@isaiah5417nt, when I had a blockage in my small intestine in 2018, they also found one in my stomach, but said at the time that it was “too dangerous to remove”, so in 2021 I went through PRRT at Mayo in Phoenix. It’s still there, hasn’t decreased nor grown. I’m now waiting to be seen by an oncologist more specialized in treating neuroendocrine tumors than my current oncologist. So I’ll be interested to hear if he/she has any other ideas. I would consider another round of PRRT.
What are your doctors saying?
In January I was diagnosed with NETs in my stomach. My GI doctor said I had 90 to 100 polyps in the stomach and some are NETs. My GI doctor and oncologists wants me to have my stomach removed but so far I have not approved the surgery. My Endocrinologist wants to start me on Octreotide injections which I hope to begin in a week or so.
@isaiah5417nt, when I had a blockage in my small intestine in 2018, they also found one in my stomach, but said at the time that it was “too dangerous to remove”, so in 2021 I went through PRRT at Mayo in Phoenix. It’s still there, hasn’t decreased nor grown. I’m now waiting to be seen by an oncologist more specialized in treating neuroendocrine tumors than my current oncologist. So I’ll be interested to hear if he/she has any other ideas. I would consider another round of PRRT.
What are your doctors saying?
When I found out that I had to have surgery on my stomach because it was Distended that when they're seen inside of my stomach in the small intestines they found the tumors they removed as much as they could out of my small intestines and told me that It was metastatic and that it had spread to one of my lymph nodes In my stomach so what they're doing now they are watching it I have to go every 6 months to get a pet scan also I have to go every 6 months and get a cat scan of my stomach chest And Pelvis Also I have to take labs every 6 months they are checking my levels to make sure that everything is staying OK yes sometimes they are all but it's other things that contribute to that is well I do have stomach pain sometime Often sometimes I get nauseated cramping so all I can do is just take the medication to help me stop one through these pains and nauseousness that I have Every day is a different day so I have to deal with it day-by-day and see how it takes me so far I'm doing OK with it I eat well I eat very healthy I try to make everybody else and my family eat healthy but I get angry because I can't eat the way I used to eat and that makes me very mad I was 216 pounds Last year now I'm down to a 146 pounds So I'm just trying to deal with it day-by-day that's my story so far
Jume 2022 .. I had a routine colonoscopy & endoscopy .. they found a 4-5 mm malignant NET tumor embedded in the lining of my stomach. The tumor was removed but the edge of my tumor tested positive. I go to my NEW Oncologist (my 2nd visit) this Tuesday to get results from a bunch of tests. I will probably need surgery where they will remove a portion of my stomach. Is anxiety part of the disease or is it me being worried?? My emotions are all over the place. I can't wait to get this behind me. I am currently at UTSouthwestern in Dallas and feel so blessed to find my Oncologist who specializes in stomach NETS. I am 66 years old and this is my first journey with this disease.
In January I was diagnosed with NETs in my stomach. My GI doctor said I had 90 to 100 polyps in the stomach and some are NETs. My GI doctor and oncologists wants me to have my stomach removed but so far I have not approved the surgery. My Endocrinologist wants to start me on Octreotide injections which I hope to begin in a week or so.
I had 100 tumors in my stomach. Many were polyps, however 5 were biopsied and all were 5 cm and Grade 3 nets with KI-67 of 25 (well-differentiated). I was advised by MDAnderson that I would not survive the gastrectomy. Next endoscope showed all 100 were gone. Some pathologists said that they were infiltrating sub-mucosal area and pancreas and lymph nodes. No treatment, just waiting. All on 2 different tumor boards said that they had never seen any presentation like mine so could offer no help. Caris reviewed my tumors and found no medication to help.Does anyone have any suggestions or ideas?
Jume 2022 .. I had a routine colonoscopy & endoscopy .. they found a 4-5 mm malignant NET tumor embedded in the lining of my stomach. The tumor was removed but the edge of my tumor tested positive. I go to my NEW Oncologist (my 2nd visit) this Tuesday to get results from a bunch of tests. I will probably need surgery where they will remove a portion of my stomach. Is anxiety part of the disease or is it me being worried?? My emotions are all over the place. I can't wait to get this behind me. I am currently at UTSouthwestern in Dallas and feel so blessed to find my Oncologist who specializes in stomach NETS. I am 66 years old and this is my first journey with this disease.
Hello @bof
I had 3 tumors in my stomach 4 years ago, the treatment was resection and after that 18 Sandostatin shots (one each 4 weeks).
