Adolescent and young adult oncology comes of age

Researchers seek to provide better resources for this patient group


  • Carrie Printz

Leonard Sender, MD, is on a mission to educate physicians in all oncology-related specialties to begin considering the unique needs of teenaged and young adult cancer patients. “We think it's about getting medical students, residents, and fellows involved;' he says.” The movement will succeed with the next generation of doctors thinking a little differently about these patients than [about] someone who is 50 or 60 with the same diagnosis.”

Dr. Sender is medical director of the Children's Hospital of Orange County Children's Cancer Institute, Orange, California, and director of the young adult cancer program at the University of California, Irvine. He is actively involved in the adolescent and young adult oncology (AYA) field, serving as editor of the new Journal of Adolescent and Young Adult Oncology, which launched in April 2011.

Approximately 70,000 adolescents and young adults are diagnosed with cancer each year, representing about 6% of the US cancer population. Pediatric patients, meanwhile, make up approximately 0.75% of all cancers but have had enormous research, training, and clinical care directed toward them.

“The question is whether we can replicate that, even on a small scale;' notes Karen Albritton, MD, director of adolescent and young adult oncology at Cook Children's Health Care System and the University of North Texas Health Science Center, both in Fort Worth, Texas.

Gradually, AYA oncology has begun to come into its own field, she notes.

“Five years ago there were less than 10 of us who would check off the AYA box as a specialty—now there are more, but still less than 50,” says Dr. Alhritton. “There are a growing number of people with an AYA interest, and I think there will be more defined parameters of how you would get training in it.”

The field is about 10 to 15 years behind the development of geriatric oncology, and AYA leaders look toward it as a model. Although currently there are no AYA fellowships, Dr. Alhritton says that some medical schools are considering them.

“We're moving in the right direction, hut we've got a long way to go,” says Dr. Sender, adding that most cancer centers do not focus on the specialty and that many academic medical centers are unaware of it.

A Short History

The focus on AYA patients as a unique population began as early as the 1980s when a physician at a New York children's hospital recognized that his adolescent patients had different needs from those of his younger patients. That program closed because of lack of funding, but around the same time, a group of parents in England launched the Teenage Cancer Trust to help meet their children's special challenges, an effort that eventually involved the medical establishment. In the 1990s, the American Cancer Society held a conference dedicated to the topic. The field received growing attention in the early 2000s, culminating in a National Cancer Institute (NCI) Progress Review Group, which brought together national experts to review the state of the science and make recommendations.

That review group, the result of a partnership between the NCI and the Lance Armstrong Foundation, led to the development of an NCI AYA task force, the LIVESTRONG Young Adult Alliance, and a strategic plan to address the group's recommendations.

Compared with younger and older populations, AYA patients have experienced little or no improvement in cancer survival rates for decades. The NCI Progress Review Group identified key reasons, including restricted and delayed access to care, delays in diagnosis, and inconsistencies in cancer treatment and follow-up care These patients tend to fall into a “no-man's land” between pediatric and adult oncology and have exceedingly low participation in the few clinical trials available to them, the review group reported.

Part of the challenge is simply trying to define the unique needs and issues of this population and developing appropriate resources and research, notes Dr. Alhritton. In the United States, the age range for AYA oncology patients is defined as 15 to 39 years, hut in other countries, such as England and Australia, the range is age 13 years to the mid20s. Among the diseases commonly seen in this population are lymphoma, leukemia, germ cell tumors (including testicular cancer), melanoma, central nervous system tumors, sarcomas, and breast, cervical, liver, thyroid, and colorectal cancers.

Focus on Standards of Care

Drs.Alhritton, Sender, and colleagues are attempting to define what should he considered basic standards of care for this age group. They all agree on the importance of fertility preservation. An increased national awareness, growing number of protocols, and National Institutes of Health funding have pushed the field of on cofertility to the forefront; however, it is still barely on the radar of most community-based oncologists, notes Dr. Albritton. “They may know about sperm banking for males, but most have no clue how to address female fertility,” she says.

A more amorphous issue for guidelines is that of psychosocial care. Finding ways to help these patients feel less isolated and to reach out to them as a group is challenging because they generally tend to he less rooted. In addition, they are busy with work and other interests and do not want cancer to take over their lives. For that reason, it is more difficult to get a 20-year-old to attend an educational event than a 60-year-old, notes Dr. Albritton.

“This is a huge bomb in their lives, and getting them to wrestle with it is really hard,” she says, noting that the AYA population is a hugely diverse population and that 17-year- olds and 35-year-olds should not be put in the same group for counseling purposes.

For these reasons, every center focusing on AYA oncology has had to develop its own unique programs that work for its particular population and location (see sidebar).

Dr. Sender's aim is to reach as many people as he can with his message about the needs of this age group. He has launched a website,, with the goal of educating patients, families, and providers. Among other areas, it highlights his “Stop a Doe” campaign, which urges advocates to ask doctors involved in cancer care if they can answer “yes” to specific questions, including:

  • Do you know there is an adolescent and young adult cancer segment called AYA?

  • Are you aware of the unique physical, psychological, and social needs of AYAs?

  • Do you know if there are clinical trials for AYAs? Answer: Yes, but not as many as there should be. With certain types of cancers, this group may do better with regimens targeted toward younger children versus older adults.)

Do you know if there are resources for AYAs?

(Answer: Yes, including, which can provide information on emotional and financial support.)

“These patients are a small part of most oncologists' practices, and either they need to take the time to learn this information or they need to refer them on to someone who does:' he says.

Dr. Sender also serves as chairman of the board of I'm Too Young for This! Cancer Foundation, a national organization that offers online and community support for young adults with cancer, including a live weekly talk radio program,” The Stupid Cancer Show.”

In terms of research, he notes that one important component is encouraging scientists to begin asking about and understanding the biological differences between patients of different ages. Evidence has shown, for example, that patients at certain ages have better or worse outcomes with the same disease, and researchers should begin to ask why.

“We need more high-quality tissue with which to do sophisticated genomic analysis,” says Dr. Sender. “And when we design clinical trials for patients over 18 [years of age], we need to encourage the designers to look at the differences in the under-40 age group.”