Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

Nipple Sparing Mastectomy

Options

Hello everyone, I am new to this site and was diagnosed on May 1, 2023. I am 48 and have finally decided on a BMX. I am negative for all genes but have a strong family history of breast cancer on both sides of my biological family. I am planning for a skin sparing mx later this summer but have not yet decided about saving my nipples. I am looking for others that have had a nipple sparing mastectomy to share their results and experiences. My PS said that the biggest thing she's heard from her patients is that the nipples are constantly erect. Is there anyone that would be willing to share how the recovery and results were for them?

Comments

  • pjc5399
    pjc5399 Member Posts: 32
    Options

    I had a nipple sparing, over the muscle mastectomy in Jan (put in expanders) and had the exchange surgery on Tues. I wrote a lot about it in a thread in the surgery forum (look under Jan surgeries). My nipple itself is a little erect (and less so with the implants) but the areola isn’t if that makes sense. I don’t find it bothersome. I’m bruised and swollen at the moment (took fat from many places) but really quite happy with how things look right now. And this second surgery was a breeze. Happy to answer any questions you have.

  • specialk
    specialk Member Posts: 9,227
    Options

    I had a skin/nipple saving BMX in 2010 ad did not find a problem with the nipples being erect, but I had natural breasts that were a generous B cup with relatively small nipples and areola complex. I have zero idea if size pre-surgically of the NAC has any bearing. My surgery involved placement of expanders under the muscle so it is also possible that the gradual stretching with expansion did not allow the nipple to be as erect as they would have been with a pre-pectoral expander or direct to implant surgery. I found recovery to folow a typical timeline, but aside from the first week requiring some stronger pain meds, the discomfort was manageable, and I felt pretty good/normal by the 5 week mark. In addition to the BMX I had my sentinel node biopsy done through the mastectomy incision on the cancer side prior to the insertion of the expander, so some possible yanking to get up that high, and also had a chemotherapy port installed through the non-cancer side (knew I needed chemo due to Her2+) prior to the expander, so also some yanking around on that side. I am sure this contributed to initial discomfort. Do you have any specific questions I can answer?

  • lillyishere
    lillyishere Member Posts: 773
    Options

    I had Nipple Sparing Double Mastectomy over 3 years ago. Silicone implants were inserted under muscles. No fat was found as filler. The only thing I hate the most are nipples that stay erect all the time. I mean, I don't remember ever in my life even when I breastfed having nipples stay like this. I have to wear bra with padding all the time. I wish I could have my nipples removed or reduced. I am thin, size B, and asked the implants to be the same size as my original breast. Ask your PS if she can do anything to make nipples look more normal.

  • mamato6ellieto3
    mamato6ellieto3 Member Posts: 3
    Options

    lillyishere,

    That's what I'm concerned about. Meeting with my PS this afternoon to get some clarifications. I breastfed 5 of my kids and never was then and I think the only time I'm ever erect now is when I'm cold! I'm a 32 D/DD and would like to stay the same size. Just struggling with the nipple decision.

  • veggal
    veggal Member Posts: 261
    Options

    I had NSM in 2016. I had previously breastfed for 3+ years.

    My nips did seem to be erect most of the time for maybe 6-12 months. That eventually settled down and have been fine since.

    My opinion is to strongly consider keeping them. They make bra fitting easier and if you find they are intolerable (rather than just an annoyance), you could always have them removed later. Once they’re gone, they’re gone. I have read many more stories of women who did not realize the impact having no nipples at all would have on them vs distress over erect nipples.

  • mamato6ellieto3
    mamato6ellieto3 Member Posts: 3
    Options

    Thanks for all the input. I've decided to save them for now. My sentinel node biopsy and nipple sparing prep is Aug. 10 and bilateral mastectomy is the 24th. It's all starting to get real now.