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Anyone have neuroendocrine tumor (NETs) of the breast?

Neuroendocrine Tumors (NETs) | Last Active: Jan 6 3:30pm | Replies (48)
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@trixie1313

@colleenyoung
Unfortunately, 3/7 nodes were cancerous with one eroding, or metastatic, into the lymph nodes (from the first tumor). The second tumor was poorly differentiated carcinoma consistent with breast primary consistent with neuroendocrine differentiation. TheSecondOpinion.org Stanford oncologist felt I should be treated with oat cell ca treatment, however, after a second tumor board at my facility and my oncologist, it was felt to wait and watch with PET scans every 6 months. So far, so good - two PET scans have been clear and two mammograms as well have been. There is very little that I can find with NET originating in breast - it usually stars elsewhere in the body and that is why I am curious if there are any other patients with it originating in the breast.

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Replies to "@colleenyoung Unfortunately, 3/7 nodes were cancerous with one eroding, or metastatic, into the lymph nodes (from..."
Teresa, Volunteer Mentor | @hopeful33250 | Feb 26, 2020

Hello @trixie1313,

I know that we have posted before and yes NETs in the breast are very rare. I have had three surgeries for NETs, however, they have all been in the GI tract which is more typical for NETs. Just wondering, have you had any symptoms of carcinoid syndrome (flushing of the face, diarrhea, rash, etc.)? Have you taken any treatment just as monthly injections of Octreotide?

You might find some helpful information at the Carcinoid Foundation website. Here is the link,
https://www.carcinoid.org/for-patients/general-information/a-review-of-carcinoid-cancer/

How are you feeling now?

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chanterelle | @chanterelle | Oct 24, 2023

Yes just diagnosed with breast neuroendocrine carcinoma poorly differentaited and another lump in same breast DCIS. Lymph nodes negative no metastasis elsewhere for now. My oncologist wants to do 4 rounds of very strong chemo then 12 weeks chemo 4 weeks radiation and hormones therapy. He admits it's a rare cancer and had to do a meeting with other oncologists for he wasn't sure how to treat me. And he says if I don't accept treatment there is 80% chance of recurrence. Si I,m like you looking for answers

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