Submitted by Dr. Indra Lovko, GISTer & LRG contributor
Hello my fellow GI Stromal Tumor patients and caregivers! I was asked by the Life Raft Group staff to write about what it has been like to be both a GIST patient and a doctor. I’m happy to share my story and thoughts.
I have been practicing pediatrics for the last 24 years in Vermont, and although pediatrics and adult medicine sometimes overlap, I had never heard of GIST when I was diagnosed with a large tumor in my stomach seven years ago at age 47. I generally knew that sarcomas are rare and usually don’t respond to traditional chemotherapy or radiation, but ultimately I had to learn about GIST the same way that everyone else does, and in a short amount of time, between my diagnosis and surgery.
People are curious to hear that being a physician did not help me figure out that I had cancer any faster than someone without medical training. As much as I would have liked to have been diagnosed at a low-risk early stage, that didn’t happen because I didn’t know anything was seriously wrong. Although doctors often underreact to their own symptoms, either out of denial, being too busy, or knowing that usually people don’t have the worst thing on the list of possibilities, I don’t think that was the case with me. I just didn’t have symptoms that got my attention until just before my stomach started bleeding.
In retrospect, many months before my diagnosis, I was waking up in the middle of the night for a few weeks feeling really hungry and needing a snack. Then that subsided, and nothing happened for a while, until I started getting really hungry between breakfast and lunch. That went on for a while, and I remember discussing it with my spouse at the time who is an internist, and it just didn’t reach the level of concern for either of us to worry. I would eat and feel back to normal! Finally, about a week before my diagnosis, I could tell something wasn’t right. I had developed a feeling of nausea and indigestion, then shortness of breath with minimal exertion (like sweeping my garage), and a headache. It was then that my stools turned black and I had a clue that my stomach might be bleeding. I grabbed some hemoccult cards from my office, saw they were positive, and knew I needed medical attention. I was seen in urgent care (because of course it was a weekend) and had a blood count done which was low. One perk of working within the system was that we could text our local gastroenterologist, who got me in for an endoscopy within a few days. My hemoglobin was in the 7 range by that point, and I just barely dodged needing a transfusion.
As I headed in for my scope I was pretty relaxed and thought they would find a bleeding ulcer but of course I was wrong. Because the tumor kept bleeding after the scope, I was transferred to the tertiary care center about an hour away. I was familiar with the ambulance ride because many years earlier as a pediatric resident at that same tertiary care center, I was the one traveling to our smaller local hospital to pick up sick newborns and transport them back. The road is curvy and I always got carsick so my biggest fear during the transport was getting nauseous, vomiting, and making my stomach bleed more. That thought preoccupied me more than knowing that I had just been diagnosed with cancer. Fortunately, the trip was uneventful, I was stabilized and discharged home, and within a week went back to have my surgery. What’s interesting about the backstory to my diagnosis is that the cancer eluded not just one, but two physicians in the household.
In understanding GIST and my care, I do have an advantage in that I know anatomy and physiology. I understand pathology, genetics and how medications work. I am comfortable reading medical journals and research articles. I appreciate how to analyze recurrence risk, I know how to interpret my bloodwork results, and when I was first diagnosed I understood the pathology report and what the surgeon was showing me on the CT scans. I felt comfortable going in to surgery because of my past experience from surgical and anesthesia rotations. But I did not have much control over how my body recovered from surgery, or the side effects I experienced when I started Imatinib. I remember joining the Life Raft Group listserv to ask for advice about the inside of my mouth which was completely shredded from the medication. I also appreciated nutrition suggestions to regain weight, and book recommendations to calm my anxiety, and in general I felt so supported by the concern and caring of people who had experience with this.
All of my years practicing medicine has not really helped me deal with the hassles of insurance company mistakes and denials, and all the things that go wrong with getting medication from the specialty pharmacy. We all know that some weeks it is a huge headache to try to get everything back on track correctly. Like many of you, I had to accept switching to generic Imatinib even though I was used to and trusted brand name Gleevec. I have had to learn to stay calm and organized, be patient, and advocate for myself just as the rest of you do.
My oncologist does not work at my local hospital, so I have to travel to see her. Most doctors intensely dislike being patients and I am that way too. It’s hard to give up control. I recently had my “day” at the large medical center with labs, scan and office visit. I always think I’ll be fine, and sometimes I go alone, but then when I get there and check in to the oncology center that panicky feeling kicks in, and I feel uncomfortable being the one receiving the IV instead of inserting it, or having my blood drawn instead of drawing it, or lying in the scanner instead of ordering the scan. Then I wish I had someone with me!
I have a critical eye when I am cared for by another physician or visit other medical facilities. I have a certain way that I do things when I take care of my patients and I expect those same standards when I am the patient. Most of the time I am not disappointed but occasionally things happen that are annoying. One time I wasn’t paying attention when my IV was started and realized too late, after it really hurt, that the tech used a ridiculously small vein instead of the huge one that was right next to it. Another time I had to decide if I was going to speak up to a tech starting my IV without gloves on. Or there was the time that the IV connection became loose as I slid in to the CT scanner and contrast started dripping down my arm.
Maybe it’s reassuring to the general public that these things happen to everyone including medical professionals? But really, they should happen rarely and I have learned to pay attention and try to troubleshoot along the way now that I know what to expect. I have also learned what makes me the most comfortable in the MRI scanner so I always ask for one pillow under my head, no pillow under my knees, headphones on with comedy channel, washcloth over my eyes as an eye mask, lights on in the room, and medium airflow in the tunnel. The techs are kind to me and accommodate my picky requests though I’m sure they think I’m being bossy … but maybe afterward they appreciate that I don’t move a muscle and the scan goes smoothly.
Every doctor/patient relationship should be one of joint decision making and that is true for my situation as well. However, since I can never quite relinquish my doctor mindset, perhaps it is more of a doctor/patient-doctor relationship. I challenge my oncologist when I feel I need to, sometimes we end up compromising, but I think she manages me well and makes me feel cared for. She is good at meeting me on my level (or “where I’m at” as they say.) That concept, of meeting patients “where they’re at” is important, and overlaps with the idea of treating the patient first and the disease second. I have become more mindful of both in my daily work. Doctors say that being patients themselves helps them become more compassionate physicians and that is true. I like slowing down and getting to know people. I see how powerful physicians’ words are when conveying diagnoses and offering guidance. I understand the fears parents have about their children and I know better now how to alleviate some of their suffering.
The Life Raft Group is also so valuable in helping to alleviate suffering. What I appreciate the most is that we all have something helpful to offer, whatever our background, and I truly have learned and continue to learn so much from everyone.