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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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@chanterelle

Thanks for all informations. I'm seeing my oncologist this week and like you said my first question will be the % of reccurence if i accept chemo treatment. Right now i need to take 4 round of strong chemo, then 12 weeks of less strong chemo. Three weeks radiation and hormones therapy. Did you have metastasis elsewhere? I had scans for chest brain and no metastasis. My tumor was 3.1cm stage 1 but high grade. Er+ pr+ her2-.

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Replies to "Thanks for all informations. I'm seeing my oncologist this week and like you said my first..."
Miriam, Volunteer Mentor | @mir123 | Oct 24, 2023

I hope the appointment goes well. The original tumor was about 2.5 centimeters--spread to two lymph nodes but nothing remote. I've been told at different times Stage 2 and Stage 3. It is grade 3, so fast moving. I asked a NET specialist about NET specific drugs but they appear to not be used in breast. My tumor is non-secretory so I don't have certain NET symptoms, which is easier on me at least. I consulted locally, with Mayo, at NYU, and NET specialist at University of NM and was told it can only be treated as ordinary breast cancer. NET specialist at University of Utah said the same. The World Health Organization says there are no specific protocols, and emphasizes the need for research! I agree.

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Colleen Young, Connect Director | @colleenyoung | Oct 31, 2023

@chanterelle, how did your appointment go?

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