Anyone been diagnosed with GIST Tumor in the stomach?

Please make sure your surgeon has performed gist surgeries. Its different than normal surgeon. Always ask your surgein how many gist surgeries has he performed.

Jason sicklick is a ca gist specialist

That is important, @tara58, thanks for pointing that out. The experience of a surgeon (especially in treating a rare disorder) is very important.

I was told I have a 3 cm gist (biopsied by endoscopic surgery) and waiting am waiting for an appointment with a gastroenterologist. Are their gist specialist at the Mayo Clinic in Rochester, MN - cause my appointments time locally is to over 6 weeks for a surgeon and I don't even know if he's a gist specialist. Thx for your help.

Hello @kakb and welcome to Mayo Connect. I checked on Mayo's website and they do have information about GIST. Here is the link, https://www.mayoclinic.org/diseases-conditions/gastrointestinal-stromal-tumors/cdc-20387715. There you will find a place to call about an appointment. If you call, they will undoubtedly give you information about specialists in GIST.

I have personally had three surgeries of the upper digestive tract to remove NETs in the duodenal bulb. I know how important it is to get a good surgeon.

If you care to share more about this diagnosis: How long ago was this diagnosed? What type of symptoms led to the EGD? What information has your doctor given you about this type of surgery?

I look forward to hearing from you. I hope you are able to feel good about your choice of surgeons. Having confidence in your surgeon is important.

Hi @kakb,

GISTs are soft-tissue sarcomas that can be located in any part of the digestive system. Their most common sites are the stomach and small intestine. Each year, Mayo Clinic doctors care for more than 2,000 people with soft tissue sarcoma, including very rare types. This means your care team is prepared with the knowledge and resources to provide you with exactly the care you need. Here’s some more information about care at Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/soft-tissue-sarcoma/care-at-mayo-clinic/mac-20377736

If you’d like a second opinion from Mayo Clinic, please call one of our appointment offices – you can also request an appointment online. The contact information for all 3 Mayo Clinic locations (Minnesota, Arizona, Florida) can be found here: http://mayocl.in/1mtmR63
The Clinic’s representatives/schedulers will ask questions to help direct you to the best specialist.
I wish you the best of luck.

Earlier this year, I was diagnosed with a 2.5cm GIST at the end of my GI tract. I’ve been on imatinib since June 15. It’s embedded in my sphincter muscle so we are trying to shrink it before surgery. I do not want them to dig into my sphincter muscle because I would be on a colonoscopy bag and I will not live like that. I am getting a MRI every 2 months to see if the meds are working. Next one is Dec 2.

The Life Raft Group is a good source of information and support for GIST.

Hi Debbie, welcome. Have you been diagnosed with GIST?

Hi,
I am 52, 6' tall, 188 pounds when this started and had just finished a 1/2 marathon. on June 16, 2024, I have a "cystic and solid mass measuring 7.0 cm x 12.9 cm x 11.8 cm arising from the greater curve aspect of the stomach" I equate this to a very healthy mango or small pineapple, in my stomach lining! I don't know how, I do not have a gut.

I had very little symptoms when this was discovered, other than chest pain when running. Since discovering this mass, I have started to get the following symptoms: extreme fatigue, weightloss (down 20 lbs to 168 lbs), constipation, stomach pain, upper back pain, no appetite, bloating, and not to mention anxiety about the future. I take 2 tylenol every 6 hours otherwise the pain is excessive. I believe I need somthing stronger but I tried T3's (tylenol with codeine) but it made me constipated and much worse.

I am waiting for my Biopsy results, (It's been over a month since discovering the mass). In the meantime its hard not to think with the size of the mass that it's late stage...But to be positive, if it is a GIST, and non-cancerous. Is it possible to partially remove my stomach so I can live a somewhat normal life? how long to get surgery? What painkillers would people recommend for me? thinking about THC gummies but never tried them and don't want to be out of it all the time. Just the pain is constant. Wondering if Tylenol has any withdrawl symptoms.

Any other information anyone can provide would help alot. Honestly, I've talked to no professional at any length about this. I don't want to burden my wife.

Thanks,
-Tim
(from Vancouver, Canada)