← Return to Anyone have neuroendocrine tumor (NETs) of the breast?

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@trixie1313

@lcbrazen100
I just stopped my AI this last July after 5 years...doctor wanted me to go for 7, but I just had had enough. After 3 months, I feel so much better - my hair has stopped falling out, I can think again, and the aches and pains have diminished. Because of the NET, it was advised that I do chemo that is used for oat cell ca of the lung. My case was presented at 3 different Tumor Boards, one of which suggested not doing that due to the horrific side effects. They do continue with every 6 month PET scans to keep track and I'm fine with that. As we all know, there is not a lot of information on NET of the breast. I'm fine with my decision and will just see how it goes. In the meantime, I'm enjoying each day as it comes.

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Replies to "@lcbrazen100 I just stopped my AI this last July after 5 years...doctor wanted me to go..."

So happy to hear this! Thank you.

Hi, I have neuroendocrine breast cancer, lumpectomy, clean margin, no lymph activity. Nobody I’ve seen has treated this cancer. They want to do an extra week of radiation. I’m speaking with someone at UCSF Tuesday. Hopefully she’s seen this. What should I ask and should I be adding chemo because of NET? So little information, I hate this. Thank you. Pam