Replies to In January I was diagnosed with NETs in my stomach. My GI doctor said I had…

Discussion

Neuroendocrine Tumors (NETs) | Last Active: Jul 17, 2023 | Replies (17)

Comment receiving replies

@bdhawkins

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.

Jump to this post

Replies to "In January I was diagnosed with NETs in my stomach. My GI doctor said I had..."

carolhelen1 | @carolhelen1 | Jul 16, 2023

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?

VIEW AND REPLY