The Unique Experience of Having Cancer as an Adolescent or Young Adult    

Coping with cancer is never easy, but there are special challenges for people between childhood and full-fledged adulthood.

Adolescents and young adults diagnosed with cancer can find themselves caught between two worlds—children with cancer and adults with cancer—at what is already an emotionally charged time of life.

That’s why the Adolescent and Young Adult (AYA) Cancer Support Program at UNC Lineberger Comprehensive Cancer Center focuses on patients ages 13 to 40.

While this is a big age range, what unites this group is that they are on the cusp of independence and in a period of great transition. “Unfortunately, they are faced with a cancer diagnosis at a really critical time of development,” says Lauren Lux, LCSW, program director.

Kathleen Lowry was diagnosed with Hodgkin’s lymphoma at age 23.

Kathleen Lowry was in the middle of that age range when she was diagnosed with Hodgkin’s lymphoma in 2018 at age 23. A graduate student studying information sciences at the University of North Carolina at Chapel Hill, the Elizabeth City native says that when she was first diagnosed, she felt lost. The vast majority of adults diagnosed with cancer are 50 and older.

“I’m not young enough but not old enough. It was isolating,” Lowry says.

She went to treatments alone because her family lives nearly four hours away. “I wanted to be with my parents but also was finally feeling like I was old enough to not need my parents, and I tried to protect them. It was a very big first jump into adulthood for me.”

Lux says this is a common dilemma for adolescents and young adults with cancer. “There’s a lot of education that goes on about how to advocate for yourself, how to ask questions of your medical team and vice versa.”

Cancer Types and Treatments for Young People

Cancers that typically affect people in their teens and 20s include:  leukemia, lymphoma, melanoma, thyroid, ovarian and testicular cancers, brain tumors and sarcomas. As patients move into their 30s, more breast and colon cancers are diagnosed.

While cancer in this age group is not as common as older adults, there are more than 70,000 AYAs diagnosed in the United States each year. Unfortunately, the cancer survival rates for these teens and young adults have not improved as rapidly as they have for other age groups.

Andrew Smitherman, MD, MSc, medical director of the AYA program at UNC Lineberger, says this is because more research is needed to better treat cancers in this group. Clinical trials are the best way to find better treatments, but this age group has the lowest enrollment in clinical trials. That lack of participation affects survival rates, Dr. Smitherman says.

Preserving Fertility and Addressing Side Effects of Cancer Treatment

A positive for young people with cancer is that they can tolerate more intensive therapy than older patients who tend to have other health problems or comorbidities such as high blood pressure, coronary artery disease or diabetes.

However, toxic treatments such as radiation and chemotherapy can have negative effects on other parts of the body, including the reproductive organs. So on top of dealing with cancer treatment, this age group also faces decisions about fertility preservation, often much earlier than they normally would consider their reproductive plans.

“It’s not something a 13- or 14-year-old would usually be thinking about, and now they’re forced to think about it,” Lux says.

And because this demographic is treated at a young age, they may experience the side effects of their treatment for a longer period of time than an older person would—simply because they have so many decades of life left.

“They have some unique, ongoing medical needs that we try to address,” Lux says. These include mental health struggles, weight gain/lack of exercise and physical activity, worse health behaviors than the general population (activity, diet, smoking, drinking), sexual health, cognitive changes and physical appearance or body image concerns.

The Psychosocial Effects of Having Cancer as an AYA

Of course, the experience of cancer goes far beyond physical changes to the body.

“One of the unique things about the AYA population is the interplay between the medical issues and psychosocial issues that are happening during that time,” Lux says.

For example, young adults can be uninsured or underinsured.

“You come off your parent’s insurance at the age of 26 and then what do you do if you’re not employed or married to someone with insurance? Your insurance status can impact your ability to be diagnosed and to receive treatment,” Lux says.

Unfortunately, this means treatment can get delayed.

“Financial status at this age has a big impact on time to diagnosis, on where they get treated, on their ability to get to where they’re supposed to be for treatment and just to be able to afford the cost of cancer care,” Lux says.

“We have a lot of people who are popping into emergency rooms over and over again and they come to us six months later with a lymphoma diagnosis that had been treated as an infection with antibiotics.”

In addition, Lux says young adults don’t access support services in the same way that older adults do, so the AYA program at UNC Lineberger tries to connect them with the help they need by providing:

    • One-on-one support with social workers
    • Programs and events for patients
    • AYA-specific financial and emotional resources
    • Connections to peer support
    • A survivorship clinic in coordination with visits to patients’ primary oncologists and primary medical providers to ensure patients continue with recommended screenings, surveillance and follow-up care needs based on their cancer treatment

Lowry says being able to connect with other people her age going through cancer treatment through various outings, such as a night out bowling or dinners organized by the AYA support program at UNC, helped her cope in a healthy way.

“We bonded very quickly,” says Lowry, who is now in remission. “They just already knew what I was going through without me having to say it.”

Learn more about the Adolescent and Young Adult (AYA) Cancer Support Program at UNC Lineberger Comprehensive Cancer Center or call (984) 974-8686. If you’re concerned about your cancer risk, talk to your doctor. Need a doctor? Find one here