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.