Anyone have a stomach NET?

Good morning @isaiah5417nt

I have/ had stomach NET……… with carcinoid symptoms.
Since 2 years have been inactive.

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Thanks for sharing. Did you have them removed?

Yes I was diagnosed with net in May of last year in my small intestines

@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.

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