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Neuroendocrine carcinoma

Neuroendocrine Tumors (NETs) | Last Active: Sep 14 9:11am | Replies (13)

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Hi @movetowellness and welcome to Mayo Connect. There are several of us on here that have the same diagnosis me included. Did you get that diagnosis? What were you told? What are the top three questions/concerns that you have at this point?

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Replies to "Hi @movetowellness and welcome to Mayo Connect. There are several of us on here that have..."

Hi there, that is the diagnosis, stage 4 with mets to liver, spine, and some lymph nodes, and I'm still learning how to understand the medical details. I'm told it's rare and aggressive. I've done 6 rounds of chemo and immunotherapy and also radiation to the spine. After finding this site last week I attended the support meeting last week and I scheduled a 2nd opinion with Dr. Starr later this month. I'm wondering if the aggressive nature of the diagnosis is common or if that varies by person. The oncologist has made clear at every opportunity that this is "treatable, not curable" and my impression is that she anticipates rapid decline. The diagnosis came in April and I've responded fairly well to treatment, though there are mixed results for the liver. I'm told surgery is not an option. Are there medications that are typical that I could suggest to the oncologist? At what point is PRRT an option? What else should I be thinking about?