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Replies to "I’ll speak to 3 & 4. My wife with NETs (ileum), 50 METS to liver has..."
Neuroendocrine Tumors (NETs) | Last Active: Nov 11, 2023 | Replies (210)
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I’ll speak to 3 & 4. My wife with NETs (ileum), 50 METS to liver has been seen @ Mayo 3 1/2 years. She’s has 2 surgeries, regular labs, scans and office visits. We are a 4 hour drive.
All will agree results are better when seen at a high volume speciality center like Mayo. This is based on evidence.
If there are no recognized NET specialists ‘in- network’, then you should file a ‘grievance’ with your insurer. I’m happy to help you with the language and letter. I’ve been through this several times.
Replies to "I’ll speak to 3 & 4. My wife with NETs (ileum), 50 METS to liver has..."
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I, too, have NET (Ileum), along with several METS. I have been going to Mayo since April, 2002, for labs, scans, MRIs, surgery, office visits. I just had bland embolization of one larger tumor on my liver. Sounds like we need to have a personal conversation.