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Neuroendocrine Tumors (NETs) | Last Active: Apr 29 10:10pm | Replies (32)
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So weird to hear of someone else having Autoimmune Atrophic Gastritis and nets in the stomach. My AAG has destroyed my stomach lining and nets have developed there. I also have sibo so it makes my case a rarity as well. Currently on the wait and watch program with monthly Octreotide shots, ga68 scans and endoscopy every 3 months. Searching for a solution to my insurance problem (Kaiser) to be able to see a net specialist out of network or change plans! It’s not enough to be filled with anxiety and sick then to have to fight insurance companies to get care!
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Hi pokeymama,
It broke my heart to read what you're going through. It sounds as though Kaiser is doing all it can, but it *is* challenging to find specialists who know what they're talking about. After my Providence provider congratulated me for "having the best cancer that you can have, since it never metastasizes," then meeting someone who DID have metastatic NET, I switched my care to the UCSF NET Center.
UCSF is fine as far as procedures go, but I had a very discouraging visit with their GI NET NP last week who couldn't understand, or would not listen to my digestive symptoms, which as someone with SIBO, I'm sure you can relate to. I'm so tired of being talked down to by ignorant people, as I'm sure you are, too.
My heart goes out to you, and hope you find the care that you deserve. Please keep me posted.