By Laurie Wertich
In the landscape of life experience, it is pretty clear that ages 15 to 39 represent a transformative time—a time of transition from childhood to adulthood; a period of dramatic, life-shaping events and self-discovery; and an intense time of rapid and significant physical, mental, and emotional change.
When a young adult is diagnosed with cancer during these years, the resulting physical and emotional impacts are unique, affecting bodies and minds and social experience in a profound way that sets this group apart from both younger (pediatric) patients and older adults. For this reason the oncology community has come to identify this population as adolescent and young adult (AYA), and it is increasingly working to provide treatment and services that meet the unique needs of this group.
A Range of Experiences
The age span that falls under the AYA umbrella—15 to 39—is broad, and the concerns and the experiences of patients along this continuum are varied. Adolescents may be just learning what it means to experience independence and testing boundaries of childhood; impulses, such as living carelessly in the moment and risk taking, are emerging, competing with a newfound drive for planning for the future. Peer acceptance and opinions can take center stage in this group, as the foundation of self-esteem, confidence, and decision-making.
As adolescence melds into young adulthood, adult responsibilities and an entirely new spectrum of obligations stake their claim in life. College and career choices, lasting relationships, marriage, children, homeownership, and shifting roles in caregiving that emerge as parents age—all come to the fore. Growing responsibilities of work, family, and social obligations become a priority.
Across the many different aspects and concerns that mark the AYA experience, the rapid rate of change and growth is perhaps the one constant. When a cancer diagnosis enters the picture, AYA patients must manage the impact of their diagnosis, treatment, and recovery in the context of this change, creating a uniquely challenging experience.
A cancer diagnosis is the last thing many healthcare providers expect to deliver to young adult patients. Unfortunately, the perception that cancer is unlikely among this age range means that AYA patients are often misdiagnosed and receive later-stage diagnoses.
The reality is that approximately 70,000 AYAs are diagnosed with cancer each year in the United States, and incidence in this age group is on the rise.1 Cancer is the number one cause of disease-related death among AYAs, and, unlike with pediatric and older adult cancers, survival rates for most types of cancers have not increased over the past few decades.2,3
A lack of awareness and a lack of progress in treatment have been the result of a variety of factors, many of which stem from the dearth of data about this group of patients. It has been difficult in the past to gather enough information specific to this age group for several reasons.
- Lack of consistent treatment. Some AYAs are treated as pediatric patients, whereas others are treated as adult patients.4 There has been no established delineation of age in terms of when AYAs should be treated with pediatric or older adult protocols. Because of the age span of AYAs straddles both age groups, exactly which treatment regimen to use is at the discretion of the patient’s individual healthcare provider. Furthermore, the lack of communication and collaboration among oncologists treating pediatrics and older adults has kept this data isolated.
- Lack of participation in clinical trials. Compared with other age groups, AYAs have a very low participation rate in clinical trials.5 Reasons for this include a lack of clinical trials dedicated solely to this age group, a lack of awareness among healthcare providers of trials available for this age group, and the need for patients to travel to large research centers to receive treatment.
- Lack of follow-up data. AYAs with cancer are seen by several different types of physicians once the cancer has been treated, and there is no large data-collecting facility for this age group to understand how certain treatments might result in different outcomes.6 The inconsistencies with treatment of pediatric or adult regimens, a lack of protocol in referral practices, and irregular follow-up healthcare patterns of AYAs with cancer—all have contributed to difficulties in gathering data for this age group.
Fortunately, the distress signal sounded by AYA patients and healthcare providers is increasingly being heard. AYA patients, survivors, and those who provide care for this population are striving to make clear the distinguishing characteristics of their unique experience so that they can be cared for appropriately and have access to the resources that will improve survival and psychosocial impact.
Identifying and raising awareness of the differences that mark the AYA experience is an important first step in ensuring that AYA needs can be fulfilled.
