My GIST was found because I ordered a private blood test, looking for athletic information. My GGT was high so they did an endoscopy and found a golf ball size tumor. I had surgery 6/1/22 and had no other treatment. This week I had a CT scan and there is no sign of recurrence. I'm feeling great and very lucky!
I found out I had a gist on my esophagus in 2015 had 2nd biopsy (endoscopy). and got an infection that turned to encephalitis in my brain! 4 months of no memory severely sick,
,!! They gave me a new drug at the time 1year later called Gleevec it reduced my gist at a surprising rate! I was already for the surgery so I went ahead with it! So sorry I did I didn’t understand all the small problems I would have! I’m so grateful that I had no chemo no radiation other drs say my surgery was done well ! But I choke a lot and it took two years to get my gut settled and I have to eat 6-8 times a day and I can’t sleep flat !!! Before all this I had a constant choking cough never found out why!!! 14 years still coughing! Now today I found out I have colon cancer and the new adventures begin!!!!!! So any advice is appreciated!
Brandi, you've been through a lot. Having surgery to the esophagus is no picnic. I think you might also appreciate following the discussions of the Esophageal Cancer Support Group as well: https://connect.mayoclinic.org/group/esophageal-cancer/
I found out I had a gist on my esophagus in 2015 had 2nd biopsy (endoscopy). and got an infection that turned to encephalitis in my brain! 4 months of no memory severely sick,
,!! They gave me a new drug at the time 1year later called Gleevec it reduced my gist at a surprising rate! I was already for the surgery so I went ahead with it! So sorry I did I didn’t understand all the small problems I would have! I’m so grateful that I had no chemo no radiation other drs say my surgery was done well ! But I choke a lot and it took two years to get my gut settled and I have to eat 6-8 times a day and I can’t sleep flat !!! Before all this I had a constant choking cough never found out why!!! 14 years still coughing! Now today I found out I have colon cancer and the new adventures begin!!!!!! So any advice is appreciated!
Yes I was diagnosed in 2019 I’ve taking 3 types of medication and now I’m taking votrient. I went to moffitt cancer center to have the timer in my liver removed but when they went in to remove part of my liver they notice more small tumors on my intestines walls so they didn’t do the surgery because of the high risk. This they didn’t see on the scan but saw them when they went to do the surgery
My GIST was found because I ordered a private blood test, looking for athletic information. My GGT was high so they did an endoscopy and found a golf ball size tumor. I had surgery 6/1/22 and had no other treatment. This week I had a CT scan and there is no sign of recurrence. I'm feeling great and very lucky!
I was first mjsdiagnosed in 1984 as bleeding into a pre-existing liver cyst, I was told it was the size of a small orange. In 2000 an incidental finding showed it was somewhat bigger. Referred to a Regional specialist surgeon he decided if it wasn't affecting me, to leave it. By 2008 I was suffering extreme indigestion, drinking a large bottle of Gaviscon every few days. A CT scan then identified that it had grown down into my pelvis. I was offered surgery and accepted as I didn't want to become an emergency admission, my abdomen was so distended by this time that I was being called "the fat controller" . The tumour started in my stomach wall, 2/3 of my stomach removed along with my duodenum and gall bladder. At the other end they removed my caecum, appendix, ascending colon and half my transverse colon. 6 hours in surgery 7kg of tissue removed and a mercedes sign carved on my abdomen. Good news, eating after 5 days, home in a week, no positive tumour markers, no chemo or radiotherapy and no recurrence in 15 years. Pretty mind blowing at the time and it took a while before I could eat a big meal. So my advice, don't let it get to the size mine did, don't be fobbed off, get it done.
I was diagnosed with a GIST tumor in 2018. I underwent robotic surgery to have the tumor removed. 1/3 of my stomach was removed during surgery due to the tumor being imbedded deep within my stomach wall.
It is 4 years later, and except for small meals 6x a day in lieu of 3 large regular meals, I have not had any aftereffects of this journey. It was concluded that if cancer cells were present, they were of a "slow" growth kind. I had follow ups every 6 months and my last visit in 2021, I was released from further follow ups.
This sounds so encouraging. I hope that my GIST is not too deeply embedded in my abdominal wall. My surgeon thinks an hour and a half is what it will take. But of course the actual surgery determines everything.
My partial robotic surgery was scheduled for Feb. 15 but has been postponed. I have a tentative date for March 8. My worry about waiting is if it spreads to liver or pancreas. But I am feeling great and working every day.
