I had a small GIST removed from my duodenum in August 2021 and have had no recurrence. As part of the process I am scanned every three months at Mayo Clinic and, to date, there isn't even a hint of any issues.
Hello friends! I was diagnosed with a 6-7" GIST tumor in November 2022. It was growing from the outer wall of my stomach. It was removed along with a slice of my stomach. There were no other sites but the biopsy was for a likely to recur fast growing tumor. I was started on Imitinab but had to stop after only 6 weeks with dangerous side effects. I am on no meds but follow with CT scans. NED so far but I am worried. Any one else similar?
Hello friends! I was diagnosed with a 6-7" GIST tumor in November 2022. It was growing from the outer wall of my stomach. It was removed along with a slice of my stomach. There were no other sites but the biopsy was for a likely to recur fast growing tumor. I was started on Imitinab but had to stop after only 6 weeks with dangerous side effects. I am on no meds but follow with CT scans. NED so far but I am worried. Any one else similar?
@sharnell, NED (no evidence of disease) since early 2023 is great! But it is near impossible to shake the worry of recurrence. I'm tagging fellow GIST-ers like @ta52@frygirl777@cathych58@smtoby@mermaid7272 to join the discussion again.
How often do you do follow-up appointments? What helps keep the fear of recurrence at bay or is it a constant companion?
@sharnell, NED (no evidence of disease) since early 2023 is great! But it is near impossible to shake the worry of recurrence. I'm tagging fellow GIST-ers like @ta52@frygirl777@cathych58@smtoby@mermaid7272 to join the discussion again.
How often do you do follow-up appointments? What helps keep the fear of recurrence at bay or is it a constant companion?
I guess I would ask how they were able to determine from an autopsy that a recurring fast grow tumor was likely?
My nine-and-a-half hour GIST removal was nearly three years ago. I have a CT scan every three months and so far so good. I guess I would also ask how it got to a point where it was 6 - 7 inches. That seems huge to me.
@sharnell, NED (no evidence of disease) since early 2023 is great! But it is near impossible to shake the worry of recurrence. I'm tagging fellow GIST-ers like @ta52@frygirl777@cathych58@smtoby@mermaid7272 to join the discussion again.
How often do you do follow-up appointments? What helps keep the fear of recurrence at bay or is it a constant companion?
Yes, I have a constant worry but it hides in a shadow in my brain and pounces every now and then. My gut surgeon said the average life expection is 5 years, especially without Imitinab. I have heard of some people that live much longer in similar. Are they just lucky?
I guess I would ask how they were able to determine from an autopsy that a recurring fast grow tumor was likely?
My nine-and-a-half hour GIST removal was nearly three years ago. I have a CT scan every three months and so far so good. I guess I would also ask how it got to a point where it was 6 - 7 inches. That seems huge to me.
OK Tom, you caught my error....it was centimeters, still considered large by NIH standards. BTW, they only do autopsys on dead people. NOT there yet! The tissue is sent to a lab and examined by microscopy to count the number of tumor cells in a section per high power field. That determines how fast it is growing, mine had a lot.
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.
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?
Hello everyone. I have been diagnosed with a 6cm Gist located on the lesser curvature of my stomach. I have been told the the treatment is surgery. Is there any other options that make sense?
Hello everyone. I have been diagnosed with a 6cm Gist located on the lesser curvature of my stomach. I have been told the the treatment is surgery. Is there any other options that make sense?
I also had a 6cm Gist tumor from the greater curve of my stomach. It was about 2.5 yrs ago. I had a very experienced team that removed it. They contained it entirely along with a small sliver of stomach where it originated. Also they were able to check for any other tumor sites and a few neg. lymph nodes. I am now followed by an Oncologist and have scheduled CT scans.
My non-surgery choice was daily oral chemo (Iminitab) for the rest of my life or until it became ineffective, when I would need surgery anyway. This has been my journey but yours will be your own. I only suggest you find the most experienced team of doctors possible.
