I began experiencing lower pelvis discomfort in January of 2005. My family doctor, “Dr. N”, prescribed antibiotics and attributed it to diverticulitus. The discomfort went away but came back a week later and he prescribed the same regimen and it went away again. However, because I was beginning to lose confidence in Dr. N, I began to reintroduce into my diet (slowly) the products he advised me to avoid just to satisfy myself. I transitioned from tomatoes to strawberries to blackberries and then nuts with impunity and I eat them all to this day.
In the spring of 2005, I began to experience abdominal discomfort and in the summer I mentioned it to Dr. N, who attributed it to being “out of shape.” It got progressively worse through the summer and I began to experience tenderness in my right nipple, an anomaly Dr. N ascribed to “T-shirt rubbing against it.” In neither case did he order tests or put my complaints into record.
By August the discomfort was spreading and became more intense, ranging from my lower right groin to my left shoulder. By late August, I drove to the ER at the VA’s Gainesville Medical Center one night in excruciating pain but an EKG, blood work and chest X-ray produced no apparent reason other than a slight anemia and I was sent home. Three nights later, the pain was so unbearable I had to call 911 and I was back at the VA ER where they finally did a CT scan and found a “mass on my abdomen which was likely cancer.”
I was admitted (Labor Day weekend) and doctors confirmed that my mass was hemorrhaging and I was piled with painkillers for two weeks until my daughter asked our congressman for help. A surgery was then scheduled and a surgical team went in a few days later and discovered that “my liver was too deeply involved for them to continue” and they wanted to send me across the street to Shands Hospital at the University of Florida, a teaching hospital with an impeccable reputation.
Three days later, a second team of surgeons went back in, found and removed the tumor and the lower half of my stomach and declared my liver as “fine.” A lab determined it was a 19cm GIST with a low mitotic rate that I have carried for as long as five years.
A week later I was sent home while in the fourth day of a raging diarrhea and two days later was back in an ambulance and re-admitted with dehydration and kidney failure. It took another week or so to get me functioning normally. I was strongly encouraged to participate in a clinical trial on Gleevec but I didn’t decide for two months because my faith was so badly shaken in Dr. N, pharmaceuticals, the first surgical team, and the surgeon who sent me home way too soon and nearly killed me, not to mention the poor quality floor care I had at Shands.
I decided to participate in the trial after the trial coordinator and trial doctor said it was a win-win situation for me but no pressure was applied for my participation. I believe everything was explained to me adequately.
After my health scare, I decided to make massive lifestyle changes. I eliminated meat and fatty foods from my diet and, with my oncologist’s approval, joined a gym and began working out three times a week to strengthen my body and immune system and began taking oncologist-approved supplements. But by spring, I noticed that, rather than improving my appearance, my abdomen appeared to be actually getting larger. I consulted with a doctor from Dana Farber Cancer Institute only to learn that regardless of what I did, it was likely to get larger (and lumpier) because so much muscle wall had been destroyed in the surgery and the surgeon wouldn’t even discuss remedial surgery (insertion of a mesh) until the one-year anniversary of my surgery. And there were risks.
My abdomen continues to grow and I now look like I am seven months pregnant. While I wore a 36 pant pre-surgery, my new 38’s are inadequate for my girth and I worry about how far this could go. I had been convinced that this was typical of patients with large GISTs but after talking with the LRG, I am forming new questions.
Thanks for your patience and your interest. I hope the above information can help somewhere, somehow, somebody.