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NETs: Anyone has Liver debulking for liver metastasis?
Neuroendocrine Tumors (NETs) | Last Active: Dec 29, 2022 | Replies (46)Comment receiving replies
I had liver scans & surgery as a first step since I had been undiagnosed to the point I weighed a little over 105 lbs (and I have big bone legs).
It was performed by an interventional radiologist. 3 positive tumors were found and removed. This action ordered by a Dr. Arthur Vinik, an international know endocrinologist, saved my life.
Unfortunately the primary has never been found and could be extremely small. They've tried to find it again a couple of time without success.
When first diagnosed, Dr. Vinik put me on a pump 24/7 of Sandostatin and 2 injections every two weeks. I stayed on both for 3 1/2 years. At that point I only had the 2 injections every 2 weeks until about 2019 or 2020.
Since then I have gone down to 1 injection every 2 weeks. I still flush sometimes (it likes to let me know it's still there I guess).
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Hello @carcinoid23462,
It was good to read about your history with liver surgery and treatments. It sounds like you have had some good treatment and help with your symptoms. Sharing about your journey with NETs is a real help to everyone in this discussion group.
You said that the primary NET was never found, and they've tried to find it without success. Do you recall the tests and/or scans that were used to try and find the primary?