I had a small GIST removed from my duodenum in August 2021 and have had no recurrence. As part of the process I am scanned every three months at Mayo Clinic and, to date, there isn't even a hint of any issues.
Welcome, @smtoby. I moved your message about searching for other members who live with gastrointestinal stromal tumor (GIST) to this existing discussion:
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
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.
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.
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.
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.
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?
Connect
Connect
Like
Helpful
Hug
I had a small GIST removed from my duodenum in August 2021 and have had no recurrence. As part of the process I am scanned every three months at Mayo Clinic and, to date, there isn't even a hint of any issues.
-
Like -
Helpful -
Hug
2 ReactionsWelcome, @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?
-
Like -
Helpful -
Hug
1 ReactionYou should explain what GIST is.
"Gastro Intestinal Stromal Tumor"
I had one, 10 years ago.
-
Like -
Helpful -
Hug
1 ReactionAnyone have GIST? Just trying to find others
Intestinal lymphangiectasia?
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.
-
Like -
Helpful -
Hug
2 ReactionsWill 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.
-
Like -
Helpful -
Hug
1 ReactionI have a very small cyst in pancreas too. They haven’t talked about that much. Thanks
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.
-
Like -
Helpful -
Hug
2 ReactionsJust diagnosed with a 2 cm gist in the duodenum. Waiting for results of surgical consult.