romantic relationships. MedLine and PsycInfo databases were used to identify articles that address dating, romantic relationships, or marriage among 18- to 45-year-old cancer survivors. Twenty-one relevant articles were identified. Findings indicate that young adult cancer survivors struggle with when/how to disclose their cancer history to potential partners, are delayed in initiating their first romantic relationships, have fewer romantic relationships than peers, and are less likely than peers to marry. Young survivors report that their cancer experience impacts their long-term relationships in both positive and negative ways. In summary, young survivors face significant barriers to establishing and maintaining romantic relationships. Those who have difficulty establishing romantic relationships may benefit from receiving additional support from other sources, including family members, friends, and (in some cases) mental health professionals.

Empowerment in adolescents and young adults with cancer: Relationship with health-related quality of life.

PubMed

Kaal, Suzanne E J; Husson, Olga; van Duivenboden, Saskia; Jansen, Rosemarie; Manten-Horst, Eveliene; Servaes, Petra; Prins, Judith B; van den Berg, Sanne W; van der Graaf, Winette T A

2017-10-15

The difficulties adolescents and young adults (AYAs) encounter during a cancer experience may result in a reduction in or absence of empowerment. The aims of the current study were to assess levels of empowerment and associated (demographic, clinical, or psychological) factors and examine the association between empowerment and health-related quality of life (HRQOL) among AYA patients with cancer. Patients aged 18 to 35 years at time of cancer diagnosis and who were seen by 1 of the members of the specialized multidisciplinary AYA team of the Radboud University Medical Center were invited to complete questionnaires regarding empowerment; HRQOL; and sociodemographic, clinical, and psychological characteristics (autonomy, coping, unmet social support needs, and psychological distress). A total of 83 AYA patients completed the questionnaires. The mean age of the participants at the time of diagnosis was 27.5 years. The vast majority had been treated with chemotherapy (86%), had a more advanced stage of disease, and had completed treatment at the time of participation (74%). The mean empowerment level was 154.1 (standard deviation, 17.8) with a range of 114 to 200. Multivariate analysis demonstrated that the autonomy subscales of self-awareness (β = .35), capacity for managing new situations (β = .19), and social support (β = .35) were found to be positively associated with empowerment. Coping difficulties (β = -.19) were found to be negatively associated with empowerment. Empowerment was independently associated with physical (β = .31), psychological (β = .50), social (β = .39), religious (β = .33), and total HRQOL (β = .52; all P<.01). Low levels of empowerment were associated with low levels of autonomy and social support, female sex, and coping difficulties among AYA patients with cancer. Recognizing these patients as candidates for empowerment interventions ultimately could help to improve HRQOL in late adolescence and young adulthood. Cancer 2017

Quality of life in adolescent and young adult cancer patients: a systematic review of the literature

PubMed Central

Quinn, Gwendolyn P; Gonçalves, Vânia; Sehovic, Ivana; Bowman, Meghan L; Reed, Damon R

2015-01-01

Introduction Adolescent and young adult (AYA) cancer survivors experience many unique challenges and quality of life (QoL) effects that persist beyond cancer diagnosis and treatment. Due to continuous improvements in technology and cancer treatments resulting in improved survival rates, the identification of late effects, survivorship issues, and QoL is moving to the forefront of cancer research. The goal of this systematic review was to identify key psychosocial factors impacting QoL in AYA oncology populations. Methods A systematic review of the literature was conducted using combinations of these phrases or keywords: “adolescent and young adult or AYA” AND “health outcomes OR quality of life OR psychology” AND “neoplasm OR cancer OR oncology”. A total of 35 articles were included in this review. Studies were classified into two categories: AYA perceptions and stakeholder perceptions. Results AYA cancer survivors were more likely to have “worse” or impaired QoL compared with the general population, regardless of other demographic factors. AYAs described both positive and negatives experiences with their medical care, the educational information received, and the supportive care services. Although health care professionals were likely to underestimate or misjudge the health preferences and support needs of AYAs, these perceptions varied across disciplines and levels of experience. Conclusion The literature is lacking in sufficient evidence-based interventions to improve QoL in AYA cancer populations. Further, the tools to adequately measure QoL in this population are also unsatisfactory. The literature, however, consistently shows agreement regarding the unique needs of this population, indicating a trend toward health care standardization within age ranges or life stages. We suggest the need for AYA-specific programs in health care institutions that comprise a multidisciplinary team that addresses all the unique medical and QoL needs of AYAs. PMID

Who Treats Adolescents and Young Adults with Cancer? A Report from the AYA HOPE Study.

PubMed

Parsons, Helen M; Harlan, Linda C; Schmidt, Susanne; Keegan, Theresa H M; Lynch, Charles F; Kent, Erin E; Wu, Xiao-Cheng; Schwartz, Stephen M; Chu, Roland L; Keel, Gretchen; Smith, Ashley Wilder

2015-09-01

Physicians play a critical role in delivering effective treatment and enabling successful transition to survivorship among adolescent and young adult (AYA) cancer patients. However, with no AYA cancer medical specialty, information on where and by whom AYAs with cancer are treated is limited. Using the National Cancer Institute's population-based AYA HOPE Study, 464 AYAs aged 15-39 at diagnosis treated by 903 physicians were identified. Differences in physician and hospital characteristics were examined by age at diagnosis and cancer type (germ cell cancer, non-Hodgkin lymphoma, Hodgkin lymphoma, acute lymphocytic leukemia [ALL], and sarcoma) using chi-square tests. Treating physicians were predominately 51-64 years old, male, United States-trained in non-pediatric specialties, and in group practices within large metropolitan areas. Older patients were less often treated by pediatric physicians (p < 0.01) and more likely to be treated by United States-trained physicians without research/teaching responsibilities and in hospitals without residency programs (p < 0.05). The majority of the few pediatricians (n = 44) treated ALL patients. Physicians with research/teaching responsibilities and those based in medical schools were more likely to treat patients with ALL and sarcoma compared with other cancer types (p < 0.01). Of HL patients, 73% were treated at a cancer center compared with 56% of patients with germ cell cancer (p < 0.01), while ALL (85%) and sarcoma (87%) patients were more likely to be treated in hospitals with residency programs (p < 0.01). Most AYAs with cancer were treated by non-pediatric physicians in community settings, although physician characteristics varied significantly by patient cancer type and age at diagnosis.

Mismatch Repair Deficiency Testing in Patients With Colorectal Cancer and Nonadherence to Testing Guidelines in Young Adults.

PubMed

Shaikh, Talha; Handorf, Elizabeth A; Meyer, Joshua E; Hall, Michael J; Esnaola, Nestor F

2018-02-08

Mismatch repair (MMR) deficiency of DNA has been observed in up to 15% of sporadic colorectal cancers (CRCs) and is a characteristic feature of Lynch syndrome, which has a higher incidence in young adults (age, <50 years) with CRC. Mismatch repair deficiency can be due to germline mutations or epigenetic inactivation, affects prognosis and response to systemic therapy, and results in unrepaired repetitive DNA sequences, which increases the risk of multiple malignant tumors. To evaluate the utilization of MMR deficiency testing in adults with CRC and analyze nonadherence to long-standing testing guidelines in younger adults using a contemporary national data set to help identify potential risk factors for nonadherence to newly implemented universal testing guidelines. Adult (age, <30 to ≥70 years) and, of these, younger adult (<30 to 49 years) patients with invasive colorectal adenocarcinoma diagnosed between 2010 and 2012 and known MMR deficiency testing status were identified using the National Cancer Database. The study was conducted from March 16, 2016, to March 1, 2017. Patient sociodemographic, facility, tumor, and treatment characteristics. The primary outcome of interest was receipt of MMR deficiency testing. Multivariable logistic regression was used to identify independent predictors of testing in adult and/or young adult patients. A total of 152 993 adults with CRC were included in the study (78 579 [51.4%] men; mean [SD] age, 66.9 [13.9] years). Of these patients, only 43 143 (28.2%) underwent MMR deficiency testing; the proportion of patients tested increased between 2010 and 2012 (22.3% vs 33.1%; P<.001). Among 17 218 younger adult patients with CRC, only 7422 (43.1%) underwent MMR deficiency testing; the proportion tested increased between 2010 and 2012 (36.1% vs 48.0%; P < .001). Irrespective of age, higher educational level (OR, 1.38; 95% CI, 1.15-1.66), later diagnosis year (OR, 1.81; 95% CI, 1.65-1.98), early stage disease (OR, 1

The adolescent and young adult with cancer: state of the art -- psychosocial aspects.

PubMed

Epelman, Claudia L

2013-08-01

Adolescents and young adults with cancer are a distinct subgroup of patients within oncology. From the onset of symptoms until the completion of therapy and beyond, they face physical, psychological, and social challenges that are significantly different from those of adults and children. Survival rates and quality of life outcomes for this population have not improved to the same extent that have for younger and older patients. Improvements in quality of care, overall survival and quality of life for these patients require access to specialized care and participation in clinical trials; assistance with management of disease and treatment effects (especially fertility and body image issues); assessment of psychosocial needs; facilitated transition to off-treatment care; and referral to age-appropriated information and support services. Staff team caring for young patients must be dedicated to working with this age group and should have specialist knowledge and training to support their specific needs.

Spirituality in Adolescents and Young Adults With Cancer: A Review of Literature.

PubMed

McNeil, Sharon B

2016-01-01

Spirituality and religion have been found to have a positive impact on adults with cancer, but these concepts have not been well examined in adolescents and young adults (AYA) with cancer. AYA often question and struggle with their religious and spiritual beliefs, so it is not clear if spirituality and religion have the same positive impact on this age group. The purpose of this review of literature was to examine the research that has been conducted in spirituality in AYA with cancer. The review covered the years from 1980 to present. The terms cancer, adolescents, and young adults as well as the phrases spirit* and relig* were used to capture the different variations of words. Nine articles were found that explored spirituality and religiosity in AYA with cancer. This review highlighted the need for clarifying the terms used in describing the concept. This lack of continuity in terms makes it difficult to compare the studies. The methods used to measure spirituality are varied. Pediatric oncology nurses need to be sensitive to the spiritual needs of their patients. This can be accomplished by keeping an open line of communication and ensuring uninterrupted time to pray or read scriptures. Because of the variety of ways to express spirituality, the important first step is to ask what spirituality means to them. © 2015 by Association of Pediatric Hematology/Oncology Nurses.

Predictive factors of thyroid cancer in patients with Graves' disease.

PubMed

Ren, Meng; Wu, Mu Chao; Shang, Chang Zhen; Wang, Xiao Yi; Zhang, Jing Lu; Cheng, Hua; Xu, Ming Tong; Yan, Li

2014-01-01

The best preoperative examination in Graves' disease with thyroid cancer still remains uncertain. The objectives of the present study were to investigate the prevalence of thyroid cancer in Graves' disease patients, and to identify the predictive factors and ultrasonographic features of thyroid cancer that may aid the preoperative diagnosis in Graves' disease. This retrospective study included 423 patients with Graves' disease who underwent surgical treatment from 2002 to 2012 at our institution. The clinical features and ultrasonographic findings of thyroid nodules were recorded. The diagnosis of thyroid cancer was determined according to the pathological results. Thyroid cancer was discovered in 58 of the 423 (13.7 %) surgically treated Graves' disease patients; 46 of those 58 patients had thyroid nodules, and the other 12 patients were diagnosed with incidentally discovered thyroid carcinomas without thyroid nodules. Among the 58 patients with thyroid cancer, papillary microcarcinomas were discovered in 50 patients, and multifocality and lymph node involvement were detected in the other 8 patients. Multivariate regression analysis showed younger age was the only significant factor predictive of metastatic thyroid cancer. Ultrasonographic findings of calcification and intranodular blood flow in thyroid nodules indicate that they are more likely to harbor thyroid cancers. Because the influencing factor of metastatic thyroid cancers in Graves' disease is young age, every suspicious nodule in Graves' disease patients should be evaluated and treated carefully, especially in younger patients because of the potential for metastasis.

Sociodemographic Disparities in Differentiated Thyroid Cancer Survival Among Adolescents and Young Adults in California

PubMed Central

Grogan, Raymon H.; Parsons, Helen M.; Tao, Li; White, Michael G.; Onel, Kenan; Horn-Ross, Pamela L.

2015-01-01

Background: Few studies have focused on prognostic factors among adolescents and young adults (AYAs) 15 to 39 years of age when diagnosed with differentiated thyroid cancer (DTC). Our study expands upon prior work by including an evaluation of survival among AYA men and by neighborhood socioeconomic status, health insurance, and clinical factors to identify subgroups of young DTC patients at higher risk of mortality. Methods: Data for 16,827 AYA DTC patients diagnosed between 1988 and 2010 were obtained from the California Cancer Registry. Survival, through 2010, by sociodemographic and clinical factors was analyzed using Cox proportional hazards regression. Results: Of the 2.1% of AYAs who died, 16.7% died from thyroid cancer and 21.4% died from a subsequent cancer. In multivariate analyses, older AYAs 35 to 39 year of age (versus 15- to 29-year-olds), men (hazard ratio [HR] 2.77, 95% confidence interval [CI] 1.62–4.72), and AYAs of African American or Hispanic race/ethnicity (versus non-Hispanic whites) had worse thyroid cancer specific survival. In addition, residing in low socioeconomic status neighborhoods (HR 3.11 [CI 1.28–7.56]) and nonmetropolitan areas (HR 5.53 [CI 2.07–14.78]) was associated with worse thyroid cancer–specific survival among AYA men, but not AYA women. Conclusions: Despite the generally good prognosis among AYAs with DTC, we identified subgroups of AYA patients at risk for poor outcomes. Further study of the factors underlying these associations, including possible barriers to receiving high-quality treatment and follow-up care, as well as lifestyle factors, are critical to reducing these disparities. PMID:25778795

Male Reproductive Health After Childhood, Adolescent, and Young Adult Cancers: A Report From the Children's Oncology Group

PubMed Central

Kenney, Lisa B.; Cohen, Laurie E.; Shnorhavorian, Margarett; Metzger, Monika L.; Lockart, Barbara; Hijiya, Nobuko; Duffey-Lind, Eileen; Constine, Louis; Green, Daniel; Meacham, Lillian

2012-01-01

The majority of children, adolescents, and young adults diagnosed with cancer will become long-term survivors. Although cancer therapy is associated with many adverse effects, one of the primary concerns of young male cancer survivors is reproductive health. Future fertility is often the focus of concern; however, it must be recognized that all aspects of male health, including pubertal development, testosterone production, and sexual function, can be impaired by cancer therapy. Although pretreatment strategies to preserve reproductive health have been beneficial to some male patients, many survivors remain at risk for long-term reproductive complications. Understanding risk factors and monitoring the reproductive health of young male survivors are important aspects of follow-up care. The Children's Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancer (COG-LTFU Guidelines) were created by the COG to provide recommendations for follow-up care of survivors at risk for long-term complications. The male health task force of the COG-LTFU Guidelines, composed of pediatric oncologists, endocrinologists, nurse practitioners, a urologist, and a radiation oncologist, is responsible for updating the COG-LTFU Guidelines every 2 years based on literature review and expert consensus. This review summarizes current task force recommendations for the assessment and management of male reproductive complications after treatment for childhood, adolescent, and young adult cancers. Issues related to male health that are being investigated, but currently not included in the COG-LTFU Guidelines, are also discussed. Ongoing investigation will inform future COG-LTFU Guideline recommendations for follow-up care to improve health and quality of life for male survivors. PMID:22649147

When Losing Means Winning: The Impact of Conflict in a Digital Game on Young Adults' Intentions to Get Protected from Cancer.

PubMed

Khalil, Georges E

2012-08-01

Despite the improved survival rate for patients with cancer in the United States, there is a need for successful intervention programs that can raise awareness about cancer risks among healthy young adults. This research experimentally examines how conflict in a digital game called "Re-Mission™" (HopeLab, Redwood City, CA) may influence young adults' perception of cancer risk, their motivation to get protected from cancer, and their intention to seek cancer-related information from their doctors. "Re-Mission" is a game in which players control a nanorobot that goes inside patients' virtual bodies to fight cancer cells. Two days after completing a baseline survey, participants (n=48) played "Re-Mission" at either low or high conflict (i.e., low or high level of obstacles and challenges in the game). Then, participants completed a post-experience survey. Participants in the high conflict condition experienced an increase in perceived susceptibility to and severity of cancer. They also increased their intentions to seek information by talking with a physician. Conflict also blocked any decrease in protective motivation. This study suggests that by virtually experiencing the consequences of cancer cell behavior, young adult players of "Re-Mission" increased in perception of cancer risks, protective motivation, and intentions to seek cancer-related information. In practice, health interventions should not only disseminate visual information about cancer, but also give the public the opportunity to virtually experience the consequences of cancer in order to understand the risks and become motivated to get protected. Implications for future research are also discussed.

Perceptions, Attributions, and Emotions Toward Endocrine Therapy in Young Women with Breast Cancer.

PubMed

Walker, Hayley E; Rosenberg, Shoshana M; Stanton, Annette L; Petrie, Keith J; Partridge, Ann H

2016-03-01

The aims of this study were to describe symptoms attributed to endocrine therapy (ET) and perceptions of ET in a sample of young women with breast cancer and to explore whether these factors are associated with adherence to ET. An online questionnaire was completed by 106 young women taking ET for hormone receptor-positive breast cancer. In addition to demographic and medical characteristics, the survey assessed symptom attribution, emotions, and perceptions related to ET. A supplemental survey measuring adherence to ET was completed by 82/106 women. Means, medians, and frequency distributions were calculated for continuous and categorical covariates, respectively. An exploratory analysis evaluated whether adherence was associated with patient characteristics and views. The mean age of respondents was 39 years (range 22-45 years). Two-thirds of women had stage 1 or 2 breast cancer. Women attributed an average of nine symptoms to ET; hot flashes, night sweats, and decreased libido were the most frequently attributed symptoms. Positive emotions toward ET were more common than negative emotions were, although only 48% of respondents believed that ET was essential. Women of higher financial status and those who reported more positive emotions toward ET reported greater adherence with ET. A significant difference in symptom attribution was not detected between less and more adherent respondents. Young women's views regarding ET may play an important role in determining adherence behavior. Given that young women have a higher risk of recurrence, some of which may be attributable to ET non-adherence, further work is needed to confirm these findings and determine whether interventions designed to modify young women's perceptions of ET could promote adherence.

Developing a new instrument to assess the impact of cancer in young adult survivors of childhood cancer.

PubMed

Zebrack, Brad

2009-09-01

Thirty years of psychosocial oncology research have detailed issues having significant impact in both pediatric and adult populations; yet, few studies have captured the subtle and unique ways in which cancer impacts, disrupts and in some instances promotes the growth and development of adolescents and young adults with a cancer history. This paper reports the initiation of an effort to assess the impact of cancer in this young survivor population through the development of a new Impact of Cancer (IOC) instrument. 64 young adults aged 18-39 years and treated for a pediatric malignancy participated in face-to-face interviews and responded to questions prompting them to describe the impact of cancer on their physical, psychological, social and spiritual/existential well-being. Intent of analysis was to organize data into meaningful sub-categories from which to develop a set of candidate survey items that assess a range of problems, issues and changes that long-term survivors ascribe to their cancer experience. A total of 82 candidate survey items represented content across 11 topical domains including Body, Health and Body image, Treatment and Health Care, Having Children, Identity, Talking and Thinking About Cancer, Meaning of Cancer, Memory and Thinking, Finances, Family and Relationships, Socializing, and Life Goals. Assessing the instrument's psychometric properties in a large representative group of young cancer survivors is the next step for further development of such a measure. Once established, a valid and reliable Impact of Cancer instrument has the potential for identifying salient survivorship issues in a clinical setting.

Cancer-related information needs and cancer's impact on control over life influence health-related quality of life among adolescents and young adults with cancer.

PubMed

DeRouen, Mindy C; Smith, Ashley Wilder; Tao, Li; Bellizzi, Keith M; Lynch, Charles F; Parsons, Helen M; Kent, Erin E; Keegan, Theresa H M

2015-09-01

Adolescents and young adults (AYAs) diagnosed with cancer between 15 and 39 years of age often report need for greater amounts of cancer-related information and perceive that cancer has had a negative impact on control over their life. We examined whether unmet information need and perceived control over life are associated with health-related quality of life (HRQOL). We examined data from 484 AYA cancer survivors recruited from population-based cancer registries in 2007-2008. Participants completed surveys a median of 11 months after diagnosis. Multivariable linear regression analyses estimated associations of unmet cancer-related information needs and impact of cancer on control over life on HRQOL (SF-12). Two-thirds of AYAs reported an intermediate or high level of unmet information need, and half (47%) reported a negative impact of cancer on control. Greater unmet information need was associated with lower overall mental and physical HRQOL and lower levels of all HRQOL subscales except vitality. A negative impact on control over life was associated with lower overall mental HRQOL as well as lower HRQOL across all subscales except general health perceptions (all p <0.05). In multivariable analyses, perceived control and unmet information need were independently associated with HRQOL (p-values for interaction >0.1). Adolescent and young adult patients with cancer have high levels of unmet cancer-related information needs and perceived negative impact of cancer on control over life; both were independently associated with lower HRQOL. Addressing unmet information needs among AYA cancer survivors and finding ways to increase their sense of control may help improve HRQOL in this understudied population. Copyright © 2015 John Wiley & Sons, Ltd.

Optimizing a Retention Strategy with Young People for BRIGHTLIGHT, a Longitudinal Cohort Study Examining the Value of Specialist Cancer Care for Young People.

PubMed

Taylor, Rachel M; Aslam, Natasha; Lea, Sarah; Whelan, Jeremy S; Fern, Lorna A

2017-09-01

To maximize retention of participants in a longitudinal cohort study, we sought to understand young peoples' views about barriers and facilitators to continuing study participation. Ten young people with a previous cancer diagnosis aged 15-24 participated in a 1 day workshop. The workshop used participatory methodology consisting of three exercises as follows: role play/scene setting; force field analysis of research participation in small groups; and focus group discussion. A final prioritization exercise was administered individually after the workshop. Twenty-four barriers to maintaining participation were summarized in five themes as follows: life commitments; concerns specific to the study; emotional barriers; practical barriers; and other reasons. The top 3 specific barriers were as follows: not a priority/other things are more important; too time consuming; and forgetting/memory. The top 3 facilitators for participation were as follows: wishing to help other young people; giving back to the cancer community; and honoring an initial commitment to participation. The top 3 suggested solutions to encourage continued participation were as follows: reminder text message or email before each survey to check preferred method of delivery; breaking up the online survey into modules to make completion less overwhelming; and consolidation of study information in one location. Involving young people in designing a retention strategy for young people with cancer has informed the BRIGHTLIGHT retention strategy. Patient and public involvement is imperative for successful research but measuring impact is challenging. The success of implementing the changes to optimize retention was shown in the increase in retention in Wave 3 from 30% to final participation of 58%.

'Pizza, patients and points of view': Involving young people in the design of a post registration module entitled the adolescent with cancer.

PubMed

Fallon, Sue; Smith, Joanna; Morgan, Sue; Stoner, Mandy; Austin, Catriona

2008-03-01

Health policy and education directives emphasise the need to involve service users and carers in healthcare, from service design and delivery to the education of healthcare professionals. This paper describes a pilot project aimed at eliciting teenagers and young people with cancer views in relation to the content of a continuing professional development module entitled 'adolescents with cancer'. Seven young people participated in the project. The project design was based on the PARTICIPATION - spice it up [Shephard, C., Treseder, P., 2002. spice it up! Dynamix, Swansea] framework, which aims to ensure effective and appropriate involvement of service users and carers. 'Post-it ideas storm' 'diamond ranking' and 'dot voting' were used to elicit the young people's views. The teenagers and young people could clearly articulate the qualities they felt nurses should have when caring for adolescents with cancer. They also identified topics they felt were important to include in the module, with an understanding of, and using, humour being given the highest priority. This was not originally included in the module timetable but as a direct result of consulting with the young people changes were made to reflect their views.

Risk factors for head and neck cancer in young adults: a pooled analysis in the INHANCE consortium.

