Anyone have neuroendocrine tumor (NETs) of the breast?

@trixie1313, can you clarify the acronym NED in this case. I'm familiar with NED meaning "no evidence of disease" and NET to mean "neuroendocrine tumor." I found reference in the literature to neuroendocrine carcinoma of the breast (NECB) and invasive breast carcinoma with neuroendocrine differentiation (IBC-NED).

Is your use of NED neuroendocrine differentiation?

@colleenyoung
Sorry - misspelled. NET is the correct acronym. I was told that the tumor had neuroendocrine differentiation which was the same as neuroendocrine cancer. This was after three tumor boards and a second opinion by TheSecondOpinion.org in San Francisco comprised of experts from UCSF, Kaiser, Presbyterian Medical Center, and Stanford.

@trixie1313 thanks for clarifying. I corrected the typo in the title. Now to find other members who have breast NETs to connect you with. I'll do my best.
So you have 2 DIFFERENT kinds of breast cancer in the same breast! What are the chances of that? Do you have any spread (mets) beyond the the breast?

@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.

Hello @trixie1313,

I know that we have posted before and yes NETs in the breast are very rare. I have had three surgeries for NETs, however, they have all been in the GI tract which is more typical for NETs. Just wondering, have you had any symptoms of carcinoid syndrome (flushing of the face, diarrhea, rash, etc.)? Have you taken any treatment just as monthly injections of Octreotide?

You might find some helpful information at the Carcinoid Foundation website. Here is the link,
https://www.carcinoid.org/for-patients/general-information/a-review-of-carcinoid-cancer/
How are you feeling now?

@hopeful33250
Wow - what a great article and information. No, I didn't know about octreotride. I do have itching and rash. So far, the oncologists feel wait and watch along with aromatase inhibitors as well as every 6-month PET scans. I will ask now about octreoscan vs. PET scan. Thank you so much for this information...it's a quandary as starting in the breast is quite rare. I feel confident in my care so far and physically am feeling pretty good.

trixie1313
@trixie1313 I'm glad the information was helpful to you. I suppose by PET scan you are referring to the Gallium 68 scan?

Here is some information about this specialized PET scan for NETs, https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/

I have been diagnosed with this rare tumor. Every doctor I have consulted, including specialists have said: it is treated like ordinary breast cancer. However, no one can offer any actual statistics or outcomes. Kidney disease and personal preference keep me from chemo. An AI seems to be working well on triple positive tumor. I am about to have a lumpectomy. Is radiation useful? I have been given a poor prognosis of life expectancy of 12-18 months. The cancer has not spread beyond the lymph nodes. I'm finding decision making very confusing. Advice? I'm 69 years old, disabled, and have numerous co-morbities. I do, however, health aside, have a a great life and a lot of support.

Welcome @mir123. NET of the breast is rare, but you're not alone. I've moved your message to this existing discussion:
- Anyone have neuroendocrine tumor (NETs) of the breast? https://connect.mayoclinic.org/discussion/ned-of-breast/

I did this so you can easily connect with @trixie1313 as @hopeful33250 suggested. Trixie can share how her cancers were treated, including NET of the breast.

I found 2 papers suggesting that radiation can be useful. Like other breast cancers, treatment can include surgery, chemotherapy, endocrine therapy and/or radiation.
- Primary Neuroendocrine Tumor of the Breast: Current Understanding and Future Perspectives (2022) https://www.frontiersin.org/articles/10.3389/fonc.2022.848485/
- Primary Neuroendocrine Neoplasms of the Breast: Case Series and Literature Review (2020) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7140078/

Decision making can be confusing. While it can be helpful and reassuring to hear what treatments other patients have had, it is best discussed with your oncologist in the context of your health. Your co-morbidities, personal preferences and side effects "acceptance" will differ from someone else.

@gingerw doesn't have breast cancer, but like you, she had hard choices to make regarding treatment for cancer (myeloma) and kidney disease.

I'm encouraged to hear that the aromatase inhibitor is working well.

this is very helpful! Thank you so much.