Prophylatic nipple-sparing mastectomy cancer risk?

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jthorne78
jthorne78 Member Posts: 6

Hello,

I am classified as borderline high risk for BC based on my family history although genetic testing has been uninformative. I am 37 years old and considering prophylatic mastectomy with reconstruction. Can anyone tell me the difference in cancer risk between a skin sparing and a nipple sparing mastectomy?


I am meeting with a surgeon in a few weeks but would like to be as well informed as possible before then.


Many thanks

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2015

    Hi Jthorne78-

    We want to welcome you to our community here at BCO. We hope you find the support and information you need as you work through this decision.

    Generally, a simple or total mastectomy reduces your risk further than a nipple-sparing mastectomy, because none of the breast tissue is left behind. Some physicians also report that leaving the nipple can complicate reconstruction, resulting in distortion and numbness of the nipple. You can read more about both procedures here: http://www.breastcancer.org/treatment/surgery/prop....

    You also may want to take some time to read through our surgery and reconstruction forums, for first-hand experience from our members. You can locate those forums here: https://community.breastcancer.org/forum/91, and here: https://community.breastcancer.org/forum/44.

    We hope you find this helpful! Please let us know if we can be of any further assistance!

    The Mods

  • besa
    besa Member Posts: 1,088
    edited April 2015

    I had trouble finding hard numbers for this question - only found general information. (See Aetna link below- prophylactic mastectomy - that summarizes what their literature search came up with. )

    http://www.aetna.com/cpb/medical/data/200_299/0227...

    I had a unilateral mastectomy (skin sparing) following a bc diagnosis with DIEP reconstruction and later a contralateral prophylactic ns mastectomy with sGAP reconstruction. I was in a somewhat similar situation -- genetic testing was uniformative negative but with family history of bc. Almost all my physicians told me that they would go with a prophylactic mastectomy if they were in my shoes. To me the ns gave better cosmetic result compared to skin sparing. (I traveled to NOLA for my mastectomy and ns sGAP reconstruction.)

    It is almost certain that there will be no (or very, very little) feeling in the nipple- generally with mastectomy and any form of reconstruction you cannot count on retaining any feeling in any part of the reconstructed breast. (I do have quite a bit of feeling- but not in the nipple - and consider it a very lucky gift.) With microvascular reconstruction and experiences ps I think it is rare to have problems with the placement of the nipple (I don't know much about implant reconstruction.) If this is a concern with a microvascular reconstruction you could post the question to Dr. Sullivan - (thread requesting questions at the top the breast reconstruction forum). An experienced microvascular ps sometimes decides do a breast "lift" on the reconstruction during stage 2 to improve the appearance and raise the placement of the nipple.

    I was told that if ns fails for some reason they can always turn the reconstruction into skin sparing. It any type of reconstruction NS success depends in large part on the skill of the bs who does the mastectomy so if you decide to go that route, in addition to deciding on a ps, you need to be sure the bs has lots of experience with ns.

  • jthorne78
    jthorne78 Member Posts: 6
    edited April 2015

    Thank you very much for your detailed reply. The link that you posted contained lots of useful information that will help me to make sure I ask my oncoplastic surgeon all the right questions.

    Best wishes.

  • besa
    besa Member Posts: 1,088
    edited April 2015

    http://www.diepflap.com/treatments/nipple-sparing-...

    Another link that might be helpful discussing ns. Allen is another well know high volume microvascular surgeon.

  • jthorne78
    jthorne78 Member Posts: 6
    edited May 2015

    Thanks. Again very useful.

    I will be having the surgery either in the UK.

    Best wishes

  • kcat2013
    kcat2013 Member Posts: 391
    edited May 2015

    jthorne, I found this slide show useful. It shows a number of the studies done to date with regards to nipple sparing. http://www.massmed.org/Continuing-Education-and-Ev...

    But be warned about halfway through there's several slides showing pictures of an actual mastectomy. I wasn't expecting that and I'm squeamish :) I just scrolled quickly past.

    I had nipple sparing on my prophy side and am quite pleased with the results. I think the skill and experience of the surgeon is important. My surgeon was the first in my area to do skin sparing/nipple sparing and has quite a bit of experience doing them.


    Kendra

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2015
    Great link, Kendra. Thank you.
  • besa
    besa Member Posts: 1,088
    edited May 2015

    http://www.medpagetoday.com/HematologyOncology/Bre...

    This study was just presented at the American Society of Breast Surgeons'(ASBS) 2015 annual meeting- ---about the safety of ns mastectomy.

  • kcat2013
    kcat2013 Member Posts: 391
    edited May 2015

    Hopeful, glad you found the link useful.

    Besa, thanks for posting that info, I hadn't seen that!

    Kendra

  • LiftingJoy
    LiftingJoy Member Posts: 1
    edited May 2015

    Hi! I had a nipple-sparing bilateral prophylactic mastectomy 8 weeks ago. I'm very happy with the results and the surgeon says they have more blood flow now than they did prior to surgery. There is no feeling of course, but it's helped me emotionally to keep my own nipples. There's a lot to be said for that. Good luck!

  • jthorne78
    jthorne78 Member Posts: 6
    edited May 2015

    Kendra and Besa,

    Thanks for the links. The figures presented are very encouraging and the photos of the possible results very good.

    LiftingJoy -thanks for sharing your experience. I'm happy that it has gone well for you. Can I ask how you felt afterwards? I am finding it hard to imagine what it feels like to have implants. Does it take some getting used to? Also was there anything that you found surprising about the procedure and/or recovery?

    I would be happy to hear experiences from anyone.

    Best wishes and thanks,

    J

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