Welcome to my website and my journey with GIST. Here's my story:
In April 2012 I was diagnosed with GIST (gastrointestinal stromal tumor), a sarcoma of the digestive tract. Sarcomas are quite rare; about 1% of all diagnosed cancers are sarcomas. The tumor ruptured and perforated into my small intestine and was surgically removed. Biopsy showed an Exon 11 mutation, the most amenable to treatment of the GIST mutations. The mitotic rate, number of cells seen dividing in a tissue sample, was low. Both of these factors- the mutation and the mitotic rate- suggested a good outcome. My risk for recurrence was at about 8 %. I asked for a second opinion at Mayo. I met with a Mayo doctor whose team had just come across a new study which found that GISTs that have ruptured are always high risk for recurrence. When a GIST ruptures, it spills out cancer cells, seeding the area with little tumors. The tumor rupture increased my risk from 8% to somewhere between 40-60%.
Mayo recommended adjuvant treatment of imatinib (Gleevec). Adjuvant treatment is treatment given along with or after surgery for cancer to reduce the chances that it will come back or at least delay recurrence. I will spare you the details of that experience but after months of enduring various and some rather intense side effects, I developed an autoimmune disorder and was taken off imatinib to see if I would recover. I did not recover and I did not go back on imatinib by my own choice. I continued with 6 month CT scans and then with the encouragement of my oncologist, I skipped my scan in October 2015 as my scan in May 1015 showed no sign of disease and I felt ready to move on to annual scans. Well, not really. I felt like this was what was expected that I do. About that same time, I began to experience lower back pain which I did not feel too concerned about because I have degenerative disease in my lower back and had some lower back pain already. I saw my primary physician during this time and she prescribed physical therapy. The physical therapy helped some but all that movement sometimes made the pain worse. In hindsight, I should have put all this together and realized something was up but I didn't.
The pain became worse over the next few months and began to penetrate through my back into my pelvis. Off I go to the ER in February when the pain was so intense and unrelenting that I knew something was terribly wrong. The ER doc asked me what the pain felt like and I said it felt like tumor pain and that I wanted a CT scan. He agreed, ordered the scan, and there it was, another tumor. "I am sorry to have to tell you that it looks like your cancer has returned". Words I didn't want to hear. I was admitted, had a biopsy (another Exon 11 Gist) and went home. I then met with Dr. Margaret von Mehren at Fox Chase Cancer Center in Philadelphia in March. She is a GIST specialist and her recommendation was to either go back on Gleevec or try sunitinib (Sutent), another drug used to treat GIST. I opted for the Sutent. I was started on a low dose, lower than the recommended dose by the drug manufacturer and, with the exception of a few side effects like fatigue, loss of sense of taste, diarrhea, I tolerated it well. Until my platelets shot up. I then had to go off the Sutent to recover. In the meantime my oncologist in Duluth consulted with Dr. von Mehren who suggested that I decrease my dose of Sutent by half to 12.5 mg. She has seen good tumor response in some patients even at this very low dose. So once my platelets recovered, I went back on Sutent on a 12.5 mg dose and had good tumor response. Hooray! The tumor was shrinking. Well, tumors don't actually shrink. They become necrotic (the cells die off) and the tumor sort of shrivels up a bit. The necrotic part of the tumor no longer "lights up" on the CT scan which is how they know it is responding to the drug. Once the tumor was small enough, it was time to consider surgery. Duluth did not have a surgeon with the expertise and experience to do the surgery so it was suggested that I go to a cancer center that specializes in sarcomas. I decided that Mayo in Rochester would be the easiest option.
The difficulty with my tumors (the Mayo team found that there are actually two tumors, not one) is that they are lying against my uterus and left ovary and iliac crest, and possibly attached. The plan at this point is that both tumors will be removed and I will have a hysterectomy along with removal of ovaries and fallopian tubes and maybe another bowel resection with a temporary Ileostomy while I heal. They won't know for sure what will need to be done until they open me up. The surgeon, Dr. Kumar, said she would use the same incision site as before. (I am thinking that under the circumstances, i. e, my risk for recurrence, she might might want to consider using velcro). Surgery is scheduled for January 19th at Rochester Methodist. I should be in the hospital a couple of days, then one day at a local hotel and then home. My friend Kelly and daughter Katie will be with me. Katie will stay with me for two weeks at home and then my son Matt will come for two weeks. I feel loved and supported by my friends and family and have confidence in my medical team. I am not looking forward to the pain and misery of surgery but by the time spring comes, I should be feeling better, maybe even good.
Katie will write an update after surgery. Thank you all for your prayers, kind thoughts and healing energy. I am sending love back to each of you and am so very grateful for this deeply beautiful, astounding and often confounding, precious human life in this predictably unpredictable world where anything can happen and probably will happen and nothing makes sense and everything makes sense, all at the same time. You know what I mean :)