Anyone have experience with gastrointestinal stromal tumor (GIST)?

Yes, I have a constant worry but it hides in a shadow in my brain and pounces every now and then. My gut surgeon said the average life expection is 5 years, especially without Imitinab. I have heard of some people that live much longer in similar. Are they just lucky?

I guess I would ask how they were able to determine from an autopsy that a recurring fast grow tumor was likely?
My nine-and-a-half hour GIST removal was nearly three years ago. I have a CT scan every three months and so far so good. I guess I would also ask how it got to a point where it was 6 - 7 inches. That seems huge to me.

@sharnell, NED (no evidence of disease) since early 2023 is great! But it is near impossible to shake the worry of recurrence. I'm tagging fellow GIST-ers like @ta52 @frygirl777 @cathych58 @smtoby @mermaid7272 to join the discussion again.

How often do you do follow-up appointments? What helps keep the fear of recurrence at bay or is it a constant companion?

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.