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Anyone have neuroendocrine tumor (NETs) of the breast?

Neuroendocrine Tumors (NETs) | Last Active: Jan 6 3:30pm | Replies (48)
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@mir123

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.

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Replies to "I have been diagnosed with this rare tumor. Every doctor I have consulted, including specialists have..."
Colleen Young, Connect Director | @colleenyoung | Jan 19, 2023

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.

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