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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
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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I can only respond with my own experience. But first off am sending both sympathy and empathy. I was diagnoses about 14 months ago with a NET in breast. I had a lumpectomy, 3 weeks radiation, AI, and declined chemo (I have kidney disease and nephrologist wouldn't sign off on 2 of 4 infusion drugs. Yes, it was suggested I could just try and then go on dialysis but that wasn't for me). I have been told without chemo I could live 1-2 years. Now at start of 2nd year and paradoxically feel fine. I'm almost 70.
Of course choices are up to you--although a trusted friend or family member can help with decisions. Here is what I learned:
Most important--ask what percentage of patients who START the chemo regime can complete it and not drop out due to life threatening side effects. Ask what percentage of patients on this regime are hospitalized (I had a friend who was hospitalized but bounced back--the question is more so you understand risk).
I myself could find no info on whether this kind of NET responds to chemo--I don't think that info exists. You might also ask, what is chance of NET recurrence WITH chemo. If it isn't that different, then you have more ways to make a decision.
Trust yourself of course. Stay in touch! I was so shocked at first. Now I really do accept it and I'm at peace with my treatment choices and prognosis. But I have a ton of comorbities and am actually pleased and kind of surprised to have lived as long as I have.