I am about to undergo surgery for a GIST (approx 3 x 4 mm) in the deep curvature of my stomach. Have felt very little pain except when I vomited blood once and thats how it was discovered. They found a 1 time ulcer and the GIST. Looking forward to getting to the same place you are now. Thanks for posting.
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I have had coughing and other symptoms also losing weight.
What was the name of the blood test that found the elevated GGT please?
Hi @suitebrandi, welcome. You've come to a good place to connect with others living with GIST like @mwebste1 @deejay1950 @martiy @chayatexas @poula and others.
Brandi, you've been through a lot. Having surgery to the esophagus is no picnic. I think you might also appreciate following the discussions of the Esophageal Cancer Support Group as well: https://connect.mayoclinic.org/group/esophageal-cancer/
Members of the esophageal cancer are familiar with many of the trials and tribulations you are facing. See this discussion where members talk about chronic cough and choking.
- Excessive Mucus with Esophageal Cancer https://connect.mayoclinic.org/discussion/excessive-mucus-with-esophageal-cancer/
Colorectal cancer too?! There's a specific group for that here:
- Colorectal Cancer support group https://connect.mayoclinic.org/group/colorectal-cancer/
Brandi, do you have Lynch syndrome? Have other members of your family had cancer?
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4 ReactionsI found out I had a gist on my esophagus in 2015 had 2nd biopsy (endoscopy). and got an infection that turned to encephalitis in my brain! 4 months of no memory severely sick,
,!! They gave me a new drug at the time 1year later called Gleevec it reduced my gist at a surprising rate! I was already for the surgery so I went ahead with it! So sorry I did I didn’t understand all the small problems I would have! I’m so grateful that I had no chemo no radiation other drs say my surgery was done well ! But I choke a lot and it took two years to get my gut settled and I have to eat 6-8 times a day and I can’t sleep flat !!! Before all this I had a constant choking cough never found out why!!! 14 years still coughing! Now today I found out I have colon cancer and the new adventures begin!!!!!! So any advice is appreciated!
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Helpful -
Hug
2 ReactionsMy GIST was found because I ordered a private blood test, looking for athletic information. My GGT was high so they did an endoscopy and found a golf ball size tumor. I had surgery 6/1/22 and had no other treatment. This week I had a CT scan and there is no sign of recurrence. I'm feeling great and very lucky!
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Like -
Helpful -
Hug
1 ReactionI was first mjsdiagnosed in 1984 as bleeding into a pre-existing liver cyst, I was told it was the size of a small orange. In 2000 an incidental finding showed it was somewhat bigger. Referred to a Regional specialist surgeon he decided if it wasn't affecting me, to leave it. By 2008 I was suffering extreme indigestion, drinking a large bottle of Gaviscon every few days. A CT scan then identified that it had grown down into my pelvis. I was offered surgery and accepted as I didn't want to become an emergency admission, my abdomen was so distended by this time that I was being called "the fat controller" . The tumour started in my stomach wall, 2/3 of my stomach removed along with my duodenum and gall bladder. At the other end they removed my caecum, appendix, ascending colon and half my transverse colon. 6 hours in surgery 7kg of tissue removed and a mercedes sign carved on my abdomen. Good news, eating after 5 days, home in a week, no positive tumour markers, no chemo or radiotherapy and no recurrence in 15 years. Pretty mind blowing at the time and it took a while before I could eat a big meal. So my advice, don't let it get to the size mine did, don't be fobbed off, get it done.
This sounds so encouraging. I hope that my GIST is not too deeply embedded in my abdominal wall. My surgeon thinks an hour and a half is what it will take. But of course the actual surgery determines everything.
My partial robotic surgery was scheduled for Feb. 15 but has been postponed. I have a tentative date for March 8. My worry about waiting is if it spreads to liver or pancreas. But I am feeling great and working every day.
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2 ReactionsWelcome @chayatexas @poula and @martiy.
Martiy, when is your surgery scheduled for?
Poula, do you know what type of chemotherapy you will be getting?
Chayatexas, what is your inspiration that keeps you ground and give purpose?
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2 ReactionsI am about to undergo surgery for a GIST (approx 3 x 4 mm) in the deep curvature of my stomach. Have felt very little pain except when I vomited blood once and thats how it was discovered. They found a 1 time ulcer and the GIST. Looking forward to getting to the same place you are now. Thanks for posting.