Toward a New Understanding of Cancers in Adolescents and Young Adults
Dr. Brandon Hayes-Lattin
My personal motivation to improve the understanding and care of cancer among adolescents and young adults (AYAs) comes from reflection on my own diagnosis of a prototypical young adult cancer, testicular cancer, at age 28.
Having just begun my training as an academic oncologist, I found myself asking a wide range of questions: Why does testicular cancer predominantly affect young adults? Why is there a separate disease staging system in the pediatric versus the adult clinic? How does a young adult balance a cancer diagnosis with a new career and a new family? What resources exist to support young adults during their cancer journey? How does a cancer diagnosis affect long-term survivorship?
Striving to answer these questions led me to form the Adolescent and Young Adult Oncology program in the Knight Cancer Institute at Oregon Health and Science University and to work with the Lance Armstrong Foundation's LIVESTRONG Young Adult Alliance.
More than 72,000 adolescents and young adults (ages 15 to 39) learn they have cancer each year in the United States, a number up to seven times larger than the number diagnosed under the age of 15. Cancers that are common in AYAs often are rare in the traditional adult oncology clinic—germ cell tumors, leukemias and lymphomas, melanoma, thyroid cancer, and sarcomas.
AYAs face unique medical issues. For instance, diagnosis is often delayed because physicians rarely think of a young adult as having cancer. A lack of health insurance also makes access to medical care more difficult for some patients in this age range, although the new health care law that allows children to stay on their parents' insurance until the age of 26 should help in this regard.
Sometimes AYA patients receive treatments that may not be the most effective for their cancer. For instance, recent clinical trials indicate that, in at least some cases, AYA patients with acute lymphoblastic leukemia (ALL) may have better outcomes when treated with pediatric, rather than adult, regimens. Young adults also face issues around the availability and timing of fertility preservation techniques and often report a sense of isolation within the traditional pediatric or adult cancer clinic setting, where they see very few other patients their own age.
Until recently, many physicians have been unaware of these issues, compounding the difficulties faced by young people with cancer. Perhaps as a result of this lack of awareness and other factors, survival rates for AYAs have stagnated in recent decades, while survival rates for young children and older adults have improved.
The report of NCI's Adolescent and Young Adult Oncology Progress Review Group, published in 2006, provided the stimulus, the legitimacy, and the framework to pursue work in AYA oncology. The report, titled "Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer," presented five key recommendations for improving outcomes:
- Characterizing the distinguishing features of the AYA cancer burden. More research is needed on the biology of tumors in AYA patients given that, in some types of cancer, tumors appear to be different from those in children and older adults. These biological differences may require different treatment regimens to achieve the best possible outcomes. In addition, more research is needed to understand the psychosocial effects of diagnosis, treatment, and survivorship in this age group, and how intellectual, emotional, cultural, and other factors influence medical outcomes.
- Providing education and training. Health care providers who work with AYAs must be educated about the types of cancers that occur most commonly among this age group, monitoring for late effects among survivors, and the psychosocial needs of AYA patients and survivors. Broader public and professional education campaigns are also needed to raise awareness about AYA cancers in general and risk factors in particular.
- Creating tools to study AYA cancers. The report recommended creating a database on all AYA cancer patients, increasing the number of tissue samples available for research from this population, and expanding the number of clinical trials appropriate for and available to AYAs.
- Ensuring excellence in care delivery. The first step toward achieving this goal is the development of standards of care for AYA patients. Once these standards have been developed, they must be disseminated to and implemented by all stakeholders in the AYA community, including researchers, health care providers, and advocates.
- Bolstering advocacy and support. Effective support services for AYA cancer patients and survivors need to be based on an understanding of how cancer may affect their self esteem, spirituality, body image, life goals, and stage of development, among other factors.
In the 5 years since these goals were set, we have made progress in each area. Research projects have been started, tissue samples collected and analyzed, and clinical trials focused on AYAs launched. Preliminary work laying the foundation for standards of care has been completed.
In the area of awareness and education, programs and workshops for health care providers have been set up and advocacy groups are spreading the word. In the past year, LIVESTRONG has partnered with the American Society of Clinical Oncology to produce the "Focus Under Forty" educational series.
I believe that understanding "outlying" cancers such as those occurring in the AYA age range will lead to new treatments and more supportive approaches to care. We have seen examples in applying pediatric principles to the treatment of young adult ALL, characterization of and differing treatment approaches for premenopausal breast cancer, and genetic screening for early-onset colorectal cancers.
As an oncologist, a cancer researcher, and a survivor of cancer as a young adult, I am proud of the work aimed at improving outcomes for AYA patients, encouraged by the spirit of collaboration to continue seeking answers to the questions I faced, and eager to participate in these continued efforts.
Dr. Brandon Hayes-Lattin
Medical Director, AYA Oncology Program, Knight Cancer Institute,
Oregon Health and Science University
Senior Medical Advisor, Lance Armstrong Foundation
Health Insurance Poses a Hurdle for Many AYA Survivors
Obtaining health insurance can be a major challenge for survivors of AYA cancers. And the importance of having insurance is becoming clearer. A recent study led by Dr. Jackie Casillas of UCLA's Jonsson Comprehensive Cancer Center, for example, found that adult survivors of childhood cancers without health insurance were much less likely to receive general preventive care or cancer survivorship-focused care than survivors their age with private or public insurance.
Many will "age out" of coverage under their parents' insurance, noted Dr. Smita Bhatia of City of Hope Cancer Center, and, because of their health history, many are priced out of the private insurance market.
Although survivors can often obtain insurance through school or work, even these routes can be difficult, explained Dr. Julia Rowland, director of NCI's Office of Cancer Survivorship. She noted that "these policies can be quite limited, especially when it comes to the high costs of dealing with a serious illness that calls for close monitoring and can result in chronic health challenges over time."
In addition, because many survivors suffer late effects, including cognitive deficiencies, "completing school and getting a job can be a major challenge," Dr. Bhatia said.
For Matt Sasaki, 21, of Sacramento, CA, a leukemia survivor, the chronic pain caused by avascular necrosis, a deteriorative bone condition, has altered his life in ways he hadn't imagined. "[The avascular necrosis] is so painful and distressing, I am not in school or working," he explained. Insurance issues, he continued, have limited his ability to seek treatment.
The health care reform law enacted last year should help some AYAs dealing with late effects, Dr. Rowland noted. Under the Affordable Care Act, for example, young adults up to age 26 can remain on their parents' health insurance plans. The portability and pre-existing conditions provisions in the law "can also help to reduce the number of AYAs who might otherwise be without insurance," she said.