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Hi there! Anyone been diagnosed with GIST Tumor in the stomach! Would love to hear from you!!
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.
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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.
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.
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