When diagnosed with a gastrointestinal stromal tumor (GIST) or any rare disease, the patient usually sees a doctor specializing in the treatment of that disease. Unfortunately, I live on a rock in the middle of the ocean, which makes finding the right doctor especially difficult.
I was diagnosed with GIST when I was 15 years old. Today, at age 23, I still see the same pediatric oncologist. My options are limited. I am roughly 2,500 miles from the nearest GIST specialist in California.
Until I was 18 or 19, I was treated by my pediatrician, and I’m still seeing the same pediatric oncologist to this day. A pediatric oncologist can decide to continue treatment with their patient over the age of 18 as an outpatient until about age 30 (a decision that is up to the oncologist). But there is no other doctor on the island that has the relevant experience or specializes in my type of cancer. To my knowledge, there is only one other GIST patient on the island.
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As I enter “adulthood,” I have learned it is challenging to find a new doctor, whether it’s a specialist, PCP, or therapist. I have been seeing my current oncologist for 8 years, and I have been fortunate that my oncologist goes out of his way to consult with GIST specialists at the National Institutes of Health to ensure I still get the best care here. I realize I would eventually need to transition to an actual specialist, but the fear of not being listened to is one of the reasons why I hold on to the doctor I am seeing now.
I am not sure if other health care systems are the same, but the health care system I am a part of does little to nothing to help you find new doctors. For example, when I wanted to find a new therapist, I was referred to the website “Psychology Today” but I wished the doctor would have referred me to specific, recommended therapists.
To find a new PCP or a doctor specializing in a specific field, you are referred to a website within your healthcare system and end up on a page called “Find A Physician.” Next, you choose between searching by name, specialty, or location. It’s nerve-wracking having to pick a physician, let alone reading reviews online.
I think it would be easier for a GIST patient to be referred to new doctors and other health care providers. It’s hard to build a bond and have that trust with a new HCP because you get dismissed by being chronically ill. I’ve been told in the past that my symptoms have “been in my head” and that “I’m fine,” and that I am “overreacting.” As a GIST patient, how I feel should be validated.
Whether referring us to a therapist or referring us to get a second opinion, we should feel like we are being taken care of; we should feel like we’re being heard from every doctor we meet. We shouldn’t have to go on this journey alone and “figure it out” by ourselves by looking at websites.
