“I was looking at support services in counseling and social work, but I realized there’s not really a program to help those patients in survivorship,” she said. Needs such as preventing secondary cancers, fertility issues, finishing college when life was interrupted by a cancer diagnosis, or just starting adult lives are very different from those of people diagnosed at age 60 or 70, Gundelach said. “Cancer systems need to be aware of that and develop materials that can help these patients’ unique needs.”

The number of adolescent and young adult (AYA) patients with cancer aged 15–39 is rising, and the population’s wide age range only adds to the complexity for both patients and clinicians. ONS member Katherine Donahue, MS, RN, CPNP, a pediatric oncology nurse practitioner in the Center for Cancer and Blood Disorders at Children’s National Hospital in Washington, DC, said that, for example, a 15-year-old survivor and a 39-year-old survivor may not actually have much in common with one another, let alone with pediatric or older adult patients.

AYA individuals may feel very alone, stuck between the pediatrics department and a clinic filled with older adults, Donahue said. Their friends from before their diagnosis simply can’t relate to what they’re going through, which can include a range of heavy emotions that may not be relevant to a healthy teen or young adult peer.

“This age is marked by perhaps the greatest number of significant life transitions that one may incur, and adding on a cancer diagnosis during this time can cause significant disruption that can have long-lasting physical and emotional effects,” Donahue said. “AYAs need developmentally appropriate support at all stages of their cancer trajectory to maintain their quality of life.”

AYA Survivors Have Complex Emotional Needs

AYAs experience significant changes in their emotional and social development as they develop abstract thinking, independence, and deeper relationships with those outside of their family. Donahue emphasized that a disruption in the normal growth and development during this critical time of finding their sense of self can have short- and long-term effects on their self-esteem, self-regulation, and relationships with others, which often exhibit as anger. 

“They should be angry! None of this is fair to them,” she said. However, the oncology nurse’s role is to support the patient throughout care. “They are your patient, and building a relationship with them takes patience, trust, and commitment. They need confidence and compassion, and nurses are in the best position to give it to them.”

During active treatment, oncology nurses can help their AYA patients by setting goals for each day, which includes integrating the things they need to do with the things they want to do. Donahue said to ask patients who can or should be involved in their care—parents, partners, siblings, or friends—to obtain approval to discuss their care with those individuals.

Don’t assume a patient has a support system, either. “Make sure this information is shared with the entire healthcare team so they do not have to repeat themselves over and over again,” Donahue said. She encouraged oncology nurses to maintain transparency and closed-loop communication that involves and supports the patient and their team, whether parents, partners, siblings, or friends, in each step.

AYA Survivors Prefer Organic Social Support

Although the traditional support group format, where participants sit down together and share their experiences, is well-suited for many older adults, Gundelach said that younger patients tended to prefer different forms of support, what she describes as “more organic” ways to connect.

“They want to get together and meet others who’ve been on the same journey,” she said. “Their friends at home sometimes don’t know they’re going through this—they keep it to themselves. It’s about creating that space for them to share these things.”

Gundelach’s program began organizing meetups, where AYA survivors can do casual activities together, such as playing baseball and soccer, touring a brewery, carving pumpkins, visiting local botanical gardens, and doing an escape room activity. They can briefly put aside their cancer history but also recognize that everyone there has a similar underlying understanding and shared experience.

“When they get together, it’s casual; it comes as it comes,” Gundelach said, but eventually, survivorship-related conversations happen. “The meetups create an environment that’s safe and comfortable with people who understand. There is a quietness underlying the healing.”

But be mindful that priorities change—sometimes quite quickly—in young patients’ lives. Donahue noted that, although they may crave in-person, human connections, they also may be hard to track after active treatment ends because of school, work, childcare, or other activities. In those situations, online support is also helpful. It enables a broader reach among rural and urban areas and patients receiving care in adult or pediatric settings.

Another advantage to online meetups is the flexibility to attend from the comfort of home, Donahue said. Some AYA survivors may have difficulty meeting in person because of long-term effects from their treatment, such as fatigue, hair loss, post-treatment trauma, or depression. “Joining these groups, wondering if they will have other people like you or your age, can be very intimidating, and having the option to attend online can help an AYA ease into a group,” Donahue said. She said that meetings cover a wide range of topics, such as how to talk about your cancer diagnosis with a partner, how to obtain insurance and find a job, and how to journal to cope with feelings.

Most online groups are community-based organizations started by cancer survivors or caregivers who want to give back, Donahue said. Some areas have local hospital-based support groups run by patient and family services or social workers, and several national resources (see sidebar) can connect AYAs, as well.

Build Your Own AYA Survivorship Support System

For individual nurses or institutions looking to create a local support program for AYA survivors, Donahue and Gundelach both said to start by listening.

“My first advice is to ask your AYA patients what they want,” Donahue said. “Help them codesign a group that is meaningful to them and addresses their wants and needs, not what we think they may want or need.”

Gundelach said listening is a core part of the oncology nurse’s role that is vital to patient care. By talking to young people directly and building on existing resources, she was able to support development of the AYA-specific group at UNM, which continues to grow.

UNM Cancer Center sponsored four young people to attend Stupid Cancer’s 2022 CancerCon. The delegates learned valuable information that helped to inform the center’s survivorship program and network for young adults. A subsequent group of six young adults attended the conference in 2023, and Gundelach said she plans for a delegation to attend in 2024 as well.

Two of the biggest challenges when creating AYA-specific survivor groups are resources and engagement, Donahue said. First, a program’s organizers need to have a pulse on the AYA cancer community and the population’s developmental needs. Depending on the format, resources like meeting space and seed money for materials (e.g., printed documents, games or activities, snacks) may be needed. AYAs may not want to come back to the treatment site, so free meeting space in the hospital may not be the best option.

“It is also important to think about what the focus is of the group that is being created. Is it a support group? Is it a social group? These are big issues, given there are competing priorities such as school, work, and families that demand time and energy. There may be little reserve left to do even one more thing above and beyond what they’re already doing, especially if they still struggle with effects like fatigue,” Donahue said. She recommends that groups consider partnering with a social worker, other neighboring hospitals that also treat AYA patients, and community organizations that could support efforts such as advertising, meeting space, and additional resources.

Gundelach said that until she began working on the AYA-specific program, she didn’t realize how truly different the population is compared with older adults. She advised other nurses to educate themselves and attend conferences so they can better understand and anticipate AYAs’ needs.