At age 29, Natasha Nathan from Cambridge, Mass., was a typical young woman who enjoyed going out with her friends and teaching yoga. She was looking forward to turning 30 soon, and cancer wasn’t anywhere on her radar. But at the end of January 2022, she developed a sore throat that just wouldn’t go away. She underwent tests for COVID-19 and strep, and both came up negative. A round of antibiotics didn’t help, either.
Swelling soon emerged on one side of her throat. Nathan consulted five separate healthcare providers, but neither surgery nor further tests could reveal the source of the problem. Over time, the swelling became a serious airway risk. Nathan wound up in the ICU at Massachusetts General Hospital, where a tissue biopsy revealed that she had rhabdomyosarcoma, a rare type of cancer usually found in children.
Nathan’s birthday was just two weeks away. Now, a mere 48 hours after being diagnosed, she was starting chemotherapy. The young woman watched as the life she once knew shifted. “I had to learn to adapt to this ‘new normal,’ as my peers got married, got promoted, bought houses, went on vacations, et cetera,” she recalled.
Cancer is a big life disruptor for anyone, but it brings special challenges for those under 40, who may not know anyone else with the disease. To better serve their needs, Mass General recently launched the Adolescent and Young Adult (AYA) Cancer Program, connecting individuals aged 15 to 39 with its vast network of resources. It uses those to facilitate private counseling and support groups, exercise and nutrition consults, free wellness services (yoga, acupuncture, music therapy), coping and self-care sessions, and clinical visits that aim to preserve sexual health and fertility, among other things.
Going Where the Need Is
The AYA Cancer Program was originally inspired by a Mass General patient in his 20s, according to program director Annah Abrams, MD, a psychiatrist who specializes in the psychological and behavioral impact of cancer. The young man told hospital staff that people in his age group needed better resources to deal with the disease, adding that he often felt out of sync with the pediatric and elderly cancer patients he encountered. When the man passed away, friends of his began fundraising for a program that could help other adolescent and young adult patients.
In June 2022, Mass General Cancer Center launched a pilot version of the AYA Cancer Program using those funds. Its new program manager gathered information from young patients about what they needed, and helped pair them with relevant clinicians, groups, and resources. For example, if someone was struggling to meet the challenges of cancer treatment, they might be referred to the hospital’s Mind Body Medicine program for stress management and resilience training. Existing solutions were frequently customized to meet the specific needs of the adolescent and young adult population.
Nathan is among those who have benefited from the program. About a year after her symptoms appeared, she used it to meet other patients who could help her transition from treatment back into regular life. The AYA Sarcoma Support Group connected her with services and ensured that she felt less alone. “Hearing what other participants are doing to support themselves [and] what parts of the AYA Cancer Program they are utilizing has helped me find resources I wouldn’t have otherwise considered,” she said.
Since Mass General has an adult and pediatric program in the same location, it’s in the unique position of being able to help AYA Cancer Program patients from both ends. As Dr. Abrams pointed out, a 21-year-old may feel like an adult, but their disease might be classified as pediatric. Thanks to the hospital’s offerings, that patient could receive medical treatment from a pediatric oncologist but still see a sexual health provider and get a referral to an adult reproductive endocrinologist.
Moving Forward
The AYA Cancer Program has clearly been successful at helping young patients thrive in the wake of their diagnosis. But the program is still relatively new, and will continue to develop around participants’ feedback. In its first year, it was able to assist at least 100 individuals—and Dr. Abrams said she hoped that eventually it will reach the more than 2,000 adolescents and young adults treated for cancer at Mass General every year.
For her part, Nathan said she is feeling much better these days. She has already finished her last round of cancer treatment and is being monitored to make sure an old tumor continues to shrink. She is moving forward, but hasn’t left the program yet.
“I still utilize the AYA Cancer Program, because when cancer treatment stops, the experience doesn’t,” she explained. “It stays with you forever.”
