Abstract
Being an adolescent and young adult (AYA) cancer survivor provides a unique lived experience that is beneficial as a cancer professional. Survivors are drawn to the cancer space for a variety of reasons, the primary being their desire to improve support for patients and the quality of care. Survivors often describe their diagnosis as transformative to their work-related goals, causing many to pursue a new career after treatment. 1 This sentiment was true for the authors who decided to transition careers into the cancer field. As cancer moves from the primary focus to the background of everyday life after treatment, reintegration into a survivor’s “new normal” routine is a common goal while establishing their post-cancer identity. Survivors determine for themselves what it means to live beyond cancer. 2 As AYA cancer survivors, we have developed identities as cancer professionals that have incorporated positive and negative experiences from our cancer journeys and turned them into motivation to improve the lives of other cancer survivors.
Cancer is a complex disease that affects physical, emotional, psychosocial, and financial well-being. AYA cancer survivors diagnosed between the ages of 15 and 39 are often left behind, as much of the focus for research and support is targeted toward pediatric and geriatric patients. When examining age-specific funding allocations, a recent review categorized participant populations only as pediatric, adult, all ages, or older than 65 years, notably excluding the adolescent and young adult population as a distinct group. 3 In a U.S. study, adolescent/young adult cancer survivors (N = 524) reported worse physical and mental health outcomes compared to healthy peers. 4 Most unmet needs in young adults are related to physical health, mental health, health-related quality of life, and fertility. 3 However, few interventions have been designed to meet the needs of this at-risk and underserved population. Young adults diagnosed with cancer are in a unique transitional developmental phase of life and may be in the heart of their careers, in college, or looking to start a family. 5 Cancer disrupts the social norms of life in a way different from children and seniors because of age and social context. AYA cancer survivors and professionals offer nuanced and deeply informed understanding of the distinct challenges faced by this population. Their lived experience and professional insight offer a valuable perspective that can inform patient-centered care models, program development, and policy. Recognizing and integrating their expertise within health care systems, research, and non-profits can enhance the responsiveness and relevance of services tailored to AYA oncology patients. As the population of AYA cancer survivors continues to expand, integration of survivors as professionals in the oncology field is not only timely, but also essential.
AYA cancer professionals working in the oncology field often face systematic barriers. AYA patients represent 4.2% of new cancers diagnosed in 2024 with the potential to live decades post treatment.4,6 However, AYAs are often not prioritized by health care systems and organizations. The inability to change systematic barriers can leave professionals feeling hopeless, questioning if real change can occur. Securing funding remains a persistent challenge in health care, research, and nonprofit sectors, particularly when working with a smaller subset of the oncology population. This issue is especially pronounced when addressing the longitudinal supportive and psychosocial needs of patients, which often receive less financial support compared to biomedical or drug development studies. A recent global analysis of cancer research funding revealed that only 4.1% of awarded grants focused on psychosocial and survivorship-related research compared to 45.5% awarded to cancer biology studies and 20.1% allocated toward drug treatment trials. 3
AYA cancer survivors working within the cancer community are uniquely positioned to contribute valuable expertise, unrelenting passion, and limitless empathy due to their lived experience. Their journey through the health care system has allowed AYA survivors to be helpful in navigating the complicated twists and turns of receiving quality cancer care, especially when thought of as “too young for cancer.” The cancer community extends beyond the hospital, and AYA survivors can bring together accessible community-based resources. AYAs have insight into what it means to be diagnosed with cancer and how to live with the late and long-term side effects of treatment. Understanding how to mitigate the challenges and the miscommunication between health care professionals and patients is an area they excel in due to their own personal experience.
It has been shown that health care professionals with high levels of empathy are more efficient in fulfilling their role by eliciting therapeutic change. 7 The connection that survivors have with fellow patients is instant because of shared lived experience and facing one’s own mortality at such a young age. Due to the importance of peer relationships for AYAs, the health care environment must recognize the important role of AYAs in cancer professions. 6 Research has shown the developmental importance of social support for this population. One study identified that knowing other AYAs who have experienced cancer was more important than social support from family and friends. This same study found that connecting with other AYAs encouraged a sense of group identity, which is a core developmental task in young people. 8
Survivors working in the field represent the essence of hope and the possibility of a prosperous future. Connecting AYAs with other AYA survivors can create social support role models or “cultural insiders” instilling hope for patients in active or recently completed treatment. 9 Our experiences indicate that research or programming created, implemented, and led by survivors for survivors builds trust and promotes open and honest communication. However, prior research has not examined this finding in the survivorship population.