Feel free to chat with me. I'm here, I care! Sharon
My name is Jojo and I had a CT Scan in June of this year only because after radiation of my right breast in which occurred in 2022 I felt like a lump or knot around my right upper quadrant of my abdomen. Which is the top part of my abdomen has swollen and uncomfortable so the radiologist stated he saw a probable gastrointestinal stromal mass in my abdomen. I then looked it up and it states it’s a GIST. I never heard of this when I had an MRI last year with no mention of a GIST but only a legion on my liver called a hemangioma and my doctor stated he would keep an eye on it for me. Then come to find out I had a GIST all along but never knew about it til June of this year. I was surprised and saddened at the same time! Mine has been unchanged since last year which is a blessing thank you JESUS, but now I’m going for a EUS in August to biopsy it and full resection of the tumor if they are able to. I just fought right breast cancer in 12/31/2020 and I’ve never had problems with my liver or abdomen. My brother passed at age 52 of Metastasize Sarcoma in his right leg. If GIST are 2 cm or more they’re likely Sarcoma. I serve a Mighty God and I stand on his word and promises. Praying for everyone in these different groups!
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I had a small GIST removed from my duodenum in August 2021 and have had no recurrence. As part of the process I am scanned every three months at Mayo Clinic and, to date, there isn't even a hint of any issues.
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2 ReactionsHello friends! I was diagnosed with a 6-7" GIST tumor in November 2022. It was growing from the outer wall of my stomach. It was removed along with a slice of my stomach. There were no other sites but the biopsy was for a likely to recur fast growing tumor. I was started on Imitinab but had to stop after only 6 weeks with dangerous side effects. I am on no meds but follow with CT scans. NED so far but I am worried. Any one else similar?
@sharnell, NED (no evidence of disease) since early 2023 is great! But it is near impossible to shake the worry of recurrence. I'm tagging fellow GIST-ers like @ta52 @frygirl777 @cathych58 @smtoby @mermaid7272 to join the discussion again.
How often do you do follow-up appointments? What helps keep the fear of recurrence at bay or is it a constant companion?
-
Like -
Helpful -
Hug
1 ReactionI guess I would ask how they were able to determine from an autopsy that a recurring fast grow tumor was likely?
My nine-and-a-half hour GIST removal was nearly three years ago. I have a CT scan every three months and so far so good. I guess I would also ask how it got to a point where it was 6 - 7 inches. That seems huge to me.
-
Like -
Helpful -
Hug
1 ReactionYes, I have a constant worry but it hides in a shadow in my brain and pounces every now and then. My gut surgeon said the average life expection is 5 years, especially without Imitinab. I have heard of some people that live much longer in similar. Are they just lucky?
-
Like -
Helpful -
Hug
1 ReactionOK Tom, you caught my error....it was centimeters, still considered large by NIH standards. BTW, they only do autopsys on dead people. NOT there yet! The tissue is sent to a lab and examined by microscopy to count the number of tumor cells in a section per high power field. That determines how fast it is growing, mine had a lot.
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Helpful -
Hug
1 ReactionHola buenas noches
Te agradeceré compartir tu experiencia con la inmunoterapia.
Gracias Juan
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Hello everyone. I have been diagnosed with a 6cm Gist located on the lesser curvature of my stomach. I have been told the the treatment is surgery. Is there any other options that make sense?
I also had a 6cm Gist tumor from the greater curve of my stomach. It was about 2.5 yrs ago. I had a very experienced team that removed it. They contained it entirely along with a small sliver of stomach where it originated. Also they were able to check for any other tumor sites and a few neg. lymph nodes. I am now followed by an Oncologist and have scheduled CT scans.
My non-surgery choice was daily oral chemo (Iminitab) for the rest of my life or until it became ineffective, when I would need surgery anyway. This has been my journey but yours will be your own. I only suggest you find the most experienced team of doctors possible.
Feel free to chat with me. I'm here, I care! Sharon
-
Like -
Helpful -
Hug
1 ReactionMy name is Jojo and I had a CT Scan in June of this year only because after radiation of my right breast in which occurred in 2022 I felt like a lump or knot around my right upper quadrant of my abdomen. Which is the top part of my abdomen has swollen and uncomfortable so the radiologist stated he saw a probable gastrointestinal stromal mass in my abdomen. I then looked it up and it states it’s a GIST. I never heard of this when I had an MRI last year with no mention of a GIST but only a legion on my liver called a hemangioma and my doctor stated he would keep an eye on it for me. Then come to find out I had a GIST all along but never knew about it til June of this year. I was surprised and saddened at the same time! Mine has been unchanged since last year which is a blessing thank you JESUS, but now I’m going for a EUS in August to biopsy it and full resection of the tumor if they are able to. I just fought right breast cancer in 12/31/2020 and I’ve never had problems with my liver or abdomen. My brother passed at age 52 of Metastasize Sarcoma in his right leg. If GIST are 2 cm or more they’re likely Sarcoma. I serve a Mighty God and I stand on his word and promises. Praying for everyone in these different groups!