Anyone have experience with gastrointestinal stromal tumor (GIST)?

Hello friends! I was diagnosed with a 6-7" GIST tumor in November 2022. It was growing from the outer wall of my stomach. It was removed along with a slice of my stomach. There were no other sites but the biopsy was for a likely to recur fast growing tumor. I was started on Imitinab but had to stop after only 6 weeks with dangerous side effects. I am on no meds but follow with CT scans. NED so far but I am worried. Any one else similar?

I had a small GIST removed from my duodenum in August 2021 and have had no recurrence. As part of the process I am scanned every three months at Mayo Clinic and, to date, there isn't even a hint of any issues.

Welcome, @smtoby. I moved your message about searching for other members who live with gastrointestinal stromal tumor (GIST) to this existing discussion:

- Anyone have experience with gastrointestinal stromal tumor (GIST)? https://connect.mayoclinic.org/discussion/gist-cancer/

I did this so that you can read previous messages and easily connect with other GIST members like @mermaid7272 @anxious4nothing @tara58 @kakb @lisaikwang @umberta @fredkj @avidthinker @seracut @shannona @milesboysen @mizamymac @chayatexas @ta52 @martiy @cathych58 and others.

Toby, is this a recent diagnosis for you? How are you doing?

You should explain what GIST is.
"Gastro Intestinal Stromal Tumor"

I had one, 10 years ago.

Anyone have GIST? Just trying to find others

Intestinal lymphangiectasia?

In searching for my cancer which is bladder, I happened to see this post on GIST. My dear girlfriend had GIST back in the early 2000s, I think it was 2001 or 2003. She had surgery and no radiation or chemo. She has not
had any recurrence of the cancer, fortunately. She is doing fine and is now 80 years old. Just wanted to give some encouraging news.

Will they be doing a biopsy soon to determine if it’s cancer? The sooner, the better since pancreatic cancer grows very quickly! Catching it early, before it starts growing outside the pancreas, is key! Mine was stage 1B but it’s never early enough with this disease. I just had a CT scan done yesterday as on my recent PET scan they saw a spot below my liver in my peritoneum so they don’t know if it’s metastases already. I am quite concerned. The waiting for results is the hardest part.

I have a very small cyst in pancreas too. They haven’t talked about that much. Thanks

I had one removed from the fundus of my stomach in January. I had a distal pancreatectomy with splenectomy at the same time to remove a large tumor in my pancreas. 3% of my stomach was removed along with the 2-3 cm GIST. Surgeon said they can turn from benign to malignant so best to get it removed at the same time. They normally never recur once removed. The healing was not too bad. Just no heavy lifting or strenuous exercise for 6 - 8 weeks. Everyone heals at their own pace.