November 16, 2013 | by Kim Proescholdt
Adolescents and young adults (AYAs) with cancer have different needs and treatment challenges than children or older adults. They're a unique population because they don’t fit into a distinct group, often falling into a gap between cancer treatment programs designed for children and those designed for adults.
Here, pediatric oncologist Julie Wolfson, M.D., M.S.H.S., discusses how the cancer experience differs for AYAs and how City of Hope’s multidisciplinary AYA team offers assistance and a network of professionals to support teens and young adults from the beginning of treatment through survivorship.
Who are AYAs and what are some of the cancers most often seen in this group?
The National Cancer Institute considers an AYA to be any patient who has been newly diagnosed with a malignancy between the ages of 15 and 39. Some of the more common cancers in AYAs are lymphomas, thyroid cancer, melanoma, testicular cancer, leukemia, brain and spinal cord tumors, cervical cancer and breast cancer. These patients have diagnoses similar to both young children and older adults, depending on what age group they fall into. For example, acute lymphoblastic leukemia is more common with younger AYAs, while older AYAs may see thyroid, breast and skin cancer more often.
What are some of the unique short-term and long-term health and psychosocial issues facing AYAs during and after cancer treatment?
Beyond feeling they’re invincible, AYAs are clearly at a unique developmental time in their life to be diagnosed with a devastating illness. Staying on schedule with their peers in school, work and keeping up with their family life are so important, and losing a (sometimes newfound) control over their lives while instead gaining a sense of social isolation can feel overwhelming. Issues such as sexuality and body image are important in a unique way in AYAs, as is fertility. Many cancer treatments can alter the ability to conceive a child – whether you’re a young man or woman. Communicating with your health-care team about whether or not there is a way to preserve fertility is a very important conversation for an AYA.
Have cancer survival rates for AYAs improved in recent years?
We’ve seen consistent improvements in cancer survival in young children and in older adults, but we just have not seen the same improvements in AYAs. There are a lot of factors that may contribute to this, but what we do know is that not enrolling in clinical trials is definitely part of the story. In certain cancers, it’s been shown that different models of treatment have affected outcomes, and the adult and pediatric national cooperative research groups are just starting to work together to find some answers. Where an AYA receives cancer treatment may also affect outcomes, and that is a question we are working on answering.
Tell us about City of Hope’s AYA team and services.
We are lucky to have a multidisciplinary team of experts at City of Hope who are enthusiastic about working with AYAs. The team is actively involved in day-to-day patient care, as well as research to test new treatments, improve outcomes and enhance survivorship for AYA patients. In addition, we have developed a comprehensive research agenda, and we are investigating disparities in AYA outcomes. In addition, Jonathan Espenschied, developed an iPad app to screen AYA patients for cognitive and psychosocial changes during treatment. Debbie Toomey, P.N.P., one of our pediatric oncology nurse practitioners, provides fertility resources for patients. Other members of our multidisciplinary team include two psychologists, a recreational therapist, two social workers, two child life specialists and a patient educator.
City of Hope has dedicated resources and services for our AYA patients to help address the psychosocial issues often experienced during treatment. This includes an inpatient lounge located on the third floor of City of Hope Helford Clinical Research Hospital, gaming systems and other electronic diversions that can be brought to patient rooms for AYAs, an information book with education and resource materials, and an inpatient recreation therapy socialization group that meets every couple of weeks.
We also have educational groups where AYAs meet weekly for six weeks to learn more about their diagnosis and treatment, tips to stay healthy, how to advocate for themselves, and to simply connect with each other. Social events are also hosted for AYAs to provide them with an outlet to interact with and socialize with their peers. Recently, we held a well attended coffee house-style event on Oct. 5, where AYA patient artists displayed their work at an off-site venue. Everyone had a great time!
Why did you choose this specialty? What inspires you to do the work you do?
I have always been drawn to the art and practice of caring for the sickest children during my training, both in general pediatrics in Boston and subsequently in hematology-oncology here in Los Angeles. But the challenges of the older teens touched me deeply. These AYAs have a special place in my heart, and I could name each young adult, individual struggle and even lost battle that pushed me into AYA-directed research. The perseverance, the determination and heart of the patients and their families is so inspiring. They keep me focused on what lies ahead.
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For more information about City of Hope’s AYA team and services, visit cityofhope.org/pediatric-cancers.