1. < Sarcoma

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.

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)
@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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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)
@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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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.

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1 reply
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)
@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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1 reply
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)
@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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chrissiebee | @chrissiebee | Jul 17, 2023

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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309bella | @309bella | Jul 20, 2023
In reply to @fredkj "Ok yes they notice a couple of hundred small spots like buckshots all over my intestines..." + (show)
@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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smtoby | @smtoby | Dec 12, 2023

Anyone have GIST? Just trying to find others

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3 replies
mermaid7272 | @mermaid7272 | Dec 13, 2023
In reply to @smtoby "Anyone have GIST? Just trying to find others" + (show)
@smtoby

Anyone have GIST? Just trying to find others

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You should explain what GIST is.
"Gastro Intestinal Stromal Tumor"

I had one, 10 years ago.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 14, 2023
In reply to @smtoby "Anyone have GIST? Just trying to find others" + (show)
@smtoby

Anyone have GIST? Just trying to find others

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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?

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