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Anyone have neuroendocrine tumor (NETs) of the breast?
Neuroendocrine Tumors (NETs) | Last Active: Jan 6 3:30pm | Replies (48)Comment receiving replies
i am so glad I finally found this information! I was diagnosed with Primary NET Breast Cancer a little over year ago. I am told that is treated like regular Breast Cancer. I had a lumpectomy and 20 Radiation treatment. The Oncotype test showed that Chemo wouldn't be very helpful so didn't have to do that. Having Mammos every 6 months now and taking AI for 5-10 years. So far not too bad. Issues with one knee pain but had some of that prior to diagnosis. Still a lot of itching but PET Scan when diagnosed didn't show it any where else. They say I am cancer free currently. Cross fingers.
Replies to "i am so glad I finally found this information! I was diagnosed with Primary NET Breast..."
@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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Great to hear! Thinking of you & wishing for the best. I hope you are able to enjoy life right now--I'm finding that essential.