Q&A on cancer in adolescents and young adults

By Nicole Brudos Ferrara

People ages 15 to 39 who are diagnosed with cancer are considered adolescents and young adults, or AYAs. While some AYAs with cancer receive care in pediatrics, most receive care in adult care settings. Adolescents and young adults don't fit well in pediatric or adult cancer care. They may be students in high school or college. They may live with their parents or on their own. They may be married and have a family, or they may be thinking about starting one.

Allison Rosenthal, D.O., a Mayo Clinic hematologist-oncologist, is leading an effort at Mayo Clinic Comprehensive Cancer Center to launch a program to help adolescent and young adult patients get the age-appropriate care and support they need. The program will include cancer specialists, social workers, health psychologists, and financial and vocational counselors. It also will help AYAs transition from pediatric to adult care and plan for cancer survivorship.

In this Q&A, Dr. Rosenthal explains why living with cancer is different for adolescents and young adults:

Q: How is receiving a cancer diagnosis different for adolescents and young adults than other age groups?

A: It's not the same as being diagnosed as a child at 10 or 12 years old or as an adult at 55, 65 or 75. If you think about what people in this age group are going through, a lot of life transition is happening. This group has many needs regarding psychosocial development and trying to establish identity and independence, including financial independence. Some of them are still in school, and some of them are trying to start families. Fertility also can be impacted by cancer and its treatment, making conversations about fertility preservation essential.

There's never a convenient time to be diagnosed with cancer, but cancer diagnosis is particularly inconvenient for this group. And they often get overlooked because people don't recognize that cancer is common in this age group.

Q: Are adolescents and young adults diagnosed with different types of cancer than other age groups?

A: People of any age can get any cancer, but some cancers are more common in adolescents and young adults. And while the numbers change periodically, the most common at this point are thyroid, breast and blood cancer, and melanoma. There's been a rise in gastrointestinal cancers (cancers of the esophagus, stomach, pancreas, liver, colon and rectum) in this group, as well, for reasons we're still trying to sort out.

Q: Are cancer care and treatment different for adolescents and young adults than for patients in other age groups?

A: They can be. Some of these patients — largely older teens— are treated in the pediatric setting. However, some pediatric programs are comfortable caring for people up to age 25. I specialize in lymphoma, so I know the most about blood cancers and the differences in treatments for those cancers. There is a vast difference in what would happen if you were 18 and diagnosed with Hodgkin lymphoma and treated at a pediatric cancer center versus if you were diagnosed and treated at an adult cancer center. Pediatric and adult treatments for Hodgkin lymphoma are designed differently, and the short- and long-term side effects of those treatments are different. Health care professionals who treat AYAs for cancer must coordinate pediatric and adult care to ensure they offer the best treatment for each patient regardless of age.

Survivorship care that focuses on the needs of adolescent and young adult patients as they move forward is critical. Most AYAs who receive cancer care will do well in the long term. But we must monitor them for long-term treatment side effects and maintenance of healthy behaviors to ensure these patients receive the full-service care they deserve.

Q: What disparities affect adolescents and young adults?

A: Regarding diagnosis and care, adolescents and young adults with cancer face real disparities. This is an underdiagnosed, underserved and under-recognized population.

One of the most significant issues for adolescents and young adults is a delay in cancer diagnosis. With a delayed cancer diagnosis, the disease is more advanced, with more aggressive treatments and potential for long-term side effects.

There is also a gap in access to appropriate care for adolescents and young adults with cancer, including age-appropriate support for what they're going through and cancer centers with expertise in caring for AYAs.

Health insurance coverage is also a challenge for AYAs with cancer. They might not have insurance because they have aged out of coverage through their parents' insurance. Or they've gotten married, started a family and are on their spouse's insurance, which doesn't provide adequate coverage.

If you lump these issues in with the racial, ethnic and socioeconomic challenges that any patient with cancer may face, adolescents and young adults cope with significant disparities. Health care professionals have a lot of work to do in this space.

Learn more

Watch Dr. Rosenthal discuss cancer in adolescents and young adults in this "Mayo Clinic Q&A" podcast video:

Learn more about cancer in adolescents and young adults.

Join the Adolescent and Young Adult (AYA) Cancer Support Group on Mayo Clinic Connect, an online community connecting patients and family caregivers.

Also, read these articles:

• "Fertility preservation: Understand your options before cancer treatment"
• "What you should know about thyroid cancer in adolescents, young adults"
• "‘She has big things ahead of her.’ CAR-T cell therapy gives Florida teen hope"
• "Support group buoys young adults with cancer"
• "Meeting the unique needs of adolescents and young adults with cancer"