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Anyone have a neuroendocrine tumor (NET) in the spine?
Neuroendocrine Tumors (NETs) | Last Active: 6 days ago | Replies (69)Comment receiving replies
Primary NET in duodenum with Mets to liver and spine. No pain in my back, T-11 is what lights up in PET Scan. I was initially frustrated on no treatment or monitoring of spine until I learned that NET of bone doesn’t usually cause any problems of fractures, etc. NET of liver is what will kill you so treatment is aimed at that. One oncologist didn’t think I should golf and gave me infusions monthly to strengthen bone, but other oncologist thought that was too much. I played golf weekly this summer and got a Hole in One!
Replies to "Primary NET in duodenum with Mets to liver and spine. No pain in my back, T-11..."
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@vanhauen, Hello Nancy, and welcome to the NETs support group on Mayo Connect. I appreciate you sharing your journey with NETs here on Connect. Each person's NET experience is different, so it helps when we share our story. Coincidentally, I have had three surgeries for a NET in the duodenum bulb. So far, no evidence of metastasis, but I know my story is unique.
By the way, congratulations on your hole-in-one!
As I looked at your profile, I saw that you were diagnosed a year ago. It sounds like you have learned a lot about bone NETs. It is good to know that NETs of the bone do not usually cause fractures. That is an encouraging fact.
Since many of us, myself included, with a NET diagnosis never had any symptoms, I'm wondering how your NET diagnosis came about. Were you having specific symptoms that led to scans or other tests?
If you are comfortable sharing more, what type of treatments have you had for the liver NET?