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Welcome to the NETs Group! Come say hi.

Neuroendocrine Tumors (NETs) | Last Active: Apr 17 5:51pm | Replies (384)

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@hopeful33250

Hello @mir123 and welcome to Mayo Connect. You are correct that a NET in the breast is very rare. We do have a Connect member, @trixie1313 , who does have this diagnosis. You can find her discussion about this at
--NET of Breast
https://connect.mayoclinic.org/discussion/ned-of-breast/

As with all rare cancers, it might be wise to seek an opinion from an oncologist who is a NET specialist. Mayo Clinic has NETs specialists at each of their three facilities (Arizona, Minnesota and Florida). Here's the link if interested http://mayocl.in/1mtmR63. You can also find NET specialists at the Carcinoid Cancer Foundation website.

How long ago was this NET discovered? What type of treatments have been suggested?

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Replies to "Hello @mir123 and welcome to Mayo Connect. You are correct that a NET in the breast..."

Thank you so much! This is a beautifully curated discussion group. This was discovered 5 months ago. I did indeed consult with a neuroendocrine specialist (University of NM), and the pathology was also confirmed with Mayo. Every doctor I've consulted has specified: 6 months of chemo, lumpectomy, 30 radiation treatments, and long term aromatase-inhibitor. However, I have kidney disease, a missing lung, and numerous co-morbities. I decided against chemo and targeted therapies, and was told I had 1-2 years to live. So I settled into that, working on quality of life. Now the tumor is responding well to the AI and my surgeon is very optimistic about possible curative rather than palliative effects of forthcoming lumpectomy. Obviously a roller coaster! There is almost no info on survival rates--in the only study anyone could find the participants all died too quickly for any kind of outcome. I'm resigned to not "knowing" and proceeding in an authentic manner, but it has been baffling.