Increasing attention is being paid in the oncology community to cancer diagnosis, treatment, and survivorship care for adolescent and young adult patients. ASCO has responded
to the need for greater education about the issues facing this population with a series of modules on ASCO
University® created in partnership
with LIVESTRONG®, called “Focus Under Forty™
In the following interview, ASCO member Brandon M. Hayes-Lattin, MD, of Oregon Health & Science University, discusses the unique challenges and rewards of working with adolescents and young adults, and his own experience with receiving a cancer diagnosis as a young adult.
AC: What age range defines “adolescent and young adult” patients, and what cancers most commonly affect this group?
M. Hayes-Lattin, MD
Member since: 2002
Institution: Medical Director, Oregon
Health & Science University Knight Cancer Institute Adolescent
and Young Adult Oncology Program
Education: Medical degree: University
of Washington; residency and fellowships: Oregon Health &
Specialties: Hematology, medical
oncology, bone marrow transplantation
Most of us use the range of diagnosis between the ages of 15 and 39, based on a 2005 NCI definition. I trained as an adult oncologist, but my main clinical activity is in bone marrow transplants, so I see patients across that whole age range and our program runs a consult service for adolescents and young adults with any type of cancer. The diseases that are most common in this age group are actually fairly rare overall: hematologic malignancies such as leukemias and lymphomas, germ-cell malignancies like testicular cancer and ovarian cancer, skin cancer (including melanoma), thyroid cancer, and sarcomas.
AC: What led you to focus on adolescent and young adult patients?
I myself had testicular cancer at age 28, so I was personally familiar with the notion that young adults get cancer and that they’re often relatively rare cancers. When I was diagnosed, I didn’t know that testicular cancer was the most common cancer among men my age. I got to know other young adults facing cancer through my experience and learned about the range of unique psychosocial issues that young adults face. Many times, I observed that they weren’t getting adequate support for those needs. There are more support systems for children or older adults with cancer. I was interested in rounding that out for young adult patients.
AC: What are the greatest challenges and rewards in working with this population?
Many of the challenges are practical. These are the phases of life when people are first becoming autonomous, launching into what they hope to be their futures—school, career, and family. A cancer diagnosis throws a wrench into those plans. How are you going to balance a cancer diagnosis with starting college or a new job, or planning a family? Another significant challenge for young adult patients is insurance coverage, which has some promise to improve with the provisions for young adults in the Affordable Care Act.
A great reward is that young adult patients are often less focused on illness, even as they’re undergoing therapy; they’re very focused on getting on with life. When their treatment is successful, you get to share in their joy of getting back to life and moving on beyond their cancer. Many of these young patients continue to stay in touch.
There’s also a community built around giving back after the cancer experience, which can be very rewarding for survivors. When you think about it, many of the current cancer support systems and advocacy organizations in the country were founded by young adults or in honor of young adults with cancer: Lance Armstrong was a young adult with testicular cancer; Susan G. Komen was a young adult with breast cancer.
AC: Can you discuss your work
with Critical Mass: The Young Adult Cancer Alliance (formerly the LIVESTRONG® Young Adult Alliance)?
When I was first diagnosed, I learned some of the facts about young adult cancer—that it’s the most common natural disease killer of young adults and that survival rates hadn’t been improving. Along with other young adult patients, I worked with the NCI to generate a Progress Review Group report, which outlined some of the issues and directions that we could pursue to help young adults with cancer. The Young Adult Alliance, a coalition of about 150 organizations, was the implementation body formed to work on those recommendations, and I served as the Medical Co-Chair of the Alliance.
We gathered opinions from physicians and other health providers, from specialty societies, and from patients and patient advocate groups. From there we’ve been able to do things such as publish position statements in the Journal of Clinical Oncology around the elements of a quality-care program for young adults, as well as partner with the NCI to hold workshops on biologic differences in young adult cancers compared to older adults and children. That work has been really rewarding and it continues today. The Young Adult Alliance is in the process of spinning off from being a program of the Lance Armstrong Foundation to being its own entity—Critical Mass: The Young Adult Cancer Alliance—and I’m a Chair of the interim Board of Directors.
AC: It can be a struggle for young people, especially for teenagers, who may feel like they don’t fit in with peers because of a cancer diagnosis. Do you have any advice for oncologists on how to help young patients face the psychosocial aspects of their disease?
My best advice for fellow oncologists is to help their patients connect to other young adults. A health care professional, such as an oncologist or social worker, can be a great help in explaining what the cancer process might look like, but many young adults benefit powerfully from being able to connect with peers who have been through that experience and can “tell it like it is.” Some great opportunities have emerged for young adults to make those connections, both in-person and online with social networking. In this day and age, no young adult should go through their cancer experience feeling like they’re alone.