Taboo Topics in Adolescent and Young Adult Oncology: Strategies for Managing Challenging but Important Conversations Central to Adolescent and Young Adult Cancer Survivorship

Abstract

Research on adolescents and young adults (AYAs) with cancer has flourished over the past decade, underscoring the unique medical and psychosocial needs of this vulnerable group. A cancer diagnosis during adolescence and young adulthood intersects with the developmental trajectory of AYAs, derailing critical physical, social, and emotional development. AYAs face these abrupt life changes needing age-appropriate information and resources to offset these challenges. Greater attention is needed to address AYA-specific concerns on reproductive and sexual health, financial security and independence, emotional well-being, social support, and end-of-life care. If these unique needs are unaddressed, this can adversely affect AYAs’ health care engagement and overall quality of life, increasing their risk for cancer-related morbidity and early mortality. In particular, health care decisions made during treatment have important implications for AYA patients’ future health. Oncology clinicians are well positioned to address AYA patients’ concerns by anticipating and addressing the challenges this age group is likely to face. In this paper, we explore several core topics that affect AYAs’ quality of life and that can be challenging to address. Starting from the moment of diagnosis, through cancer treatment and post-treatment survivorship, and into end of life, each section highlights critical developmental-centric life domains that are affected by the cancer experience. Specifically, we discuss resources, tools, and strategies to navigate these challenging conversations. Taking a risk-reduction approach that invites two-way communication and facilitates referral to age-appropriate resources would help destigmatize these experiences and, in turn, would support the provision of compassionate and effective age-concordant care to this vulnerable group.

Adolescent and Young Adult (AYA) Cancer Survivorship Practices: An Overview

“…For example, pediatric malignancies, e.g., hematologic malignancies and brain tumors, are the most common cancers in adolescents (ages 15–19 years), while adult epithelial cancers, e.g., breast and colorectal cancers, are more common in older AYAs (ages 30–39 years), and there are also some cancers with the highest incidence among the AYA age group, e.g., germ cell tumors [ 7 ]. Triggered by the landmark report from the National Cancer Institute (NCI) in 2006, highlighting the dearth of improvements in survival rates for AYAs diagnosed with cancer compared with those diagnosed during childhood and adulthood—also called the “AYA gap”—the AYA group was defined as a high-priority group [ 1 , 16 ]. Fortunately, survival has improved more recently with a decline in overall cancer mortality during 2008 through 2017 by 1% annually [ 15 ].…”

“…AYAs with cancer are distinct from the pediatric (<15 years) and the older adult (>40 years) cancer populations, not only with respect to their spectrum of cancer types, but also the biology of their cancers, their developmental status, their particular psychosocial needs, and the long-term complications of their cancer and treatment thereof [ 1 , 7 , 16 , 18 ]. The following aspects may all impact survivorship outcomes and have implications for the follow-up care of AYAs with cancer: The percentage of AYAs with cancer who carry pathogenic variants in genes that predispose to cancer is significant [ 18 ], with important consequences for an individuals’ surveillance strategy.…”

“… Adolescence, emerging, and young adulthood are complex, unique phases of life due to the many physical, emotional, cognitive, and social transitions [ 27 ]. A cancer diagnosis during the AYA life stage exacerbates typical developmental challenges and interferes with the attainment of important age-specific milestones [ 16 ], including identity-forming, establishing autonomy, responsibility and independence, finishing education and starting a career, obtaining romantic relationships and starting a family [ 27 ]. In addition, the type of informal caregivers may differ among cancer patients with varying ages and life courses [ 28 ].…”

“…Much of what we have learned about AYAs to date has been extrapolated from research on childhood and older adult cancer patient populations in disease-but not age-specific cohorts, e.g., breast cancer and Hodgkin's [16,[34][35][36]. However, there is still a dearth of literature on (long-term) adverse health outcomes in AYAs treated for other early-onset adult cancers, such as colorectal cancer, and AYA cancers, such as melanoma [37][38][39][40][41].…”

“…Issues include azoospermia among men and acute ovarian failure, premature ovarian insufficiency, and premature menopause among women [9,60,61]. Although some patients of younger ages may feel as if fertility is not relevant to them yet, it is important though to discuss the possibility of infertility, as it may have a huge impact later in life [16,64]. Unfortunately, despite the availability of fertility preservation options (e.g., embryo, oocyte, or ovarian tissue cryopreservation and hormonal therapies for women, or testicular tissue cryopreservation and sperm banking for men), the understanding of fertility risks may either not be complete or accurate, or the experience of discomfort among healthcare providers or patients may lead to the start of treatment without fertility preservation or fertility concerns among patients [16,31,46,[65][66][67][68].…”