Sometimes it’s good to be a newbie in the AYA (Adolescent and Young Adult) world. Thanks to a grant from Teen Cancer America, I started working with Pam Simon in the Stanford Adolescent and Young Adult Cancer Program (SAYAC) in June after spending several years working in adult cancer survivorship. I was immediately impressed with all the information that TCA had available for new coordinators: recordings of the Monthly Drip, links to program manager presentations and plenty of information on the website. This is great for a new coordinator who doesn’t want to reinvent the wheel since many institutions face similar issues and challenges.
One of the first projects I started on was the launch of a new clinic within our adult Cancer Center for young adult survivors of childhood and adolescent cancer. We call this clinic the GREAT Survivorship Clinic which stands for Getting Regular Evaluations After Treatment. Immediately some of the differences between the older cancer survivors I had been working with and these young adults struck me. As I worked with our AYA Advisory Board I heard stories from members about their experiences transitioning into the world of adult medicine. One member told me how she could not find an adult oncologist who was willing to follow her because nobody felt like they knew enough about her type of childhood cancer.
Many of these young adults have been treated intensively as children/teens and they face more late effects such as cardiac, pulmonary and endocrine problems, osteoporosis, second cancers and fertility problems, as well as cognitive and psychosocial problems. Of course older adult survivors of cancer can develop these conditions from their cancer treatment, but the AYA survivors are developing multiple chronic conditions in their 30’s and 40’s, rather than in their 60’s, 70’s and 80’s. Yet these young adults in their 20’s and 30’s feel “invincible” and if they are not experiencing symptoms, they may not be getting any regular care from oncologists or primary care so some of these conditions may go untreated. One of our first patients in the clinic had not had any follow up care for more than 10 years!
Prior to opening this clinic, there wasn’t a medical home for these young adults to be seen. One of the problems for AYA’s is that they are an “in-between” group, not comfortable with the toys and stuffed animals of pediatrics but not adept at managing their healthcare with adults who are often decades older than they are. Young adults need help making the transition to adult medicine. If we don’t reach out to them (repeatedly), they continue to fall out of care.
One of the most striking issues we see in survivors who were diagnosed as teens is the disruption that occurs in their lives just as they are going through major transitions from childhood to adulthood. Major events such as going to college, getting a first job, marriage and starting a family are delayed or complicated by cancer. These patients often have unique life circumstances that make their survivorship concerns and their support networks quite different from their older counterparts. Young adult cancer survivors really benefit from discussing these life issues with a social worker or other person knowledgeable about this age group. One of our clinic patients needs help getting insurance because he will be dropped from his parents’ insurance soon. Another patient is really anxious to find out whether the sperm he preserved years ago can be used to start a family now. It’s a challenge to provide comprehensive care that includes important referrals for cognitive testing and education/career support, financial assistance, sexual health, fertility and mental health.
Finally, it is clear that support from peers is often crucial during and after treatment. Many of us have seen our own teens and young adult children suffer from the loss of contact with their peers during the pandemic. Imagine adding a cancer diagnosis and the loss of independence that can happen if the young person needs to move back in with their parents. Moving out and back to the independence they crave may be difficult after treatment and both the patients and family need encouragement to help this happen. One of our first GREAT Clinic patients commented after her visit, “I’m so glad to be treated like an adult and given all the information I need!”
I know that the impact of hearing patients’ stories and seeing the struggles they face is stronger because it’s new but I hope I can keep learning like a newbie for a long time.