PubMed

Toporcov, Tatiana Natasha; Znaor, Ariana; Zhang, Zuo-Feng; Yu, Guo-Pei; Winn, Deborah M; Wei, Qingyi; Vilensky, Marta; Vaughan, Thomas; Thomson, Peter; Talamini, Renato; Szeszenia-Dabrowska, Neonila; Sturgis, Erich M; Smith, Elaine; Shangina, Oxana; Schwartz, Stephen M; Schantz, Stimson; Rudnai, Peter; Richiardi, Lorenzo; Ramroth, Heribert; Purdue, Mark P; Olshan, Andrew F; Eluf-Neto, José; Muscat, Joshua; Moyses, Raquel Ajub; Morgenstern, Hal; Menezes, Ana; McClean, Michael; Matsuo, Keitaro; Mates, Dana; Macfarlane, Tatiana V; Lissowska, Jolanta; Levi, Fabio; Lazarus, Philip; La Vecchia, Carlo; Lagiou, Pagona; Koifman, Sergio; Kjaerheim, Kristina; Kelsey, Karl; Holcatova, Ivana; Herrero, Rolando; Healy, Claire; Hayes, Richard B; Franceschi, Silvia; Fernandez, Leticia; Fabianova, Eleonora; Daudt, Alexander W; Curioni, Otávio Alberto; Maso, Luigino Dal; Curado, Maria Paula; Conway, David I; Chen, Chu; Castellsague, Xavier; Canova, Cristina; Cadoni, Gabriella; Brennan, Paul; Boccia, Stefania; Antunes, José Leopoldo Ferreira; Ahrens, Wolfgang; Agudo, Antonio; Boffetta, Paolo; Hashibe, Mia; Lee, Yuan-Chin Amy; Filho, Victor Wünsch

2015-02-01

Increasing incidence of head and neck cancer (HNC) in young adults has been reported. We aimed to compare the role of major risk factors and family history of cancer in HNC in young adults and older patients. We pooled data from 25 case-control studies and conducted separate analyses for adults ≤ 45 years old ('young adults', 2010 cases and 4042 controls) and >45 years old ('older adults', 17700 cases and 22 704 controls). Using logistic regression with studies treated as random effects, we estimated adjusted odds ratios (ORs) and 95% confidence intervals (CIs). The young group of cases had a higher proportion of oral tongue cancer (16.0% in women; 11.0% in men) and unspecified oral cavity / oropharynx cancer (16.2%; 11.1%) and a lower proportion of larynx cancer (12.1%; 16.6%) than older adult cases. The proportions of never smokers or never drinkers among female cases were higher than among male cases in both age groups. Positive associations with HNC and duration or pack-years of smoking and drinking were similar across age groups. However, the attributable fractions (AFs) for smoking and drinking were lower in young when compared with older adults (AFs for smoking in young women, older women, young men and older men, respectively, = 19.9% (95% CI=9.8%, 27.9%), 48.9% (46.6%, 50.8%), 46.2% (38.5%, 52.5%), 64.3% (62.2%, 66.4%); AFs for drinking=5.3% (-11.2%, 18.0%), 20.0% (14.5%, 25.0%), 21.5% (5.0%, 34.9%) and 50.4% (46.1%, 54.3%). A family history of early-onset cancer was associated with HNC risk in the young [OR=2.27 (95% CI=1.26, 4.10)], but not in the older adults [OR=1.10 (0.91, 1.31)]. The attributable fraction for family history of early-onset cancer was 23.2% (8.60% to 31.4%) in young compared with 2.20% (-2.41%, 5.80%) in older adults. Differences in HNC aetiology according to age group may exist. The lower AF of cigarette smoking and alcohol drinking in young adults may be due to the reduced length of exposure due to the lower age. Other

Risk factors for head and neck cancer in young adults: a pooled analysis in the INHANCE consortium

PubMed Central

Toporcov, Tatiana Natasha; Znaor, Ariana; Zhang, Zuo-Feng; Yu, Guo-Pei; Winn, Deborah M; Wei, Qingyi; Vilensky, Marta; Vaughan, Thomas; Thomson, Peter; Talamini, Renato; Szeszenia-Dabrowska, Neonila; Sturgis, Erich M; Smith, Elaine; Shangina, Oxana; Schwartz, Stephen M; Schantz, Stimson; Rudnai, Peter; Richiardi, Lorenzo; Ramroth, Heribert; Purdue, Mark P; Olshan, Andrew F; Eluf-Neto, José; Muscat, Joshua; Moyses, Raquel Ajub; Morgenstern, Hal; Menezes, Ana; McClean, Michael; Matsuo, Keitaro; Mates, Dana; Macfarlane, Tatiana V; Lissowska, Jolanta; Levi, Fabio; Lazarus, Philip; Vecchia, Carlo La; Lagiou, Pagona; Koifman, Sergio; Kjaerheim, Kristina; Kelsey, Karl; Holcatova, Ivana; Herrero, Rolando; Healy, Claire; Hayes, Richard B; Franceschi, Silvia; Fernandez, Leticia; Fabianova, Eleonora; Daudt, Alexander W; Curioni, Otávio Alberto; Maso, Luigino Dal; Curado, Maria Paula; Conway, David I; Chen, Chu; Castellsague, Xavier; Canova, Cristina; Cadoni, Gabriella; Brennan, Paul; Boccia, Stefania; Antunes, José Leopoldo Ferreira; Ahrens, Wolfgang; Agudo, Antonio; Boffetta, Paolo; Hashibe, Mia; Lee, Yuan-Chin Amy; Filho, Victor Wünsch

2015-01-01

Background: Increasing incidence of head and neck cancer (HNC) in young adults has been reported. We aimed to compare the role of major risk factors and family history of cancer in HNC in young adults and older patients. Methods: We pooled data from 25 case-control studies and conducted separate analyses for adults ≤45 years old (‘young adults’, 2010 cases and 4042 controls) and >45 years old (‘older adults’, 17 700 cases and 22 704 controls). Using logistic regression with studies treated as random effects, we estimated adjusted odds ratios (ORs) and 95% confidence intervals (CIs). Results: The young group of cases had a higher proportion of oral tongue cancer (16.0% in women; 11.0% in men) and unspecified oral cavity / oropharynx cancer (16.2%; 11.1%) and a lower proportion of larynx cancer (12.1%; 16.6%) than older adult cases. The proportions of never smokers or never drinkers among female cases were higher than among male cases in both age groups. Positive associations with HNC and duration or pack-years of smoking and drinking were similar across age groups. However, the attributable fractions (AFs) for smoking and drinking were lower in young when compared with older adults (AFs for smoking in young women, older women, young men and older men, respectively, = 19.9% (95% CI = 9.8%, 27.9%), 48.9% (46.6%, 50.8%), 46.2% (38.5%, 52.5%), 64.3% (62.2%, 66.4%); AFs for drinking = 5.3% (−11.2%, 18.0%), 20.0% (14.5%, 25.0%), 21.5% (5.0%, 34.9%) and 50.4% (46.1%, 54.3%). A family history of early-onset cancer was associated with HNC risk in the young [OR = 2.27 (95% CI = 1.26, 4.10)], but not in the older adults [OR = 1.10 (0.91, 1.31)]. The attributable fraction for family history of early-onset cancer was 23.2% (8.60% to 31.4%) in young compared with 2.20% (−2.41%, 5.80%) in older adults. Conclusions: Differences in HNC aetiology according to age group may exist. The lower AF of cigarette smoking and alcohol drinking in young

Risk of Breast Cancer among Young Women and Importance of Early Screening.

PubMed

Memon, Zahid Ali; Kanwal, Noureen; Sami, Munam; Larik, Parsa Azam; Farooq, Mohammad Zain

2015-01-01

Breast cancer is the most common type of cancer in women throughout the world. However, in comparison with Western women, it presents relatively early in women of Asian ethnicity. Early menarche, late menopause, use of OCP's, family history of benign or malignant breast disease, exposure to radiation and BMI in the under-weight range are well known risk factors for the development of breast cancer in premenopausal women. Early detection with the use of breast self-examination (BSE) and breast cancer screening programs can lead to a reduction in the mortality rates due to breast cancer. The aim of our study was to assess the risk factors for breast cancer among young women and to emphasize the importance of early screening among them. We conducted a cross-sectional study among women aged 18 to 25 using a self- administered questionnaire. Data was collected over a period of 6 months from June to December, 2014. A total of 300 young women selected randomly from Dow Medical College and various departments of Karachi University successfully completed the survey. Respondents were 18-25 years of age (mean age=21.5). Out of the 300 young females, 90 (30%) had at least one risk factor, 90 (30%) had two, 40 (13%) had three, 8 (2.7%) had four, 2 (0.7%) had five while one female was found to have six positive risk factors for breast cancer. Some 66 women (22%) experienced symptoms of breast cancer such as non-cyclical pain and lumps. While 222 women (74%) had never performed breast self-examination, 22 (7.3%) had had a breast examination done by a health professional while 32 (10.7%) had participated in breast screening programs. A total of 223 (74.3%) women considered breast cancer screening important for young women. The percentage of young women with risk factors for breast cancer was found to be alarmingly high. Therefore, screening for breast cancer should start at an early age especially in high risk groups. Awareness about breast self-examination should be emphasized

Psychological morbidities in adolescent and young adult blood cancer patients during curative-intent therapy and early survivorship.

PubMed

Muffly, Lori S; Hlubocky, Fay J; Khan, Niloufer; Wroblewski, Kristen; Breitenbach, Katherine; Gomez, Joseline; McNeer, Jennifer L; Stock, Wendy; Daugherty, Christopher K

2016-03-15

Adolescents and young adults (AYAs) with cancer face unique psychosocial challenges. This pilot study was aimed at describing the prevalence of psychological morbidities among AYAs with hematologic malignancies during curative-intent therapy and early survivorship and at examining provider perceptions of psychological morbidities in their AYA patients. Patients aged 15 to 39 years with acute leukemia, non-Hodgkin lymphoma, or Hodgkin lymphoma who were undergoing curative-intent therapy (on-treatment group) or were in remission within 2 years of therapy completion (early survivors) underwent a semistructured interview that incorporated measures of anxiety, depression, and posttraumatic stress (PTS). A subset of providers (n = 15) concomitantly completed a survey for each of the first 30 patients enrolled that evaluated their perception of each subject's anxiety, depression, and PTS. Sixty-one of 77 eligible AYAs participated. The median age at diagnosis was 26 years (range, 15-39 years), 64% were male, and 59% were non-Hispanic white. On-treatment demographics differed significantly from early-survivor demographics only in the median time from diagnosis to interview. Among the 61 evaluable AYAs, 23% met the criteria for anxiety, 28% met the criteria for depression, and 13% met the criteria for PTS; 46% demonstrated PTS symptomatology. Thirty-nine percent were impaired in 1 or more psychological domains. Psychological impairments were as frequent among early survivors as AYAs on treatment. Provider perceptions did not significantly correlate with patient survey results. AYAs with hematologic malignancies experience substantial psychological morbidities while they are undergoing therapy and during early survivorship, with more than one-third of the patients included in this study meeting the criteria for anxiety, depression, or traumatic stress. This psychological burden may not be accurately identified by their oncology providers. © 2016 American Cancer Society.

Second Primary Malignant Neoplasms and Survival in Adolescent and Young Adult Cancer Survivors.

PubMed

Keegan, Theresa H M; Bleyer, Archie; Rosenberg, Aaron S; Li, Qian; Goldfarb, Melanie

2017-11-01

Although the increased incidence of second primary malignant neoplasms (SPMs) is a well-known late effect after cancer, few studies have compared survival after an SPM to survival of the same cancer occurring as first primary malignant neoplasm (PM) by age. To assess the survival impact of SPMs in adolescents and young adults (AYAs) (15-39 years) compared with that of pediatric (<15 years) and older adult (≥40 years) patients with the same SPMs. This was a population-based, retrospective cohort study of patients with cancer in 13 Surveillance, Epidemiology and End Results regions in the United States diagnosed from 1992 to 2008 and followed through 2013. Data analysis was performed between June 2016 and January 2017. Five-year relative survival was calculated overall and for each cancer occurring as a PM or SPM by age at diagnosis. The impact of SPM status on cancer-specific death was examined using multivariable Cox proportional hazards regression. A total of 15 954 pediatric, 125 750 AYAs, and 878 370 older adult patients diagnosed as having 14 cancers occurring as a PM or SPM were included. Overall, 5-year survival after an SPM was 33.1% lower for children, 20.2% lower for AYAs, and 8.3% lower for older adults compared with a PM at the same age. For the most common SPMs in AYAs, the absolute difference in 5-year survival was 42% lower for secondary non-Hodgkin lymphoma, 19% for secondary breast carcinoma, 15% for secondary thyroid carcinoma, and 13% for secondary soft-tissue sarcoma. Survival by SPM status was significantly worse in younger vs older patients for thyroid, Hodgkin lymphoma, non-Hodgkin lymphoma, acute myeloid leukemia, soft-tissue sarcoma, and central nervous system cancer. Adolescents and young adults with secondary Hodgkin lymphoma (hazard ratio [95% CI], 3.5 [1.7-7.1]); soft-tissue sarcoma (2.8 [2.1-3.9]); breast carcinoma (2.1 [1.8-2.4]); acute myeloid leukemia (1.9 [1.5-2.4]); and central nervous system cancer (1.8 [1

Cancer in adolescents and young adults: Who remains at risk of poor social functioning over time?

PubMed

Husson, Olga; Zebrack, Bradley J; Aguilar, Christine; Hayes-Lattin, Brandon; Cole, Steve

2017-07-15

The objective of the current study was to examine social functioning among adolescents and young adults (AYAs) within the first 2 years after a cancer diagnosis and compare their scores with population norms and identify trajectories of social functioning over time and its correlates. A multicenter, longitudinal study was conducted among 215 AYA patients with cancer aged 14 to 39 years. A total of 141 patients completed a self-report measure of social functioning within the first 4 months of diagnosis and again at 12 months and 24 months later. AYA patients with cancer were found to have significantly worse social functioning scores around the time of diagnosis (52.0 vs 85.1; P<.001), at the 12-month follow-up (73.1 vs 85.1; P<.001), and at the 24-month follow-up (69.2 vs 85.1; P<.001) when compared with population norms. Significant improvements in social functioning from baseline to the 12-month follow-up were observed; however, social functioning levels remained stable thereafter. Among participants, 9% demonstrated consistently high/normal social functioning, 47% demonstrated improved social functioning, 13% were found to have worsening social functioning, and 32% demonstrated consistently low social functioning. AYA patients with cancer who had consistently low social functioning were more often off treatment at the time of follow-up, reported more physical symptoms and higher levels of distress at baseline and follow-up, and perceived less social support at baseline compared with the other 3 groups. Although improved over time, social functioning still was found to be compromised 24 months after the primary diagnosis. Nearly one-third of these patients remain at risk of poor social functioning. Reducing physical symptoms and psychological distress and enhancing social support by interventions during the period after treatment may potentially help these young survivors to better reintegrate into society. Cancer 2017;123:2743-51. © 2017 American Cancer Society

Identifying and Addressing the Needs of Adolescents and Young Adults With Cancer: Summary of an Institute of Medicine Workshop

PubMed Central

Beaupin, Lynda K.; Demark-Wahnefried, Wendy; Fasciano, Karen; Ganz, Patricia A.; Hayes-Lattin, Brandon; Hudson, Melissa M.; Nevidjon, Brenda; Oeffinger, Kevin C.; Rechis, Ruth; Richardson, Lisa C.; Seibel, Nita L.; Smith, Ashley W.

2015-01-01

Cancer is the leading disease-related cause of death in adolescents and young adults (AYAs). This population faces many short- and long-term health and psychosocial consequences of cancer diagnosis and treatment, but many programs for cancer treatment, survivorship care, and psychosocial support do not focus on the specific needs of AYA cancer patients. Recognizing this health care disparity, the National Cancer Policy Forum of the Institute of Medicine convened a public workshop to examine the needs of AYA patients with cancer. Workshop participants identified many gaps and challenges in the care of AYA cancer patients and discussed potential strategies to address these needs. Suggestions included ways to improve access to care for AYAs, to deliver cancer care that better meets the medical and psychosocial needs of AYAs, to develop educational programs for providers who care for AYA cancer survivors, and to enhance the evidence base for AYAs with cancer by facilitating participation in research. PMID:25568146

Self-Perceived Physical Attractiveness in Relation to Scars Among Adolescent and Young Adult Cancer Survivors: A Population-Based Study.

PubMed

Olsson, Maria; Enskär, Karin; Steineck, Gunnar; Wilderäng, Ulrica; Jarfelt, Marianne

2018-06-01

Cancer treatment may result in various effects that last long after treatment has been concluded. The purpose of this study was to explore to what extent scars affect adolescents and young adults postcancer treatment. In this population-based study, a study-specific questionnaire was developed by a method used in several previous investigations carried out by our research group, Clinical Cancer Epidemiology. Question development involved expert validation by professionals from oncology units, midwives, epidemiologists, and statisticians. The questionnaire was developed in collaboration with adolescent and young adult cancer survivors. The topics covered in the questionnaire were as follows: psychosocial health, body image and sexuality, fertility, education, work, and leisure. The web-based questionnaire was sent to teenage and young adult cancer survivors and matched controls in Sweden. In this study, the relative risk of feeling less attractive due to scars was higher both for female cancer survivors RR 1.48, CI 1.05-2.08 and male cancer survivors RR 1.90, CI 1.15-3.13 compared to controls. The feeling of attractiveness was negatively related to the size of scars in both cancer and control groups. In a logistic regression analysis, significant associations were found between age, education, exercise, depression, and the feeling of low attractiveness due to scars. The results of this study provide a basis for care interventions for teenage and young adult cancer patients during and after cancer treatment. Further research is needed on care interventions to reduce, if possible, the impact of scars.

Recruiting Young Adult Cancer Survivors for Behavioral Research

PubMed Central

Horowitz, Santina; Marcus, Bess

2012-01-01

Young adults have been dramatically underrepresented in cancer survivorship research. One contributing factor is the difficulty recruiting this population. To identify effective recruitment strategies, the current study assessed the yield of strategies used to recruit young survivors for an exercise intervention including: clinic-based recruitment, recruitment at cancer-related events, mailings, telephone-based recruitment, advertising on the internet, radio, television and social networking media, distributing brochures and word-of-mouth referrals. When taking into account the strategies for which we could track the number of survivors approached, recruitment at an oncology clinic was the most productive: 38 % of those approached were screened and 8 % enrolled. When evaluating which strategy yielded the greatest percentage of the sample, however, mailings were the most productive. Given widespread use of the internet and social networking by young adults, investigators should also consider these low-cost recruitment strategies. PMID:22810954

Recruiting young adult cancer survivors for behavioral research.

PubMed

Rabin, Carolyn; Horowitz, Santina; Marcus, Bess

2013-03-01

Young adults have been dramatically underrepresented in cancer survivorship research. One contributing factor is the difficulty recruiting this population. To identify effective recruitment strategies, the current study assessed the yield of strategies used to recruit young survivors for an exercise intervention including: clinic-based recruitment, recruitment at cancer-related events, mailings, telephone-based recruitment, advertising on the internet, radio, television and social networking media, distributing brochures and word-of-mouth referrals. When taking into account the strategies for which we could track the number of survivors approached, recruitment at an oncology clinic was the most productive: 38 % of those approached were screened and 8 % enrolled. When evaluating which strategy yielded the greatest percentage of the sample, however, mailings were the most productive. Given widespread use of the internet and social networking by young adults, investigators should also consider these low-cost recruitment strategies.

Applying Social Network Analysis to Identify the Social Support Needs of Adolescent and Young Adult Cancer Patients and Survivors.

PubMed

Koltai, Kolina; Walsh, Casey; Jones, Barbara; Berkelaar, Brenda L

2018-04-01

This article examines how theoretical and clinical applications of social network analysis (SNA) can inform opportunities for innovation and advancement of social support programming for adolescent and young adult (AYA) cancer patients and survivors. SNA can help address potential barriers and challenges to initiating and sustaining AYA peer support by helping to identify the diverse psychosocial needs among individuals in the AYA age range; find strategic ways to support and connect AYAs at different phases of the cancer trajectory with resources and services; and increase awareness of psychosocial resources and referrals from healthcare providers. Network perspectives on homophily, proximity, and evolution provide a foundational basis to explore the utility of SNA in AYA clinical care and research initiatives. The uniqueness of the AYA oncology community can also provide insight into extending and developing current SNA theories. Using SNA in AYA psychosocial cancer research has the potential to create new ideas and pathways for supporting AYAs across the continuum of care, while also extending theories of SNA. SNA may also prove to be a useful tool for examining social support resources for AYAs with various chronic health conditions and other like groups.

Fertility preservation for girls and young women with cancer: population-based validation of criteria for ovarian tissue cryopreservation.

PubMed

Wallace, W Hamish B; Smith, Alice Grove; Kelsey, Thomas W; Edgar, Angela E; Anderson, Richard A

2014-09-01

Ovarian tissue cryopreservation with later reimplantation has been shown to preserve fertility in adult women, but this approach remains unproven and experimental in children and adolescents. We aimed to assess the use of the Edinburgh selection criteria for ovarian tissue cryopreservation in girls and young women with cancer to determine whether we are offering this invasive procedure to the patients who are most at risk of premature ovarian insufficiency. Cryopreservation of ovarian tissue has been selectively offered to girls and young women with cancer who met the Edinburgh selection criteria since 1996. Between Jan 1, 1996, and June 30, 2012, 410 female patients younger than 18 years at diagnosis were treated for cancer (including leukaemia and brain tumours) at the Edinburgh Children's Cancer Centre, which serves the whole South East of Scotland region. We determined the ovarian status of these patients from review of clinical records and classified them as having premature ovarian insufficiency or not, or as unable to be determined. Patients younger than 12 years at time of data cutoff (Jan 31, 2013) were excluded from the analysis. 34 (8%) of the 410 patients met the Edinburgh selection criteria and were offered ovarian tissue cryopreservation before starting cancer treatment. 13 patients declined the procedure and 21 consented, and the procedure was completed successfully in 20 patients. Of the 20 patients who had ovarian tissue successfully cryopreserved, 14 were available for assessment of ovarian function. Of the 13 patients who had declined the procedure, six were available for assessment of ovarian function. Median age at the time of follow-up for the 20 assessable patients was 16·9 years (IQR 15·5-21·8). Of the 14 assessable patients who had successfully undergone ovarian cryopreservation, six had developed premature ovarian insufficiency at a median age of 13·4 years (IQR 12·5-14·6), one of whom also had a natural pregnancy. Of the six

‘Nothing fit me’: nationwide consultations with young women with breast cancer

PubMed Central

Gould, Judy; Grassau, Pamela; Manthorne, Jackie; Gray, Ross E.; Fitch, Margaret I.

2006-01-01

Abstract Objective  There exists little research about the experience of breast cancer for young women in Canada. To address this gap, the Canadian Breast Cancer Network (CBCN) and the Ontario Breast Cancer Community Research Initiative undertook a research project to explore the information and support experiences, needs and recommendations of geographically diverse Canadian young women with breast cancer. Setting and participants  We consulted with 65 young women in 10 focus groups held across Canada. All women had been diagnosed with breast cancer at, or before, 45 years of age. During the consultations the women were asked to discuss their information and support experiences and needs, as well as resource recommendations related to their diagnosis, treatment and survivorship. Main results  The overarching theme, ‘Nothing Fit Me’, revealed that accessed information, support and programmes/services did not ‘fit’ or match the women's age or life stage. When we asked for their recommendations the young women suggested that information and support match their age and life stage and that health‐care providers create and implement several topical workshops concerning, for example, sexuality, lymphedema and reconstruction. Conclusion  The findings will be used by the CBCN as a general platform from which to conduct further research and/or action strategies. The CBCN will also implement the recommendations from this groundbreaking work as this network formulates a national strategy for young women with breast cancer. PMID:16677195

Empowerment in adolescents and young adults with cancer: Relationship with health‐related quality of life

PubMed Central

Kaal, Suzanne E.J.; Husson, Olga; van Duivenboden, Saskia; Jansen, Rosemarie; Manten‐Horst, Eveliene; Servaes, Petra; Prins, Judith B.; van den Berg, Sanne W.

2017-01-01

BACKGROUND The difficulties adolescents and young adults (AYAs) encounter during a cancer experience may result in a reduction in or absence of empowerment. The aims of the current study were to assess levels of empowerment and associated (demographic, clinical, or psychological) factors and examine the association between empowerment and health‐related quality of life (HRQOL) among AYA patients with cancer. METHODS Patients aged 18 to 35 years at time of cancer diagnosis and who were seen by 1 of the members of the specialized multidisciplinary AYA team of the Radboud University Medical Center were invited to complete questionnaires regarding empowerment; HRQOL; and sociodemographic, clinical, and psychological characteristics (autonomy, coping, unmet social support needs, and psychological distress). RESULTS A total of 83 AYA patients completed the questionnaires. The mean age of the participants at the time of diagnosis was 27.5 years. The vast majority had been treated with chemotherapy (86%), had a more advanced stage of disease, and had completed treatment at the time of participation (74%). The mean empowerment level was 154.1 (standard deviation, 17.8) with a range of 114 to 200. Multivariate analysis demonstrated that the autonomy subscales of self‐awareness (β = .35), capacity for managing new situations (β = .19), and social support (β = .35) were found to be positively associated with empowerment. Coping difficulties (β = ‐.19) were found to be negatively associated with empowerment. Empowerment was independently associated with physical (β = .31), psychological (β = .50), social (β = .39), religious (β = .33), and total HRQOL (β = .52; all P<.01). CONCLUSIONS Low levels of empowerment were associated with low levels of autonomy and social support, female sex, and coping difficulties among AYA patients with cancer. Recognizing these patients as candidates for empowerment interventions ultimately could help to improve HRQOL in late

Risk of metachronous ovarian cancer after ovarian conservation in young women with stage I cervical cancer.

