An article in my news feed recently caught my eye: “Internists Unprepared for Adult Survivors of Childhood Cancer: Survey.” From Reuters Health, the article expanded on a survey’s recent findings that internists are “unfamiliar,” “unprepared,” or even “uncomfortable” in caring for childhood cancer survivors. As a long-term childhood cancer survivor of Hodgkin Lymphoma, the topic hit close to home. The finding even surprised me. I could imagine why internists were more unfamiliar with caring for a childhood cancer survivor like me in the 1970s, 1980s, and even the 1990s, as late side effects from aggressive treatments were still emerging. However, I thought surely the “dark ages” were long gone for more recent survivors of childhood cancer.
In my early adult years, still shell-shocked from having had cancer as a teenager, survivorship was not anything I wanted to talk about with my internist. Apparently, she didn’t either. I remember her referring to my survivorship only one time in my 15-year relationship with her, and that was in rather hushed tones. I would say she was definitely “uncomfortable.”
After a second diagnosis 11 years ago, I moved to a new internist. With a more confident adult perspective, I knew I really needed to deal with survivorship and have a medical partner who was ready to dive in alongside me. While my new internist might have been “unfamiliar” with caring for a survivor, she has always seemed happy to provide care for me, even a bit fascinated by my health history and eager to learn how I need to be cared for. She listens to me, helps me think through special considerations, and makes sure I get the care I need.
Another Childhood Cancer Survivor’s Perspective: Kristin
Curious about others’ experiences and perspectives, I reached out to another childhood cancer survivor, Kristin. While Kristin is a lot younger than me and has a survivorship nearly half the length of my own, I was surprised that Kristin’s experience with internists mirrored mine. She agreed they were definitely “unfamiliar” with her unique needs as a survivor of Wilm’s Tumor. With the advent of treatment summaries and follow-up schedules, she has definitive medical documentation to which she can refer. She also receives mailings from a focused study group on Wilm’s Tumor. That’s progress. (All of my records from 1975 were destroyed.) Kristin finds her current healthcare providers prepared to care for her as someone having one kidney. She also finds they are completely willing to take and review the follow-up and testing recommendations documents she provides them; they are just likely not to know about the potential long-term side effects of chemotherapy and radiation without her guidance.
An Internist’s Perspective: Dr. Barbara Paul
To offer balanced discussion of this topic, I spoke with an internist. I turned to Barbara Paul, M.D., a valued member of PearlPoint Cancer Support’s Board of Directors. Dr. Paul, now Senior Vice President and Chief Medical Officer for a large health system, completed her twelve-year practice of full-time internal medicine ten years ago. She thinks, gratefully, we’re seeing more and more survivors live longer so there’s naturally more focus on this topic. She also clearly sees how this subset of adults has unique healthcare needs. What she thinks is needed: Internists who follow Children’s Oncology Group (COG) guidelines (as referenced in the original article), who stay up-to-date on childhood cancer survivorship, and who learn what to watch for in adult survivors. She also points to the obvious need for continuing medical education for internists, family physicians, and other physicians surrounding survivorship.
Some Things Never Change
At the core of this topic, each of us survivors is ultimately responsible for being aware of all aspects of our medical care. We must know what is best or “normal” for our bodies, seek our own research using reliable sources, and learn ways to effectively communicate with our healthcare team. We shouldn’t hesitate to help out our primary care physician by sharing the COG guidelines; and if we don’t get answers to our questions or satisfactory responses to complex concerns, we must find other healthcare providers who will proactively help us navigate our survivorship. They’re out there.
As a survivor, how do you feel your internist is caring for you?