Adolescent and young adult (AYA) cancer survivors—those between the ages of 15 and 39 years— often feel very isolated, according to Christina Miller, LCPC, OPN-CG, AYA Navigator and Director of the Ulman Foundation.
These years of their lives are already full of uncertainty in regard to the many choices that shape adulthood: things like education, career, social circles, and values. But when a cancer diagnosis is thrown into the mix, their friends don’t know how to relate, and they become “like a man on an island,” she said at the AONN+ 10th Annual Navigation & Survivorship Conference.
According to the Surveillance, Epidemiology, and End Results program data from 2018, 85,000 patients in the United States aged 15 to 39 years are diagnosed with cancer each year, and the most commonly cited barriers to care faced by these patients are social isolation, fertility preservation, financial needs, and survivorship. Although these are many of the same issues faced by survivors in other age-groups, they are often experienced in completely different ways.
“AYAs are not [pediatric patients], and they’re not really adults. Technically, they’re adults if they’re over 18, but the gap that exists is psychosocial for these patients,” said Ms Miller. “They are typically diagnosed later than the average patient, it takes longer for them to get a diagnosis, and they are experiencing so many transitions in life that they really need the extra attention that organizations like ours are dedicated to giving them.”
The Ulman Foundation works with several hospitals in the Baltimore area to provide navigation services for AYAs, services that are often desperately needed but underutilized by patients in this age-group. Through the foundation, in-hospital AYA patient navigators are able to meet patients at diagnosis and travel with them throughout their cancer experience. “Our navigators are there to help hold the whole person together, not just to deal with their diagnosis,” she said.
The organization also provides remote navigation services to anyone in the country. “Other healthcare providers can call us to talk about resources, and we can share what might be helpful for their patients,” she added. “It’s how we reach the 70,000+ young adults who are diagnosed every year.”
Megan Cannone, LCSW-C, an AYA Navigator at Anne Arundel Medical Center, one of the cancer centers working in partnership with the Ulman Foundation, noted that compared with their younger and older counterparts, fewer patients in the AYA population participate in clinical trials. Additionally, many are uninsured or underinsured; some might have aged out of their parents’ insurance plans, and some might have plans of their own that simply don’t cover the high costs of cancer care.
“It’s hard even for me to understand the constant changes in health insurance, what’s covered and what’s not covered,” she said. “So, imagine a young adult with no experience trying to figure out what policy to buy, and trying to understand things like copays.”
Delayed diagnosis is another major problem faced by patients in this age-group. Ms Cannone runs 2 AYA support groups a month (social outings that she says provide them with a much needed sense of normalcy outside of the hospital) and has identified a significant distrust of the healthcare system among her patients. “Over and over, these young men and women went to the doctor and were told they were too young to have cancer,” she said. She mentioned a young mother she worked with whose baby wouldn’t take to the breast in which she had cancer. She was repeatedly dismissed by doctors until 2 years later, when she was finally diagnosed with stage III breast cancer. Had her concerns been heard, she would likely have been diagnosed at an earlier stage.
Understanding the late effects of cancer is another common hurdle for AYAs. According to Ms Cannone, many of these patients don’t yet possess the maturity to understand and process the impact of side effects like cognitive or sexual dysfunction. “I’m thankful to be there to normalize these things and help to make referrals,” she said. “They’re sometimes afraid to talk to their doctors. They often feel like a number rather than a human.”
Simple strategies can help alleviate some of the stress on AYAs at diagnosis. Most 19-year-olds are years away from even considering having children, but if they don’t make that decision at diagnosis, before starting treatment, their reproductive life will be forever changed. “Our team is there to provide that information and give them a referral to a reproductive endocrinologist so that they can get a baseline understanding of how their treatment may affect their reproductive life,” said Ms Miller. Ms Cannone added that she keeps sperm banking kits at the ready in her office. “If there’s an emergency and there’s no time for a young man to go to a reproductive endocrinologist, I have the kit right there; it’s taken care of.”
After treatment is over, many AYAs experience depression and anxiety. Reaching out at this point to touch base, provide therapy, and make referrals to additional cancer support services can help patients from feeling like they got left behind. “After treatment, they feel this extreme pressure—to be happy, to get their act together, to be the mom they used to be, to get back to work, to have sex—these issues need to be talked about and addressed,” she said.
Ms Miller stressed the importance of physician and nurse navigator champions who understand the need for specialized navigation services for AYA patients and who are open to making room for these important members on the multidisciplinary cancer team. “It’s a puzzle piece,” she said. “And we have to work diligently to make sure we’re meeting the expectations of the patients, hospitals, and stakeholders.”
