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Anyone have neuroendocrine tumor (NETs) of the breast?
I am curious if anyone else has been diagnosed with neuroendocrine of breast. My first tumor was infiltrating ductal cancer. I was worried about cancer being in the other breast when I requested MRI at which time the second tumor was found in the same breast on the opposite side and diagnosed as NET. Am being followed with PET scans every 6 months now and, so far, so good. But it has also been explained to me there are not many patients with this showing up in the breast so very few studies on how to proceed.
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Neuroendocrine metastasis to breast
My primary tumor was found in my intestines two years ago. I had a hemicolectomy and 4/5 lymph nodes showed metastasis. Last week I had a lump removed from my right breast and pathology showed that it is neuroendocrine. I’m wondering if anyone else has experienced this. I’m looking for a doctor who has dealt with this before as well as information around what other people did for next steps.
Hello @sldavis66 and welcome to the NETs discussion group on Mayo Connect. I moved your post to an existing discussion on NETs in the breast. This way you can meet with others like @trixie1313 and @mir123 who also have been diagnosed with NETs in the breast so that they can join in sharing their experiences with you.
Were you seeing a NET specialist for your previous NETs? What treatments have been suggested for this breast NET?
Yes, I’ve been seeing an oncologist who sees NET patients. She’s considered the NET specialist at Siteman. The next step is a dotatate PET scan before we discuss a treatment plan.
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2 ReactionsThat sounds good, @sldavis66. The Dotatate PET scan is one of the best ways to find NETs. I'm glad that you are seeing a NET specialist. that is important.
Has the scan been scheduled yet?