Anyone have experience with gastrointestinal stromal tumor (GIST)?

Posted by fredkj @fredkj, Oct 11, 2022

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.

frygirl777 | @frygirl777 | Jul 13, 2023

In reply to @cathych58 "I have a very small cyst in pancreas too. They haven’t talked about that much. Thanks" + (show)

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.

cathych58 | @cathych58 | Jul 13, 2023

In reply to @frygirl777 "I had one removed from the fundus of my stomach in January. I had a distal..." + (show)

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

frygirl777 | @frygirl777 | Jul 13, 2023

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.

cathych58 | @cathych58 | Jul 12, 2023

In reply to @colleenyoung "Welcome @fredkj. I'm tagging a few other members like @ta52 @kakb @anxious4nothing @amyj2022 who have experience..." + (show)

Just diagnosed with a 2 cm gist in the duodenum. Waiting for results of surgical consult.

Tom Anderson | @ta52 | Feb 7, 2023

In reply to @mermaid7272 "Yep, I had a small one about 10 + - years ago. No problems, no growth,..." + (show)

I wasn't too fond of the ill-fitting NG tube!

mermaid7272 | @mermaid7272 | Feb 7, 2023

In reply to @ta52 "It's not going to grow much in three weeks. Mine didn't grow at all from the..." + (show)

Yep, I had a small one about 10 + - years ago.
No problems, no growth, easy surgery, and no after-problems.
They only bad thing was a rude and narcistic (sp.) surgeon in a nasty hospital!

Tom Anderson | @ta52 | Feb 6, 2023

In reply to @mwebste1 "My GIST was found because I ordered a private blood test, looking for athletic information. My..." + (show)

We're on the same track! I have had no recurrence in 1 1/2 years but I still have scans every three months. They do have a tendency to come back but with regular scans we will be way ahead of the game.

Tom Anderson | @ta52 | Feb 6, 2023

In reply to @martiy "My partial robotic surgery was scheduled for Feb. 15 but has been postponed. I have a..." + (show)

It's not going to grow much in three weeks. Mine didn't grow at all from the time it was first spotted in April until it was removed in August. Most GISTs grow very slowly.