From the recent ACCC 33rd National Oncology Conference, this is the second in a two-part blog series highlighting featured speaker sessions focused on adolescent and young adult (AYA) cancer patients.
On Friday morning, October 21, conference attendees heard the AYA patient voice loud and clear in a riveting presentation by Suleika Jaouad, author of the award-winning New York Times column, “Life, Interrupted.”
“My name is Suleika Jaouad, and I am a cancer survivor.” With that Jaouad began the story of her experiences as a young adult with cancer.
“Looking back, the symptoms had been there for awhile,” she said. But getting to a diagnosis turned out to be a lengthy, arduous, and scary process. Originally told she had “burnout syndrome,” it took months to eventually learn that she had an aggressive form of leukemia. At 22 years of age, Jaouad had no family history of cancer, she always ate organic, and was a straight A student. Lesson learned: “Cancer doesn’t care what your GPA is or how good a person you may be, because cancer doesn’t discriminate.”
Life interrupted is what cancer feels like, Jaouad said. Overnight she lost everything she had worked for as a young adult, having to move back home into her childhood bedroom. “I lost my job, my apartment, and maybe worst of all, I lost my independence.”
Knowledge is Power, But. . .
Where and how to find the “knowledge” about your cancer and treatment “was a bigger challenge than I expected,” she said. With providers, she often felt “lost” in the conversation. “I wanted to understand what lay ahead, but often felt too overwhelmed, intimidated, and sometimes embarrassed to ask them to explain and re-explain.”
While searching the Internet, she came across a list of side effects and “one word stuck out to me—infertility.” No one on her medical team had mentioned this side effect to her. “Lack of information on that felt like a breach of trust early on in my treatment. . . . I wanted to make this decision with my medical team,” she said, not have it be a decision that was made for her. “Preserving my ability to be a mother one day felt like a very important lifeline to a very uncertain future.”
Once she brought the topic up with her team, she was provided with resources. But lesson learned: Clear, open communication between herself and her medical team was not always a given. She would have to take an active role in her treatment.
Echoing Thursday morning’s Helping AYAs Be Loud! session’s call to action, Jaouad emphasized that AYAs face unique medical, professional, and psychological challenges. It’s almost as if AYAs are oncology’s tweens, she said, too old for pediatrics but too young for the adult oncology unit. Young adults are a misunderstood and overlooked part of the cancer patient population.
I Wanted a Cure, Not a Trial
In 2011, at the end of the first round of treatment a biopsy showed that standard treatment hadn’t worked and she was going into bone marrow failure. Because a bone marrow transplant was becoming less likely, Jaouad said, she had to face the possibility that she might not be cured. It was then that she learned about clinical trials. Ultimately, she enrolled in a trial and after 8 months was in enough remission for a bone marrow transplant.
Survivorship: Unknown Terrain
Although she received excellent care, Jaouad did not learn about her cancer program’s survivorship care clinic until after she wrote a column focused on how, as a cancer survivor, she lacked any kind of roadmap for the way ahead. She was then connected to the cancer center’s survivorship program, which provides resources to help patients stay healthy in the long-term both physically and psychologically.
Lesson learned for providers: Make sure patients are connected to the resources that are already in place. After all, “what’s the point of going through all these treatments if it’s not to live a good life and a healthy and meaningful life?”
Stay tuned for more from the ACCC 33rd National Oncology Conference. Read about an innovative program for AYAs at Seattle Children’s Hospital’s Building Hope (Oncology Issues Nov/Dec 2013).