Development of a strong and supportive network of resources shared between health care systems and cancer organizations to mitigate barriers to care and promote psychosocial supportive services is needed. Many cancer support organizations, such as Blood Cancer United (formerly the Leukemia & Lymphoma Society), Cancer Nation (formerly the National Coalition for Cancer Survivorship), Elephants and Tea, Stupid Cancer, and Cactus Cancer Society, offer free resources that health care systems can utilize to serve their patient population without cost. Empowering collective impact and co-design within the AYA community is the ultimate goal to best serve the unique needs of this population. The AYA oncology field is characterized by a tightly knit professional community, where many individuals are connected through shared experiences and involvement in key organizations. The authors of this article observe that leveraging social networks of AYA cancer survivors within professional domains fosters the development of robust support systems, facilitates the creation of meaningful tailored resources, and provides access to this hard-to-reach patient population.
While working in this space brings joy and healing, working and living within the cancer field as a survivor does not come without challenges. Reliving experiences, facing triggers, and facing systematic barriers to change can make working in this space difficult. AYA survivors are not provided with a “day off” from cancer when continuously facing the challenges of long-term survivorship. They often experience an ongoing cycle of survivors’ guilt, which grows as they encounter more survivors who struggle to find effective treatment or pass away. Working in this field serves as a constant reminder of cancer’s relentless and inequitable nature. Survivors often wish to share their story and the stories of other survivors for positive change. Networking with other survivors working in the cancer field can help individuals cope with the unique challenges faced when both working and living in this space.
Whether you are looking to hire staff or already work with someone who has personally experienced cancer, we encourage you to look at survivors as you build relationships and resources with patients. To foster meaningful engagement with AYA cancer survivors’ employers and organizations can play a pivotal role in fostering inclusive hiring practices by encouraging survivors to share how their lived experiences enhance their professional strengths. Survivors may choose to highlight this in a cover letter or during interviews, framing their journey as a source of resilience, empathy, and insight. To signal openness and support, hiring managers should consider including language in job descriptions that explicitly welcomes applications from cancer survivors. Additionally, engaging in outreach efforts such as participating in AYA-focused events such as Cancer Con and partnering with organizations such as Cancer and Careers demonstrates a genuine commitment to survivor inclusion and helps connect organizations with talented individuals from the AYA community.
A cancer survivor working with you in the field brings an increased level of empathy, trust, and personal knowledge only found with those with lived experience. We need professionals with training to advocate for whole-person culturally competent care in medical, psychosocial, and supportive services. Research calls for a better understanding of how to identify and address the unique needs of AYAs. 2 Could utilization of survivors in research, clinical, and nonprofit settings address this need? The authors have felt a calling to work in the cancer field and have each benefited tremendously, both personally and professionally. This is our way to give back to the community that saved us: creating our legacy, remembering those we have lost, and facilitating lasting change to positively impact the lives of others.
Authors’ Contributions
All authors contributed equally to the development of this article. A.T. was first diagnosed with AML in 1998 at age 4 and relapsed in March of 2021 at age 27. She is now in remission and using her voice to passionately raise awareness about the unique needs of cancer patients. During her time in active treatment, she used every opportunity to network, participate in psychosocial programming, and educate herself on resources available to patients in all stages of treatment. She is sharing her experience with The University of Cincinnati as a Research Scientist to research oncology primary care, cancer related cognitive impairment, community engagement, supportive services, AYAs, and survivorship. Alique is a Presidential Fellow for the Multinational Association of Supportive Care in Cancer. She is active with multiple national non-profits on advisory committees and as a volunteer and a member of the Stupid Cancer Board of Directors. V.P. was diagnosed with Non-Hodgkin’s Lymphoma a few days after celebrating her 25th birthday in 2013. After six rounds of CHOP-R, Veronika achieved no evidence of disease in 2014. Veronika currently serves as the Director of Advocacy and programs at Cancer Nation. She supports over 1,200 advocates that are a part of the Cancer Policy and Advocacy Team (CPAT). She empowers and educates cancer survivors, caregivers and survivorship professionals on the most pressing policy issues facing quality cancer care to facilitate their engagement in legislative advocacy. E.B. was diagnosed with acute myeloid leukemia (AML) in 2016 at the age of 34. She was found to have no evidence of disease later that year and was considered cured in 2021. This diagnosis changed the trajectory of her life. She felt a strong calling to “pay it forward” in the cancer space, so transitioned from a career in Sports Medicine to serving as the Director of National Patient Education at Blood Cancer United. In this role, she hosts The Bloodline podcast and assists in producing webinars and videos to educate patients and caregivers about their diseases. She also sits on the Blood Cancer United AYA Advisory Council with the mission to develop more unique programming for AYAs affected by cancer.