Anyone have experience with gastrointestinal stromal tumor (GIST)?

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.

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 ...

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.

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