Anyone have neuroendocrine tumor (NETs) of the breast?

Hi! My oncologist says my tumor is breast cancer with neuroendocrine differentiation which is not the same as a neuroendocrine tumor. (Huh?) The plan is to do partial mastectomy followed by radiation. Sending pathology for ONCOTYPE testing which will determine whether or not chemo needed. He was not able to tell me if neuroendocrine traits will drive up my ONCOTYPE score. Surgery 12/7.

World Health Organization says NET and neuroendocrine differentiation are subtypes of the same thing--NET. It is treated as ordinary breast cancer, but I gather what you have may be more responsive to treatment than plain NET, particularly to radiation. However, not that much is known--I'm not sure there are stats on either separate from regular breast cancer. Best to you going forward.

That’s what I read, too. I’m very perplexed. And concerned about potential spread elsewhere. Thanks. Pam

I found treatment to be kind of a leap of faith on my part as no one had any research to offer me. I turned down chemo for personal and co-morbidity reasons. Had surgery, 15 radiation treatment, and am on AI without any problems. I'm alive and feeling ok--ended treatment 6 months ago. My long term prognosis isn't good, but no one knows for sure and I feel fine about my choices. Actually I'm in Hawaii for a month, so really cannot complain! The emotional juggling act has been very difficult, but I rely on what I'm grateful for as well as a philosophical/spiritual approach developed over 70 years of problems, loss, adventure, love, and a huge mix of things. Just a suggestion--bring all your wisdom and self-knowledge to this impossibly confusing situation and I feel positive you can find your way.

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.

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.

So glad to hear I'm not the only one with Primary NET Cancer in the Breast., since it is so rare.
I was diagnosed the beginning of August this year. I had 4 sessions (12 treatment days) of chemo with immunotherapy. Even though I had - always have had - a mammogram every year on schedule, this tumor developed to stage 4 in just a year. Plus, a PET scan and subsequent biopsy showed NET cancer in my scapula and thigh. My latest PET scan showed the chemo working -- no sign of the cancer and the primary tumor had shrunk by 50%. Now my doc and I will decide if a lumpectomy is next. If so, and the lab detects only cancer cells in that tumor, then I'll have radiation at my thigh and scapula. I am currently also being infused with an immunotherapy drug every 3 weeks.

Welcome, @thousandoaks. I'm tagging the small, but mighty group of breast NETs members like @trixie1313 @pamelasantacruz @mir123 @lcbrazen100 @chanterelle and others to join me in welcoming you.

The treatment you're having sounds like it is working and giving you options for what is next. What chemo and immunotherapy are you having? How are you doing?

Sounds like you are responding well. I’m happy for you!

My surgery was 12/7, lumpectomy and Sentinel node biopsy, only took one, biopsy showed clear margins and clear node. Currently waiting for Oncotype results. Does Neuroendocrine differentiation drive up the score? I had a CT scan pelvis, abdomen, chest (clear) but no bone scan, should I request one? Also, I’ve been throwing up for a few months now, sporadically. Having more blood draws and seeing my GP next week. Not sure what to make of it since clear CT but this is not normal.
Thanks all,
Pam