Caught in the Middle

INSTEAD OF STARTING HER SOPHOMORE YEAR of high school in fall 2013, Lauren Telesz spent most of the term in Yale New Haven Children’s Hospital in Connecticut, receiving chemotherapy for stage IV Hodgkin lymphoma. Besides facing the challenges of cancer itself, the 15-year-old felt isolated. Her friends from school were heading to the homecoming dance while she was surrounded by younger children in the hospital, where the treatment room was decorated with cartoon images of Dora the Explorer and PAW Patrol. Telesz says she had a relatively smooth treatment experience, but along with brain fog and losing her hair, she felt acutely the loss of her teenage freedom and independence.

Cancer affects about 90,000 adolescents and young adults (AYAs) in the U.S. each year. Defined by the National Cancer Institute (NCI) as anyone from 15 to 39 years old, AYAs like Telesz are considered distinct from children and adults with cancer—and they often fall through the cracks when it comes to benefiting from treatment advances and social support. A 2020 study in JAMA Network Open that looked at cancer registry data for nearly 500,000 AYAs found that cancer rates increased by nearly 30% between 1973 and 2015, with kidney cancer increasing at the greatest rate, along with rises in gastrointestinal cancers, testicular cancers and melanomas. And while there has been significant progress in reducing cancer deaths in younger children and older adults, less progress has been made when it comes to AYA cancers, according to a 2006 report by the NCI and the Children’s Oncology Group.

While the overall number of AYAs with cancer is small compared to older adults with cancer, the wide age range of this group encompasses people going through a variety of transition points in their lives. AYA survivors can range from high school students like Telesz to people in their 20s starting careers to those in their 30s establishing homes and families. In any of these age groups, cancer can significantly alter a person’s life trajectory, a disruption that research has shown can persist for years.

Now, researchers, survivors and patient advocacy groups are trying to bring more attention to AYAs—hoping to improve how cancers are treated and to support people in this age group as they navigate diagnosis, treatment and survivorship. For AYAs, cancer is “very isolating and very hard for people,” says Rebecca Johnson, a pediatric hematologist-oncologist who runs the AYA program at Mary Bridge Children’s Hospital in Tacoma, Washington. Addressing concerns with expanded access to clinical trials, standardized treatment protocols, increased financial support and more focused psychosocial assistance can improve care for AYAs with cancer, she says.

Later Diagnoses

One challenge to making AYA cancers more visible is that it can be hard to even imagine a thriving teen or young adult having cancer. Telesz says she was busy studying for a standardized test, working with kids at a summer program and going to the beach with friends, so at first, her exhaustion seemed expected, both to her and to her health care providers. This mindset can lead to a later diagnosis for people in this age range compared with older people, Telesz says.

Many AYAs diagnosed with cancer have heard they’re too young and healthy to get the disease, says Alison Silberman, the CEO of Stupid Cancer, an organization that supports AYAs with cancer. Silberman’s own brother went through appointment after appointment with “every specialist under the sun” before being diagnosed with Ewing sarcoma in 2006 when he was 24. A 2018 study of more than 800 cancer patients ages 12 to 24 published in the Lancet Child & Adolescent Cancer found that more than one-third had at least three consultations with a general practitioner before referral to a specialist.

Such delays can mean a young person’s cancer is more advanced when diagnosed than it would be in older patients. A study presented at the 2021 Gastrointestinal Cancers Symposium found that 62% of AYAs with colorectal cancer waited between three and 12 months before visiting a doctor after first noticing symptoms, and that three-quarters of them had to see at least two doctors before being diagnosed correctly. Those who saw three or more physicians were more likely to be diagnosed with advanced cancers. This is especially concerning because colorectal cancer is projected to increase in people under age 50, especially in those between the ages of 20 and 34, the researchers reported. Increased awareness about cancer in teens and young adults—the most common cancers in 15- to 24-year-olds are lymphomas and thyroid cancers, while breast and thyroid cancers are the most common in young adults ages 25 to 39, according to the NCI—may help improve the speed of diagnosis, Silberman says.