PubMed

Matsuo, Koji; Machida, Hiroko; Horowitz, Max P; Shahzad, Mian M K; Guntupalli, Saketh R; Roman, Lynda D; Wright, Jason D

2017-11-01

While there is an increasing trend of ovarian conservation at the time of surgical treatment for young women with stage I cervical cancer, the risk for subsequent ovarian cancer after ovarian conservation has not been well studied. We sought to examine the incidence of and risk factors for metachronous ovarian cancer among young women with stage I cervical cancer who had ovarian conservation at the time of hysterectomy. The Surveillance, Epidemiology, and End Results Program was used to identify women aged <50 years who underwent hysterectomy with ovarian conservation for stage I cervical cancer from 1983 through 2013 (n = 4365). Time-dependent analysis was performed for ovarian cancer risk after cervical cancer diagnosis. Mean age at cervical cancer diagnosis was 37 years, and the majority of patients had stage IA disease (68.2%) and squamous histology (72.9%). Median follow-up time was 10.8 years, and there were 13 women who developed metachronous ovarian cancer. The 10- and 20-year cumulative incidences of metachronous ovarian cancer were 0.2% (95% confidence interval, 0.1-0.4) and 0.5% (95% confidence interval, 0.2-0.8), respectively. Mean age at the time of diagnosis of metachronous ovarian cancer was 47.5 years, and stage III-IV disease was seen in 55.6%. Age (≥45 vs <45 years, hazard ratio, 4.22; 95% confidence interval, 1.16-15.4; P = .018), ethnicity (non-white vs white, hazard ratio, 4.29; 95% confidence interval, 1.31-14.0; P = .009), cervical cancer histology (adenocarcinoma or adenosquamous vs squamous, hazard ratio, 3.50; 95% confidence interval, 1.17-10.5; P = .028), and adjuvant radiotherapy use (yes vs no, hazard ratio, 3.69; 95% confidence interval, 1.01-13.4; P = .034) were significantly associated with metachronous ovarian cancer risk. The presence of multiple risk factors was associated with a significantly increased risk of metachronous ovarian cancer compared to the no risk factor group: 1 risk factor (hazard ratio range, 2.96-8.43), 2

Levonorgestrel Intrauterine Device Placement in a Premenopausal Breast Cancer Patient with a Bicornuate Uterus.

PubMed

Eskew, Ashley M; Crane, Erin K

2016-01-01

Young women with breast cancer face contraceptive challenges. Data are limited and conflicting on the use of the levonorgestrel intrauterine device (LNG-IUD) in this patient population. A 32-year-old nulligravid woman with a history of breast cancer on tamoxifen presented with new-onset vaginal bleeding. Further workup revealed a previously undiagnosed bicornuate uterus. She underwent hysteroscopy, dilation and curettage, and LNG-IUD placement in each uterine horn. Postoperative follow-up confirmed retention and proper placement of both IUDs. Pathology from the dilation and curettage was benign, and the abnormal uterine bleeding abated. LNG-IUD placement in a young patient with a personal history of breast cancer on tamoxifen and a bicornuate uterus is a safe and feasible alternative for contraception. Copyright © 2016 AAGL. Published by Elsevier Inc. All rights reserved.

Queensland Youth Cancer Service: A Partnership Model to Facilitate Access to Quality Care for Young People Diagnosed with Cancer.

PubMed

Bradford, Natalie K; Henney, Roslyn; Walker, Rick; Walpole, Euan; Kennedy, Glen; Nicholls, Wayne; Pinkerton, Ross

2018-06-01

Global recognition of the need to improve outcomes for adolescents and young adults (AYA) with cancer has led to the development of specific oncology programs and services. In Australia, Youth Cancer Services (YCS) are now established across the country. While each service has been shaped by nationally agreed principles, program development has been influenced by local policy and geographic differences. Queensland is a vast state with a widely dispersed population; coordination of cancer services for young people across this landscape presents unique challenges. The Queensland YCS (QYCS) work in a consultative partnership model with primary treating teams, across both pediatric and adult tertiary cancer services. Understanding how cancer services approach challenges and service development can provide guidance for other developing services. In this article, we describe the goals and development of QYCS and review the outcomes achieved in the service to date. We reviewed referral data and retrieved statewide clinical activity from the web-based data system. We compared these data with cancer registry data to identify disparities and areas for service development. While the service has achieved notable outcomes, challenges remain. These include recruitment of appropriately skilled and trained health professionals for this newly developing area of oncology. In addition, there is an ongoing need to advocate for this relatively small patient group, and to promote awareness and understanding of the need for AYA-specific services. With the dispersed population and concentration of services in metropolitan Brisbane, identifying and testing new innovative models, including telehealth, to reach all AYA diagnosed with cancer regardless of location of care are priorities.

Psychometric evaluation of the Sibling Cancer Needs Instrument (SCNI): an instrument to assess the psychosocial unmet needs of young people who are siblings of cancer patients.

PubMed

Patterson, P; McDonald, F E J; Butow, P; White, K J; Costa, D S J; Millar, B; Bell, M L; Wakefield, C E; Cohn, R J

2014-03-01

The current study sought to establish the psychometric properties of the revised Sibling Cancer Needs Instrument (SCNI) when completed by young people who have a brother or sister with cancer. The participants were 106 young people aged between 12 and 24 who had a living brother or sister diagnosed with any type or stage of cancer in the last 5 years. They were recruited from multiple settings. The initial step in determining the dimensional structure of the questionnaire was exploratory factor analysis and further assessment followed using Rasch analysis. Construct validity and test-retest reliability (n = 17) were also assessed. The final SCNI has 45 items and seven domains: information; practical assistance; "time out" and recreation; feelings; support (friends and other young people); understanding from my family; and sibling relationship. There was a reasonable spread of responses across the scale for every item. Rasch analysis results suggested that overall, respondents used the scale consistently. Support for construct validity was provided by the correlations between psychological distress and the SCNI domains. The internal consistency was good to excellent; Cronbach's alphas ranged from 0.78 to 0.94. The test-retest reliability of the overall measure is 0.88. The SCNI is the first measure of psychosocial unmet needs which has been developed for young people who have a brother or sister with cancer. The sound psychometric properties allow the instrument to be used with confidence. The measure will provide a substantial clinical benefit in highlighting the unmet needs of this population to assist with the prioritisation of targeted supportive care services and evaluating the impact of interventions targeted at siblings.

Satisfaction with fertility- and sexuality-related information in young women with breast cancer--ELIPPSE40 cohort.

PubMed

Ben Charif, Ali; Bouhnik, Anne-Déborah; Rey, Dominique; Provansal, Magali; Courbiere, Blandine; Spire, Bruno; Mancini, Julien

2015-08-05

Young breast cancer survivors are often dissatisfied with the information provided on fertility and sexuality. Our aim was to discuss possible contributing factors and to propose strategies to increase patient satisfaction with such information. Using the French National Health Insurance System database, we constituted the ELIPPSE40 regional cohort of 623 women, aged 18-40, diagnosed with breast cancer between 2005 and 2011. As of January 2014, 319 women had taken part in the 10-, 16-, 28 and 48-month telephone interviews. Satisfaction with the information provided about the potential impact of cancer and its treatment on fertility and sexuality was assessed at 48 months after diagnosis on 5-point Likert scales. Four years after diagnosis, only 53.0 and 42.6% of women were satisfied with fertility- and sexuality-related information, respectively, without any significant change over the 2009-2014 period (P = 0.585 and P = 0.676 respectively). The two issues were moderately correlated (ρ = 0.60; P <0.001). General satisfaction with medical follow-up was the only common correlate. Irrespective of sociodemographic and medical characteristics, satisfaction with fertility-related information was greater among women with a family history of breast/ovarian cancer who had the opportunity to ask questions at the time of cancer disclosure. Satisfaction with sexuality-related information increased with the spontaneous provision of information by physicians at cancer disclosure. Promoting both patients' question asking behavior and more systematic information could improve communication between caregivers and young breast cancer survivors and address distinct unmet needs regarding fertility- and sexuality- related information.

Using Social Media to Target Cancer Prevention in Young Adults: Viewpoint.

PubMed

Sarkar, Urmimala; Le, Gem M; Lyles, Courtney R; Ramo, Danielle; Linos, Eleni; Bibbins-Domingo, Kirsten

2018-06-05

Focusing on primary cancer prevention can reduce its incidence. Changing health behaviors is critical to cancer prevention. Modifiable cancer risk factors include lifestyle behaviors related to vaccination, physical activity, weight control and maintenance, alcohol consumption, and tobacco use. These health habits are often formed in young adulthood, a life stage which currently intersects with the growing population of digital natives whose childhood occurred in the internet era. Social media is a critical communication medium to reach this population of digital natives. Using a life course perspective, the purpose of this viewpoint paper is to describe the current landscape of nascent research using social media to target cancer prevention efforts in young adults and propose future directions to strengthen the scientific knowledge supporting social media strategies to promote cancer prevention behaviors. Leveraging social media as a health promotion tool is a promising strategy to impact modifiable behavioral risk factors for cancer and warrants further research on developing effective communication strategies in young adults to prevent cancer in the future generations. ©Urmimala Sarkar, Gem M Le, Courtney R Lyles, Danielle Ramo, Eleni Linos, Kirsten Bibbins-Domingo. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 05.06.2018.

Uncovering the Biology of Cancers in Adolescents and Young Adults

Cancer.gov

Evidence suggests that some adolescent and young adult cancers may have unique genetic and biological features. Researchers are trying to better understand the biology of these cancers in order to identify potential therapeutic targets.

Adoption consideration and concerns among young adult female cancer survivors.

PubMed

Gorman, Jessica R; Whitcomb, Brian W; Standridge, Daniel; Malcarne, Vanessa L; Romero, Sally A D; Roberts, Samantha A; Su, H Irene

2017-02-01

We compared adoption consideration between female young adult cancer survivors and women of the same age in the general US population, hypothesizing that cancer survivors who desired children would report greater interest in adoption than an age-adjusted general population sample who desired children. After age-standardizing the cancer survivor cohort to match the age distribution of the 2006-2010 National Survey for Family Growth (NSFG), we estimated adoption consideration among women age 18-35 years who wanted a (another) child in the two cohorts overall and within age groups. We assessed characteristics and concerns related to adoption consideration among cancer survivors. Among cancer survivors, 81.6 % (95 % CI 75.7-87.6) reported that they would consider adoption compared to 40.3 % (95 % CI 40.3-40.3) of women in the general population. While over 80 % of the cancer survivor sample reported that they would consider adoption, only 15 % of cancer survivors reported no concerns about adoption. The most common concerns were desire for a biological child (48 %), expense (45 %), adoption agency candidacy (41 %), and needing more information (39 %). We observed a twofold higher interest in adoption when comparing the cancer survivor with the general population, suggesting that adoption is a consideration for many young women who have survived cancer. Adoption is an important family-building option for those who want to have a child but are unable to or choose not to have a biological child. However, young adult survivors may need more support to understand and navigate this process.

Young female cancer survivors' use of fertility care after completing cancer treatment

PubMed Central

Kim, Jayeon; Mersereau, Jennifer E.; Su, H. Irene; Whitcomb, Brian W.; Malcarne, Vanessa L.; Gorman, Jessica R.

2016-01-01

Purpose To investigate factors associated with female young adult cancer survivors’ (YCS) use of fertility care (FC), including consultation or fertility treatment, after completing their cancer treatment. Methods In this cross-sectional study, females between that ages of 18 and 35 years who had been diagnosed with childhood, adolescent, or young adult cancers completed a 20-min web-based survey that included demographics, reproductive history, use of FC, fertility-related informational needs, and reproductive concerns. Results A total of 204 participants completed the survey. Participants’ mean age was 28.3±4.5 years. Thirty (15%) participants reported using FC after cancer treatment. The majority of participants recalled not receiving enough information about FP options at the time of cancer diagnosis (73%). In multivariable analysis, those with higher concerns about having children because of perceived risk to their personal health (P=0.003) were less likely to report use of FC after cancer treatment. Those who had used FC before cancer treatment (P=0.003) and who felt less fertile than age-matched women (P=0.02) were more likely to use FC after their cancer treatment. Conclusions While most YCS in this cohort believed that they did not receive enough information about fertility and most wanted to have children, the vast majority did not seek FC. The findings of this study offer further evidence of the need for improved education and emotional support regarding reproductive options after cancer treatment is completed. Targeted discussions with YCS about appropriate post-treatment FC options may improve providers’ capacity to help YCS meet their parenthood goals. PMID:26939923

Palliative systemic therapy for young women with metastatic breast cancer.

PubMed

Eng, Lee Guek; Dawood, Shaheenah; Dent, Rebecca

2015-09-01

Breast cancer in young women age less than 40 years remains a relatively rare disease. Emerging data suggest that the biology of breast cancer in younger women may differ from that of older women. Although metastatic breast cancer remains incurable, it is definitely treatable; especially in this era of emerging novel therapeutics. Most women have hormone receptor-positive disease and strategies that interfere with proliferation and the PI3 kinase pathway are reporting exciting results. The prognosis of the metastatic HER2 subtype has been extended to a median survival of 56 months with dual HER2 targeting agents in the first-line setting. Finally, triple negative breast cancer has an enlarging range of therapeutic options including immunotherapy, antiangiogenesis therapy, and targeted therapies including agents that interfere with androgen receptor signaling. Combined palliative and holistic approaches are essential to help young women navigate the marathon of treatment for metastatic breast cancer.

Late Stage Cancer Patients: Age Differences in Their Psychophysical Status and Response to Counseling.

ERIC Educational Resources Information Center

Linn, Bernard S.; Linn, Margaret W.

1981-01-01

Studied (N=120) terminally ill cancer patients over several months on quality of life variables, functional status and survival. Counseled patients changed significantly more than controls by three months. Overall, response to counseling was similar in young and old patients, with both improving. (Author/JAC)

Suicide and violent deaths in survivors of cancer in childhood, adolescence and young adulthood-A national cohort study.

PubMed

Gunnes, Maria W; Lie, Rolv T; Bjørge, Tone; Ghaderi, Sara; Syse, Astri; Ruud, Ellen; Wesenberg, Finn; Moster, Dag

2017-02-01

Suicide risk in adult cancer patients is found to be elevated, but limited information exists regarding risks of suicide and non-suicidal violent deaths when diagnosed with cancer in young age. We investigate suicide and violent deaths in a national cohort including individuals diagnosed with cancer before age 25. Through the linkage of different national registries (Cancer Registry of Norway, Norwegian Causes of Death Registry and the National Registry) a cohort of all live births in Norway during 1965-1985 was defined and followed up through 2008. Individuals diagnosed with cancer before age 25 and the cancer-free references were compared using an extended Cox proportional hazard regression model. The cohort comprised 1,218,013 individuals, including 5,440 diagnosed with cancer before age 25. We identified 24 suicides and 14 non-suicidal violent deaths in the cancer group. The hazard ratio (HR) of suicide in the cancer group was 2.5 (95% confidence interval (CI) 1.7-3.8), and was increased both when diagnosed with cancer in childhood (0-14 years of age); HR = 2.3 (95% CI: 1.2-4.6), and during adolescence/young adulthood (15-24 years); HR = 2.6 (95% CI: 1.5-4.2). Survivors of bone/soft tissue sarcomas, CNS tumors and testicular cancer were at particular risk. The risk of non-suicidal violent death was not increased in the cancer survivors (HR = 1.0; 95% CI: 0.6-1.7). Although based on small numbers and the absolute risk of suicide being low, these are novel findings with important implications for establishing adequate follow-up including suicide prevention strategies for young cancer survivors. © 2016 UICC.

Health Literacy in Adolescents and Young Adults: Perspectives from Australian Cancer Survivors.

PubMed

Lin, Merry; Sansom-Daly, Ursula M; Wakefield, Claire E; McGill, Brittany C; Cohn, Richard J

2017-03-01

Health literacy is a critical determinant of health and an emerging public health concern. Little is known about the health literacy of adolescents and young adults (AYAs) or about the ability of young patients to communicate health needs and critically evaluate information. We used qualitative methods to investigate the three aspects of health literacy (functional, communicative, and critical) in Australian AYA cancer survivors. Forty Australian AYA cancer survivors, aged 15-29 either at diagnosis or recruitment, participated in semistructured interviews. Participants were asked about sources of information and ability to understand information, communicate questions, and critically evaluate the validity, reliability, and relevancy of information to their situation. Self-reported adherence levels and advice for AYA-specific care was also obtained. Interviews were coded and analyzed for emergent themes using QSR NVivo 10. Almost all AYAs named their doctor as the primary source of information. Most AYAs reported no difficulties with understanding, communicating, or assessing relevancy of information. Conversely, few AYAs reported confidence in assessment of validity and reliability of information. The doctor-patient relationship appeared to be an influential factor in all aspects of health literacy. AYAs frequently reported having a good understanding and communication around health information; however, few AYAs described engaging in critical evaluations of this information. The potential impact of the doctor-patient relationship across several domains of health literacy suggests that more focus could be placed on promoting health literacy at physician, community, and societal levels, in addition to promoting individual skills.

Social Well-Being Among Adolescents and Young Adults With Cancer: A Systematic Review

PubMed Central

Warner, Echo L.; Kent, Erin E.; Trevino, Kelly M.; Parsons, Helen M.; Zebrack, Brad J.; Kirchhoff, Anne C.

2016-01-01

BACKGROUND A cancer diagnosis during adolescence or young adulthood may negatively influence social well-being. The existing literature concerning the social well-being of adolescents and young adults (AYAs) with cancer was reviewed to identify gaps in current research and highlight priority areas for future research. METHODS A systematic review of the scientific literature published in English from 2000 through 2014 was performed. Eligible studies included patients and survivors diagnosed between the ages of 15 to 39 years that reported on social well-being domains in the City of Hope Cancer Survivor Quality of Life Model. Each article was reviewed for relevance using a standardized template. A total of 253 potential articles were identified. After exclusions, a final sample of 26 articles identified domains of social well-being that are believed to be understudied among AYAs with cancer: 1) educational attainment, employment, and financial burden; 2) social relationships; and 3) supportive care. Articles were read in their entirety, single coded, and summarized according to domain. RESULTS AYAs with cancer report difficulties related to employment, educational attainment, and financial stability. They also report problems with the maintenance and development of peer and family relationships, intimate and marital relationships, and peer support. Supportive services are desired among AYAs. Few studies have reported results in reference to comparison samples or by cancer subtypes. CONCLUSIONS Future research studies on AYAs with cancer should prioritize the inclusion of underserved AYA populations, more heterogeneous cancer samples, and comparison groups to inform the development of supportive services. Priority areas for potential intervention include education and employment reintegration, and social support networks. PMID:26848713

The Rising Incidence of Younger Patients With Colorectal Cancer: Questions About Screening, Biology, and Treatment.

PubMed

Connell, Louise C; Mota, José Mauricio; Braghiroli, Maria Ignez; Hoff, Paulo M

2017-04-01

Colorectal cancer (CRC) is the third leading cancer diagnosed globally and an important cause of cancer-related mortality. Of interest, while we have witnessed a declining incidence trend over the past few decades in the older population, incidence rates for adolescents and young adults have been increasing steadily. Several factors may well explain this apparent epidemic in the young, namely a lack of routine screening and emerging lifestyle issues such as obesity, lack of exercise, and dietary factors. It is known that both environmental and genetic factors can increase the likelihood of developing CRC. Although inherited susceptibility is associated with the most striking increases in risk, and must always be considered in a young patient with CRC, the majority of CRCs are in fact sporadic rather than familial. Early-onset CRC is a truly heterogeneous disease, with mounting evidence to suggest that this patient population has a distinctive molecular profile, very different to late-onset CRC cases. Currently, both younger and older patients with CRC are treated in essentially the same manner, but with a better understanding of the molecular mechanisms underlying CRC in the young, we will have the opportunity to specifically tailor screening and clinical management strategies in this unique patient population in an effort to improve outcomes. The aim of this review is to outline our current knowledge of the distinguishing features of early-onset CRC, the ongoing research efforts, and the evolving evidence in this field.

Anxiety and depression in patients with prostate cancer and other urogenital cancer: a longitudinal study.

PubMed

Hinz, Andreas; Krauss, Oliver; Stolzenburg, Jens-Uwe; Schwalenberg, Thilo; Michalski, Dominik; Schwarz, Reinhold

2009-01-01

The aim of this study was to assess the degree and the course of psychological distress (anxiety and depression) in cancer patients and to detect sociodemographic determinants of the scores. Patients with prostate cancer (n = 287) and other urogenital cancer (n = 126) were tested with the Hospital Anxiety and Depression Scale (HADS) at the following time points: at the beginning (T1) and the end (T2) of the treatment in the hospital, 6 months later (T3), and 1 year later (T4). Anxiety mean scores were highest at the start of the stay in the hospital. About 36% of the patients were at least doubtful cases at T1. However, the anxiety mean scores from T2 to T4 were similar to those of the general population and lower than those of cardiac patients. Depression mean scores were even lower than those of the general population. Young age and receiving radio- and/or chemotherapy were predictive of higher psychological distress. The low mean scores of anxiety and depression from T2 to T4 indicate that most of the prostate cancer patients do not need help from mental health professionals. Nevertheless, some patients may profit from mental health support, especially at the beginning of the stay in the hospital.

Fertility preservation options in breast cancer patients.

PubMed

Kasum, Miro; von Wolff, Michael; Franulić, Daniela; Čehić, Ermin; Klepac-Pulanić, Tajana; Orešković, Slavko; Juras, Josip

2015-01-01

The purpose of this review is to analyse current options for fertility preservation in young women with breast cancer (BC). Considering an increasing number of BC survivors, owing to improvements in cancer treatment and delaying of childbearing, fertility preservation appears to be an important issue. Current fertility preservation options in BC survivors range from well-established standard techniques to experimental or investigational interventions. Among the standard options, random-start ovarian stimulation protocol represents a new technique, which significantly decreases the total time of the in vitro fertilisation cycle. However, in patients with oestrogen-sensitive tumours, stimulation protocols using aromatase inhibitors are currently preferred over tamoxifen regimens. Cryopreservation of embryos and oocytes are nowadays deemed the most successful techniques for fertility preservation in BC patients. GnRH agonists during chemotherapy represent an experimental method for fertility preservation due to conflicting long-term outcome results regarding its safety and efficacy. Cryopreservation of ovarian tissue, in vitro maturation of immature oocytes and other strategies are considered experimental and should only be offered within the context of a clinical trial. An early pretreatment referral to reproductive endocrinologists and oncologists should be suggested to young BC women at risk of infertility, concerning the risks and benefits of fertility preservation options.

Treatment helps young women preserve fertility during breast cancer chemo

Cancer.gov

Researchers have found that young women with breast cancer were able to better preserve their fertility during cancer treatments by using hormone-blocking drug injections that put them into temporary menopause. The results announced today at the annual me

Protecting an adult identity: A grounded theory of supportive care for young adults recently diagnosed with cancer.

PubMed

Soanes, Louise; Gibson, Faith

2018-05-01

For adolescents and young adults living in high-income countries cancer remains the most common disease-related death. Increasing survival rates and projected longevity are positive outcomes, although long-term consequences of cancer and/or its treatment will likely increase the global burden of cancer. In low and middle-income countries the impact and needs of young adults with cancer are largely unknown and require further attention. However, universal studies have revealed that cancer-related needs for this group are multifactorial, complex and largely unmet. In response to these findings, the body of work on supportive care for young adults with cancer is growing. Yet, there is no published research in the context of the United Kingdom, regarding the role young adults play in managing their supportive cancer care needs. To explore the experience, purpose and meaning of supportive cancer care to young adults recently diagnosed with cancer. Using constructivist grounded theory, data were collected in one to one interviews with eleven young adults (seven women and four men aged 19-24 years) being treated for cancer in two English hospitals. Data were analyzed using open and focused coding, constant comparison, theoretical coding and memoing, and this enabled construction of a subjective theory. Young adults in this study interpreted cancer as an interruption to the events, experiences and tasks forming the biographical work of their adult identity. Data analysis led to the construction of the theory, 'protecting an adult identity: self in relation to a diagnosis of cancer in young adulthood'. This theory arose from three categories: fragility of self, maintaining self in an altered reality and mobilizing external resources. Young adults faced the loss of their early adult identity. Interpreting cancer as a temporary interruption, they sought to re-establish their identity by directly and indirectly managing their supportive care needs. These findings contribute to

Toward precision medicine for preserving fertility in cancer patients: existing and emerging fertility preservation options for women.

