Anyone have experience with gastrointestinal stromal tumor (GIST)?

I was first mjsdiagnosed in 1984 as bleeding into a pre-existing liver cyst, I was told it was the size of a small orange. In 2000 an incidental finding showed it was somewhat bigger. Referred to a Regional specialist surgeon he decided if it wasn't affecting me, to leave it. By 2008 I was suffering extreme indigestion, drinking a large bottle of Gaviscon every few days. A CT scan then identified that it had grown down into my pelvis. I was offered surgery and accepted as I didn't want to become an emergency admission, my abdomen was so distended by this time that I was being called "the fat controller" . The tumour started in my stomach wall, 2/3 of my stomach removed along with my duodenum and gall bladder. At the other end they removed my caecum, appendix, ascending colon and half my transverse colon. 6 hours in surgery 7kg of tissue removed and a mercedes sign carved on my abdomen. Good news, eating after 5 days, home in a week, no positive tumour markers, no chemo or radiotherapy and no recurrence in 15 years. Pretty mind blowing at the time and it took a while before I could eat a big meal. So my advice, don't let it get to the size mine did, don't be fobbed off, get it done.

This sounds so encouraging. I hope that my GIST is not too deeply embedded in my abdominal wall. My surgeon thinks an hour and a half is what it will take. But of course the actual surgery determines everything.

My partial robotic surgery was scheduled for Feb. 15 but has been postponed. I have a tentative date for March 8. My worry about waiting is if it spreads to liver or pancreas. But I am feeling great and working every day.

Welcome @chayatexas @poula and @martiy.

Martiy, when is your surgery scheduled for?

Poula, do you know what type of chemotherapy you will be getting?

Chayatexas, what is your inspiration that keeps you ground and give purpose?

I am about to undergo surgery for a GIST (approx 3 x 4 mm) in the deep curvature of my stomach. Have felt very little pain except when I vomited blood once and thats how it was discovered. They found a 1 time ulcer and the GIST. Looking forward to getting to the same place you are now. Thanks for posting.

@fredkj Sorry for the delay; this one must have slipped through the cracks. I had GIST surgery in August 2021 where they removed an 11 mm tumor from my duodenum. Clear margins and -- so far -- no recurrence. I have CT scans every three months to monitor but no medication or other follow-up has been needed.

You mentioned the GIST support group and, in my opinion, I found it to be a negative experience. A lot of complaining whereas here at Mayo Connect I see (and receive) tons of positive information and terrific support. Again, that's just my two cents.

Hi there,
I’ve been diagnosed with Retroperitoneal Leiomyosarcoma in 2020
I’ve had surgery and removed big tumour including spleen,part of intestines,
and some of lymph nodes.After six months it’s appear to have recurrence and was unresectable. Radiation was next optoin wich seems shrink the tumour.
After 2 years CT scan shows slow progress on radiation site but doesn’t have metastasis on other organs.Surgey is high risc.Is anyone have the same condition and let me know their experience.Is any hemotherapy can help?

Hello All,
I have had GIST for 6 years now.
Diagnosed in 2017 with metastatic disease to my liver. Mets continue to grow.
Primary tumor is in the 2nd portion of of my duodenum and I just keep changing meds to somewhat continue to carry on.
Some days I feel normal other days not as much. My suggestion is to try and find a purpose that inspires passion in yourself and keep on pushing.

I can imagine you feel a bit lost. Hopefully you'll be celebrating the holidays with family to help pass the time more quickly until you meet with the surgeon.

If you wish to seek a second opinion at Mayo Clinic, you'll find all the info you need to get started here: http://mayocl.in/1mtmR63

Have you started writing down your questions? What will you ask your doc?

Thank you for asking. PET scan was 7 days ago. I am have an appointment with surgeon in about 3 weeks.
I feel kind of lost. The test results are posted to my account, but that does not mean I don’t have lots of questions. I would go somewhere for another opinion, but have no idea how to do that.
As far as I can tell from reading my PET scan, my GIST has not metastasized and may be on my stomach. Doc here said that the PET would show the size, but I can’t find that on the report.