Treatment Uncertainty

Even when a cancer diagnosis has been made, it’s often not clear how or where to treat cancers in this in-between group, says Caitlyn Barrett, the senior director of research and programs at CureSearch, an organization that helps fund childhood and adolescent cancer research. Some hospitals and cancer centers may not have much experience treating younger patients with cancers like breast cancer or colorectal cancer, which are common among older adults. These patients “are often shuffled between different cancer centers because no one knows what to do with them,” Barrett says. They may also feel out of place, often sitting in waiting rooms with other patients who are much older or younger.

In 2006, Brittany McKelvey was diagnosed with thyroid cancer at age 13 and had surgery to remove the gland at her local hospital in North Carolina. With radiation therapy up next for her, the doctors there “realized quickly they didn’t have the expertise to deal with a young person with thyroid cancer,” says McKelvey, now a science policy analyst at Friends of Cancer Research in Washington, D.C. She went to Memorial Sloan Kettering Cancer Center in New York City to continue her treatment, which took place in a pediatric department featuring coloring books and visiting clowns. (The center has since expanded its AYA program, including establishing the Lisa and Scott Stuart Center for Adolescent and Young Adult Cancers in 2021.)

McKelvey’s struggle to find the right fit continued as she started thyroid hormone replacement medication. For adult patients, the dose typically remains the same after finding the appropriate level. But as McKelvey grew from a teen to a young adult, her doctors had to match the dose to her body’s changing needs. Determining the right dose was important: Too much thyroid hormone can cause symptoms like anxiety, sleep trouble and a racing heart. Without enough thyroid hormone, she says, “you feel like you’re walking through mud.”

Finding the right therapeutic dose for AYAs is an issue for other cancers too. Two blood cancers, acute lymphoblastic leukemia (ALL) and lymphoblastic lymphoma, are on the rise in AYAs, but there is uncertainty around whether adult or pediatric treatment regimens are more effective. A 2018 review in JAMA Oncology found that following a pediatric treatment plan for AYAs with these blood cancers often provides the most effective therapy, but not all cancer centers have adopted this approach.

Researchers are also exploring how cancer may differ biologically in this age group. Breast and colorectal tumors in AYAs tend to have more mutations than similar tumors in older adults. These differences can affect the course of the disease: While only 5.6% of breast cancers are diagnosed in people under 40, these cancers are often more aggressive and have a worse prognosis. “It’s an area that’s ripe for more research and more study,” McKelvey says.

Expanding Clinical Trial Access

Researchers now know more about how to treat cancer in children and in older adults because these groups have been the focus of extensive clinical trials. Few clinical trials study AYAs as a separate group, instead placing them in studies alongside children or older adults. Clinical trial enrollment among AYAs has historically been low, and several studies have shown that at pediatric institutions in particular, a major gap exists in clinical trial enrollment between AYAs and children. Often this is because fewer clinical trials are available to these AYAs.

Patients without insurance, those who are between 35 and 39, and those being treated at adult cancer centers are less likely to enroll in clinical trials than those between 15 and 19, insured patients and those treated at pediatric cancer centers, according to a 2011 study in the Journal of Clinical Oncology.

Recent work to improve the availability of clinical trials for AYAs has started to yield results. Many research and clinical trial groups have established AYA committees and begun including younger patients in trials. Using data from medical records, researchers examined clinical trial enrollment in more than 3,000 AYAs with lymphoma, ALL and sarcoma, and found that clinical trial participation increased from 14.8% to 17.9% between 2006 and 2013, according to a 2018 study in Pediatric Blood & Cancer. “In the past five to eight years, there’s been a lot of work to expand the age range for clinical trials for cancers that strike AYAs,” Johnson says.

The passage of the Research to Accelerate Cures and Equity (RACE) for Children Act in 2017 may encourage development of new treatments for AYA cancers too, McKelvey says. The RACE Act requires companies applying for approval for certain types of drugs for adult cancers to also study these drugs in pediatric patients. When McKelvey and her colleagues studied new applications to the Food and Drug Administration, they found that in the first year after the act was implemented, there was a significant increase in drug applications carrying the requirement to study the drug in pediatric patients. Studies looking into these therapies now might not wrap up until as late as 2028, but McKelvey says the act is a first step toward expanding access to clinical trials for AYAs.