PubMed

Kim, So-Youn; Kim, Seul Ki; Lee, Jung Ryeol; Woodruff, Teresa K

2016-03-01

As the number of young cancer survivors increases, quality of life after cancer treatment is becoming an ever more important consideration. According to a report from the American Cancer Society, approximately 810,170 women were diagnosed with cancer in 2015 in the United States. Among female cancer survivors, 1 in 250 are of reproductive age. Anticancer therapies can result in infertility or sterility and can have long-term negative effects on bone health, cardiovascular health as a result of reproductive endocrine function. Fertility preservation has been identified by many young patients diagnosed with cancer as second only to survival in terms of importance. The development of fertility preservation technologies aims to help patients diagnosed with cancer to preserve or protect their fertility prior to exposure to chemo- or radiation therapy, thus improving their chances of having a family and enhancing their quality of life as a cancer survivor. Currently, sperm, egg, and embryo banking are standard of care for preserving fertility for reproductive-age cancer patients; ovarian tissue cryopreservation is still considered experimental. Adoption and surrogate may also need to be considered. All patients should receive information about the fertility risks associated with their cancer treatment and the fertility preservation options available in a timely manner, whether or not they decide to ultimately pursue fertility preservation. Because of the ever expanding number of options for treating cancer and preserving fertility, there is now an opportunity to take a precision medicine approach to informing patients about the fertility risks associated with their cancer treatment and the fertility preservation options that are available to them.

Female Reproductive Health After Childhood, Adolescent, and Young Adult Cancers: Guidelines for the Assessment and Management of Female Reproductive Complications

PubMed Central

Metzger, Monika L.; Meacham, Lillian R.; Patterson, Briana; Casillas, Jacqueline S.; Constine, Louis S.; Hijiya, Nobuko; Kenney, Lisa B.; Leonard, Marcia; Lockart, Barbara A.; Likes, Wendy; Green, Daniel M.

2013-01-01

Purpose As more young female patients with cancer survive their primary disease, concerns about reproductive health related to primary therapy gain relevance. Cancer therapy can often affect reproductive organs, leading to impaired pubertal development, hormonal regulation, fertility, and sexual function, affecting quality of life. Methods The Children's Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancer (COG-LTFU Guidelines) are evidence-based recommendations for screening and management of late effects of therapeutic exposures. The guidelines are updated every 2 years by a multidisciplinary panel based on current literature review and expert consensus. Results This review summarizes the current task force recommendations for the assessment and management of female reproductive complications after treatment for childhood, adolescent, and young adult cancers. Experimental pretreatment as well as post-treatment fertility preservation strategies, including barriers and ethical considerations, which are not included in the COG-LTFU Guidelines, are also discussed. Conclusion Ongoing research will continue to inform COG-LTFU Guideline recommendations for follow-up care of female survivors of childhood cancer to improve their health and quality of life. PMID:23382474

Young Men With Cancer Experience Low Referral Rates for Fertility Counseling and Sperm Banking.

PubMed

Grover, Natalie S; Deal, Allison M; Wood, William A; Mersereau, Jennifer E

2016-05-01

With improved cancer survival rates and the current trend of delaying parenthood, fertility is a growing issue among cancer patients. The purpose of this study was to evaluate the incidence of fertility counseling and sperm banking in reproductive-age male cancer patients and to assess factors that influence counseling and banking. Male patients ages 13 to 50 years who received a new cancer diagnosis from January 1, 2013, to May 1, 2015, and planned to initiate curative chemotherapy at our center were identified. Documentation of fertility counseling and sperm cryopreservation was abstracted from the medical record. Univariable and multivariable logistic regression modeling was used to examine variables associated with fertility counseling and sperm banking. Of 201 patients who fit the study criteria, 59 (29%) received fertility counseling and 23 (11%) attempted sperm banking. All patients who banked sperm had documentation of fertility counseling. Younger patients were significantly more likely to be counseled, with mean ages of 27.4 and 40.4 years for counseled and noncounseled patients, respectively (P < .001). Among counseled patients, those with a lower median income (P = .038) or who had Medicaid or no insurance (P = .042) were less likely to bank sperm. In a multivariable logistic regression model, older age (5-year odds ratio, 0.61; P < .001) and presence of comorbidities (odds ratio, 0.15; P = .03) remained significantly associated with a lower counseling rate. There is a low rate of fertility counseling and referral for sperm banking in young men with cancer receiving chemotherapy. Further work is needed to develop interventions to improve fertility counseling rates and opportunities for sperm banking. Copyright © 2016 by American Society of Clinical Oncology.

Is breast cancer in young Asian women more aggressive than in Caucasians? A cross-sectional analysis.

PubMed

Tea, Muy-Kheng M; Fan, Lei; Delancey, James W; Staudigl, Christine; Steurer, Stefan; Lang, Christina; Shao, Zhi-Ming; Singer, Christian F

2013-08-01

Ethnic differences in breast cancer are well described in studies comparing Hispanic and African-American populations to Caucasian populations. The aim of this study was to analyze the biological characteristics of breast cancer (BC) in the young Asian/Han Chinese population compared to Caucasians/Central Europeans. Histopathologies of 642 invasive BC in women at the age of 40 years and younger were analyzed in China and Austria. Pearson's chi-squared test was used to assess differences in the analyzed populations. Significantly larger BC >2 cm (p < 0.0001) and poorly differentiated BC (p = 0.02) as well as more triple-negative BC (p = 0.002) were identified among the Han Chinese group compared to the Central European group. This analysis will provide ethnic-specific insight into the biological characteristics of BC in young patients worldwide.

Validation of a Health Literacy Measure for Adolescents and Young Adults Diagnosed with Cancer.

PubMed

McDonald, Fiona E J; Patterson, Pandora; Costa, Daniel S J; Shepherd, Heather L

2016-03-01

Health literacy can influence long-term health outcomes. This study aimed to validate an adapted version of the Functional, Communicative and Critical Health Literacy measure for adolescent and young adult (AYA) cancer patients and survivors (N = 105; age 12-24 years). Exploratory factor analysis was used to validate the measure, and indicated that a slightly modified item structure better fit the results. Furthermore, item response theory analysis highlighted location and discrimination parameter differences among items. Acceptability of the measure was high. This is the first validation of a health literacy measure among AYAs with an illness such as cancer.

77 FR 41188 - Advisory Committee on Breast Cancer in Young Women, Centers for Disease Control and Prevention...

Federal Register 2010, 2011, 2012, 2013, 2014

2012-07-12

... Committee on Breast Cancer in Young Women, Centers for Disease Control and Prevention: Notice of Charter..., that the Advisory Committee on Breast Cancer in Young Women, Centers for Disease Control and Prevention... Committee on Breast Cancer in Young Women, HHS, CDC, 4770 Buford Highway, NE., Mailstop K52, Atlanta...

Quality of life, lifestyle behavior and employment experience: a comparison between young and midlife survivors of gynecology early stage cancers.

PubMed

Bifulco, G; De Rosa, N; Tornesello, M L; Piccoli, R; Bertrando, A; Lavitola, G; Morra, I; Di Spiezio Sardo, A; Buonaguro, F M; Nappi, C

2012-03-01

To evaluate differences and changes in quality of life (QoL), lifestyle behavior and employment experience of young in comparison to midlife adults in response to early stage gynecologic cancer diagnoses. 263 patients, divided into two age groups (Group A: ≤ 45 and Group B: >45 years), were interviewed on their QoL, lifestyle behavior (dietary habits, tobacco and alcohol use, physical activity) and employment experience (employment status and working time) at diagnosis and within 4 years from the treatment. The QoL was evaluated by European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire C30 (QLQ-C30) and its specific modules for each cancer type (in particular endometrium, cervix, ovarian and breast). Global health status was significantly different between the two groups. In the younger age group a more relevant cancer interference on family life and social activities and a greater impact on perception of health status have been observed. Young women were more affected by fatigue, constipation, gastrointestinal symptoms, lymphedema, poor body image and impaired sexuality. Cancer diagnosis had a major negative impact on employment of younger patients. Conversely, younger patients had overall better health behavior. They reported a higher daily intake of fruits and vegetables, along with lower alcohol consumption, furthermore they were a little more physically active than midlife adults. To enhance quality of life and to promote healthy lifestyle behavior of female cancer patients, particularly in younger age, it is essential to assure multidisciplinary approaches with specific medical intervention and psychosocial supports. Indeed, midlife adults seem to have a more rapid adaptive tendency to return towards levels of well-being, following cancer diagnosis and treatment, than younger patients. Copyright © 2011 Elsevier Inc. All rights reserved.

XRAYS (eXamining Relevance of Articles to Young Survivors) Program Survey of Information Needs and Media Use by Young Breast Cancer Survivors and Young Women at High-Risk for Breast Cancer.

PubMed

Yi, Robin H Pugh; Rezende, Lisa F; Huynh, Julie; Kramer, Karen; Cranmer, Melissa; Schlager, Lisa; Dearfield, Craig T; Friedman, Susan J

2017-09-28

Women age 45 years or younger with breast cancer, or who are at high-risk for breast cancer due to previously having the disease or to genetic risk, have distinct health risks and needs from their older counterparts. Young women frequently seek health information through the Internet and mainstream media, but often find it does not address their particular concerns, that it is difficult to evaluate or interpret, or even misleading. To help women better understand media coverage about new research, Facing Our Risk of Cancer Empowered (FORCE) developed the CDC-funded XRAYS (eXamining Relevance of Articles to Young Survivors) program. To assure that the XRAYS program is responsive to the community's needs, FORCE launched a web-based survey to assess where young women seek information about breast cancer, and to learn their unmet information needs. A total of 1,178 eligible women responded to the survey. In general, the breast cancer survivors and high-risk women between ages 18-45 years who responded to this survey, are using multiple media sources to seek information about breast cancer risk, prevention, screening, and treatment. They place trust in several media sources and use them to inform their medical decisions. Only about one-third of respondents to this survey report discussing media sources with their health care providers. Current survey results indicate that, by providing credible information on the quality of evidence and reporting in media reports on cancer, XRAYS is addressing a key need for health information. Results suggest that it will be useful for XRAYS to offer reviews of articles on a broad range of topics that can inform decisions at each stage of risk assessment and treatment.

76 FR 9577 - Advisory Committee on Breast Cancer in Young Women: Notice of Charter Amendment

Federal Register 2010, 2011, 2012, 2013, 2014

2011-02-18

... Committee on Breast Cancer in Young Women: Notice of Charter Amendment This gives notice under the Federal Advisory Committee Act (Pub. L. 92-463) of October 6, 1972, that the Advisory Committee on Breast Cancer in... Federal Officer, Advisory Committee on Breast Cancer in Young Women, National Center for Chronic Disease...

Adolescent and Young Adult Cancer Survivorship Educational Programming: A Qualitative Evaluation

PubMed Central

Fair, Kayla; Hong, Yan Alicia; Kellstedt, Debra; Ory, Marcia G

2017-01-01

Background This program evaluation considers the need for increased professional and patient education for adolescent and young adult (AYA) cancer survivorship. Due to the high incidence of late effects of cancer treatment among AYA cancer survivors, knowledge sharing and communications are needed throughout the transition from cancer care into community care. AYA survivors are likely to need developmentally appropriate psychosocial care as well as extensive follow-on surveillance by physicians who are educated and aware of the likely chronic conditions and late effects that may occur in these patients. Objective The objective of this study was to evaluate the outcomes of the After Cancer Care Ends, Survivorship Starts for Adolescent and Young Adults (ACCESS AYA) programming. The intent of the ACCESS AYA program was to build health literacy around AYA survivorship issues and to stimulate improved communications between survivors and health care providers. This paper addresses the central research question of “How did the ACCESS AYA program increase health literacy, communications, and understanding among AYA survivors and providers?” Methods The primarily qualitative evaluation included a brief introductory survey of participant awareness and effectiveness of the ACCESS AYA project serving as a recruitment tool. Survey respondents were invited to participate in in-depth interviews based on interview guides tailored to the different stakeholder groups. The evaluation used the Atlas Ti qualitative database and software for coding and key word analyses. Interrater reliability analyses were assessed using Cohen kappa analysis with Stata 12.1 (StataCorp LLC) software. Results The key themes, which included survivor wellbeing, health care professional education, cancer advocates role and education, hospital and community-based resources, and the role of societal support, are presented in a concept map. The interrater reliability scores (ranging from 1 to minus 1

Communication Preferences of Pediatric Cancer Patients: Talking about Prognosis and Their Future Life

PubMed Central

Brand, Sarah R; Fasciano, Karen; Mack, Jennifer W

2017-01-01

Purpose The American Academy of Pediatrics recommends that healthcare providers communicate information to patients in a truthful and developmentally appropriate manner. However there is limited guidance about how to translate these recommendations into clinical practice. The aim of this study was to explore how young cancer patients experienced communication around their illness, especially communication about possible outcomes from disease or treatment. Methods Participants included young people ages 8 to under 18 years with cancer (N=16). Semi-structured interviews focused on their expectations about the future, the process of information exchange, and their preferences for communication within the pediatric oncology setting. Results Overall, participants wanted medical information to be provided to them by their healthcare providers and wanted to be direct participants in medical conversations. However, many participants displayed some ambivalence or conveyed conflicting wishes for prognostic information. For example, some participants reported that they were satisfied with what they knew, but later raised lingering questions. While not the focus of the study, almost every participant discussed social concerns as a key concern for their present and future life. Conclusions While most pediatric cancer patients want to be involved in conversations about their cancer care, including conversations about prognosis, this is an individual and sometimes fluctuating decision, and healthcare providers should be encouraged to discuss preferences for involvement with patients and families. This study highlights the importance of understanding the developmental factors that make pediatric patients unique, especially with regards to their patterns of communication. PMID:27747479

Communication preferences of pediatric cancer patients: talking about prognosis and their future life.

PubMed

Brand, Sarah R; Fasciano, Karen; Mack, Jennifer W

2017-03-01

The American Academy of Pediatrics recommends that healthcare providers communicate information to patients in a truthful and developmentally appropriate manner. However, there is limited guidance about how to translate these recommendations into clinical practice. The aim of this study was to explore how young cancer patients experienced communication around their illness, especially communication about possible outcomes from disease or treatment. Participants included young people ages 8 to under 18 years with cancer (N = 16). Semi-structured interviews focused on their expectations about the future, the process of information exchange, and their preferences for communication within the pediatric oncology setting. Overall, participants wanted medical information to be provided to them by their healthcare providers and wanted to be direct participants in medical conversations. However, many participants displayed some ambivalence or conveyed conflicting wishes for prognostic information. For example, some participants reported that they were satisfied with what they knew, but later raised lingering questions. While not the focus of the study, almost every participant discussed social concerns as a key concern for their present and future life. While most pediatric cancer patients want to be involved in conversations about their cancer care, including conversations about prognosis, this is an individual and sometimes fluctuating decision, and healthcare providers should be encouraged to discuss preferences for involvement with patients and families. This study highlights the importance of understanding the developmental factors that make pediatric patients unique, especially with regard to their patterns of communication.

Adolescent and Young Adult Cancer Survivorship Educational Programming: A Qualitative Evaluation.

PubMed

Vollmer Dahlke, Deborah; Fair, Kayla; Hong, Yan Alicia; Kellstedt, Debra; Ory, Marcia G

2017-02-10

This program evaluation considers the need for increased professional and patient education for adolescent and young adult (AYA) cancer survivorship. Due to the high incidence of late effects of cancer treatment among AYA cancer survivors, knowledge sharing and communications are needed throughout the transition from cancer care into community care. AYA survivors are likely to need developmentally appropriate psychosocial care as well as extensive follow-on surveillance by physicians who are educated and aware of the likely chronic conditions and late effects that may occur in these patients. The objective of this study was to evaluate the outcomes of the After Cancer Care Ends, Survivorship Starts for Adolescent and Young Adults (ACCESS AYA) programming. The intent of the ACCESS AYA program was to build health literacy around AYA survivorship issues and to stimulate improved communications between survivors and health care providers. This paper addresses the central research question of "How did the ACCESS AYA program increase health literacy, communications, and understanding among AYA survivors and providers?" The primarily qualitative evaluation included a brief introductory survey of participant awareness and effectiveness of the ACCESS AYA project serving as a recruitment tool. Survey respondents were invited to participate in in-depth interviews based on interview guides tailored to the different stakeholder groups. The evaluation used the Atlas Ti qualitative database and software for coding and key word analyses. Interrater reliability analyses were assessed using Cohen kappa analysis with Stata 12.1 (StataCorp LLC) software. The key themes, which included survivor wellbeing, health care professional education, cancer advocates role and education, hospital and community-based resources, and the role of societal support, are presented in a concept map. The interrater reliability scores (ranging from 1 to minus 1) were .893 for first cycle coding and .784

Toward precision medicine for preserving fertility in cancer patients: existing and emerging fertility preservation options for women

PubMed Central

Woodruff, Teresa K.

2016-01-01

As the number of young cancer survivors increases, quality of life after cancer treatment is becoming an ever more important consideration. According to a report from the American Cancer Society, approximately 810,170 women were diagnosed with cancer in 2015 in the United States. Among female cancer survivors, 1 in 250 are of reproductive age. Anticancer therapies can result in infertility or sterility and can have long-term negative effects on bone health, cardiovascular health as a result of reproductive endocrine function. Fertility preservation has been identified by many young patients diagnosed with cancer as second only to survival in terms of importance. The development of fertility preservation technologies aims to help patients diagnosed with cancer to preserve or protect their fertility prior to exposure to chemo- or radiation therapy, thus improving their chances of having a family and enhancing their quality of life as a cancer survivor. Currently, sperm, egg, and embryo banking are standard of care for preserving fertility for reproductive-age cancer patients; ovarian tissue cryopreservation is still considered experimental. Adoption and surrogate may also need to be considered. All patients should receive information about the fertility risks associated with their cancer treatment and the fertility preservation options available in a timely manner, whether or not they decide to ultimately pursue fertility preservation. Because of the ever expanding number of options for treating cancer and preserving fertility, there is now an opportunity to take a precision medicine approach to informing patients about the fertility risks associated with their cancer treatment and the fertility preservation options that are available to them. PMID:26768785

Hereditary factors are unlikely behind unusual pattern of early - Onset colorectal cancer in Egyptians: A study of family history and pathology features in Egyptians with large bowel cancer (cross-sectional study).

PubMed

Abou-Zeid, Ahmed A; Jumuah, Wael A; Ebied, Essam F; Abd El Samee Atia, Karim Sabry; El Ghamrini, Yasser; Somaie, Dina A

2017-08-01

Colorectal cancer in Egypt has a higher incidence in young patients compared to western countries, where the disease is more prevalent in the old age group. This difference has been attributed to higher incidence of hereditary cancers in young Egyptian patients. The aim of this study is to compare the family history criteria and pathology features of tumors in young (≤40 years) and old (>40 years) Egyptian patients with adenocarcinoma of the colon and rectum. This is the analysis of our prospectively collected data on the pathology features of tumors in 313 consecutive patients (133 young, 180 old) with colorectal cancer presenting to the Department of Surgery within an eight-year period. A detailed family history was obtained from 258 patients (112 young, 146 old). 41 young and 48 old patients reported family history of cancer, the difference was not statistically significant. Ten young patients (9%) reported a family history of colorectal cancer in a first degree relative (3 fitting into Amsterdam criteria, 7 fitting into less strict criteria) which was not significantly different from the old age group. The pathologic features of tumors in both groups resembled sporadic rather than hereditary cancer and there was no significant difference between groups in tumor location, degree of differentiation, mucin production, synchronous and metachronous colorectal tumors or polyps and grossly stricturing or ulcerating tumors. Extracolonic tumors developed in one young and two old patients. The characteristics of large bowel cancer in young Egyptian patients do not differ significantly from those in older patients. Despite the high incidence of large bowel cancer in young Egyptian patients, family history and pathologic features of tumors do not support a hereditary origin of colorectal cancer in this age group in Egypt. Copyright © 2017 IJS Publishing Group Ltd. Published by Elsevier Ltd. All rights reserved.

Perceived Stress, Parent-Adolescent/Young Adult Communication, and Family Resilience Among Adolescents/Young Adults Who Have a Parent With Cancer in Taiwan: A Longitudinal Study.

PubMed

Chen, Chin-Mi; Du, Bao-Feng; Ho, Ching-Liang; Ou, Wei-Jen; Chang, Yue-Cune; Chen, Wei-Ching

Family resilience helps family members successfully overcome adversity, for example, chronic disease or unpleasant situations. However, few studies have identified correlates of family resilience among adolescents/young adults having a parent with cancer. This longitudinal study explored (1) relationships among family resilience, adolescents' perceived stress, and parent-adolescent/young adult communication; (2) trends in family resilience with data collection time; and (3) differences in parent-adolescent/young adult communication by parent gender (ie, father or mother). Participants were teenagers and young adults (12-25 years) with a parent who had cancer. Data were collected using structured questionnaires at 3 times for 4 to 5 months, with 2 months between each collection. Of 96 adolescent/young adult participants enrolled at T1, only 32 completed all measurements at T3. We found that (1) family resilience was negatively associated with adolescents' perceived stress (B = -0.35) and positively associated with adolescent/young adult communication with both the father (B = 0.58) and the mother (B = 0.36), (2) the degree of family resilience at T3 was significantly lower than at T1 (B = -4.79), and (3) at all 3 data collection times, the degree of adolescent/young adult communication was higher with mothers than with fathers, whether the mother had cancer or did not have cancer. Family resilience was positively associated with parent-adolescent/young adult communication and negatively related to perceived stress. Family resilience tended to decline with longer parental survival since cancer diagnosis. We suggest nursing interventions to reduce adolescent/young adult stress and develop optimal parent-adolescent/young adult communication to enhance family resilience.

The evaluation of older patients with cervical cancer.

PubMed

Gao, Ying; Ma, Jin-lu; Gao, Fei; Song, Li-ping

2013-01-01

The number of elderly patients being diagnosed with cervical cancer is increasing, and the outcome of cervical cancer related to age is controversial. We conducted a retrospective analysis in patients treated for advanced cervical cancer in order to investigate patient characteristics and prognosis of older patients. Medical records were collected of 159 patients with cervical cancer who had been treated with radiotherapy or combined radiotherapy and chemotherapy from January 2007 to January 2009. The patients were divided into two age groups: (1) patients ≥65 years old, and (2) patients <65 years old. There were 52 women in group 1, 107 in group 2. Prognosis, patient characteristics, treatment, and toxicities were evaluated. With a median follow-up of 36.5 months, local control for groups 1 and 2 was 88.5% and 79.4%, respectively. Disease-free survival for the two groups was 71.2% and 67.3%; overall survival was 73.1% and 72.9%. As shown by univariate analyses, there was no statistically significant difference between the two groups (P > 0.05). Seventy-six patients had human papillomavirus (HPV) at diagnosis (twelve women ≥65 years, 64 women ≤65 years; P = 0.000). Forty-two women tested positive for HPV 16, while 32 women tested positive for HPV 18 respectively. Pelvic and/or paraaortic lymph-node metastasis was found in 25 patients (eight in group 1, 17 in group 2; P = 0.960) on computed tomography scan. Of the 159 patients analyzed, sixteen patients (16/52) in group 1 received concurrent chemotherapy, while 96 (96/107) in group 2 completed that treatment. Cervical cancer has the same prognosis in old and young women. Age may not be an independent increased risk of death in women with cervical cancer, and the age-group is at lower risk for virulent HPV strands (HPV 16/18) compared to younger patients. Treatment recommendations were implemented less often for older patients. Radiotherapy remained the most common treatment chosen for elderly patients. This

Colorectal cancer is a leading cause of cancer incidence and mortality among adults younger than 50 years in the USA: a SEER-based analysis with comparison to other young-onset cancers.

PubMed

Bhandari, Abhishek; Woodhouse, Melissa; Gupta, Samir

2017-02-01

Colorectal cancer (CRC) incidence and mortality are rising among young adults. Our aim was to contrast the relative incidence and mortality of CRC to other common cancers among young adults in the USA. We used Surveillance, Epidemiology, and End Results registry data to compare cancer site-specific and age-specific mortality and incident rates for adults younger than age 50. We summarized extracted data, both overall, and stratified by sex. We found CRC was the third leading cause of cancer death among adults younger than age 50, after breast and lung cancer (1.67 cases per 100,000). Among young women, CRC was the fourth leading cause of cancer death (1.51 per 100,000). Among young men, CRC was the second leading cause of cancer death (1.82 cases per 100,000). CRC was the second most incident cancer among young adults for men and women combined. Among men, CRC was the second most incident cancer after age 30, with 4.9, 9.0, 16.4, and 30.8 cases per 100,000 for ages 30-34, 35-39, 40-44, and 45-49 years, respectively. Among women, CRC incidence was similar with 4.2, 7.6, 15.3, and 25.9 cases per 100,000 for ages 30-34, 35-39, 40-44, and 45-49 years, respectively. These results show that CRC is a leading cause of cancer incidence and mortality among young adults in the USA, relative to other cancers. Given trends toward increasing rates of CRC among young adults, strategies for identifying individuals at risk for young-onset CRC who might benefit from early age of screening initiation merit investigation. Copyright © 2016 American Federation for Medical Research.

