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AYA Medicine: A Specialty for Young Adults Fighting Cancer

If you are a teenager with cancer or in remission from a childhood diagnosis, you are not alone. There is a specialized medical field focused on your unique challenges: Adolescent and Young Adult (AYA) medicine.

Teens and young adults with cancer have a unique set of challenges and concerns that set them apart from children and older patients. They might be gearing up to go to college, living independently for the first time, beginning their career, or starting a family.

To meet the needs of these patients, a specialized medical field has developed called Adolescent and Young Adult (AYA) medicine. AYA medicine focuses on the treatment of patients between the ages of 15 and 39. According to the National Cancer Institute, about 89,000 AYA patients are diagnosed with cancer in the United States each year.

The Frontline spoke to Damon Reed, MD, director of the Adolescent and Young Adult Program at Moffitt Cancer Center in Tampa, Florida, to hear what young adults facing cancer need to know.

Your voice matters in making treatment decisions.

Dr. Reed says that AYA oncology lives in a middle space between the pediatric and adult models of cancer care. As in the pediatric model, AYA oncology makes it a priority to meet a caregiving team where they are. “You grieve with them,” says Dr. Reed. But similar to the adult model, AYA medicine caters to the patient, rather than leaving care decisions up to the parents.

“For many of my young adult patients, they are now able to dictate how they want their treatment to go and how they want to lead their lives. That sense of control makes a big difference.” — Damon Reed, MD

If a parent and a teen patient seem to have different risk tolerances towards chemotherapy, for example, Dr. Reed makes sure to discuss those differences with the patient and their family, who will have to make decisions together.

“For many of my young adult patients, they are now able to dictate how they want their treatment to go and how they want to lead their lives,” says Dr. Reed. “Whether they choose to continue with aggressive treatment or not — they are the ones to decide. That sense of control makes a big difference.”

Once patients turn 18, they have the responsibility of making their own cancer treatment decisions. This autonomy can be overwhelming, but it can also signal a positive shift.

Dr. Reed encourages his patients to ask their care team to repeat and explain things when needed.
He says that many of his young adult patients also choose to bring in family members or close friends for extra support.

If you hope to have biological children, you will have to think about fertility preservation.

Even if you are not ready to have children, it is important to consider your reproductive future before you begin treatments. Fertility preservation — in the form of egg or sperm freezing — can keep open the potential of starting a biological family, even after aggressive treatments.

“Part of our responsibility as AYA doctors is to provide the patient with as much information and resources as possible when it comes to preserving a patient’s fertility,” says Dr. Reed.

An oncologist who specializes in AYA medicine can make a big difference.

“Meeting the patient where they are in their individual cancer journey is essential,” says Dr. Reed. “Many patients are transitioning from pediatric care to the adult care model and that can be quite challenging.” Programs that specialize in AYA oncology can offer support to smooth this transition with social workers, nurse navigators, and psychologists. Some programs even have staff who explain the financial aspects of treatments and trials.

To find a doctor who specializes in AYA oncology, search this database. You can also ask your care team about in-person support groups or meet-ups that cater to AYA patients.

As his patients near the end of treatment, Dr. Reed provides a space for them to emotionally grapple with what they have been through. He asks patients two questions: What was the best thing that happened to you during your cancer? What was the worst thing? Underneath those questions is the real question: Have you been able to make some meaning out of your cancer?

“Not everything happens for a reason,” Dr. Reed says. “But you have to acknowledge that it happened, and you have to be able to move forward, somehow.”