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@hopeforacure

Hi - I was just diagnosed with invasive ductal carcinoma with neuroendocrine features from the nipple punch biopsy. Does this mean my breast cancer has spread or the breast is a secondary site? I received the call that I have cancer on Wed. May 22, 2024. I’m being treated at Duke Hospital in NC. I’m meeting with oncologist on Tuesday and having an MRI on the following Friday. I just need to know what this might mean. I want to be prepared. Because not knowing is rattling my nerves so bad.

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Replies to "Hi - I was just diagnosed with invasive ductal carcinoma with neuroendocrine features from the nipple..."

Hello @hopeforacure (I love the name you have chosen!) and welcome to Mayo Connect. On Connect, we have other members with a similar diagnosis. I would like you to meet @mir123 as well as @trixie123

You can read posts by them and other members who have NETs in the breast in the follow discussion group,
--NED of Breast
https://connect.mayoclinic.org/discussion/ned-of-breast/

As you read these posts, I would encourage you to post replies and ask questions about their experiences. There is so much we can learn from others.

My NETs surgeries have been of the upper digestive tract, but I have found a great deal of support here on Mayo Connect. As you approach the upcoming appointments here is a discussion and video about making the most of meeting with a new doctor.

Plan your conversation – Questions, concerns, symptoms, health history. For tips and tools see Tools for the Healthcare Visit - https://www.patientrevolution.org/tools

Do you wonder what questions the doctors would like to hear from you?
--- Video: Mayo Clinic experts share what they wish patients would ask:
https://www.mayoclinic.org/connected-care/mayo-clinic-experts-share-what-they-wish-patients-would-ask/vid-20487730

Was your breast NET originally found by a mammogram?

Greetings to you. It seems most likely that the tumor originated in the breast, but worth double checking that by asking oncologist. The neuroendocrine features is comparatively rare, and a bit difficult to classify. I have a NET in my breast (removed surgically) but I have, if you believe it, four conflicting pathology reports! My oncologist and I both believe Mayo's is the accurate one. I've also been told it was just "features" and eventually no NET at all. To the best of my knowledge, what you have is treated like any breast cancer--with the usual aspects such as stage, grade, hormone status, etc. taken into consideration as regards treatment. NE features has a better prognosis than a full blown NET. I don't think you need a Neuroendocrine specialist, just a good oncology team. Here I'm just writing from my own experience as a patient--have no medical training at all but needed to understand my situation. So my guess is that although this is unusual it is not dire in and of itself--and of course you need a lot more information. Do stay in touch if you can. I was so shocked at first, and Connect continues to help me.