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First Appt with Surgeon Oncologist for SB NET
Neuroendocrine Tumors (NETs) | Last Active: Aug 19 1:02pm | Replies (15)Comment receiving replies
@taly
Hello! Keeping good thoughts for your upcoming surgery! I was diagnosed in 2020 with Stage 4, Grade 3 SBNETs - same location as yours. IMO, you are so very fortunate to have caught this early on and fingers crossed it will be confirmed Stage 1.
When I met with the NET surgeon/team at UIHC, he almost didn't perform surgery - I did point out from what I read and understood, I was only 2 points 'into' Stage 3 (lol) and fortunately he and the tumor board agreed surgery was an option for me. Ileum, gallbladder removed along with some liver mets and as many of the tumors in the mesentary he could safely reach. The 2 small tumors found in the intestine which Drs believed were the primary site(s) were also removed. It took about 1 year for my digestive issues to find a new normal, and as long as I watch my diet, take pre-probiotics, OTC pancreatin, and get my monthly Lanreotide shot, life w/NETs is pretty darn good!
(@dadcue): As far as "predictions" go , well.... we all hope things will go as planned, lol. Also, I hope you choose to accept surgery. After recovering from the extensive surgery, my gastro issues pretty much stopped! I am sure in my case finding the 2 small bowel tumors (primaries) is why I'm still on the right side of the grass 6 years later and holding at "stable" (oh! I also chose to have PRRT tx several years ago due to mild progression). Prognosis in 2020 was "possibly 2 years'"....
Replies to "@taly Hello! Keeping good thoughts for your upcoming surgery! I was diagnosed in 2020 with Stage..."
@anon0995 Thank you! I'm glad you were able to do your surgery. It sounds like they're executing a good treatment plan for you and life is good. That is music to my ears. May it be so for all of us!
@dadcue I am also 72 YO. I have one nighttime breathing condition that makes doing surgery under a general a bit more complicated. They're going to see what can be done in the sleep dept. beforehand. It makes me a little nervous but everyone definitely thinks surgery is my best option and I don't disagree. Best of luck to you!
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@anon0995
I still don’t know about surgery at the age of 72. I feel like I will be well cared for. Dr Dillon is my NET specialist at UIHC. He has reviewed all my annual CT scans since 2020 which retrospectively showed evidence of NET in 2020. Those annual CT scans were monitoring my kidney stones. It wasn’t until December 2025 that the radiologist reported a possible SBNet. This was later confirmed with labs and a Dotatate scan. The metastasis is localized but one distant site lit up too.