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.
in 2021 i had a Gist removed the size of an md apple pluss 10 pc of my stomach 6 month after they docs found cancer in my left Kidney tube i had 4 goes at removing the cancer with lazer the last 8 months now they want to see if i am suitable to remove the kidney i am at high risk because of age 81 A F and Kemo tablets part from that i am a normal 81 yr going 70 loving life not too sure what to do about the operation!
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
Hello all,
I've had a CT scan of the whole abdomen last month because of a pulsating rhythm in my stomach. They found a large mass lesion of 8.8x9.9 x 10cm by size and said it's a possible GIST.
I'm now going to try Immunotherapy hoping it will shrink before going for surgery.
Hope we can all help each other by sharing our experiences here.
in 2021 i had a Gist removed the size of an md apple pluss 10 pc of my stomach 6 month after they docs found cancer in my left Kidney tube i had 4 goes at removing the cancer with lazer the last 8 months now they want to see if i am suitable to remove the kidney i am at high risk because of age 81 A F and Kemo tablets part from that i am a normal 81 yr going 70 loving life not too sure what to do about the operation!
While we wait for other to chime in, can you share a bit more about yourself? Have you recently been diagnosed with GIST? What treatment(s) will you or are you having? How are you doing?
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
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.
While we wait for other to chime in, can you share a bit more about yourself? Have you recently been diagnosed with GIST? What treatment(s) will you or are you having? How are you doing?
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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.
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Like -
Helpful -
Hug
2 ReactionsOk 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
-
Like -
Helpful -
Hug
1 ReactionHello all,
I've had a CT scan of the whole abdomen last month because of a pulsating rhythm in my stomach. They found a large mass lesion of 8.8x9.9 x 10cm by size and said it's a possible GIST.
I'm now going to try Immunotherapy hoping it will shrink before going for surgery.
Hope we can all help each other by sharing our experiences here.
Thank you.
-
Like -
Helpful -
Hug
1 Reactionin 2021 i had a Gist removed the size of an md apple pluss 10 pc of my stomach 6 month after they docs found cancer in my left Kidney tube i had 4 goes at removing the cancer with lazer the last 8 months now they want to see if i am suitable to remove the kidney i am at high risk because of age 81 A F and Kemo tablets part from that i am a normal 81 yr going 70 loving life not too sure what to do about the operation!
-
Like -
Helpful -
Hug
5 ReactionsYes 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
-
Like -
Helpful -
Hug
3 ReactionsI 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.
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Helpful -
Hug
8 ReactionsWelcome @fredkj. I'm tagging a few other members like @ta52 @kakb @anxious4nothing @amyj2022 who have experience with gastrointestinal stromal tumors (GIST).
While we wait for other to chime in, can you share a bit more about yourself? Have you recently been diagnosed with GIST? What treatment(s) will you or are you having? How are you doing?
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Helpful -
Hug
2 Reactions