Anyone have neuroendocrine tumor (NETs) of the breast?

Neuroendocrine metastasis to breast
My primary tumor was found in my intestines two years ago. I had a hemicolectomy and 4/5 lymph nodes showed metastasis. Last week I had a lump removed from my right breast and pathology showed that it is neuroendocrine. I’m wondering if anyone else has experienced this. I’m looking for a doctor who has dealt with this before as well as information around what other people did for next steps.

Hello @sldavis66 and welcome to the NETs discussion group on Mayo Connect. I moved your post to an existing discussion on NETs in the breast. This way you can meet with others like @trixie1313 and @mir123 who also have been diagnosed with NETs in the breast so that they can join in sharing their experiences with you.

Were you seeing a NET specialist for your previous NETs? What treatments have been suggested for this breast NET?

Yes, I’ve been seeing an oncologist who sees NET patients. She’s considered the NET specialist at Siteman. The next step is a dotatate PET scan before we discuss a treatment plan.

@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.

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

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.

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-.

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-.