Big Changes

Only in the past few years have studies emerged that examine how cancer affects quality of life for AYAs. A recent study found that about 20% of phase III clinical trials in AYAs looked at these issues, which can include struggles with relationships, mental health challenges and financial toxicity. Whether shifting a career or creating setbacks for school, for many young people, a cancer diagnosis represents a detour from reaching the milestones associated with adolescence and young adulthood, Johnson says. When they look around, they see “their whole peer group is graduating, getting jobs, maybe getting married and having babies.”

Johnson would know. As a second-year internal medicine and pediatrics resident in the 1990s, she was diagnosed with an aggressive form of breast cancer that had a five-year survival rate of 60%. Not only was her treatment challenging, she says, “it was such a huge existential crisis to be 27 and diagnosed with a potentially fatal disease.” The crisis changed the course of her career: Instead of pursuing medical genetics, she became a pediatric oncologist.

Missing developmental milestones can take a toll. Johnson says that a year after a cancer diagnosis, as many as 40% of AYA survivors experience moderate to severe post-traumatic stress symptoms. “Unfortunately, those psychosocial issues do not get a whole lot better with time,” she says. A 2022 study in the journal Cancer found that more than 11% of AYA cancer survivors report psychological distress 20 years or more after their diagnosis.

At Seattle Children’s Hospital, Johnson established one of the first programs in the country for teens and young adults with cancer, offering educational materials, social support, and connections to research and clinical trials, all specifically aimed at AYAs. In 2013, the hospital opened a first-of-its-kind 16-bed inpatient AYA cancer unit. Along with providing focused treatment, she and her colleagues worked to create a place that allowed teens and young adults to find the emotional support they need from their peers. “That’s how young adults and adolescents grow,” says Johnson. “They need someone to walk down the path with as they navigate cancer treatment.”

McKelvey has helped facilitate an online support group for teens with thyroid cancer through ThyCa, the Thyroid Cancer Survivors’ Association, to provide the kind of community support she wishes she had when she was diagnosed.

Financial Toxicity

Adolescents and young adults may also need support to face new financial realities after diagnosis, whether transitioning to an individual insurance plan or leaving the workforce to focus on their health. Younger people may also have less experience managing finances compared with older survivors, and less savings too. “You haven’t had time to save money,” says Silberman of Stupid Cancer.

Several programs and organizations offer support and advice for AYAs dealing with financial difficulties. For example, the Samfund, from the Expect Miracles Foundation, provides grants to young adults after cancer treatment. A 2020 study in the Journal of Adolescent and Young Adult Oncology looked at 104 recipients of these grants and found that adequate financial resources helped young adults with cancer pay off debts, move forward with career and personal goals, and reach milestones such as living independently, solidifying partnered relationships and building families through fertility assistance and adoption.

Paying It Forward

Long-term survivorship issues for AYAs are also being studied. In 2020, the Children’s Oncology Group launched a task force to look specifically at quality-of-life issues experienced by AYAs. The AYA Horizon study is following more than 11,000 women diagnosed with the five most common types of cancer in AYAs (thyroid, breast and gynecologic cancers, and lymphoma and melanoma) to learn more about fertility and reproductive issues that affect this group.

Researchers and survivors are working to create places where AYAs feel more comfortable. After her own experience with lymphoma, Telesz became a project consultant in an effort to improve the cancer experience for teens and young people, working with donor Joel Smilow to establish the Lauren Telesz/Smilow Teen Center at Yale New Haven Children’s Hospital. The center has comfortable seating for hanging out with friends and family, a kitchen, video games, movies, and teen- and young adult-focused programs—all features that can help younger people with cancer “feel heard and respected,” Telesz says.

“All you want to do as a teenager is get back to your normal life,” she says.

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