Some types of cancer are more common among AYAs than either pediatric or older adult cancer patients. Breast cancer, leukemia, lymphoma, melanoma, sarcomas, thyroid cancers, central nervous system cancers, and cancers of the reproductive system are some of the most common among AYAs in the United States. Comparatively, the most common cancers among adults in the United States overall are non-melanoma skin, breast, prostate, lung, and colorectal cancers, while leukemia and cancers of the brain and the central nervous system are the most common childhood cancers.7,8,9
Some cancer types diagnosed among AYA patients tend to have different biological characteristics than the same cancers in pediatric or older patients.10 For example, breast cancer in AYAs tends to be more aggressive than breast cancer in older women.11 The biological responses and metabolism of medication in AYAs is often different from that of older or younger cancer patients. This requires different medications and/or different doses or scheduling of medication for optimal outcomes.
Cancers tend to be detected at a later stage among AYAs.12 This is thought to be the result of a combination of factors, including a lack of health insurance, resulting in patients delaying healthcare visits; a lack of awareness of the early signs and symptoms of cancer among patients; a lack of consistent medical care, limiting the ability of healthcare providers to detect early symptoms of cancer; and the low priority of cancer detection for this age group among providers.
The age range of AYA patients means that their worlds could look very different—a teenager might be in the middle of high school, whereas a 35-year-old might be raising a family and working full-time. No matter the age, though, it is certain that an AYA patient is experiencing major change and is balancing many social, emotional, and practical concerns.
The following are some of the key psychosocial factors and issues that young adults face.
- Social Isolation Treatment for cancer typically robs AYAs of the physical energy and the mental acuity needed for the many roles they play in their lives, removing them physically and emotionally from their school, career, and social circles. This isolation, at a time when they most need the support, love, and compassion of family, can cause anxiety and depression; and like a vicious cycle, these emotions lead to further isolation.
- Family Dynamics When a young adult is diagnosed with cancer, it has an impact on the entire family and can create tension over changing roles and issues of independence. At the younger end of the AYA age range, a diagnosis may mean that a parent needs to stop working to become a caregiver for a teen patient, causing financial stress; for young adults diagnosed while in college or living away from home for the first time, issues around becoming dependent on their parents again may arise; for patients who have families of their own, a spouse may need to take on extra responsibilities for caregiving and child care, and aging parents may need to enter the picture again.
- Fertility Some types of cancer treatment have the potential to leave both male and female patients infertile. This can be a devastating consequence of treatment, and young adults can face challenging decisions related to fertility preservation and family planning. (See “Young and Newly Diagnosed with Cancer? Think about Fertility.”)
- Financial ImpactA cancer diagnosis and treatment can result in long-term financial concerns for young adults. Young patients may not have insurance; they may be just launching a career while simultaneously working to pay off student debt; they may have new mortgages. The cost of treatment and the long-term impact on career trajectory can be major challenges for patients, both at the time of treatment and for many years to come.
What Is Being Done: The Good News
Despite the fact that the study of AYA cancer patients and survivors as a unique subset of oncology is still in its infancy, support for efforts related to serving AYA patients is gaining momentum throughout medical and social communities. In fact, healthcare providers, medical facilities, and social networking systems are quickly altering the landscape of support for AYA cancer patients and survivors in significant ways.
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Participation of this age group in clinical trials has been lagging for the past few decades, contributing to the stagnation in survival rates. In recent years increased communication among cooperative groups and collaboration of a variety of providers treating AYA patients have led to increased recognition of the need for more-creative solutions to include AYA patients in trials moving forward.13
Placing AYA patients in these trials will help researchers identify and understand the differences in the biology of the disease, as well as the differences in the patients’ metabolism of medication. Based on this information, optimal treatment protocols can be established for young adults. In addition, data gathered from research may prompt practitioners to better understand the signs and symptoms of AYA cancers, potentially resulting in earlier detection and regular screening practices.
Only other AYA cancer patients and survivors can truly understand all the psychosocial factors involved in the AYA cancer experience. The growing number of support resources—in person, online, and through social media—that are connecting younger patients and providing age-appropriate information is encouraging.
Throughout hospitals and communities, support groups for AYA cancer patients and survivors are increasingly available to provide a place for these patients to meet, talk, and support one another. Opportunities for connection include everything from hospital-based support groups and recreational activities and retreats to annual conferences and online and social media efforts.