Oral cancer awareness in young South-Asian communities in London.

PubMed

Merchant, R; Gallagher, J E; Scott, S E

2016-03-01

First, to evaluate awareness of oral cancer amongst the young South-Asian community in London and identify any aspects of knowledge about oral cancer that are lacking; and, second, to determine whether demographic factors or health-related behaviours are associated with knowledge of oral cancer. Cross-sectional questionnaire survey. South Asians aged 18-44 years attending community centres or places of worship in London. Oral cancer awareness; health-related behaviours. Respondents (n = 201) were mainly male (61%), Indian (77%) and Hindu (35%). Over half (58%; n = 113) had one or more negative health-related behaviours and only 18% had attended a dentist in the previous two years. Chewing paan with betel nut (OR = 4.08, 95% CI = 1.58-10.59, p < 0.01), and time since last visit to a dentist (OR = 4.90, 95% CI = 2.13-11.28, p < 0.01) were independently associated with respondents level of knowledge of mouth cancer; the former positively and the latter negatively. The results suggest that young adults in the South Asian Community are exposed to a number of risk factors for oral cancer yet have poor knowledge of the implications of these health-related behaviours, and ways in which oral cancer can be detected earlier. The survey highlighted specific issues for action.

Analysis of semen parameters in a young cohort of cancer patients.

PubMed

DiNofia, Amanda M; Wang, Xingmei; Yannekis, Gia; Ogle, Sue; Hobbie, Wendy L; Carlson, Claire A; Ginsberg, Jill P

2017-02-01

Infertility can be the result of some common cancer treatments and can significantly impact quality of life. Semen cryopreservation allows for fertility preservation. We analyzed the semen parameters of specimens collected from pubertal males from the Children's Hospital of Philadelphia (CHOP) in order to expand current knowledge on the quality of these specimens and inform a standard clinical practice. Males who were at least Tanner stage III and newly diagnosed with cancer at CHOP were approached regarding sperm banking. The success and quality of the samples collected were analyzed and compared in relation to prior treatment, age, and diagnosis. From 399 patients approached for semen collection, 339 (85%) attempted to bank sperm, of which 265 (78%) were successful and 60 (15%) refused to participate. Therapy prior to sperm banking significantly impacted a successful collection (P < 0.01). Only 16.9% of the untreated patients were azoospermic, whereas 84.0% of the treated subjects were azoospermic. Older patients were less likely to be azoospermic and have a greater quality collection when compared with younger patients (P < 0.01). However, 65% of our youngest patients still were able to cryopreserve semen. There was no difference in azoospermia across diagnostic groups (P = 0.35), though there were differences in quality of semen parameters across diagnoses. Our data support that sperm banking pubertal males prior to the initiation of therapy is feasible. While there were differences in quality of semen parameters across age and diagnostic groups, most males, regardless of age or diagnosis, had adequate specimens for cryopreservation. © 2016 Wiley Periodicals, Inc.

Testicular cancer in young men and parental occupational exposure.

PubMed

Kardaun, J W; Hayes, R B; Pottern, L M; Brown, L M; Hoover, R N

1991-01-01

To investigate whether parental occupation, especially during the 12 month period before birth, could be responsible for elevated rates of testicular cancer in young men, we used data from a case-control study of 223 cases and 212 controls conducted in the Washington, DC area. For all histologic types of testicular cancer combined, no significant associations were found for specific occupations, nor for the broad occupational categories of professional, other white collar, or blue collar workers. However, for cases with seminomas, excess risks were seen for those with parents employed in the following occupations: mothers in health-related occupations, O.R. = 4.6 (1.1-19.1), and fathers working in automobile service stations, O.R. = 4.0 (0.6-24.5), manufacturing industries, O.R. = 2.2 (1.0-4.2), and aircraft production and maintenance, O.R. = 5.3 (0.7-24.1). Although these findings for seminoma are intriguing, they do not explain the increase of testicular cancer in young men.

Biological ageing and frailty markers in breast cancer patients.

PubMed

Brouwers, Barbara; Dalmasso, Bruna; Hatse, Sigrid; Laenen, Annouschka; Kenis, Cindy; Swerts, Evalien; Neven, Patrick; Smeets, Ann; Schöffski, Patrick; Wildiers, Hans

2015-05-01

Older cancer patients are a highly heterogeneous population in terms of global health and physiological reserves, and it is often difficult to determine the best treatment. Moreover, clinical tools currently used to assess global health require dedicated time and lack a standardized end score. Circulating markers of biological age and/or fitness could complement or partially substitute the existing screening tools. In this study we explored the relationship of potential ageing/frailty biomarkers with age and clinical frailty. On a population of 82 young and 162 older non-metastatic breast cancer patients, we measured mean leukocyte telomere length and plasma levels of interleukin-6 (IL-6), regulated upon activation, normal T cell expressed and secreted (RANTES), monocyte chemotactic protein 1 (MCP-1), insulin-like growth factor 1 (IGF-1). We also developed a new tool to summarize clinical frailty, designated Leuven Oncogeriatric Frailty Score (LOFS), by integrating GA results in a single, semi-continuous score. LOFS' median score was 8, on a scale from 0=frail to 10=fit. IL-6 levels were associated with chronological age in both groups and with clinical frailty in older breast cancer patients, whereas telomere length, IGF-1 and MCP-1 only correlated with age. Plasma IL-6 should be further explored as frailty biomarker in cancer patients.

Young Men Have Equivalent Biochemical Outcomes Compared With Older Men After Treatment With Brachytherapy for Prostate Cancer

DOE Office of Scientific and Technical Information (OSTI.GOV)

Burri, Ryan J.; Ho, Alice Y.; Forsythe, Kevin

Purpose: To evaluate retrospectively the biochemical outcomes of young men treated with low-dose-rate brachytherapy for prostate cancer. Methods and Materials: From 1990 to 2005, 1,665 men with clinically localized prostate cancer were treated with low-dose-rate brachytherapy {+-} hormone therapy (HT) {+-} external beam radiotherapy and underwent {>=}2 years of follow-up. Patients were stratified on the basis of age: {<=}60 (n = 378) and >60 years (n = 1,287). Biochemical failure was defined as a prostate-specific antigen (PSA) nadir plus 2 ng/mL. Univariate and multivariate analyses were used to determine the association of variables with freedom from biochemical failure (FFbF). Results:more » Median follow-up was 68 months (range, 24-180) for men {<=}60 years and 66 months (range, 24-200) for men >60. For the entire group, the actuarial 5- and 8-year FFbF rates were 94% and 88%, respectively. Men {<=}60 demonstrated similar 5- and 8-year FFbF (95% and 92%) compared with men >60 (93% and 87%; p = 0.071). A larger percent of young patients presented with low-risk disease; lower clinical stage, Gleason score (GS), and pretreatment PSA values; were treated after 1997; did not receive any HT; and had a high biologic effective dose (BED) of radiation (all ps <0.001). On multivariate analysis, PSA (p = 0.001), GS (p = 0.005), and BED (p < 0.001) were significantly associated with FFbF, but age was not (p = 0.665). Conclusion: Young men achieve excellent 5- and 8-year biochemical control rates that are comparable to those of older men after prostate brachytherapy. Young age should not be a deterrent when considering brachytherapy as a primary treatment option for clinically localized prostate cancer.« less

Being normal, not vulnerable: case study of a 2-day residential programme for young adults with cancer

PubMed Central

Martins, Ana; Taylor, Rachel M; Morgan, Sue; Fern, Lorna A

2017-01-01

Objectives To identify and describe the outcomes and facilitating processes of participation at ‘Find Your Sense of Tumour’ (FYSOT), a 2-day residential programme/conference for young people with cancer, from the perspective of professionals attending and patient representatives. Design Case study. Setting Observation of the ‘Find Your Sense of Tumour’ over 18s residential programme and face-to-face interviews in hospital and phone interviews. Participants Twenty-six participants — 19 professionals from hospitals across the UK who accompanied young people to FYSOT; 3 programme organisers; and 4 young people from the programme steering committee. Methods Participant observation and semistructured interviews. Results This process evaluation of an educational, social and peer-to-peer support residential weekend for young people with cancer identified key outcomes for young people — positive attitudes (increased sociability, confidence), belonging (feeling accepted, understood), recreation (trying new activities, having fun) and increased knowledge (balance between educational talks and interactions with other young people); and three overarching facilitating processes — being with other young people, the professionals accompanying young people to the event for support and guidance, and the conference/intentional programming. Being in a safe, relaxed and fun environment with other young people facilitates the development of peer support networks and increases young people’s confidence and knowledge. Although the focus of the residential programme is on young people, interviewees acknowledge the impact of attending on professionals’ motivation, learning and changes in practice. Conclusions This study has extended our understanding of the role of residential programmes by identifying outcomes and facilitating mechanisms. We have shown that residential programmes have an important role in providing participants with social, emotional and informational

Gastric cancer in young vs old Romanian patients: immunoprofile with emphasis on maspin and mena protein reactivity.

PubMed

Gurzu, Simona; Kadar, Zoltan; Sugimura, Haruhiko; Bara, Tivadar; Bara, Tivadar; Halmaciu, Ioana; Jung, Ioan

2015-03-01

Increasing number of early-onset gastric carcinomas (GCs) and controversial results regarding the differences among young and older patients with this type of cancer are the reasons why correlation of clinicopathological factors with molecular markers is necessary. The aim of our study was to compare the demographic, clinical and immunohistochemical (IHC) aspects in Romanian patients with GC diagnosed below and above 45 years old. In 191 samples provided from patients with GC, the clinicopathological parameters were correlated with a panel of 15 antibodies: E-cadherin, HER-2, VEGF, CD31, CD105, COX-2, maspin, bax, bcl-2, p53, Ki67, MLH-1, MSH-2, mena protein and vimentin. Compared to the conventional cases, GCs diagnosed below 45 years old were more frequently located at the gastroesophageal junction and presented a higher percentage of lymph node metastases. The diffuse type E-cadherin/mena/p53/Ki67/bax-negative cases that displayed nuclear maspin positivity were also more frequently in younger patients. The intestinal type early-onset GCs were the most angiogenic ones, the apoptotic rate being lower than in the intestinal type GCs of the aged. Compared to the conventional cases, in the early-onset GCs the nuclear maspin-mediated antiproliferative activity is more intense in diffuse type while the mena-dependent tumor cell proliferation is more characteristic for intestinal type GCs. © 2014 APMIS. Published by John Wiley & Sons Ltd.

Fertility and pregnancy issues in BRCA-mutated breast cancer patients.

PubMed

Lambertini, Matteo; Goldrat, Oranite; Toss, Angela; Azim, Hatem A; Peccatori, Fedro A; Ignatiadis, Michail; Del Mastro, Lucia; Demeestere, Isabelle

2017-09-01

Fertility and pregnancy-related issues represent one of the main areas of concerns for young women with breast cancer. Carrying a germline deleterious BRCA mutation adds additional burden on this regard due to the specific issues that should be considered during the oncofertility counseling of this special patient group. Despite the availability of a growing amount of data in the general breast cancer population on the feasibility and safety of fertility preservation and pregnancy after diagnosis, numerous challenges remain for BRCA-mutated breast cancer patients in whom very limited studies have been performed so far. Therefore, studies aiming to address the specific issues of these patients, including the impact of the mutation on their fertility potential, the safety and efficacy of the different strategies for fertility preservation, and the feasibility of having a pregnancy after diagnosis, should be considered a research priority. The aim of the present manuscript is to perform an in depth overview on the role of BRCA mutations in breast cancer with a specific focus on their impact on reproductive potential, and to discuss the fertility and pregnancy issues faced by BRCA-mutated breast cancer patients. The final goal of this manuscript is to highlight current and upcoming knowledge in this field for trying to help physicians dealing with these patients during oncofertility counseling. Copyright © 2017 Elsevier Ltd. All rights reserved.

Young Women's Responses to Smoking and Breast Cancer Risk Information

ERIC Educational Resources Information Center

Bottorff, Joan L.; McKeown, Stephanie Barclay; Carey, Joanne; Haines, Rebecca; Okoli, Chizimuzo; Johnson, Kenneth C.; Easley, Julie; Ferrence, Roberta; Baillie, Lynne; Ptolemy, Erin

2010-01-01

Current evidence confirms that young women who smoke or who have regular long-term exposure to secondhand smoke (SHS) have an increased risk of developing premenopausal breast cancer. The aim of this research was to examine the responses of young women to health information about the links between active smoking and SHS exposure and breast cancer…

A Randomized Trial of a Facebook-based Physical Activity Intervention for Young Adult Cancer Survivors

PubMed Central

Valle, Carmina G.; Tate, Deborah F.; Mayer, Deborah K.; Allicock, Marlyn; Cai, Jianwen

2013-01-01

Purpose Over half of young adult cancer survivors do not meet physical activity (PA) guidelines. PA interventions can enhance health and quality of life among young adult cancer survivors. However, few exercise interventions have been designed and tested in this population. This study evaluated the feasibility and preliminary efficacy of a 12-week, Facebook-based intervention (FITNET) aimed at increasing moderate-to-vigorous intensity PA compared to a Facebook-based self-help comparison (SC) condition. Methods Young adult cancer survivors (n=86) were randomly assigned to the FITNET or SC group. All participants were asked to complete self-administered online questionnaires at baseline and after 12 weeks. Results Seventy-seven percent of participants completed post-intervention assessments, and most participants reported using intervention components as intended. Participants in both groups would recommend the program to other young adult cancer survivors (FITNET: 46.9% vs. SC: 61.8%; p=0.225). Over 12 weeks, both groups increased self-reported weekly minutes of moderate-to-vigorous PA (FITNET: 67 minutes/week, p=0.009 vs. SC: 46 minutes/week, p=0.045), with no significant difference between groups. Increases in light PA were 135 minutes/week greater in the FITNET group relative to the SC group (p=0.032), and the FITNET group reported significant weight loss over time (−2.1 kg, p=0.004; p=0.083 between groups). Conclusions Facebook-based intervention approaches demonstrated potential for increasing PA in young adult cancer survivors. Implications for Cancer Survivors Social networking sites may be a feasible way for young adult cancer survivors to receive health information and support to promote PA and healthy behaviors. PMID:23532799

Adolescents and young adults with cancer: aspects of adherence - a questionnaire study.

PubMed

Kleinke, Anne Marie; Classen, Carl Friedrich

2018-01-01

For adolescents and young adults (AYAs), a cancer diagnosis represents an extraordinary strike in a vulnerable phase of life. They have special needs that the medical system has to take into consideration, and they exhibit a lower degree of therapy adherence than both older and younger patients. The purpose of this study was first to analyze the adherence of AYAs with cancer compared to a group of older patients and, second, to determine correlated parameters, with focus on the psychosocial interaction between physicians and patients. In 2012, a complete 1 year cohort of patients reported, by use of a questionnaire, to the Rostock clinical cancer registry, and a group of older patients were invited to answer a multi-item set of questionnaires on a volunteer basis, leading to a population-based cross-sectional analysis. This included a bias due to non-answering which is unavoidable in such a setting. The questionnaire consisted of well-established standard questionnaires, a questionnaire on adherence that has just recently been published, and a self-written questionnaire focusing on patient-physician relationship. The responses were analyzed for our current study. Gender, religion, education, age, anxiety, family atmosphere, or physician-patient relationship were not significantly correlated to adherence in AYAs. However, markedly more AYAs, as compared to the older patients group, considered breaking off therapy and reported suboptimal communication with the physicians. Only the perceived physical illness could be identified as a factor related to adherence among the AYA group. Our findings confirm the need for more focused approaches to serve the special needs of AYAs, with particular attention on specific items that showed up discriminating AYAs from older patients, that is, Internet use and communication with physicians. Here, further research is needed to examine adherence to specific treatment protocols.

BRCA Testing in Young Cancer Patients

Cancer.gov

Testing for genetic mutations strongly associated with an increased breast cancer risk has risen dramatically among women younger than age 40 who are diagnosed with the disease, according to a new study.

Chest wall leiomyosarcoma after breast-conservative therapy for early-stage breast cancer in a young woman with Li-Fraumeni syndrome.

PubMed

Henry, Eve; Villalobos, Victor; Million, Lynn; Jensen, Kristin C; West, Robert; Ganjoo, Kristen; Lebensohn, Alexandra; Ford, James M; Telli, Melinda L

2012-08-01

Li-Fraumeni syndrome (LFS) is one of the most penetrant forms of familial cancer susceptibility syndromes, characterized by early age at tumor onset and a wide spectrum of malignant tumors. Identifying LFS in patients with cancer is clinically imperative because they have an increased sensitivity to ionizing radiation and are more likely to develop radiation-induced secondary malignancies. This case report describes a young woman whose initial presentation of LFS was early-onset breast cancer and whose treatment of this primary malignancy with breast conservation likely resulted in a secondary malignancy arising in her radiation field. As seen in this case, most breast cancers in patients with LFS exhibit a triple-positive phenotype (estrogen receptor-positive/progesterone receptor-positive/HER2-positive). Although this patient met classic LFS criteria based on age and personal and family history of cancer, the NCCN Clinical Practice Guidelines in Oncology for Genetic/Familial High-Risk Assessment: Breast and Ovarian Cancer endorse genetic screening for TP53 mutations in a subset of patients with early-onset breast cancer, even in the absence of a suggestive family history, because of the potential for de novo TP53 mutations.

77 FR 16232 - Advisory Committee on Breast Cancer in Young Women (ACBCYW)

Federal Register 2010, 2011, 2012, 2013, 2014

2012-03-20

... Committee on Breast Cancer in Young Women (ACBCYW) In accordance with section 10(a)(2) of the Federal..., development, implementation and evaluation of evidence-based activities designed to prevent breast cancer.../practitioners regarding topics such as breast health, symptoms, diagnosis, and treatment of breast cancer in...

Age at diagnosis may trump family history in driving BRCA testing in a population of breast cancer patients

PubMed Central

Vig, Hetal S.; McCarthy, Anne Marie; Liao, Kaijun; Demeter, Mirar Bristol; Fredericks, Tracey; Armstrong, Katrina

2013-01-01

Background Standard BRCA genetic testing criteria include young age of diagnosis, family history, and Jewish ancestry. The purpose of this study was to assess the effect of these criteria on BRCA test utilization in breast cancer patients. Methods Breast cancer patients aged 18-64yrs living in Pennsylvania in 2007 completed a survey on family history of breast and ovarian cancer and BRCA testing (N=2213). Multivariate logistic regression was used to estimate odds of BRCA testing by patient characteristics, and predicted probabilities of testing were calculated for several clinical scenarios. Results Young age at diagnosis (<50 yrs.) was strongly associated with BRCA testing, with women diagnosed before age 50 yrs. having nearly five times the odds of receiving BRCA testing compared to women diagnosed at age 50 or older (OR=4.81, 95% CI: 3.85-6.00, p<0.001). Despite a similar BRCA mutation prevalence estimate (8-10%), a young Jewish patient <50 yrs. with no family history had markedly higher predicted probability of testing (63%) compared with an older, non-Jewish breast cancer patient with more than 1 first degree relative (FDR) (43%). Conclusion Age at diagnosis, Jewish ancestry, and both maternal and paternal family history are strongly predictive of BRCA testing. However, among women diagnosed at age 50 or older, family history may be an underutilized criterion that may benefit from targeted intervention. Impact Robust methods specific to ascertaining detailed family history, such as through electronic medical records (EMR), are needed to accurately identify patients for BRCA testing. PMID:23917453

Age at diagnosis may trump family history in driving BRCA testing in a population of breast cancer patients.

PubMed

Vig, Hetal S; McCarthy, Anne Marie; Liao, Kaijun; Demeter, Mirar Bristol; Fredericks, Tracey; Armstrong, Katrina

2013-10-01

Standard BRCA genetic testing criteria include young age of diagnosis, family history, and Jewish ancestry. The purpose of this study was to assess the effect of these criteria on BRCA test utilization in breast cancer patients. Breast cancer patients aged 18 to 64 years living in Pennsylvania in 2007 completed a survey on family history of breast and ovarian cancer and BRCA testing (N = 2,213). Multivariate logistic regression was used to estimate odds of BRCA testing by patient characteristics, and predicted probabilities of testing were calculated for several clinical scenarios. Young age at diagnosis (<50 years) was strongly associated with BRCA testing, with women diagnosed before age 50 years having nearly five times the odds of receiving BRCA testing compared to women diagnosed at age 50 or older (OR = 4.81; 95% CI, 3.85-6.00; P < 0.001). Despite a similar BRCA mutation prevalence estimate (8-10%), a young Jewish patient <50 years with no family history had markedly higher predicted probability of testing (63%) compared with an older, non-Jewish breast cancer patient with more than one first-degree relative (43%). Age at diagnosis, Jewish ancestry, and both maternal and paternal family history are strongly predictive of BRCA testing. However, among women diagnosed at age 50 or older, family history may be an underused criterion that may benefit from targeted intervention. Robust methods specific to ascertaining detailed family history, such as through electronic medical records, are needed to accurately identify patients for BRCA testing.

Young female cancer patients' experiences with fertility counselling and fertility preservation-a qualitative small-scale study within the Danish health care setting.

PubMed

Hoeg, Didde; Schmidt, Lone; Macklon, Kirsten T

2016-07-14

Fertility counselling for young women newly diagnosed with cancer is an important field of preconceptional counselling. This qualitative, small-scale study explored how young women newly diagnosed with cancer experienced specialized fertility preservation counselling and treatment in the public Danish health care system. Semi-structured, in-depth interviews were conducted with five women below 40 years recently diagnosed with cancer. All women received fertility counselling by a fertility specialist at the Fertility Clinic, University Hospital of Copenhagen, Denmark before initiation of cancer treatment. Participants were interviewed at a place chosen by them, and interviews were recorded and transcribed verbatim. Data were analysed using systematic text condensation developed by Malterud and inspired by Giorgi's phenomenological analysis. None of the participants were aware that chemotherapy could destroy their eggs. The participants described how specialized fertility counselling and fertility preservation contributed to a belief in life after cancer, which gave them hope that they would survive their cancer disease. Further, the women described how the possibility of fertility preservation removed a huge concern and enabled them to concentrate on their cancer treatment and on getting better. Overall, the specialized fertility counselling and treatment to preserve fertility was highly valued. The women felt it gave them a choice about their future fertility. The fertility expert presented the various fertility-preserving scenarios, and the women were content that they had an actual choice.

Reasons Why Young Women Accept or Decline Fertility Preservation After Cancer Diagnosis.

PubMed

Hershberger, Patricia E; Sipsma, Heather; Finnegan, Lorna; Hirshfeld-Cytron, Jennifer

2016-01-01

To understand young women's reasons for accepting or declining fertility preservation after cancer diagnosis to aid in the development of theory regarding decision making in this context. Qualitative descriptive. Participants' homes or other private location. Twenty-seven young women (mean age, 29 years) diagnosed with cancer and eligible for fertility preservation. Recruitment was conducted via the Internet and in fertility centers. Participants completed demographic questionnaires and in-depth semi-structured interviews. Tenets of grounded theory guided an inductive and deductive analysis. Young women's reasons for deciding whether to undergo fertility preservation were linked to four theoretical dimensions: Cognitive Appraisals, Emotional Responses, Moral Judgments, and Decision Partners. Women who declined fertility preservation described more reasons in the Cognitive Appraisals dimension, including financial cost and human risks, than women who accepted. In the Emotional Responses dimension, most women who accepted fertility preservation reported a strong desire for biological motherhood, whereas women who declined tended to report a strong desire for surviving cancer. Three participants who declined reported reasons linked to the Moral Judgments dimension, and most participants were influenced by Decision Partners, including husbands, boyfriends, parents, and clinicians. The primary reason on which many but not all participants based decisions related to fertility preservation was whether the immediate emphasis of care should be placed on surviving cancer or securing options for future biological motherhood. Nurses and other clinicians should base education and counseling on the four theoretical dimensions to effectively support young women with cancer. Copyright © 2016 AWHONN, the Association of Women's Health, Obstetric and Neonatal Nurses. Published by Elsevier Inc. All rights reserved.

