newly diagnosed - confused by competing pathology reports

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lifeisgood33
lifeisgood33 Member Posts: 26
edited July 2017 in Just Diagnosed

Learned on May 19, 2017, after mammogram, ultrasound and core needle biopsy that I had 2 small neuroendocrine tumors in my rt. breast, close to the chest wall. In consultation with oncologists, surgeons -none had seen it before. I spoke with other medical providers ( as well as looking online) and i learned how rare this is. As a result, no one knew how to treat it.

I requested and was given a consult to Mayo which included a PET scan. PET scan did not reveal any other 'hot'areas. After being seen there, the oncologist was of the opinion that this is just breast cancer but way out on the far end of the spectrum because of the neuroendocrine features. This was, in part, due to family history. both my mom and maternal gmother had bc.

I'm now into my 6th week since my diagnosis. I saw my surgeon today and he is ready to do a lumpectomy with sentinel node.

I'm trying to get one more review of the pathology slides to confirm one of the pending diagnoses.

Any advice or thoughts? Anyone know of someone who has NET in the breast?

I've looked at the forum for rare/different/unusual bc but didn't find much.

Thanks for the forum.

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  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2017

    I've never heard of it. My only advice would be to have the surgery at a recognized cancer center.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2017

    I just used the search box at the left of the screen and received these results. These are older threads regarding neuroendocrine tumors, but have some recent posts:

    https://community.breastcancer.org/forum/137/topics/820255?page=1#post_4968521

    https://community.breastcancer.org/forum/132/topics/827259?page=1#post_4834918

    You can use the search function as well and Private Message any members with knowledge if they are still active on BCO.

    There is a currently posting member, HapB with a previous neuroendocrine cancer (I don't know where it is physically located though) that may have some wisdom also. Here is a post from her in the Triple Positive thread. I would PM her also and ask some questions:

    https://community.breastcancer.org/forum/80/topics/764183?page=1031#post_4980421


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  • Lula73
    Lula73 Member Posts: 1,824
    edited June 2017

    if you haven't already consulted with an endocrinologist I would do so as soon as you can. They are the hormone specialists and are equipped to deal with tumors of neuro-endocrine origin. Neuroendocrine tumors aren't all that common in general and a breast surgeon/Breast specialist likely would not have seen this before. And just to be clear, neuroendicrine tumors can appear anywhere in the body-yours just happens to be in your breast. Going with the thought process that a neuroendocrine tumor can be treated like breast cancer is probably not a good idea. You need to find a doc that has seen/treated neuroendocrine tumors before.

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  • lifeisgood33
    lifeisgood33 Member Posts: 26
    edited July 2017

    thank you Kira, Special K and Lula for your responses. I've had another review of the pathology and the latest opinion concurs with Mayo - that this is not Neuroendocrine, but bc with some neuroendocrine features. I feel confident going forward and am scheduled for a lumpectomy in 2 weeks.

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