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Anyone have neuroendocrine tumor (NETs) of the breast?
Neuroendocrine Tumors (NETs) | Last Active: Jan 6 3:30pm | Replies (48)Comment receiving replies
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.
Replies to "So glad to hear I'm not the only one with Primary NET Cancer in the Breast.,..."
Sounds like you are responding well. I’m happy for you!
Saying hello and sending you wishes for the best! I had actually had a manual breast exam at my PCP's I guess in March, 2022, and then there was a palpable lump of several centimeters in August, 2022. Very startling! But your note confirms how mysterious this cancer can be. Hope you are managing. I'm about a year ahead of you (since my pathology report has been read 3 different ways by 4 different pathologists my diagnosis is a bit unclear) and after lumpectomy and radiation (15 treatments) and a year of AI (still ongoing) I feel pretty much like myself. I've been told Stage 2 and Stage 3--so who knows. However, I've had a great 7 months without additional treatment and been able to do some important-to-me things. I've had serious health issues for the last 50 years, so I regard good fortune as conditional--but I'll take it!
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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?