Anyone have experience with gastrointestinal stromal tumor (GIST)?

Thank you for the warm welcome, will post more once there are changes and improvements after a month.

Mine was larger than yours and they removed it (ended up in ER). Currently (3 mo later) on Imatinib and doing great.

Yes, I've already registered there. Thank you again for sharing! 👍🙌🙏

Hello @avidthinker and welcome to Mayo Connect. I appreciate you joining this discussion on GIST. I so like what you said in your second post about how important it is to have "a specialist that specializes in GIST and to seek second opinion if you are not comfortable with your current medical provider." Those are some important guidelines that can help you advocate for yourself when you have a health issue, especially if it is rare.

You mentioned that you are considering surgery. Does this indicate that a physician has recommended surgery at this time?

Are you comfortable sharing more about your journey with GIST? If so, please share what your symptoms were and how this was diagnosed.

Thank you for sharing the link, will be surely helpful for me as I'm still new to GIST and still thinking about doing surgery or not.

Look into joining the GIST Support International ( gistlistserv)
There is an online support group with a wealth of information and support for patients ,caregivers and families. It has been a lifeline for a dear friend when newly diagnosed Most important is to have a specialist that specializes in GIST and to seek second opinion if you are not comfortable with your current medical provider.

Hello @shannona and welcome to Connect. I see that you recently posted about GIST tumors in your pelvis and omentum. I am sure that you are glad that your tumors appear to be shrinking.

You are asking some good questions about immunotherapy. As I looked for other members with cancer in the area of the pelvis and omentum, I see that many are members in the area of gynecological cancers. Was the cancer in your pelvis a gynecological cancer as well?

I did look for some information on GIST tumors and immunotherapy and found information on the National Institute of Health website:

--Current Status of Immunotherapy for Gastrointestinal Stomal Tumors
https://pubmed.ncbi.nlm.nih.gov/28186088/
Have you discussed the option of immunotherapy with your oncology team?

I was diagnosed 6 months ago with stage IV GIST tumors in my pelvis and omentum. I am 53, otherwise healthy and on Imatinib and the tumors appear to be shrinking. My question is, is there no immunotherapy available? It seems like for all the clinical trials, you have to have been on Imatinib or others for years and it no longer works. By that time, I would think, a person may have kidney, liver, or heart problems and years of a decreased quality of life.

Hi there.
I was diagnosed with a golf ball sized hemorrhaging GIST in 2004. I was 33 at the time and very little was known about them then. I had a complete resection along with 20% of my stomach removed.
The first three years I did PET/CT scans every 6 months along with endoscopic ultrasounds. Now I do yearly endoscopies and colonoscopies. It’s 18 years now. At my last one they found a submucossal tumor in my Cecum and removed half of that along with my appendix. Thankfully it was benign. I have also had thyroid cancer and 2 different breast cancers since then.

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