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

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@fredkj

Ok yes they notice a couple of hundred small spots like buckshots all over my intestines and I have a few spots as well in my liver. They refuse to do the surgery because of high risk. Do anyone know any cancer. Institute that May be able to perform surgery in a case like this. Please let me know. Thanks

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Intestinal lymphangiectasia?

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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.

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@cathych58

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

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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.

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@frygirl777

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.

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

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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.

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@colleenyoung

Welcome @fredkj. I'm tagging a few other members like @ta52 @kakb @anxious4nothing @amyj2022 who have experience with gastrointestinal stromal tumors (GIST).

While we wait for other to chime in, can you share a bit more about yourself? Have you recently been diagnosed with GIST? What treatment(s) will you or are you having? How are you doing?

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

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@mermaid7272

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!

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

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@ta52

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.

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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!

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@mwebste1

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!

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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.

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@martiy

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.

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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.

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