Nipple sparing mastectomy with recurrence

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PatR
PatR Member Posts: 13
edited June 2014 in Breast Reconstruction
Nipple sparing mastectomy with recurrence
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  • PatR
    PatR Member Posts: 13
    edited June 2014

    I had a prophylactic nipple sparing mastectomy 3 years ago in June.  I was very happy with the outcome.  I had multiple removals of LCIS in my right breast and they found one small site of DCIS in my right breast after the surgery. I got a lot of support and answers here then.

    This week after the testing:cytology report had abnormal cells and the MRI showed two ducts behind the right nipple that are abnormal.  Nipple discharge was what started the round of tests.  My breast surgeon called me late yesterday and is recommending removal of my nipple and areola.  3% chance of this, so I was feeling pretty safe.  I don't think there will be any chemo or radiation because there won't be anything left?

    May sound shallow, but I'm pretty upset.  Anyone else have this or any similar problems after NSM? I'm also thinking I will have the other nipple and areola removed.  I see my plastic surgeon Wed.

    Pat

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  • Renata
    Renata Member Posts: 172
    edited June 2014

    Hi Pat,

    I just wanted to wish you luck with your decision and tell you that you don't sound shallow at all, it is bad enough to face this rollercoaster once let alone twice. I really wanted to have a nipple sparing mastectomy but it wasn't recommended for me so I didn't and I haven't even had the nerve to finish my reconstruction.

    I hope someone will share a closer to yours experience,

    Best wishes.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2014

    Sorry you are having this experience - I had NSBMX but had both nipples cored out at the time of surgery.  Pathology was done on those cores, no issues.  To my knowledge there is no structure under my nipples, and they appear pretty flat.  I have read that others on this site have nipples after NSBMX that react to cold and project - I am wondering if their docs left more under the nipple than mine did.  Have you discussed with your BS what the status of the NAC structure was after the initial surgery?  If I was in your shoes I might opt for removal of both and maybe a 3D tattoo?

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  • ucfmom
    ucfmom Member Posts: 127
    edited June 2014

    You don't sound shallow at all, I understand completely how you feel.  I had a nipple sparing BMX but the pathology report showed the margins were positive at my right nipple. So after thinking I got to keep my nipples that looked just fine and being so happy I had no healing issues, I had to have a second surgery a month later to remove that nipple.  I now have one nipple and am planning a trip to see Vinnie Myers for a 3D nipple tattoo.  I have no desire to have any further surgery unless it's needed, so I'm pretty sure I won't have nipple reconstruction.  My BS didn't ask if I wanted both nipples removed but it makes sense - it would be one less thing to worry about and I wouldn't have to worry about whether it will show if I go braless.  

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  • PatR
    PatR Member Posts: 13
    edited June 2014

    Thank you all. I just heard about Vinnie Myers but haven't gotten that far. My nipples look like I'm always cold.  I had just finished sort of adjusting to that.  I also did have some sensation left in them which is pretty rare I know.  My PS, at the time, said they scraped as closely as they could, but I don't know that they did any testing.  There are two ducts involved.  I do think I will have both done.  The whole reason for my BMX was to try to get ahead of the cancer, so doing both sides will be to continue to do that.  I see the PS Wed. and am less in shock than I was a couple of days ago.

    Thanks again for your responses. I really appreciate them.

    Pat

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  • DiveCat
    DiveCat Member Posts: 968
    edited June 2014

    I am sorry OP, how disappointing when you have good cosmetic results. Some tissue is left behind the NAC with NSM, which can vary depending on the surgeon I think, but as you know the increased risk is very small as cancer rarely begins in the nipple. You made the right decision for you based on the information you had at the time, and that is all you could have done.

    I kept my nipples as well, but I knew ahead of time if I couldn't or they failed, I would have gone for 3D tattoos. However I have also seen some awesome nipple recons, just would not have been for me.

    It is up to you about whether to remove both, especially as you do have sensation.  Depends how much that means to you. Removing both would allow better symmetry in reconstruction or tattooing, though and it sounds like it would ease some of your worry.

    As for chemo and rads, that will depend on your pathology of course.  I wish you "good" results in that respect.

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