Anyone have neuroendocrine tumor (NETs) of the breast?

I asked my oncologist if I do treatments (chemo, radiation, hormones therapy) what are the percentage of recurrence? He told me that I have more then 80% chance that it won't come back but like he said, we never know! So next week I will begin strong chemo! Lets hope I will be able to do all 16 weeks treatments.

I was diagnosed with a small NF PNET in March 2023 via EUS. I went to a NET specialist in April and had a Ct . The PNET did not show up but a suspicious 6mm mass in my left breast did. The NET specialist did not mention it to me but he had me get an ultrasound for nodules in my thyroid which were benign. I was scheduled for a Gallium 68 PET DOTATE/MRI in June. I had inadvertently canceled the test but I was assured it was reinstated. Then I got a notice on my email that it was canceled. At they point I decided to start using the patient portal.the reason I never used it was other doctors in the past never used them and told me they never paid any attention to them so I thought they were pointless. When I gained access to my patient portal in June I reviewed my records and I saw the CT report from April. I tried to email the NET specialist about it and to try to move up the Gallium PET Dotatate test but I got no response. The GA DOTATE Test was moved to July 13. Since I couldn’t get a response from the NET specialist I decided to send a screenshot of the CT to my OB/ GYN to try to have another mammogram and targeted ultrasound done. I had previously gone to the OB/GYN in January 2023 because of pain and a rash on my left breast (the same area on the CT) . The mammogram in Jan was negative. However, she approved a new one and now they saw the mass which had grown. They told me the mammograms I had done in 2020 and 2019 during Covid had been destroyed in a server fire. Finally, in July the NET specialist called me responding from my email in June about the CT. Since the Gallium Dotatate PRT/MRI was the next week he told me to wait and get those results. The PNET glowed but there were no other metastases. My breast nodule did not glow but the PET sbowed very agressive activity. I was finally referred to the breast specialist at the NCI hospital breast department where my PNET Doctor worked. I had just received the mammogram from my OB/GYN and my breast nodule had doubled since April and the report was it was spiculated and BI-RADs 5. The NCI Brest clinic would not accept the findings from the OB/GYN faculty and wanted to redo the mammogram and targeted ultrasound and do a biopsy. The biopsy proved to be cancer and the results said it was invasive ductile carcinoma with a focal neuroendocrine component. I sent this information to the NET specialist to review. He got back to me and he said he consulted with colleagues and it should be handled by the breast cancer department. The breast cancer team determined it was high risk by a BLUEPRINT/MAMMAPRINT report based on the core biopsy. I had a genetic profile done for breast cancer and PNET and both were negative.
The core biopsy path report was ER 100% PgR100% and HER/2 negative after FISH. At that point I was grade 1 T1 N0. The oncologist prescribed neoadjuvant anastrozole. Out of curiosity I had them run a Ki-67 report and it was 80%. By contrast, the Ki-67 of my PNET was 0%.
I elected to have a lumpectomy and after a MRI of my breast and axilla showed no suspicious lymph nodes. However, they did a SNDL with the lumpectomy. The tumor was 2.2cm and they removed 3 lymph nodes and one sentinel node had a 4 mm macrometastisis with nodal extension and lymphovascular invasion. The other 2 nodes were normal. The path report showed the metastasis in my sentinel lymph node was strongly HER positive. I had 2 tumors, one was DCIS and the other was IDS. I was now triple positive and my chemo regimen was modified. I just finished my 2nd chemo yesterday. I had to be in the hospital for 3 days with febrile neutropenia after the first infusion but now I am getting Neulasata. My tumor path report did not mention the NET component but it did specify it was in a papillary background and cribiform with extensive comedonecrodis and grade 3.
They are treating this as a high risk tumor. They said it had an GATA 3 oirigen. After the lumpectomy the path report changed and I was triple positive but my ER was 80% PgR 30% and the Ki-67 30%.
They staged my breast cancer by running another CT which showed no change to the PNET (still 5mm) and not discernible ands they found no metastasis from the breast cancer. A bone scan showed no metastasis. So my breast tumor is now T2B N1a M0.
I am on anastrozole, 6 TCHP infusions then radiation for probably 6 weeks and continue Herceptin and Perjeta for a year. Maybe neratib after that.

Hi, just diagnose with invasive breast carcinoma with neuroendocrine differentiation. So little info…Did body CT scan and full breast MRI and reportedly all clear. Partial lumpectomy followed by radiation is the plan. Any feedback appreciated. Thanks, I’m new at this. Pam.

Hello @pamelasantacruz and welcome to the NETs support group on Mayo Connect. I'm glad that you found this forum where you can meet others who are experiencing the same thing. I would like to invite others in this group to share their experiences with you such as, @trixie1313 @mir123 and @chanterelle.

Is the lumpectomy scheduled yet?

@pamelasantacruz
I'm just over 5 years now since diagnosis, chemo, radiation, and two surgeries (lumpectomy for first tumor and second for further excision of the first and the second tumor found on MRI which turned out to be NET). I've recouped from all and, so far, so good. For a while there I was having to have PET scans every 3 months as some oddities showed up in my lungs but we're now at yearly PET scans. I was advised to take aromatase inhibitors which I did for 5 year and I was encouraged to go an additional 2 years, but quite frankly I just couldn't do the extra 2 years and my body and mind are doing much better without it! My motto is just enjoy one day at a time to the fullest. All the best to you.

Thank you. I’m so happy I found this group, there seems to be a dearth of info on this cancer.
I’m scheduled for lumpectomy 12/7. Radiation consult 12/29. Meeting oncologist for first time Wednesday. This has been a whirlwind, dx 10/31.

I’m loathe to take hormone blockers, I will learn more Wednesday. If ai must I will but side effects sound terrible. Thank you Teixie, it sounds like you are doing well and that’s so good to hear. x

@pamelasantacruz
Some people don't have problems with them -- you won't know until you try and there are 3 different ones. The first one I tried didn't work for me, so they had me start the second one which wasn't as bad but still a problem, and finally the last one I could deal with. I know a few women that have few problems -- I've just never been good at drugs.

Thank you. Time will tell—

Hi Pam, what did you learn at your appointment? Do you have a treatment plan?