I am a healthy specimen. Other than giving birth to 5 children, I had no reason to be admitted to any hospital.
2 weeks prior to Sept 6, 2018, I had an episode where I had a horrible black, tarry stool. I felt faint and weak but I ignored it, not really knowing the severity of what just happened to me.
On Sept 6, I had another episode, no bowel movement, but feeling faint and weak. I went to my PCP who did a blood work sample, where my hemoglobin was at 6 and my blood pressure was 90/60.
She immediately stated that I needed to be in an emergency room. I went and was admitted to the hospital, where I received 2 units of blood, a CT scan and an endoscopy. At first what I was hearing was I had a “bleeding ulcer” which was biopsied and results were benign for cancer.
When I was dismissed on Sept 10, 2018 from the hospital the term now was that I have a “GIST tumor”. Surgery is recommended. I have talked to a surgeon who have advised me that a second biopsy is necessary and depending on that biopsy, would determine if my surgery will be minor or major!! I could go to sleep with my stomach intact and wake up with my stomach removed. I am right now seeking a Gastroenterologist for a second opinion. Needless to say, this journey is challenging being a 75 year old woman on a Medicare advantage plan!
Sorry, I know this is wordy but I want input on this issue!!
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.
I am glad to hear that you are feeling fine now, @anxious4nothing. That is a good thing!
You were wondering how to find out about getting a second opinion from outside of your chosen medical group. The best way to get that information is to call your Medicare Advantage insurance company.
You mention living in California. There are many university medical centers in California, however, I'm not sure how close they are to you.
Perhaps a friend or family member can assist you in making these calls and helping you to find the best place for a second opinion.
I wish you well. Will you keep in touch and let me know how you are doing?
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.
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.
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.
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.
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.
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.
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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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1 ReactionJason sicklick is a ca gist specialist
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1 ReactionThat 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.
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1 ReactionHello @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.
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Helpful -
Hug
1 ReactionHi @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.
-
Like -
Helpful -
Hug
2 ReactionsEarlier 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)