Social media, in particular, has become an invaluable resource for AYAs, allowing patients to connect from their own homes or hospital rooms when they would otherwise be unable to participate and providing a venue for ongoing connection, anytime, day or night, whenever the need for an emotional connection arises. The global reach of social media also has the benefit of widening the circle of patients who have been through the same or a similar experience and also allows users to be as anonymous or open as they desire regarding any aspect of their experiences.
The layers of understanding and helpful insight that AYA patients and survivors provide one another through these various support resources have an immeasurable impact on their psychosocial experience. Emotional connections drastically reduce the feelings of social isolation, anxiety, depression, and helplessness. Furthermore, social networking for family members and loved ones who have been affected by the cancer diagnosis is also available and is an invaluable resource of support.
Efforts to educate healthcare providers about the importance of educating young patients about fertility upfront continue. In 2013 the American Society of Clinical Oncology issued new recommendations highlighting the need for patients to receive information about the impact on fertility of any treatments they would receive as early as possible after diagnosis and to be referred to appropriate fertility specialists and psychosocial support services.14 Various fertility preservation options are now available, and each young adult will need to make informed decisions about which option best meets his or her needs and works with the treatment schedule.
Into The Future
AYA oncology issues are garnering increased attention, and patients and providers are hopeful that this growing awareness will lead to a better understanding of the unique challenges young adults face and improved outcomes for this population. While there is still much work to be done to ensure that AYA needs are met, the momentum among providers, patients, and advocates is encouraging.
- A Snapshot of Adolescent and Young Adult Cancers. National Cancer Institute website. Available at: . Accessed July 1, 2014.
- Bleyer A, O’Leary M, Barr R, Ries L. Cancer epidemiology in older adolescents and young adults 15 to 29 years of age, including SEER incidence and survival: 1975–2000. NIH Pub. No. 06-5767:1-14-173-190. Bethesda, MD: National Institutes of Health, National Cancer Institute; 2006.
- Bleyer A, Ries L. US cancer incidence, mortality and survival: Young adults are lagging further behind. Proceedings of the American Society of Clinical Oncology. 2002;21:389a.
- Zebrack B, Mathews-Bradshaw B, Siegel S. Quality cancer care for adolescents and young adults: A position statement. Journal of Clinical Oncology. 2010;28(32):4862-67.
- Burke ME, Albritton K, Marina N. Challenges in the recruitment of adolescents and young adults to cancer clinical trials. Cancer. 2007;110(11):2385-93. doi: 10.1002/cncr.23060.
- Hayes-Lattin B, Mathews-Bradshaw B, Siegel S. Adolescent and young adult oncology training for health professionals: A position statement. Journal of Clinical Oncology. 2010;28(32):4858-61.
- Expert Q&A: Young Adults with Cancer. American Society of Clinical Oncology website. Available at: . Accessed July 1, 2104.
- Common Cancer Types. National Cancer Institute website. Available at: . Accessed July 1, 2014.
- A Snapshot of Pediatric Cancers. National Cancer Institute website. Available at: . Accessed July 1, 2014.
- Bleyer A, Barr R, Hayes-Lattin B, et al. The distinctive biology of cancer in adolescents and young adults. Nature Reviews. Cancer. 2008;8(4):288- 98. doi: 10.1038/nrc2349.
- Keegan THM, DeRouen MC, Press DJ, Kurian AW, Clarke CA. Occurrence of breast cancer subtypes in adolescent and young adult women. Breast Cancer Research. 2012;27:14(2): R55. doi:10.1186/bcr3156.
- Rogers P. A new paradigm of cancer care for adolescents and young adults (AYA): A framework to action. Available at: . Accessed July 1, 2014.
- Clinical Trials Offer a Path to Better Care for AYAs with Cancer. National Cancer Institute website. Available at . Accessed July 1, 2014.
- Nelson R. ASCO Issues: Updated Guidelines on Fertility Preservation. Available at: . Accessed June 12, 2014.
CancerCare cancercare.org/tagged/young_ adults
Cancer Support Community cancersupportcommunity.org
Group Loop grouploop.org
Imerman Angels imermanangels.org
Starbright World starbrightworld.org
Stupid Cancer stupidcancer.org
Young Survival Coalition youngsurvival.org
Ulman Cancer Fund for Young Adults