I don’t know the size of the tumors detected for you,… is it possible a resection before even think about a gastrectomy?
STOMACH NET!
Having a STOMACH NET is indeed an esoteric experience and different from the lung, pancreatic and liver NETs that we often read about. Please free to inbox me to speak directly about this journey! @bof6@lupita1407@bdhawkins@carolhelen1@phyllisden@tracey2520
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Good morning @isaiah5417nt
I have/ had stomach NET……… with carcinoid symptoms.
Since 2 years have been inactive.
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2 ReactionsThanks for sharing. Did you have them removed?
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1 ReactionYes I was diagnosed with net in May of last year in my small intestines
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3 Reactions@isaiah5417nt, when I had a blockage in my small intestine in 2018, they also found one in my stomach, but said at the time that it was “too dangerous to remove”, so in 2021 I went through PRRT at Mayo in Phoenix. It’s still there, hasn’t decreased nor grown. I’m now waiting to be seen by an oncologist more specialized in treating neuroendocrine tumors than my current oncologist. So I’ll be interested to hear if he/she has any other ideas. I would consider another round of PRRT.
What are your doctors saying?
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Helpful -
Hug
1 ReactionIn January I was diagnosed with NETs in my stomach. My GI doctor said I had 90 to 100 polyps in the stomach and some are NETs. My GI doctor and oncologists wants me to have my stomach removed but so far I have not approved the surgery. My Endocrinologist wants to start me on Octreotide injections which I hope to begin in a week or so.
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Like -
Helpful -
Hug
3 ReactionsWhen I found out that I had to have surgery on my stomach because it was Distended that when they're seen inside of my stomach in the small intestines they found the tumors they removed as much as they could out of my small intestines and told me that It was metastatic and that it had spread to one of my lymph nodes In my stomach so what they're doing now they are watching it I have to go every 6 months to get a pet scan also I have to go every 6 months and get a cat scan of my stomach chest And Pelvis Also I have to take labs every 6 months they are checking my levels to make sure that everything is staying OK yes sometimes they are all but it's other things that contribute to that is well I do have stomach pain sometime Often sometimes I get nauseated cramping so all I can do is just take the medication to help me stop one through these pains and nauseousness that I have Every day is a different day so I have to deal with it day-by-day and see how it takes me so far I'm doing OK with it I eat well I eat very healthy I try to make everybody else and my family eat healthy but I get angry because I can't eat the way I used to eat and that makes me very mad I was 216 pounds Last year now I'm down to a 146 pounds So I'm just trying to deal with it day-by-day that's my story so far
-
Like -
Helpful -
Hug
2 ReactionsJume 2022 .. I had a routine colonoscopy & endoscopy .. they found a 4-5 mm malignant NET tumor embedded in the lining of my stomach. The tumor was removed but the edge of my tumor tested positive. I go to my NEW Oncologist (my 2nd visit) this Tuesday to get results from a bunch of tests. I will probably need surgery where they will remove a portion of my stomach. Is anxiety part of the disease or is it me being worried?? My emotions are all over the place. I can't wait to get this behind me. I am currently at UTSouthwestern in Dallas and feel so blessed to find my Oncologist who specializes in stomach NETS. I am 66 years old and this is my first journey with this disease.
-
Like -
Helpful -
Hug
1 ReactionI had 100 tumors in my stomach. Many were polyps, however 5 were biopsied and all were 5 cm and Grade 3 nets with KI-67 of 25 (well-differentiated). I was advised by MDAnderson that I would not survive the gastrectomy. Next endoscope showed all 100 were gone. Some pathologists said that they were infiltrating sub-mucosal area and pancreas and lymph nodes. No treatment, just waiting. All on 2 different tumor boards said that they had never seen any presentation like mine so could offer no help. Caris reviewed my tumors and found no medication to help.Does anyone have any suggestions or ideas?
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Like -
Helpful -
Hug
2 ReactionsHello @bof
I had 3 tumors in my stomach 4 years ago, the treatment was resection and after that 18 Sandostatin shots (one each 4 weeks).
I don’t know the size of the tumors detected for you,… is it possible a resection before even think about a gastrectomy?
Blessing from México 🙏🏻🫂
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4 ReactionsSTOMACH NET!
Having a STOMACH NET is indeed an esoteric experience and different from the lung, pancreatic and liver NETs that we often read about. Please free to inbox me to speak directly about this journey! @bof6 @lupita1407 @bdhawkins @carolhelen1 @phyllisden @tracey2520
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