Reasons Why Young Women Accept or Decline Fertility Preservation Following Cancer Diagnosis

PubMed Central

Hershberger, Patricia E.; Sipsma, Heather; Finnegan, Lorna; Hirshfeld-Cytron, Jennifer

2015-01-01

Objective To understand young women’s reasons for accepting or declining fertility preservation following cancer diagnosis to aid in the development of theory regarding decision making in this context. Design Qualitative descriptive. Setting Participants’ homes or other private location. Participants Twenty-seven young women (mean age = 29 years) diagnosed with cancer and eligible for fertility preservation. Methods Recruitment was conducted via the Internet and in fertility centers. Participants completed demographic questionnaires and in-depth semi-structured interviews. Tenets of grounded theory guided an inductive and deductive analysis. Results Young women’s reasons for deciding whether to undergo fertility preservation were linked to four theoretical dimensions: Cognitive Appraisals, Emotional Responses, Moral Judgments, and Decision Partners. Women who declined fertility preservation described more reasons in the Cognitive Appraisals dimension, including financial cost and human risks, than women who accepted. In the Emotional Responses dimension, most women who accepted fertility preservation reported a strong desire for biological motherhood, whereas women who declined tended to report a strong desire for surviving cancer. Three participants who declined reported reasons linked to the Moral Judgments dimension, and the majority were influenced by Decision Partners, including husbands, boyfriends, parents, and clinicians. Conclusion The primary reason upon which many but not all participants based decisions related to fertility preservation was whether the immediate emphasis of care should be placed on surviving cancer or securing options for future biological motherhood. Nurses and other clinicians should base education and counseling on the four theoretical dimensions to effectively support young women with cancer. PMID:26815806

Health behaviours of young mothers: Implications for health promotion and cancer prevention.

PubMed

Hackshaw-McGeagh, Lucy; Jamie, Kimberly; Beynon, Rhona; O'Neill, Roisin

2018-04-01

Evidence suggests that younger mothers engage in poorer health behaviours, resulting in increased cancer risk. We aimed to better understand the health behaviours of younger mothers and the factors that influence their lifestyle choices, in order to improve cancer prevention within this population. A multiple focus group, photo-elicitation-aided approach was used, in which young mothers ( n  = 27; aged 16-24 years) were provided with cameras and asked to capture 'a week in your life'. Photographs were developed and participants invited to an initial focus group where photographs were used to elicit discussion, exploring participants' health behaviours. Data were thematically analysed particularly identifying themes relating to barriers and facilitators of positive health behaviours. Participants were later invited to participate in a second focus group, to explore and validate identified themes further. Themes emerged from the data relating to (1) the mothers' personal perceptions of health, (2) health-related behaviours and (3) beliefs about cancer and its causes. Barriers to positive health behaviours included a lack of money, childcare and cookery skills; facilitators included the social media, commercial weight loss programmes and local community organisations. Study findings provide insight into the health behaviours and life choices of young mothers. They help illustrate health perceptions in relation to cancer risk, providing an understanding of how their daily routine and circumstance influence young women's decisions and lifestyle behaviour choices and highlighting barriers to, and facilitators of, positive health behaviours. Data hold potential to inform future health-related research among young mothers, particularly relating to cancer prevention intervention.

Understanding the Needs of Young Women Regarding Breast Cancer Risk Assessment and Genetic Testing: Convergence and Divergence among Patient-Counselor Perceptions and the Promise of Peer Support.

PubMed

Evans, Chalanda; Hamilton, Rebekah J; Tercyak, Kenneth P; Peshkin, Beth N; Rabemananjara, Kantoniony; Isaacs, Claudine; O'Neill, Suzanne C

2016-06-28

Young women from hereditary breast and ovarian cancer (HBOC) families face a series of medical decisions regarding their cancer risk management and integrating this information into their life planning. This presents unique medical and psychosocial challenges that exist without comprehensive intervention. To help lay the groundwork for intervention, we conducted a qualitative study among young women from HBOC families (N = 12; Mean age = 22) and cancer genetic counselors (N = 12) to explicate domains most critical to caring for this population. Women and counselors were interviewed by telephone. The predominant interview themes included preventative care planning and risk management, decision making around the pros and cons of cancer risk assessment, medical management, and psychosocial stresses experienced. Young women endorsed psychosocial stress significantly more frequently than did counselors. Both groups noted the short- and long-term decision making challenges and the support and conflict engendered among familial relationships. Our results suggest young women value the support they receive from their families and their genetic counselors, but additional, external supports are needed to facilitate adaptation to HBOC risk. In feedback interviews focused on intervention planning with a subset of these young women (N = 9), they endorsed the predominant interview themes discovered as important intervention content, a structure that would balance discussion of medical information and psychosocial skill-building that could be tailored to the young women's needs, and delivery by trained peers familiar with HBOC risk.

Understanding the Needs of Young Women Regarding Breast Cancer Risk Assessment and Genetic Testing: Convergence and Divergence among Patient-Counselor Perceptions and the Promise of Peer Support

PubMed Central

Evans, Chalanda; Hamilton, Rebekah J.; Tercyak, Kenneth P.; Peshkin, Beth N.; Rabemananjara, Kantoniony; Isaacs, Claudine; O’Neill, Suzanne C.

2016-01-01

Young women from hereditary breast and ovarian cancer (HBOC) families face a series of medical decisions regarding their cancer risk management and integrating this information into their life planning. This presents unique medical and psychosocial challenges that exist without comprehensive intervention. To help lay the groundwork for intervention, we conducted a qualitative study among young women from HBOC families (N = 12; Mean age = 22) and cancer genetic counselors (N = 12) to explicate domains most critical to caring for this population. Women and counselors were interviewed by telephone. The predominant interview themes included preventative care planning and risk management, decision making around the pros and cons of cancer risk assessment, medical management, and psychosocial stresses experienced. Young women endorsed psychosocial stress significantly more frequently than did counselors. Both groups noted the short- and long-term decision making challenges and the support and conflict engendered among familial relationships. Our results suggest young women value the support they receive from their families and their genetic counselors, but additional, external supports are needed to facilitate adaptation to HBOC risk. In feedback interviews focused on intervention planning with a subset of these young women (N = 9), they endorsed the predominant interview themes discovered as important intervention content, a structure that would balance discussion of medical information and psychosocial skill-building that could be tailored to the young women’s needs, and delivery by trained peers familiar with HBOC risk. PMID:27417623

The Adolescent and Young Adult with Cancer: A Developmental Life Course Perspective.

PubMed

Docherty, Sharron L; Kayle, Mariam; Maslow, Gary R; Santacroce, Sheila Judge

2015-08-01

Using a Life Course Health Development framework, this article summarizes what is known about the impact of cancer and its treatment on the biopsychosocial world of the adolescent and young adult. Published peer reviewed literature, web-based resources, and cancer-related professional organizations' resources. Adolescents and young adults with cancer, between 15 and 29 years of age, have emerged as a distinct group requiring specialized care. The demands of cancer and its treatment are often directly counter to the developmental needs of this age group and often alter those life course experiences that contribute to resilience, thriving, and flourishing. Providing high-quality care to this age group requires a depth of understanding of the complexity of factors that merge to influence the developmental life course. Copyright © 2015 Elsevier Inc. All rights reserved.

Cancer-Related Worry and Physical Well-Being in the Context of Perceived Stress in Young Adults with Testicular Cancer.

PubMed

Darabos, Katie; Hoyt, Michael A

2017-06-01

Uncertainty associated with cancer can foster future-focused worry and ultimately diminish physical well-being, especially among young adult survivors. Stress perceptions might exacerbate the association of worry and physical well-being. Young adults with testicular cancer (N = 171) completed measures of physical well-being, perceived stress, and future cancer-related worry. Perceived stress and future worry were both negatively associated with physical well-being. Perceived stress moderated the relationship; more perceived stress was related to lower physical well-being in those with high worry. Interventions aimed at worry reduction might benefit from reducing global stress perceptions.

"Christmas Balls": a Christmas carol by the adolescent cancer patients of the Milan Youth Project.

PubMed

Ferrari, Andrea; Signoroni, Stefano; Silva, Matteo; Gaggiotti, Paola; Veneroni, Laura; Magni, Chiara; Casanova, Michela; Chiaravalli, Stefano; Capelletti, Mirko; Lapidari, Pietro; Clerici, Carlo Alfredo; Massimino, Maura

2017-03-24

The Youth Project is a program developed at the Pediatric Oncology Unit at the Istituto Nazionale Tumori in Milan, dedicated to adolescents and young adults with cancer. Among its various goals, the Youth Project organizes structured creative activities with the support of professionals, with the objective of offering young people a new way to express their hopes and fears. This article describes a project centered around music: patients created a Christmas carol with the help of musicians and authors. The adolescents explained with their own words the meaning of the lyrics, telling the story of a Christmas spent in a cancer hospital ward.

The etiologic spectrum of head and neck squamous cell carcinoma in young patients

PubMed Central

Liu, Xin; Gao, Xiao-lei; Liang, Xin-hua; Tang, Ya-ling

2016-01-01

Head and neck squamous cell carcinoma (HNSCC), accounting for more than 80% in head and neck malignancies, kills thousands of people a year in the world. Despite most of the patients are more than 45, and the occurrences of head and neck cancer shows a decreasing trend; however, horribly, the incidences of the patients under 45 years old is steadily increasing. Hence, it's of vital importance to get more pathogen information about risk factors of HNSCC in children and young adults. This review outlines the etiologic spectrum of HNSCC, especially oral/oropharyngeal squamous cell carcinoma, in patients under 45 years of age. PMID:27528225

78 FR 18601 - Advisory Committee on Breast Cancer in Young Women (ACBCYW)

Federal Register 2010, 2011, 2012, 2013, 2014

2013-03-27

... Committee on Breast Cancer in Young Women (ACBCYW) In accordance with section 10(a)(2) of the Federal... ACBCYW meeting Web page to register for this meeting: http://www.cdc.gov/cancer/breast/what_cdc_is_doing... evidence-based activities designed to prevent breast cancer (particularly among those at heightened risk...

The importance of assessing priorities of reproductive health concerns among adolescent and young adult patients with cancer.

PubMed

Murphy, Devin; Klosky, James L; Reed, Damon R; Termuhlen, Amanda M; Shannon, Susan V; Quinn, Gwendolyn P

2015-08-01

Visions for the future are a normal developmental process for adolescents and young adults (AYAs) with and without cancer, and these visions often include expectations of sexual and romantic relationships. AYA cancer survivors indicate reproductive health is an issue of great importance and more attention is needed in the health care setting throughout the cancer experience, beginning at diagnosis. Various practice guidelines are predominately focused on fertility; are intended to influence survivorship care plans; and do not encompass the broad scope of reproductive health that includes romantic partnering, friendships, body image, sexuality, sexual identity, fertility, contraception, and more. Although interventions to reduce reproductive health-related sequelae from treatment are best approached as an evolving process, practitioners are not certain of the priorities of these various reproductive health content areas. Strategies incongruent with the reproductive health priorities of AYAs will likely thwart adequate follow-up care and foster feelings of isolation from the treatment team. Research is needed to identify these priorities and ensure discussions of diverse content areas. This review explored various domains of reproductive health and emphasized how understanding the priorities of the AYA cancer cohort will guide future models of care. © 2015 American Cancer Society.

A randomized trial of a Facebook-based physical activity intervention for young adult cancer survivors.

PubMed

Valle, Carmina G; Tate, Deborah F; Mayer, Deborah K; Allicock, Marlyn; Cai, Jianwen

2013-09-01

Over half of young adult cancer survivors do not meet physical activity (PA) guidelines. PA interventions can enhance health and quality of life among young adult cancer survivors. However, few exercise interventions have been designed and tested in this population. This study evaluated the feasibility and preliminary efficacy of a 12-week, Facebook-based intervention (FITNET) aimed at increasing moderate-to-vigorous intensity PA compared with a Facebook-based self-help comparison (SC) condition. Young adult cancer survivors (n = 86) were randomly assigned to the FITNET or SC group. All participants were asked to complete self-administered online questionnaires at baseline and after 12 weeks. Seventy-seven percent of participants completed postintervention assessments, and most participants reported using intervention components as intended. Participants in both groups would recommend the program to other young adult cancer survivors (FITNET, 46.9 vs. SC, 61.8 %; p = 0.225). Over 12 weeks, both groups increased self-reported weekly minutes of moderate-to-vigorous PA (FITNET, 67 min/week (p = 0.009) vs. SC, 46 min/week (p = 0.045)), with no significant difference between groups. Increases in light PA were 135 min/week greater in the FITNET group relative to the SC group (p = 0.032), and the FITNET group reported significant weight loss over time (-2.1 kg, p = 0.004; p = 0.083 between groups). Facebook-based intervention approaches demonstrated potential for increasing PA in young adult cancer survivors. Social networking sites may be a feasible way for young adult cancer survivors to receive health information and support to promote PA and healthy behaviors.

Cancer incidence in English children, adolescents and young people: past trends and projections to 2030

PubMed Central

Pesola, Francesca; Ferlay, Jacques; Sasieni, Peter

2017-01-01

Background: Estimating the future incidence of cancer is important to establish sufficient service provision, however, work in this area is limited for cancer in children, adolescents, and young adults (aged 0–24). Methods: Age-period-cohort models were applied to cancer incidence rates for the period 1971–2013 in England. This allowed us to extrapolate past trends to 2030. We used the appropriate cancer classification developed for cancers in children and young adults, which are analysed as two separate groups to capture inherent differences. Results: The data set consisted of 119 485 records (55% among 15+ years group). Overall, cancer rates have increased over time and are expected to continue to rise into the future. Of particular interest is the increase in rates of germ cell tumours (in males) and carcinomas (in females) in young adults, since their rates are projected to further increase over time. Conclusions: The estimated future incidence rates provide a baseline for different cancer subtypes, which will allow policymakers to develop a contingency plan to deal with future demands. PMID:29096400

Young people's beliefs about the risk of bowel cancer and its link with physical activity.

PubMed

Newby, Katie V; Cook, Chloe; Meisel, Susanne F; Webb, Thomas L; Fisher, Bernadette; Fisher, Abi

2017-09-01

The primary objective was to explore young people's risk appraisals of bowel cancer, including whether they had a coherent understanding of the protective effects of physical activity (PA). A secondary objective was to examine whether the illness risk representations (IRRs) framework could be used to understand beliefs underlying bowel cancer risk appraisals. Qualitative. Framework analysis of semi-structured interviews with 19 people aged 14-17 years. Participants judged their risk of getting bowel cancer as low. This was based on a lack of family history of cancer and their current lifestyle behaviours, which were viewed as having a protective effect, or because they planned on making change to their lifestyle in the future when disease risk became more relevant. Participants were not aware of, and struggled to understand, the link between PA and bowel cancer. They also lacked knowledge of the effects of, or treatments for, bowel cancer. Beliefs underlying judgements about the risk of bowel cancer fitted the IRR framework reasonably well. The present research suggests that interventions designed to increase PA with a view to reducing the risk of bowel cancer should aim to make the future risk of bowel cancer feel more tangible, help young people to understand the full range of consequences, explain how and why preventative behaviours such as PA are effective in reducing risk, and emphasize that the typical late presentation of symptoms, and therefore investigation by health care services, reduces treatability. Statement of contribution What is already known on this subject? Physical activity (PA) performed throughout the lifespan can have a protective effect on bowel cancer, but levels of PA are low among young people. Changing beliefs about the risk of getting bowel cancer may be a useful strategy in motivating PA. What does this study add? Increased understanding of how young people think about bowel cancer and the relationship between PA and cancer

Young People with Cancer: A Handbook for Parents.

ERIC Educational Resources Information Center

National Cancer Inst. (NIH), Bethesda, MD.

The book presents information for parents of children and young adults with cancer. The first section outlines aspects of the disease itself and considers characteristics of leukemia and solid tumors. Hospitalization and such treatments as chemotherapy and radiation are considered. Common health issues (including diet, dental care, bleeding, and…

Higher Lung Cancer Incidence in Young Women Than Young Men in the United States.

PubMed

Jemal, Ahmedin; Miller, Kimberly D; Ma, Jiemin; Siegel, Rebecca L; Fedewa, Stacey A; Islami, Farhad; Devesa, Susan S; Thun, Michael J

2018-05-24

Previous studies showed a higher incidence of lung cancer among young women than among young men in the United States. Whether this pattern has continued in contemporary birth cohorts and, if so, whether it can be fully explained by sex differences in smoking behaviors are unknown. We examined the nationwide population-based incidence of lung cancer according to sex, race or ethnic group, age group (30 to 34, 35 to 39, 40 to 44, 45 to 49, and 50 to 54 years), year of birth (1945 to 1980), and calendar period of diagnosis (1995-1999, 2000-2004, 2005-2009, and 2010-2014), and we calculated female-to-male incidence rate ratios. We also examined the prevalence of cigarette smoking, using data from the National Health Interview Survey from 1970 to 2016. Over the past two decades, the age-specific incidence of lung cancer has generally decreased among both men and women 30 to 54 years of age in all races and ethnic groups, but the declines among men have been steeper. Consequently, among non-Hispanic whites, the female-to-male incidence rate ratios increased, exceeding 1.0 in the age groups of 30 to 34, 35 to 39, 40 to 44, and 45 to 49 years. For example, the female-to-male incidence rate ratio among whites 40 to 44 years of age increased from 0.88 (95% confidence interval [CI], 0.84 to 0.92) during the 1995-1999 period to 1.17 (95% CI, 1.11 to 1.23) during the 2010-2014 period. The crossover in sex-specific rates occurred among non-Hispanic whites born since 1965. Sex-specific incidence rates converged among non-Hispanic blacks, Hispanics, and non-Hispanic Asians and Pacific Islanders but crossed over from a higher incidence among men to a higher incidence among women only among Hispanics. The prevalence of cigarette smoking among women born since 1965 has approached, but generally not exceeded, the prevalence among men. The patterns of historically higher incidence rates of lung cancer among men than among women have reversed among non-Hispanic whites and Hispanics

Assessing information and service needs of young adults with cancer at a single institution: the importance of information on cancer diagnosis, fertility preservation, diet, and exercise.

PubMed

Gupta, Abha A; Edelstein, Kim; Albert-Green, Alisha; D'Agostino, Norma

2013-09-01

Young adults (YA) with cancer have unique psychosocial and medical needs. The objective of this study was to identify information and service needs important to YA cancer patients. A supportive care needs survey was administered to ambulatory patients (cancer, current treatment status, and marital status on the importance of these factors was explored using ANOVA. Median age of 243 respondents was 28 years (range 17-35); 61% male. The most common diagnoses were: lymphoma (28%), leukemia (19%), testis (16%), CNS (9.5%), and sarcoma (8.6%). Forty percent were currently receiving treatment; the majority were single/never married (67%). Thirty-eight percent of respondents felt it was important or very important to receive care in a dedicated unit with other young people. More than 80% rated the following items at least 8/10 in importance: information on their specific malignancy (treatment, risk of recurrence), effects of treatment on fertility, information on maintaining a healthy diet, and exercise/physical fitness during cancer treatment. Women were more likely to consider information/service needs more important than men. YA's have clear supportive care preferences and needs. Developing programs that incorporate the services identified as important should improve quality of life, psychosocial adjustment, and other outcomes during and after cancer therapy.

Ovarian Conservation and Overall Survival in Young Women With Early-Stage Cervical Cancer.

PubMed

Matsuo, Koji; Machida, Hiroko; Shoupe, Donna; Melamed, Alexander; Muderspach, Laila I; Roman, Lynda D; Wright, Jason D

2017-01-01

To identify predictors of ovarian conservation at hysterectomy and to examine the association of ovarian conservation and survival of young women with early-stage cervical cancer. This is a retrospective cohort study using the Surveillance, Epidemiology, and End Results Program to identify hysterectomy-based surgically treated patients with stage I cervical cancer diagnosed between 1983 and 2012 (N=16,511). Multivariable models were used to identify independent factors associated with ovarian conservation. Among the subgroup of 9,419 women younger than 50 years of age with stage I disease, survival outcomes and causes of death were examined for 3,908 (41.5%) women who underwent ovarian conservation at hysterectomy without radiotherapy. On multivariable analysis, age younger than 50 years, stage IA disease, and squamous histology were independent factors associated with ovarian conservation (all, P<.001). Among 5,526 women younger than 50 years of age with stage IA disease who underwent hysterectomy without radiotherapy, overall survival was significantly higher in patients undergoing ovarian conservation than in those undergoing oophorectomy (20-year rate, 93.5% compared with 86.8%, P<.001); cervical cancer-specific survival was similar between the patients who underwent ovarian conservation and those who underwent oophorectomy (98.8% compared with 97.8%, P=.12). On multivariable analysis, ovarian conservation remained an independent prognostic factor for improved overall survival (adjusted hazard ratio 0.63, 95% confidence interval [CI] 0.49-0.82, P=.001) and was independently associated with lower cumulative risks of death resulting from cardiovascular disease (20-year cumulative rate, 1.2% compared with 3.3%, adjusted hazard ratio 0.47, 95% CI 0.26-0.86, P=.014) and other chronic disease (0.5% compared with 1.4%, adjusted hazard ratio 0.24, 95% CI 0.09-0.65, P=.005) compared with oophorectomy. Both cervical cancer-specific survival (20-year rate, 93.1% compared

Indoor Tanning, Skin Cancer and the Young Female Patient: A Review of the Literature.

PubMed

Friedman, Blake; English, Joseph C; Ferris, Laura K

2015-08-01

Young, non-Hispanic white females represent the population most likely to use indoor tanning facilities. This population may be at increased risk of skin cancer as recent meta-analyses support a strong association between cutaneous malignancy and indoor tanning. Public perception of the purported health benefits of indoor tanning may be partially to blame for the popularity of tanning salons as a desire to prepare skin prior to sun exposure is among the most commonly cited motivations for indoor tanning. Improving education and counseling to address misconceptions regarding tanning safety will require the participation of healthcare providers for both physical and psychological screenings as well as for information dissemination. This review presents the association between tanning bed use and skin cancer, biological effects of UV radiation exposure, UV burden associated with tanning devices, public perception of tanning, demographic and psychological profile of indoor tanners, and current legislation regulating tanning bed use. Copyright © 2015 North American Society for Pediatric and Adolescent Gynecology. Published by Elsevier Inc. All rights reserved.

The prevalence of BRCA1 and BRCA2 mutations among young Mexican women with triple-negative breast cancer

PubMed Central

Villarreal-Garza, C.; Weitzel, J. N.; Llacuachaqui, M.; Sifuentes, E.; Magallanes-Hoyos, M. C.; Gallardo, L.; Alvarez-Gómez, R. M.; Herzog, J.; Castillo, D.; Royer, R.; Akbari, Mohammad; Lara-Medina, F.; Herrera, L. A.; Mohar, A.

2015-01-01

Various guidelines recommend that women with triple-negative breast cancer should be tested for BRCA1 mutations, but the prevalence of mutations may vary with ethnic group and with geographic region, and the optimal cutoff age for testing has not been established. We estimated the frequencies of BRCA1 and BRCA2 (BRCA) mutations among 190 women with triple-negative breast cancer, unselected for family history, diagnosed at age 50 or less at a single hospital in Mexico City. Patients were screened for 115 recurrent BRCA mutations, which have been reported previously in women of Hispanic origin, including a common large rearrangement Mexican founder mutation (BRCA1 ex9-12del). A BRCA mutation was detected in 44 of 190 patients with triple-negative breast cancer (23 %). Forty-three mutations were found in BRCA1 and one mutation was found in BRCA2. Seven different mutations accounted for 39 patients (89 % of the total mutations). The Mexican founder mutation (BRCA1 ex9-12del) was found 18 times and accounted for 41 % of all mutations detected. There is a high prevalence of BRCA1 mutations among young triple-negative breast cancer patients in Mexico. Women with triple-negative breast cancer in Mexico should be screened for mutations in BRCA1. PMID:25716084

Effects of the Affordable Care Act on Young Women With Gynecologic Cancers.

