Rare Cancer Stories
Share |
Home   Support   Story   Forum Support   Info   News & Clinical Trials   Cancer Dictionary   Events Calendar   SiteMap   Twitter   Facebook

Gastrointestinal Stromal Tumor - GIST

By 'gist07' - October 15, 2009

Join gist07 on our Rare Cancer GIST Support Forums

Those words were pretty confusing when I first heard them. Though I am a two and a half year survivor, I'm still not an expert on it and I don't think anyone else is either. I suppose I'm just looking for someone with a similar diagnosis that could maybe make the experience a little less surreal.

My journey began in late January 2007. I came home late from work, tired, but not much different from any other night of waiting tables. I sat on the couch, had a beer and watched some of the news. As I was getting ready for bed, I suddenly had an intense pain in my gut. I doubled over and writhed on the bed for about 10-15 minutes (seemed like an eternity) until the pain finally subsided. It was still sore and tender to the touch, but I passed it off as bad gas pain. When I was still sore a couple days later, I called in to work and went to a local doc in a box. He did some blood work and poked around a bit. He said I had a mild infection and that the location of the pain made him believe it was appendicitis. He told me to check in the hospital which I did. The ER docs did more blood work, scans, etc. and told me it was probably Meckel's diverticulum. They planned laproscopic surgery for the next day.

Waking up in the recovery room, my mother and sister came in. My sister wanted to see my scar right away. Instead of a couple of small holes, they had sliced me from top to bottom it seemed. In fact it was a standard five or six inch mid-line incision. Whatever they found, they took out removing a two and a half inch portion of my small bowel and fit the pieces back together. A couple of days later, the surgeon gave me the news.

Of course, I was still semi-post op and high on morphine when the doctor came in and woke me up with the pathology report: "Strom's Tumor" or Gastrointestinal Stromal Tumor. He felt pretty sure that they had gotten all of it. He said he would arrange for me to follow-up with an oncologist and go from there. A few minutes after he left I realized that "tumor" and "oncologist" usually imply "cancer." My first and biggest concern was how I was going to tell my mother that I had cancer. She took it as well as could be expected, but the struggle was just beginning.

A few days after going home, I awoke in the middle of the night to go to the bathroom. I noticed a big red spot on my t-shirt and lifted it to find my suture had opened and blood was pouring out. A swift trip to the ER discovered that my suture had become infected and they had to reopen the suture in two places to allow it to heal from the inside out. This entailed twice daily cleaning and packing of the gaping holes with gauze.

A couple months after that, I was back in the hospital with more pain. Adhesions caused a partial blockage and excruciating pain. More drugs and no food for a few days. The next three or four times that happened I was able to manage it at home (more drugs and no food). Finally, the oncologist was ready to start Gleevec.

The diagnosis, I was told, was very rare, about 5,000-6,000 cases a year. If I had the same cancer ten years ago, it would have been a death sentence. Only a few years ago did they notice that Gleevec (originally used for treating myeloid leukemia) was effective on this kind of tumor. I started taking this pill once a day about six months after my surgery and have been clear ever since. There are few side effects and mine have been mild and barely noticeable any more. I still have PET scans and blood work a couple of times a year. The medication is still investigational. They are not sure if it is better to take it for one year or five years or more after resection. My oncologist and I have decided that since my insurance covers it and I tolerate it well, I will stay on until more studies are complete.

I feel a little embarrassed about talking to others with more serious kinds of cancer. If I had to choose a certain kind of cancer to have, this was the one and that was the time. I didn't have to get radiation. My chemo is a joke (one pill a day with almost no side effects.) The actual surgery was harder to recover from than the tumor. I still live with the stigma, though. I will have to tell every doctor I ever see that I had cancer and will have to put up with extra precautions and more tests than "normal" people. Still, I am very lucky and blessed that things went as they did. I appreciate the chance to share my story and would like to hear from anyone who has had this diagnosis. I hope that in being a part of this forum I can help encourage someone through their journey.