Anyone have experience with gastrointestinal stromal tumor (GIST)?
Is there anyone in the group has any info on this issue. Have some been through this are know anyone who has that can have any helping info
Interested in more discussions like this? Go to the Sarcoma Support Group.
Hi @suitebrandi, welcome. You've come to a good place to connect with others living with GIST like @mwebste1 @deejay1950 @martiy @chayatexas @poula and others.
Brandi, you've been through a lot. Having surgery to the esophagus is no picnic. I think you might also appreciate following the discussions of the Esophageal Cancer Support Group as well: https://connect.mayoclinic.org/group/esophageal-cancer/
Members of the esophageal cancer are familiar with many of the trials and tribulations you are facing. See this discussion where members talk about chronic cough and choking.
- Excessive Mucus with Esophageal Cancer https://connect.mayoclinic.org/discussion/excessive-mucus-with-esophageal-cancer/
Colorectal cancer too?! There's a specific group for that here:
- Colorectal Cancer support group https://connect.mayoclinic.org/group/colorectal-cancer/
Brandi, do you have Lynch syndrome? Have other members of your family had cancer?
I found out I had a gist on my esophagus in 2015 had 2nd biopsy (endoscopy). and got an infection that turned to encephalitis in my brain! 4 months of no memory severely sick,
,!! They gave me a new drug at the time 1year later called Gleevec it reduced my gist at a surprising rate! I was already for the surgery so I went ahead with it! So sorry I did I didn’t understand all the small problems I would have! I’m so grateful that I had no chemo no radiation other drs say my surgery was done well ! But I choke a lot and it took two years to get my gut settled and I have to eat 6-8 times a day and I can’t sleep flat !!! Before all this I had a constant choking cough never found out why!!! 14 years still coughing! Now today I found out I have colon cancer and the new adventures begin!!!!!! So any advice is appreciated!
My GIST was found because I ordered a private blood test, looking for athletic information. My GGT was high so they did an endoscopy and found a golf ball size tumor. I had surgery 6/1/22 and had no other treatment. This week I had a CT scan and there is no sign of recurrence. I'm feeling great and very lucky!
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?