PubMed

Smith, Anna Jo Bodurtha; Fader, Amanda N

2018-06-01

To evaluate the effects of the dependent coverage mandate of the 2010 Affordable Care Act (ACA) on insurance status, stage at diagnosis, and receipt of fertility-sparing treatment among young women with gynecologic cancer. We used a difference-in-differences design to assess insurance status, stage at diagnosis (stage I-II vs III-IV), and receipt of fertility-spearing treatment before and after the 2010 ACA among young women aged 21-26 years vs women aged 27-35 years. We used the National Cancer Database with the 2004-2009 surveys as the pre-ACA years and the 2011-2014 surveys as the post-ACA years. Women with uterine, cervical, ovarian, vulvar, or vaginal cancer were included. We analyzed outcomes for women overall and by cancer and insurance type, adjusting for race, nonrural area, and area-level household income and education level. A total of 1,912 gynecologic cancer cases pre-ACA and 2,059 post-ACA were identified for women aged 21-26 years vs 9,782 cases pre-ACA and 10,456 post-ACA for women aged 27-35 years. The ACA was associated with increased insurance (difference in differences 2.2%, 95% CI -4.0 to 0.1, P=.04) for young women aged 21-26 years vs women aged 27-35 years and with a significant improvement in early stage at cancer diagnosis (difference in differences 3.6%, 95% CI 0.4-6.9, P=.03) for women aged 21-26 years. Receipt of fertility-sparing treatment increased for women in both age groups post-ACA (P for trend=.004 for women aged 21-26 years and .001 for women aged 27-35 years); there was no significant difference in differences between age groups. Privately insured women were more likely to be diagnosed at an early stage and receive fertility-sparing treatment than publicly insured or uninsured women throughout the study period (P<.001). Under the ACA's dependent coverage mandate, young women with gynecologic cancer were more likely to be insured and diagnosed at an early stage of disease.

Genetics of triple-negative breast cancer: Implications for patient care.

PubMed

Afghahi, Anosheh; Telli, Melinda L; Kurian, Allison W

Patients with triple-negative breast cancer (TNBC), defined as lacking expression of the estrogen and progesterone receptors (ER/PR) and amplification of the HER2 oncogene, often have a more aggressive disease course than do patients with hormone receptor-positive breast cancer, including higher rates of visceral and central nervous system metastases, early cancer recurrences and deaths. Triple-negative breast cancer is associated with a young age at diagnosis and both African and Ashkenazi Jewish ancestry, the latter due to three common founder mutations in the highly penetrant cancer susceptibility genes BRCA1 and BRCA2 (BRCA1/2). In the past decade, there has been a surge both in genetic testing technology and in patient access to such testing. Advances in genetic testing have enabled more rapid and less expensive commercial sequencing than could be imagined only a few years ago. Massively parallel, next-generation sequencing allows the simultaneous analysis of many different genes. Studies of TNBC patients in the current era have revealed associations of TNBC with mutations in several moderate penetrance breast cancer susceptibility genes, including PALB2, BARD1, BRIP1, RAD51C and RAD51D. Interestingly, many of these genes, like BRCA1/2, are involved in homologous recombination DNA double-stranded repair. In this review, we summarize the current understanding of pathogenic germline gene mutations associated with TNBC and the early detection and prevention strategies for women at risk of developing this high-risk breast cancer subtype. Furthermore, we discuss recent the advances in targeted therapies for TNBC patients with a hereditary predisposition, including the role of poly (ADP-ribose) polymerase (PARP) inhibitors in BRCA1/2 mutation-associated breast cancers. Copyright © 2016 Elsevier Inc. All rights reserved.

Improving Access to Standardized Fertility Preservation Information for Older Adolescents and Young Adults with Cancer: Using a User-Centered Approach with Young Adult Patients, Survivors, and Partners to Refine Fertility Knowledge Transfer.

PubMed

Tam, Seline; Puri, Natasha; Stephens, Derek; Mitchell, Laura; Giuliani, Meredith; Papadakos, Janet; Gupta, Abha A

2018-06-01

Adolescent and young adult (AYA) cancer patients under 40 should be made aware of their fertility risks and preservation options throughout their care. However, discussions on fertility preservation (FP) do not routinely occur. With a dearth of FP resources, oncology providers may lack knowledge around FP. Thus, informational needs can be unmet, leading to anxiety and distress in patients. Provision of pertinent and timely information can help patients cope better with their diagnosis. FP pamphlets were developed for men and women with cancer. A cross-sectional in-house survey, using convenience sampling, evaluated the pamphlets' effectiveness and measured ease of understanding, acceptability, and perceived utility. Patients and partners were also asked to provide recommendations and complete the Short Test of Functional Health Literacy in Adults (S-TOFHLA) measuring health literacy level. This helps determine if health literacy influences perception of pamphlet effectiveness. All participants (n = 56) reviewed both pamphlets. Fifty-four participants (96 %) found the pamphlet for men useful, while 29 participants (52 %) improved their male fertility knowledge. The pamphlet for women was useful for 52 participants (93 %) and improved knowledge in 35 (63 %) of them. Although the majority of participants had adequate health literacy (98 %), there was insufficient sample diversity to determine if health literacy influenced the pamphlet's effectiveness. Participants indicated preference in receiving verbal (73 %) and written (66 %) information over watching videos or in-class education. They recommended including fertility clinics, financial resources, and statistics in the brochures. These FP pamphlets were concluded as effective in supporting patients in making FP decisions.

Freezing oocytes or embryos after controlled ovarian hyperstimulation in cancer patients: the state of the art.

PubMed

Bénard, Julie; Duros, Solène; El Hachem, Hady; Sonigo, Charlotte; Sifer, Christophe; Grynberg, Michaël

2016-07-01

Quality of life of young cancer survivors has become a major issue. However, anticancer therapies can have a detrimental impact on fertility. It is now well-established that all patients should receive information about the fertility risks associated with their cancer treatment and the fertility preservation options available. Currently, oocyte or embryo banking after controlled ovarian hyperstimulation represents the most effective method for preserving female fertility. Over the past years innovative protocols of ovarian stimulation have been developed to enable cancer patients to undergo oocyte or embryo cryopreservation irrespective of the phase of the cycle or without exogenous follicle-stimulating hormone-related increase in serum estradiol levels. The present article reviews the different protocols of ovarian hyperstimulation for cancer patients, candidates for fertility preservation.

Family History in Young Patients With Stroke.

PubMed

Thijs, Vincent; Grittner, Ulrike; Dichgans, Martin; Enzinger, Christian; Fazekas, Franz; Giese, Anne-Katrin; Kessler, Christof; Kolodny, Edwin; Kropp, Peter; Martus, Peter; Norrving, Bo; Ringelstein, Erich Bernd; Rothwell, Peter M; Schmidt, Reinhold; Tanislav, Christian; Tatlisumak, Turgut; von Sarnowski, Bettina; Rolfs, Arndt

2015-07-01

Family history of stroke is an established risk factor for stroke. We evaluated whether family history of stroke predisposed to certain stroke subtypes and whether it differed by sex in young patients with stroke. We used data from the Stroke in Fabry Patients study, a large prospective, hospital-based, screening study for Fabry disease in young patients (aged <55 years) with stroke in whom cardiovascular risk factors and family history of stroke were obtained and detailed stroke subtyping was performed. A family history of stroke was present in 1578 of 4232 transient ischemic attack and ischemic stroke patients (37.3%). Female patients more often had a history of stroke in the maternal lineage (P=0.027) than in the paternal lineage. There was no association with stroke subtype according to Trial of Org 10172 in Acute Stroke Treatment nor with the presence of white matter disease on brain imaging. Patients with dissection less frequently reported a family history of stroke (30.4% versus 36.3%; P=0.018). Patients with a parental history of stroke more commonly had siblings with stroke (3.6% versus 2.6%; P=0.047). Although present in about a third of patients, a family history of stroke is not specifically related to stroke pathogenic subtypes in patients with young stroke. Young women with stroke more often report stroke in the maternal lineage. URL: http://www.clinicaltrials.gov. Unique identifier: NCT00414583. © 2015 American Heart Association, Inc.

The cost of cancer: a retrospective analysis of the financial impact of cancer on young adults.

PubMed

Landwehr, Michelle S; Watson, Samantha E; Macpherson, Catherine F; Novak, Katherine A; Johnson, Rebecca H

2016-05-01

Young adult cancer survivors (YAs) are confronted with immense financial challenges in the wake of their treatment. Medical bills and loss of savings may cause YAs to forgo recommended medications or follow-up appointments. Young survivors with financial concerns also report depression, stress and anxiety. The Samfund is a national nonprofit organization that provides financial support to YAs post-treatment. To quantify the financial burden of cancer in YAs, a retrospective analysis was performed of data collected from Samfund grant applications of 334 YA cancer survivors. Grants were awarded between 2007 and 2013 and grant recipients were consented electronically in 2014 for retrospective data analysis. Recipients ranged from 19 to 39 years of age at the time of their grant applications. Descriptive statistics were calculated and compared to the Medical Expenditure Panel Survey (MEPS) and U.S. census data on age-matched peers. Financial indicators of YA cancer survivors are worse in many domains than those of age-matched controls. Furthermore, YA survivors in their 30s report more perilous prefunding financial situations than younger grant recipients. Cancer has a devastating and age-specific impact on the finances of YAs. Philanthropic grants from the cancer support community, in conjunction with healthcare policy reforms, have the potential to break the cycle of financial need and help YAs move forward with their lives after cancer treatment. © 2016 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.

Being normal, not vulnerable: case study of a 2-day residential programme for young adults with cancer.

PubMed

Martins, Ana; Taylor, Rachel M; Morgan, Sue; Fern, Lorna A

2017-07-13

To identify and describe the outcomes and facilitating processes of participation at 'Find Your Sense of Tumour' (FYSOT), a 2-day residential programme/conference for young people with cancer, from the perspective of professionals attending and patient representatives. Case study. Observation of the 'Find Your Sense of Tumour' over 18s residential programme and face-to-face interviews in hospital and phone interviews. Twenty-six participants - 19 professionals from hospitals across the UK who accompanied young people to FYSOT; 3 programme organisers; and 4 young people from the programme steering committee. Participant observation and semistructured interviews. This process evaluation of an educational, social and peer-to-peer support residential weekend for young people with cancer identified key outcomes for young people - positive attitudes (increased sociability, confidence), belonging (feeling accepted, understood), recreation (trying new activities, having fun) and increased knowledge (balance between educational talks and interactions with other young people); and three overarching facilitating processes - being with other young people, the professionals accompanying young people to the event for support and guidance, and the conference/intentional programming. Being in a safe, relaxed and fun environment with other young people facilitates the development of peer support networks and increases young people's confidence and knowledge. Although the focus of the residential programme is on young people, interviewees acknowledge the impact of attending on professionals' motivation, learning and changes in practice. This study has extended our understanding of the role of residential programmes by identifying outcomes and facilitating mechanisms. We have shown that residential programmes have an important role in providing participants with social, emotional and informational support, as well as play an important role in redefining normality. Longitudinal

Partner support and anxiety in young women with breast cancer.

PubMed

Borstelmann, Nancy A; Rosenberg, Shoshana M; Ruddy, Kathryn J; Tamimi, Rulla M; Gelber, Shari; Schapira, Lidia; Come, Steven; Borges, Virginia; Morgan, Evan; Partridge, Ann H

2015-12-01

Using a large prospective cohort of women age 40 or younger diagnosed with breast cancer, we examined the relationship between perceived partner support and anxiety. Six hundred seventy-five young women with breast cancer Stages I-III, median age 36, completed a self-report baseline questionnaire. Perceived partner support was assessed using items extracted from the marital subscale of the Cancer Rehabilitation Evaluation System; generalized social support was assessed with the Medical Outcomes Study-Social Support Survey. Anxiety was measured using the anxiety subscale of the Hospital Anxiety and Depression Scale. Multivariable logistic regression analyses evaluated the association between partner support, other sociodemographic factors, and anxiety. Mean age at diagnosis was 35.4 years. Fourteen percent of the women were not partnered, and among those who were partnered or in a significant relationship, 20% were categorized as unsupported. In univariate and multivariable analysis adjusting for sociodemographic factors, women in an unsupported-partnered relationship had higher odds of anxiety symptoms compared with women in a supported-partnered relationship. Young age and being financially insecure were also both independently associated with anxiety. Our findings suggest that partner support may play a key role in a young woman's adjustment to a serious stressor such as breast cancer. In addition, younger age increases vulnerability to anxiety as does struggling with finances. Because supportive efforts of a partner have potential to protect against the impact of stress, interventions to enhance partner support and reduce anxiety might be beneficial to address challenges experienced as a couple in this setting. Copyright © 2015 John Wiley & Sons, Ltd.

Cardiovascular disease incidence in adolescent and young adult cancer survivors: a retrospective cohort study.

PubMed

Keegan, Theresa H M; Kushi, Lawrence H; Li, Qian; Brunson, Ann; Chawla, X; Chew, Helen K; Malogolowkin, Marcio; Wun, Ted

2018-06-01

Few population-based studies have focused on cardiovascular disease (CVD) risk in adolescent and young adult (AYA; 15-39 years) cancer survivors and none have considered whether CVD risk differs by sociodemographic factors. Analyses focused on 79,176 AYA patients diagnosed with 14 first primary cancers in 1996-2012 and surviving > 2 years after diagnosis with follow-up through 2014. Data were obtained from the California Cancer Registry and State hospital discharge data. CVD included coronary artery disease, heart failure, and stroke. The cumulative incidence of developing CVD accounted for the competing risk of death. Multivariable Cox proportional hazards regression evaluated factors associated with CVD and the impact of CVD on mortality. Overall, 2249 (2.8%) patients developed CVD. Survivors of central nervous system cancer (7.3%), acute lymphoid leukemia (6.9%), acute myeloid leukemia (6.8%), and non-Hodgkin lymphoma (4.1%) had the highest 10-year CVD incidence. In multivariable models, African-Americans (hazard ratio (HR) = 1.55, 95% confidence interval (CI) = 1.33-1.81; versus non-Hispanic Whites), those with public/no health insurance (HR = 1.78, 95% CI = 1.61-1.96; versus private) and those who resided in lower socioeconomic status neighborhoods had a higher CVD risk. These sociodemographic differences in CVD incidence were apparent across most cancer sites. The risk of death was increased by eightfold or higher among AYAs who developed CVD. While cancer therapies are known to increase the risk of CVD, this study additionally shows that CVD risk varies by sociodemographic factors. The identification and mitigation of CVD risk factors in these subgroups may improve long-term patient outcomes.

For Many Young Cancer Survivors, Late Effects Pose Lasting Problems

Cancer.gov

Many survivors of adolescent and young adult cancers are unaware of or underestimate their heightened risk for late health effects. Efforts are underway to raise awareness and increase monitoring and surveillance.

Occurrence of breast cancer subtypes in adolescent and young adult women

PubMed Central

2012-01-01

Introduction Breast cancers are increasingly recognized as heterogeneous based on expression of receptors for estrogen (ER), progesterone (PR), and human epidermal growth factor receptor 2 (HER2). Triple-negative tumors (ER-/PR-/HER2-) have been reported to be more common among younger women, but occurrence of the spectrum of breast cancer subtypes in adolescent and young adult (AYA) women aged between 15 and 39 years is otherwise poorly understood. Methods Data regarding all 5,605 AYA breast cancers diagnosed in California during the period 2005 to 2009, including ER and PR status (referred to jointly as hormone receptor (HR) status) and HER2 status, was obtained from the population-based California Cancer Registry. Incidence rates were calculated by subtype (triple-negative; HR+/HER2-; HR+/HER2+; HR-/HER2+), and logistic regression was used to evaluate differences in subtype characteristics by age group. Results AYAs had higher proportions of HR+/HER2+, triple-negative and HR-/HER2+ breast cancer subtypes and higher proportions of patients of non-White race/ethnicity than did older women. AYAs also were more likely to be diagnosed with stage III/IV disease and high-grade tumors than were older women. Rates of HR+/HER2- and triple-negative subtypes in AYAs varied substantially by race/ethnicity. Conclusions The distribution of breast cancer subtypes among AYAs varies from that observed in older women, and varies further by race/ethnicity. Observed subtype distributions may explain the poorer breast cancer survival previously observed among AYAs. PMID:22452927

Young Singaporean women's knowledge of cervical cancer and pap smear screening: a descriptive study.

PubMed

Shea, Juanna; Klainin-Yobas, Piyanee; Mackey, Sandra

2013-12-01

To assess the knowledge of young female Singaporeans regarding cervical cancer and pap smear, the intention to participate in pap smear and whether there is any relationship between knowledge and intention to participate in pap smear screening. While cervical cancer has poor prognosis in the later stages, pap smear is effective in identifying precancerous lesions, which are more treatable. Pap smear screening is available to women in Singapore, but its uptake is opportunistic. Research has shown that knowledge about pap smear and cervical cancer is important determinant of screening behaviour in Singaporean women. Cross-sectional descriptive correlational design was used. Three hundred and ninety-three young Singaporean undergraduates, aged 18-25 years, were recruited via convenience sampling from a local university over a four-month period. Data were collected through self-administered questionnaires. Majority of the participants knew the term 'pap smear' and its function. However, knowledge of the risk factors for cervical cancer was lacking among the young women. Knowledge of pap smear and cervical cancer had a weak correlation with the intention to go for the future uptake of pap smear. Educational efforts among younger Singaporean women on the knowledge of pap smear and risk factors for cervical cancer are needed. Improving knowledge will enable them to understand the importance of reducing exposure to risk factors and regular pap smear screening. All health professionals working with young Asian women should be prepared to educate and counsel young women to participate in pap smear screening according to current guidelines. In particular, knowledge of the age to attend the first pap smear and the recommended frequency for screening need to be targeted for health education. © 2013 John Wiley & Sons Ltd.

Subjective sexual well-being and sexual behavior in young women with breast cancer.

PubMed

Kedde, H; van de Wiel, H B M; Weijmar Schultz, W C M; Wijsen, C

2013-07-01

The aim of this study was to systematically describe the nature and context of subjective sexual well-being and sexual behavior in young women with breast cancer. Data on sexual behavior and subjective sexual well-being were collected through an internet questionnaire. Respondents were included if they had been diagnosed with breast cancer within the past 6 years and were currently 45 years of age or younger. Results were compared with a representative sample of the general Dutch population. In comparison with the general Dutch population of women, young women still undergoing breast cancer treatment are less sexually active and have a more negative experience of sexuality. While women who had already finished their treatment had more or less the same amount of sexual activity as the general Dutch population, there were still major differences in their experience of sexuality. Particularly strong associations were found between these women's sexual well-being in relation to their relationship satisfaction, and sexual interaction competence. In the wake of breast cancer treatment, young women have difficulty enjoying sex; it is evidently hard for them to resume their sex lives after breast cancer. In particular, women who find it hard to discuss sexual wishes and the possibilities and impossibilities associated with breast cancer with their partner experience negative consequences when trying to resume their sex lives.

Existential challenges in young people living with a cancer diagnosis.

PubMed

Odh, Ida; Löfving, Martina; Klaeson, Kicki

2016-10-01

In Sweden, approximately 500 people between the ages of 15 and 39 are diagnosed with cancer each year. When someone is diagnosed with a life-threatening disease, existential issues are easily triggered. Young adults are in a developmental phase of life and are exposed to an extra amount of pressure. The Internet and social media are a daily part of the life of young adults and the use of blogs is common. The aim of this study was to elucidate the theoretical framework of Yalom and his four 'givens' expressed in blogs written by young adults living with various cancer diagnoses in Sweden. This study used a qualitative method in which written stories from six public blogs were analysed using qualitative content analysis. The findings offer valuable in-depth knowledge about the existential issues in this population. The results can be described as a journey with several existential challenges and with death as an impending threat. The bloggers' awareness of their mortality was described as creating a sense of loss and existential loneliness. This study shows that young adults are empowered by the writing of blogs and that blogs can play an important part in increasing wellbeing and a sense of coherence within this population. Copyright © 2016 Elsevier Ltd. All rights reserved.

The elastic properties of cancerous skin: Poisson's ratio and Young's modulus.

PubMed

Tilleman, Tamara Raveh; Tilleman, Michael M; Neumann, Martino H A

2004-12-01

The physical properties of cancerous skin tissue have rarely been measured in either fresh or frozen skin specimens. Of interest are the elastic properties associated with the skin's ability to deform, i.e., to stretch and compress. Two constants--Young's modulus and Poisson's ratio--represent the basic elastic behavior pattern of any elastic material, including skin. The former relates the applied stress on a specimen to its deformation via Hooke's law, while the latter is the ratio between the axial and lateral strains. To investigate the elastic properties of cancerous skin tissue. For this purpose 23 consecutive cancerous tissue specimens prepared during Mohs micrographic surgery were analyzed. From these specimens we calculated the change in radial length (defined as the radial strain) and the change in tissue thickness (defined as axial strain). Based on the above two strains we determined a Poisson ratio of 0.43 +/- 0.12 and an average Young modulus of 52 KPa. Defining the elastic properties of cancerous skin may become the first step in turning elasticity into a clinical tool. Correlating these constants with the histopathologic features of a cancerous tissue can contribute an additional non-invasive, in vivo and in vitro diagnostic tool.

Lessons Learned from the Young Breast Cancer Survivorship Network.

PubMed

Gisiger-Camata, Silvia; Nolan, Timiya S; Vo, Jacqueline B; Bail, Jennifer R; Lewis, Kayla A; Meneses, Karen

2017-11-30

The Young Breast Cancer Survivors Network (Network) is an academic and community-based partnership dedicated to education, support, and networking. The Network used a multi-pronged approach via monthly support and networking, annual education seminars, website networking, and individual survivor consultation. Formative and summative evaluations were conducted using group survey and individual survivor interviews for monthly gatherings, annual education meetings, and individual consultation. Google Analytics was applied to evaluate website use. The Network began with 4 initial partnerships and grew to 38 in the period from 2011 to 2017. During this 5-year period, 5 annual meetings (598 attendees), 23 support and networking meetings (373), and 115 individual survivor consultations were conducted. The Network website had nearly 12,000 individual users and more than 25,000 page views. Lessons learned include active community engagement, survivor empowerment, capacity building, social media outreach, and network sustainability. The 5-year experiences with the Network demonstrated that a regional program dedicated to the education, support, networking, and needs of young breast cancer survivors and their families can become a vital part of cancer survivorship services in a community. Strong community support, engagement, and encouragement were vital components to sustain the program.

Teenage and Young Adult Cancer-Related Fatigue Is Prevalent, Distressing, and Neglected: It Is Time to Intervene. A Systematic Literature Review and Narrative Synthesis

PubMed Central

Booth, Sara; Grove, Sarah; Hatcher, Helen; Kuhn, Isla; Barclay, Stephen

2015-01-01

Purpose: Cancer-related fatigue in adults has been the subject of considerable recent research, confirming its importance as a common and debilitating symptom, and establishing a number of evidence-based interventions. There has, however, been limited focus on the fatigue suffered by teenagers and young adults with cancer, a group recognized as having unique experiences and developmental needs. We have undertaken a systematic review of the literature to provide a comprehensive overview of studies evaluating fatigue in this younger patient group in order to guide clinical practice and future research. Method: We searched MEDLINE, EMBASE, PsycINFO, and CINAHL databases for literature containing data relating to any aspect of fatigue in patients aged 13–24 at cancer diagnosis or treatment. Results: Sixty articles were identified, of which five described interventional clinical trials. Cancer-related fatigue was consistently one of the most prevalent, severe, and distressing symptoms, and it persisted long-term in survivors. It was associated with a number of factors, including poor sleep, depression, and chemotherapy. There was little evidence for the effectiveness of any intervention, although exercise appears to be the most promising. Importantly, fatigue was itself a significant barrier to physical and social activities. Conclusion: Cancer-related fatigue is a major and disabling problem in young cancer patients. Effective management strategies are needed to avoid compounding the dependence and social isolation of this vulnerable patient group. Future research should focus on providing evidence for the effectiveness of interventions, of which activity promotion and management of concurrent symptoms are the most promising. PMID:25852970

The lived experience of visual creative expression for young adult cancer survivors.

PubMed

Green, A R; Young, R A

2015-09-01

Engaging in visual creative expression individually and in a therapeutic setting can be a beneficial experience for cancer survivors; however, most research in this field has been conducted with older adults. The current study aimed to address this gap by utilising van Manen's hermeneutic phenomenology to answer the following question: 'What is the lived experience and meaning of visual creative expression for young adult cancer survivors?' Seven young adults, diagnosed with cancer between the ages of 18 and 35, were interviewed about creative expression experiences, which they engaged in individually and/or in a therapeutic setting. Data analysis included a thematic reflection, guided existential reflection, and a process of writing and rewriting. Two superordinate themes were identified: increased self-understanding and a healing experience. Seven subthemes were also identified and included the following: being in the flow, allowing the body to express itself, renegotiating control, changing one's environment, being seen, respect for art as a separate entity and giving back. Findings suggest that visual creative expression can be a meaningful experience for young adult cancer survivors, and that this experience espouses both similarities and differences from experiences of older adult survivors. Recommendations are made for future research, in addition to implications for practitioners. © 2014 John Wiley & Sons Ltd.

Cancer negatively impacts on sexual function in adolescents and young adults: The AYA HOPE study.

