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 | Mar 7 1:20pm

In reply to @sale "I have a Gist in duodenum. Does anyone have any experience with surgery in that area?" + (show)

I was diagnosed with a duodenal GIST in April 2021 and had surgery in August of the same year. The tumor (about 11 cm) was removed and there were clear margins. I have been scanned every three months since and there is no sign to date of a return. My suggestion would be to not wait on the surgery. The earlier they get to it the better.

jeshaw6801 | @jeshaw6801 | Mar 8 6:37pm

I thought I had gist and I found the life raft group who were wonderful holding me together those three weeks waiting for my pathology report. I turned out to have r-lms. I have since found my LMS group but they aren't near as organized with the support found in the liferaft group.

The Life Raft Group
The Life Raft Group is committed to enhancing the survival and quality of life for people living with Gastrointestinal Stromal Tumor (GIST), and other rare ...

arcay | @arcay | Mar 9 3:32pm

I'm new to this. I starting having back pain last year around this time. And a I had a small mass in my chest . I had a physical scheduled for April and after too many errors by my doctor and his team the MRI was done in July. After that my PCP told me to get my affairs in order, but hadn't consulted an oncologist. Finally got the biopsy results in November and they said it was a GIST. I was in horrible pain then, the GIST has sent tumors to my spine (causing the back pain) and my chest as well as liver. I was put on Imatiniv and within 2 weeks I was seeing results. After the PETSCAN they said the good news was that the tumors hadn't done any damage to my organs, but that it;s incurable. I switched to a PPO to be able to go to whoever I choose. Live the LA area. Any suggestions for doctors would be appreciated.

jeshaw6801 | @jeshaw6801 | Mar 10 11:09am

In reply to @arcay "I'm new to this. I starting having back pain last year around this time. And a..." + (show)

Get in touch with liftRaft....they can help

Colleen Young, Connect Director | @colleenyoung | Mar 21 7:49pm

In reply to @arcay "I'm new to this. I starting having back pain last year around this time. And a..." + (show)

@arcay, good news that the tumors responded well to imatinib (Glivec). If you are looking for a second opinion with Mayo Clinic experts, you can start here: http://mayocl.in/1mtmR63

How are you doing?

pptodd | @pptodd | Apr 8 9:50am

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

My tumor was just found on a MRCP I can’t see surgeon until later this month. Therefore I don’t have a definitive diagnosis. The tumor is wrapped around the head of the pancreas. Radiology report says it is a gastrointestinal stromal tumor. Anxiety is high. The wait is awful.

Barbara | @barbjowilliams | Apr 13 11:18am

Hi,
Yes, I was having rectal bleeding/clots in 2009. I went to my primary care doctor and he examined me and thought that I had colon cancer. A colonoscopy was performed and the diagnosis then was "diverticulitis ". I was still having bleeding and wt. gain issues during the lateral part of 2010, I went to see my Gynecologist for my yearly check up. She noticed large palpitations in my stomach and sent me to the hospital for a CT abd/pelvis w/Contrast. I had a large Vascular tumor wrapped around my Transverse colon. This was right before the
holidays. I had stomach surgery in January 2011, It was a very big tumor and diagnosis was a "GIST " several months later I seen a Sarcoma doctor. He stated that transverse colon tumor was a SFT (Solitary Fibrous Tumor -Sarcoma Stage 1. I was told a rare GIST vs SFT has very similar characteristics. I had PET Scans for several years and then CT abd/pelv w/chest x-ray's every year( 2014 Sigmoid colon had a suspicious area - so I had colon surgery/Sigmoid partially resected). This year August 2025, CT and CXR will be every 2 years, if everything goes well.

jeshaw6801 | @jeshaw6801 | 6 days ago

In reply to @barbjowilliams "Hi, Yes, I was having rectal bleeding/clots in 2009. I went to my primary care doctor..." + (show)

Did you get a genomic analysis?

Colleen Young, Connect Director | @colleenyoung | 6 days ago

In reply to @pptodd "My tumor was just found on a MRCP I can’t see surgeon until later this month...." + (show)

@pptodd, the waiting is the worse part. I can imagine that your mind is racing in circles. I find it can help to have pen and paper or your phone nearby to jot down your questions as you think of them and then move on to something that distracts you that you enjoy.

Have you started a list of questions for the surgeon?

Barbara | @barbjowilliams | 6 days ago

In reply to @jeshaw6801 "Did you get a genomic analysis?" + (show)

Not at first, because looking in my colon only showed the diverticulitis in 2009. Moving forward in late 2010 Gynecologist felt stomach palpitations and ordered a STAT CT abd/ pelv at the hospital.
CT results showed a very large spindle cell tumor was wrapped on the outside around my Transverse colon. They tumor was processed in Histology and assumed GIST even though the C/KIT was negative. A Radiologist recommended that I go to a Duke Oncologist. I seen a Sarcoma Oncologist, and showed his team the staining results along with a pic of this large tumor after resected and he had tumor slides destained and
restained. He told me after restaining slides that tumor was a rare SFT Sarcoma