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?
The first one was removed by resection.
One month ago removed another gastric net tumor by resection too.
After that, the NET “decided to move”, now I have it in a lymph node.
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
The tumor which was embedded in the lining of my stomach was removed but the tissue around where the tumor was .. tested positive ..
You said you had a similar journey .. please share .. as I don't know what to expect. Thanks!!
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?
Yes all went away. However that is bad news not good. Once you have nets by their very nature they can never go away. If indolent they may stay the same size but move. In my case they are aggresive . But probably have gone to pancreas and lymph nodes. Diet is the same,but I did stop taking PPI'S.Carol
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?
My whole stomach was involved so a partial would not work. The surgeons all said I would not survive gastrectomy as I have too many co-morbidities. Mine were all 5 + cm. but margins were not clear. Bless you on your journey,Carol
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Hi .. I will find out Tuesday!!
Thanks!
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1 ReactionUpdated: NET is back.
The first one was removed by resection.
One month ago removed another gastric net tumor by resection too.
After that, the NET “decided to move”, now I have it in a lymph node.
It’s very annoying 😩
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NET is back after having surgery one month ago?🤔🤔🤔
The tumor which was embedded in the lining of my stomach was removed but the tissue around where the tumor was .. tested positive ..
You said you had a similar journey .. please share .. as I don't know what to expect. Thanks!!
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2 ReactionsThis is confusing. Did all your stomach NETS go away on there own? What does your diet look like? How old are you? What did you do differently?
Yes all went away. However that is bad news not good. Once you have nets by their very nature they can never go away. If indolent they may stay the same size but move. In my case they are aggresive . But probably have gone to pancreas and lymph nodes. Diet is the same,but I did stop taking PPI'S.Carol
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Hug
2 ReactionsMy whole stomach was involved so a partial would not work. The surgeons all said I would not survive gastrectomy as I have too many co-morbidities. Mine were all 5 + cm. but margins were not clear. Bless you on your journey,Carol
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Hug
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