PubMed

Wettergren, Lena; Kent, Erin E; Mitchell, Sandra A; Zebrack, Brad; Lynch, Charles F; Rubenstein, Mara B; Keegan, Theresa H M; Wu, Xiao-Cheng; Parsons, Helen M; Smith, Ashley Wilder

2017-10-01

This cohort study examined the impact of cancer on sexual function and intimate relationships in adolescents and young adults (AYAs). We also explored factors predicting an increased likelihood that cancer had negatively affected these outcomes. Participants (n = 465, ages 15-39) in the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study completed two surveys approximately 1 and 2 years post-cancer diagnosis. We used multivariable logistic regression to determine factors negatively affected by perceptions of sexual function at 2 years post-diagnosis. Forty-nine percent of AYAs reported negative effects on sexual function at 1 year post-cancer diagnosis and 70% of those persisted in their negative perceptions 2 years after diagnosis. Those reporting a negative impact at 2 years were more likely to be 25 years or older (OR, 2.53; 95% CI, 1.44-4.42), currently not raising children (OR, 1.81; 95% CI, 1.06-3.08), experiencing fatigue (OR, 0.99; 95% CI, 0.975-0.998) and more likely to report that their diagnosis has had a negative effect on physical appearance (OR, 3.08; 95% CI, 1.97-4.81). Clinical factors and mental health were not significant predictors of negative effects on sexual function. Many AYAs diagnosed with cancer experience a persistent negative impact on sexual life up to 2 years following diagnosis. The findings underscore the need to develop routine protocols to assess sexual function in AYAs with cancer and to provide comprehensive management in the clinical setting. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

Frequency of Germline Mutations in 25 Cancer Susceptibility Genes in a Sequential Series of Patients With Breast Cancer

PubMed Central

Lin, Nancy U.; Kidd, John; Allen, Brian A.; Singh, Nanda; Wenstrup, Richard J.; Hartman, Anne-Renee; Winer, Eric P.; Garber, Judy E.

2016-01-01

Purpose Testing for germline mutations in BRCA1/2 is standard for select patients with breast cancer to guide clinical management. Next-generation sequencing (NGS) allows testing for mutations in additional breast cancer predisposition genes. The frequency of germline mutations detected by using NGS has been reported in patients with breast cancer who were referred for BRCA1/2 testing or with triple-negative breast cancer. We assessed the frequency and predictors of mutations in 25 cancer predisposition genes, including BRCA1/2, in a sequential series of patients with breast cancer at an academic institution to examine the utility of genetic testing in this population. Methods Patients with stages I to III breast cancer who were seen at a single cancer center between 2010 and 2012, and who agreed to participate in research DNA banking, were included (N = 488). Personal and family cancer histories were collected and germline DNA was sequenced with NGS to identify mutations. Results Deleterious mutations were identified in 10.7% of women, including 6.1% in BRCA1/2 (5.1% in non-Ashkenazi Jewish patients) and 4.6% in other breast/ovarian cancer predisposition genes including CHEK2 (n = 10), ATM (n = 4), BRIP1 (n = 4), and one each in PALB2, PTEN, NBN, RAD51C, RAD51D, MSH6, and PMS2. Whereas young age (P < .01), Ashkenazi Jewish ancestry (P < .01), triple-negative breast cancer (P = .01), and family history of breast/ovarian cancer (P = .01) predicted for BRCA1/2 mutations, no factors predicted for mutations in other breast cancer predisposition genes. Conclusion Among sequential patients with breast cancer, 10.7% were found to have a germline mutation in a gene that predisposes women to breast or ovarian cancer, using a panel of 25 predisposition genes. Factors that predict for BRCA1/2 mutations do not predict for mutations in other breast/ovarian cancer susceptibility genes when these genes are analyzed as a single group. Additional cohorts will be helpful to define

Metastatic Colorectal Cancer in Young Adults: A Study From the South Australian Population-Based Registry.

PubMed

Vatandoust, Sina; Price, Timothy J; Ullah, Shahid; Roy, Amitesh C; Beeke, Carole; Young, Joanne P; Townsend, Amanda; Padbury, Robert; Roder, David; Karapetis, Christos S

2016-03-01

Colorectal cancer (CRC) is a common malignancy. There is growing evidence that CRC incidence is increasing in the younger population. There is controversy surrounding the prognosis of young patients with CRC. In this study we reviewed Australian patients with metastatic CRC (mCRC) who were younger than 40 years of age at the time of diagnosis of metastatic disease. To our knowledge this is the first study to focus on this age group with mCRC. This was a retrospective study using data from the South Australian Metastatic Colorectal Cancer database. We compared patient and disease characteristics, management approaches, and outcomes for age groups < 40 and ≥ 40. A multivariate Cox proportional hazards model was fitted to compare the survival outcomes (death from all causes) between the 2 groups. From 3318 patients, 46 (1.4%) were younger than 40 years of age. In a comparison of patients in the younger than 40-year-old group with the older group, a greater proportion had synchronous metastatic disease (80.4% vs. 64.4%, respectively; P = .04) and disease originating from the left colon (71.7% vs. 61.7%, respectively; P = .035); also a larger proportion in the younger than 40-year-old group received chemotherapy compared with the older group (82.6% vs. 58.7%, respectively; P < .01). In the adjusted multivariate model, survival was not significantly different between the 2 groups (hazard ratio, 0.81; 95% confidence interval, 0.56-1.16; log rank P = .25). Young-onset mCRC patients, when defined as aged younger than 40 years, have equivalent survival compared with their older counterparts. This is despite differences in disease characteristics and management approach between the 2 groups. Copyright © 2016 Elsevier Inc. All rights reserved.

Educational and vocational goal disruption in adolescent and young adult cancer survivors.

PubMed

Vetsch, Janine; Wakefield, Claire E; McGill, Brittany C; Cohn, Richard J; Ellis, Sarah J; Stefanic, Natalie; Sawyer, Susan M; Zebrack, Brad; Sansom-Daly, Ursula M

2018-02-01

Cancer in adolescents and young adults (AYAs) can interrupt important developmental milestones. Absence from school and time lost from work, together with the physical impacts of treatment on energy and cognition, can disrupt educational and vocational goals. The purpose of this paper is to report on AYA cancer survivors' experiences of reintegration into school and/or work and to describe perceived changes in their educational and vocational goals. Adolescents and young adults recruited from 7 hospitals in Australia, aged 15 to 26 years and ≤24 months posttreatment, were interviewed using the psychosocial adjustment to illness scale. Responses were analysed to determine the extent of, and explanations for, cancer's effect on school/work. Forty-two AYA cancer survivors (50% female) participated. Compared with their previous vocational functioning, 12 (28.6%) were scored as experiencing mild impairment, 14 (33.3%) moderate impairment, and 3 (7.1%) marked impairment. Adolescents and young adults described difficulties reintegrating to school/work as a result of cognitive impacts such as concentration problems and physical impacts of their treatment, including fatigue. Despite these reported difficulties, the majority indicated that their vocation goals were of equal or greater importance than before diagnosis (26/42; 62%), and most AYAs did not see their performance as compromised (23/42; 55%). Many survivors described a positive shift in life goals and priorities. The theme of goal conflict emerged where AYAs reported compromised abilities to achieve their goals. The physical and cognitive impacts of treatment can make returning to school/work challenging for AYA cancer survivors. Adolescents and young adults experiencing difficulties may benefit from additional supports to facilitate meaningful engagement with their chosen educational/vocational goals. Copyright © 2017 John Wiley & Sons, Ltd.

Psychological outcomes and health beliefs in adolescent and young adult survivors of childhood cancer and controls.

PubMed

Kazak, Anne E; Derosa, Branlyn Werba; Schwartz, Lisa A; Hobbie, Wendy; Carlson, Claire; Ittenbach, Richard F; Mao, Jun J; Ginsberg, Jill P

2010-04-20

PURPOSE The purpose of this study was to compare adolescent and young adult (AYA) pediatric cancer survivors and peers without a history of serious illness on psychological distress, health-related quality of life (HRQOL), health beliefs; examine age at diagnosis and cancer treatment intensity on these outcomes; and examine relationships between number of health problems and the outcomes. PATIENTS AND METHODS AYA cancer survivors (n = 167) and controls (n = 170), recruited during visits to a cancer survivorship clinic and primary care, completed self-report questionnaires of distress, health problems, and health beliefs. For survivors, providers rated treatment intensity and health problems. Results There were no statistically significant differences between survivors and controls in psychological distress or HRQOL. Cancer survivors had less positive health beliefs. Survivors diagnosed as adolescents had significantly greater psychological distress and fewer positive health beliefs than those diagnosed earlier. Survivors with the highest level of treatment intensity had greater anxiety and fewer positive health beliefs than those with less intense treatments. Provider report of current health problems related to survivors' beliefs and mental HRQOL only, whereas patient report of health problems correlated significantly with most psychosocial outcomes and beliefs. CONCLUSION AYA cancer survivors did not differ from peers in psychological adjustment but did endorse less adaptive health beliefs. Survivors diagnosed during adolescence and who had more intensive cancer treatments evidenced poorer psychosocial outcomes. Beliefs about health may be identified and targeted for intervention to improve quality of life, particularly when patient perceptions of current health problems are considered.

Ovarian stimulation in young adult cancer survivors on targeted cancer therapies

PubMed Central

Su, H. Irene; Connell, Meghan W.; Bazhenova, Lyudmila A.

2016-01-01

Objective To describe a clinical approach to and outcomes of in vitro fertilization in reproductive-aged cancer survivors on targeted cancer therapies. Design Case report Setting Academic fertility preservation program Patients The first case is of a female patient with metastatic lung cancer on long-term crizotinib, an ALK inhibitor. The second case is of a female patient with metastatic colon cancer on long-term denosumab, a RANKL antibody. Both patients presented desiring fertility. Interventions In vitro fertilization Main outcome measures Live birth and embryo banking Results The potential impact of targeted therapy on oocytes and pregnancy was investigated via literature review and pharmaceutical company inquiries. Following oncologic, fertility and psychological counseling, both survivors underwent ovarian stimulation, in vitro fertilization and preimplantation genetic screening. One couple achieved live births of dizygotic twins via gestational surrogacy. The second couple froze one euploid blastocyst for future fertility. Both survivors are stable from their cancer standpoints. Conclusion Successful fertility treatments are possible in the context of exposure to crizotinib, and denosumab. PMID:27565250

Sex of First Child and Breast Cancer Survival in Young Women.

PubMed

Olson, Jon C; Bogdan, Gregory F; Tuthill, Robert W; Nasca, Philip C

2015-08-14

Two studies have reported that young women with breast cancer face increased risk of early mortality if their first child was male rather than female. An immunological mechanism has been suggested. We sought to confirm these results in a larger, historical cohort study of 223 parous women who were aged <45 years at breast cancer diagnosis during 1983-1987. Subjects were identified through the Maine Cancer Registry. Follow-up data were obtained from hospitals, physicians, and death certificates. Reproductive history data were obtained from the next of kin of the deceased women, birth certificates, physicians, hospitals, and lastly, subjects. With a 7-year follow-up, multivariate modeling found a lower mortality risk in women with a male first child (hazard ratio [HR] 0.51, 95% confidence interval [CI] 0.32-0.81, log-rank comparison). The survival advantage remained for at least 13 years in women with a male firstborn. Thus, previous studies were not confirmed. Mortality risk in young women with breast cancer is not increased by having borne a male first child rather than a female first child.

Locally advanced breast cancer in Saudi Arabia: high frequency of stage III in a young population.

PubMed

Ezzat, A A; Ibrahim, E M; Raja, M A; Al-Sobhi, S; Rostom, A; Stuart, R K

1999-07-01

In the Kingdom of Saudi Arabia (KSA), breast cancer constitutes 18% of all cancers in Saudi women. Whilst locally advanced breast cancer disease is unusual in Western countries, it constitutes more than 40% of all non-metastatic breast cancer in KSA. The relative frequency of locally advanced disease among our breast cancer population and the lack of a uniform consensus in the literature about its optimal management have prompted this retrospective analysis of the medical records of patients with Stage III breast cancer patients seen at King Faisal Specialist Hospital and Research Center between 1981 and 1991. In all, 315 patients were identified. Their median age +/- SD was 46 +/- 11.6 years which is distinctly different from the 60-65 years median age in industrial Western nations. Most patients were younger than 50 years (64%) and premenopausal (62%). Patients were approximately equally divided between Stage IIIA and Stage III B. Patients received multimodality treatment, including surgery, adjuvant chemotherapy, tamoxifen, and adjuvant radiotherapy. Sixty-one patients were excluded from survival analysis as they were considered lost to follow-up. Of the remaining 254 patients, 73 (29%) were alive and disease free, and 18 patients (7%) were alive but with evidence of the disease. The remaining 163 (64%) had died from breast cancer or its related complications. Their median overall survival (OS) was 54 months, (95% CI, 27 to 121 months) and the median progression-free survival (PFS) was 28.8 months (95% CI, 14.2 to 113 months). Cox proportional hazard model identified Stage III B and the number of positive axillary lymph nodes as poor predictors of OS and PFS. Radiotherapy was the only adjuvant modality that affected survival favourably. The prognosis of patients with Stage III disease remains poor despite the use of a multimodality approach. The overall young age of our patients may have contributed to the poor outcome. Moreover, the adverse effect of Stage III

Prospective Study of Fertility Concerns and Preservation Strategies in Young Women With Breast Cancer

PubMed Central

Ruddy, Kathryn J.; Gelber, Shari I.; Tamimi, Rulla M.; Ginsburg, Elizabeth S.; Schapira, Lidia; Come, Steven E.; Borges, Virginia F.; Meyer, Meghan E.; Partridge, Ann H.

2014-01-01

Purpose Most research regarding fertility in young women with breast cancer has focused on long-term survivors. Little is known about how fertility concerns affect treatment decisions or fertility preservation strategies at the time of initial cancer diagnosis. Patients and Methods As part of an ongoing prospective multicenter cohort study, we surveyed women with newly diagnosed early-stage breast cancer at age ≤ 40 years. The baseline survey included sociodemographic, medical, and treatment data as well as a modified Fertility Issues Survey, including fertility concern and preservation items. Univariable and multivariable modeling were used to investigate predictors of greater fertility concern. Results Among the first 620 eligible respondents included in this analysis, median age was 37 years (range, 17 to 40 years); 425 women (68%) discussed fertility issues with their physicians before starting therapy, and 319 (51%) were concerned about becoming infertile after treatment. Because of concerns about fertility, four women (1%) chose not to receive chemotherapy, 12 (2%) chose one chemotherapy regimen over another, six (1%) considered not receiving endocrine therapy, 19 (3%) decided not to receive endocrine therapy, and 71 (11%) considered receiving endocrine therapy for < 5 years; 65 (10%) used fertility preservation strategies. Greater concern about fertility was associated with younger age, nonwhite race, not having children, and receipt of chemotherapy. Conclusion Many young women with newly diagnosed breast cancer have concerns about fertility, and for some, these substantially affect their treatment decisions. Only a minority of women currently pursue available fertility preservation strategies in this setting. PMID:24567428

Diagnostic timeliness in adolescents and young adults with cancer: a cross-sectional analysis of the BRIGHTLIGHT cohort.

PubMed

Herbert, Annie; Lyratzopoulos, Georgios; Whelan, Jeremy; Taylor, Rachel M; Barber, Julie; Gibson, Faith; Fern, Lorna A

2018-03-01

Adolescents and young adults (AYAs) are thought to experience prolonged intervals to cancer diagnosis, but evidence quantifying this hypothesis and identifying high-risk patient subgroups is insufficient. We aimed to investigate diagnostic timeliness in a cohort of AYAs with incident cancers and to identify factors associated with variation in timeliness. We did a cross-sectional analysis of the BRIGHTLIGHT cohort, which included AYAs aged 12-24 years recruited within an average of 6 months from new primary cancer diagnosis from 96 National Health Service hospitals across England between July 1, 2012, and April 30, 2015. Participants completed structured, face-to-face interviews to provide information on their diagnostic experience (eg, month and year of symptom onset, number of consultations before referral to specialist care); demographic information was extracted from case report forms and date of diagnosis and cancer type from the national cancer registry. We analysed these data to assess patient interval (time from symptom onset to first presentation to a general practitioner [GP] or emergency department), the number of prereferral GP consultations, and the symptom onset-to-diagnosis interval (time from symptom onset to diagnosis) by patient characteristic and cancer site, and examined associations using multivariable regression models. Of 1114 participants recruited to the BRIGHTLIGHT cohort, 830 completed a face-to-face interview. Among participants with available information, 204 (27%) of 748 had a patient interval of more than a month and 242 (35%) of 701 consulting a general practitioner had three or more prereferral consultations. The median symptom onset-to-diagnosis interval was 62 days (IQR 29-153). Compared with male AYAs, female AYAs were more likely to have three or more consultations (adjusted odds ratio [OR] 1·6 [95% CI 1·1-2·3], p=0·0093) and longer median symptom onset-to-diagnosis intervals (adjusted median interval longer by 24 days [95

Spirituality in young adults with end-stage cancer: a review of the literature and a call for research.

PubMed

Mistretta, Erin G

2017-07-01

Existing research finds that spiritual wellness may enhance quality of life in those with end-stage cancer. Unfortunately, much of the literature is focused on the spirituality of those in middle and older adulthood, leaving questions about the spirituality of young adults facing life-threatening illness. This article reviews the current landscape of spirituality in young adults with cancer. In addition, this paper serves as a call for research to consider the development of spirituality in this unique population. The literature shows that young adults with cancer are less likely to use mental health services compared to other age groups with cancer. Research tends to be restricted to early young adulthood with a focus on spiritual or religious practices and less about the meaning of spirituality in the context of their illness. A review of the development of spirituality in healthy young adults helps to build the framework to ask questions about what may be occurring for those with life-threatening illness.

Health-related quality of life of young women with breast cancer. Review of the literature.

PubMed

Yfantis, Aris; Intas, George; Tolia, Maria; Nikolaou, Michail; Tsoukalas, Nikolaos; Lymperi, Maria; Kyrgias, George; Zografos, George; Kontos, Michalis

2018-01-01

The purpose of the present article was to investigate the health related quality of life (QoL) of young women with breast cancer. For the purposes of this article, we reviewed the literature via the electronic databases Pubmed, Scopus and Google Scholar. Key words used were breast cancer, young women, health related quality of life, and quality of life. Young women reported fatigue, pain in the breast and hand problems with lymphedema as the most frequent physical effects of treatment. Other physical problems were the not periodic and painful menses, vaginal dryness and loss of libido. Many young women had depressive symptoms such as depressed mood, helplessness, hopelessness, sleep loss, psychomotor retardation and disorders of appetite. There were often concerns about the health monitoring and self-image, while they were anxious if they will have a baby in the future or if they can nurture the existing ones. Many problems arose in the career of young women. They faced discrimination in the labor supply and/or layoff because they were considered unable to do their job effectively. In addition, they reported isolation problems and feeling different from other women of similar age. Young women consider that their healthrelated QoL is worse compared with older women. Young women worry about their future, with particular reference to their role as mothers and especially to children-bearing. The free screening and non-exclusion of young women is particularly important for breast cancer prevention and women's well-being.

An Integrative Review of Psychosocial Concerns Among Young African American Breast Cancer Survivors.

PubMed

Nolan, Timiya S; Frank, Jennifer; Gisiger-Camata, Silvia; Meneses, Karen

African American (AA) women are more likely to be given a diagnosis of breast cancer at an early age, experience morbidity after treatment, and exhibit disparities in survivorship. Although psychosocial well-being is largely studied among breast cancer survivors, data are sparse regarding young AA survivors. This integrative review examined psychosocial concerns in survivorship among young AA survivors using a quality-of-life framework. PubMed, CINHAL, EMBASE, PsychINFO, and Scopus were searched for articles exploring psychosocial well-being in young AA survivors. The search yielded 237 articles that were retrieved and reviewed for relevance. Of these, 16 articles were selected based on inclusion/exclusion criteria. Data were evaluated and synthesized based on the quality-of-life model. Selected articles omitted the study of several psychological subconstructs and identified existing psychosocial concerns that require mitigation. The review revealed key areas of psychosocial concerns among young AA survivors including ongoing anxiety/depression, cognitive changes, and relationships. Identified gaps include paucity of research with young AA survivors and their residual psychosocial concerns. Review findings indicate a need to increase survivorship research on young AA survivors. Researchers, clinicians, and young AA survivors must partner in efforts to understand psychosocial concerns and translate findings into clinical practice (ie, use of psychosocial distress tools, distress de-escalation protocols, and individualized survivorship care plans) toward reduction of quality-of-life health disparities among young AA survivors.

Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis.

PubMed

Ngwenya, Nothando; Kenten, Charlotte; Jones, Louise; Gibson, Faith; Pearce, Susie; Flatley, Mary; Hough, Rachael; Stirling, L Caroline; Taylor, Rachel M; Wong, Geoff; Whelan, Jeremy

2017-06-01

To review the qualitative literature on experiences of and preferences for end-of-life care of people with cancer aged 16-40 years (young adults) and their informal carers. A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods program guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus, and sample, but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care, while negative experiences were loss of "self" and nonfacilitative services and environment. Preferences included a family-centered approach to care, honest conversations about end of life, and facilitating normality. There is little evidence focused on the end-of-life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore, it is difficult to identify age-specific issues clearly. From this review, we suggest that supportive interventions and education are needed to facilitate open and honest communication at an appropriate level with young people. Future research should focus on age-specific evidence about the end-of-life experiences and preferences for young adults with cancer and their informal carers.

PO-38 - Young women with breast cancer and inferior vena cava thrombosis. Which is the best therapeutic option? And for how long?

PubMed

Vilaseca, A B; Capmany, C L; Sabsay, F

2016-04-01

Thromboembolic disease (TED) is frequent, and, thromboembolic events are the second cause of death in active cancer patients Today we have knowledge of a lot of risk and predictor factors of thrombosis in cancer, although some mechanisms underlying this increased thromboembolic risk, still remains unclear. Knowing that cancer is today curable, we want to remark that not only old people but also young should be investigated about their personal burden of thromboembolic disease to improve prognosis, and at the same time remark the need to establish different therapeutic strategies in each stage of the disease to prevent or treat TED. We present the case of a young 28 old, female, with breast nodule and axillaries lymphadenopathies, highly suspicious of breast cancer. She has an acute Inferior Vena Cava Thrombosis in her Scan Tomography with a 40% occlusion clinically asymptomatic. Personal history: 2008 splenectomy by a refractory autoimmune hemolytic anemia Directed Coombs Positive (DC) to corticosteroids, 2010 hypothyroidism, 2011 anti lupus antibodies(LA) during traditional pre surgical coagulation test, that persist along time. Family history positive for breast cancer, mother and grandmother and negative for thromboembolic disease In this scenario we decide to put her in low molecular weight heparin 1mg/kg bid a day until we have the oncology diagnosis and then re evaluate our therapeutic anticoagulant decision. After breast cancer diagnosis with the axillaries biopsy she continued with LMWH at full doses to perform the surgery and complete treatment. The diagnosis after surgery was high grade intraductal carcinoma N1 Pos of 21. She performs chemotherapy with cyclophosphamide, doxorubicin and taxol and then radiotherapy. She has been controlled with doppler ultrasonography every three months, at month six shows vena cava recanalization. When she finished radiotherapy we stop HBPM one day and reevaluated for LA that persist positive. At this time we decided to

"I don't want to take chances.": A qualitative exploration of surgical decision making in young breast cancer survivors.

PubMed

Rosenberg, Shoshana M; Greaney, Mary L; Patenaude, Andrea F; Sepucha, Karen R; Meyer, Meghan E; Partridge, Ann H

2018-06-01

Young women with unilateral breast cancer are increasingly choosing contralateral prophylactic mastectomy (CPM), despite its limited medical benefit for most women. The purpose of this study was to better understand this choice through a qualitative exploration of surgical decision-making in young survivors, including how issues particular to younger women affected their decision and the post-surgical experience. Women age ≤ 40 years with stage 0 to III breast cancer, 1 to 3 years from diagnosis who had undergone breast cancer surgery were recruited to participate. Four focus groups were conducted: 2 with women who had bilateral mastectomy and 2 with women who kept their contralateral breast. Focus groups were recorded and transcribed with identifiers removed. Emergent themes were identified by thematic content analysis using NVivo 11. Of the 20 participants, median age at diagnosis was 37 years. Emergent themes were categorized into the following domains: (1) emotions/feelings surrounding surgery/decision about surgery; (2) factors affecting the decision; (3) communication and interaction with the healthcare team; (4) impact on post-surgical life and recovery; and (5) support needs. Young women who chose CPM often were concerned about a future breast event, despite this low risk, suggesting some gain peace of mind by choosing CPM. Young survivors also had many physical and emotional concerns after surgery for which they did not always feel prepared. Informational resources and decision aids may enhance patient-doctor communication and help young survivors better understand risk and manage expectations surrounding short and longer-term physical and emotional effects after surgery. Copyright © 2018 John Wiley & Sons, Ltd.