Bilateral Mastectomy with nipple & nerve sparing

Posted by bolfk @bolfk, Sep 15 5:04pm

Hi, my name is Kelly and recently diagnosed with stage 0 - DCIS. I made the decision to have bilateral mastectomy with nipple and nerve preservation. I am having a really hard time finding examples/pictures of what this procedure looks like pre/post. My plastic surgeon stated that Mayo doesn’t usually share these photos to protect privacy. While this is certainly understandable, it makes it hard to “prepare” the mind ahead of time.
Has anyone found valid/reliable pictures out there?

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So sorry to hear of your experience of recurrent cancer. When I mentioned “why not” I was referencing the preservation and attachment of the nerves to the nipples. Yes, albeit very rare, that small amount of tissue remaining in the nipple can still be at risk of cancer but the literature demonstrates an extremely low risk. Having breasts that kind of look like my originals was important enough for me that I accepted the risk.
Thanks for bringing that point up so anyone reading this is aware and I wish you soother sailing ahead!

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I was also told that you can only have nipple sparing if the tumor is more than I think an inch from the nipple, which seemed like a little bit of a gamble to me when you know its invasive since pre-surgery the size of the tumor is an estimate. Not sure what they do if you nipple sparing and they find out afterwards that the tumor was actually too close to the nipple - maybe they say radiation then?

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Hi Kelly - I also had DCIS with nipple sparing bilateral mastectomy with direct reconstruction + second reconstruction to change implants + two fat grafting surgeries. I too found it hard to find people like ‘me’ - I’m 5’6 slim build and 44. A lot of the images scarred me. I did find my surgeons gallery helpful which you can see here - https://www.drbettykim.com/before-and-after-gallery/#0-breast-reconstruction. The reality is unless you have 3D mock up it’s impossible to know what they will look like after - they will not be like your natural breasts that’s for sure but they can do amazing things these days - I’m super interested to here if the nerves work post surgery - I’ve never met anyone yet who has had this done.
Ask about the incisions and where the scars will be - likely you will like me and have them hidden under the breast which is brilliant as you won’t even see them after a few months. Ask about implant sizes and shapes and projection (gives the natural curve). Ask about fat grafting - all of these help give a more natural look. It takes time and possibly several surgeries to get to the best outcome or you could be lucky and be done first time and just need fat grafting done later. Best of luck - I’m 12 months down the line and just had second fat grafting surgery and pretty happy with my outcome. They are more fuller and shaply in clothes then my old breasts but I have no feeling in either one. Lots to weigh up. It does help to speak to other women in similar situation but each journey is unique. Good luck.

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@gillbell84

Hi Kelly - I also had DCIS with nipple sparing bilateral mastectomy with direct reconstruction + second reconstruction to change implants + two fat grafting surgeries. I too found it hard to find people like ‘me’ - I’m 5’6 slim build and 44. A lot of the images scarred me. I did find my surgeons gallery helpful which you can see here - https://www.drbettykim.com/before-and-after-gallery/#0-breast-reconstruction. The reality is unless you have 3D mock up it’s impossible to know what they will look like after - they will not be like your natural breasts that’s for sure but they can do amazing things these days - I’m super interested to here if the nerves work post surgery - I’ve never met anyone yet who has had this done.
Ask about the incisions and where the scars will be - likely you will like me and have them hidden under the breast which is brilliant as you won’t even see them after a few months. Ask about implant sizes and shapes and projection (gives the natural curve). Ask about fat grafting - all of these help give a more natural look. It takes time and possibly several surgeries to get to the best outcome or you could be lucky and be done first time and just need fat grafting done later. Best of luck - I’m 12 months down the line and just had second fat grafting surgery and pretty happy with my outcome. They are more fuller and shaply in clothes then my old breasts but I have no feeling in either one. Lots to weigh up. It does help to speak to other women in similar situation but each journey is unique. Good luck.

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Thank you for sharing your story & picture examples. My scars appear to be under the breasts. I’m pretty sure I can feel the right nipple (left seems numb) but it’s pretty early in my recovery and more work was done on the right as that’s where the cancer was.

Where did you opt to have fat grafting done? My surgeon said they like to take from the flank area. I did a fair amount of research on the flap surgeries and those sound a bit barbaric to me. My surgeon looked at my belly & said I probably wouldn’t be a good candidate as I don’t have a lot of fat there but I have sagging skin secondary to pregnancies x 2.
I would prefer to use belly fat but then that decision may make me ineligible for flap surgery in the future if I changed my mind on implants I believe?

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@bolfk

Thank you for sharing your story & picture examples. My scars appear to be under the breasts. I’m pretty sure I can feel the right nipple (left seems numb) but it’s pretty early in my recovery and more work was done on the right as that’s where the cancer was.

Where did you opt to have fat grafting done? My surgeon said they like to take from the flank area. I did a fair amount of research on the flap surgeries and those sound a bit barbaric to me. My surgeon looked at my belly & said I probably wouldn’t be a good candidate as I don’t have a lot of fat there but I have sagging skin secondary to pregnancies x 2.
I would prefer to use belly fat but then that decision may make me ineligible for flap surgery in the future if I changed my mind on implants I believe?

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Hi I had first one take from belly as my surgeon said that’s the donor area she preferred. Second time she did flanks and inner and outer thighs. It takes about 3 months to see the real results due to swelling and fat absorption. It seems the left side (cancer side) is harder to work with so I had to have the second grafting - I’m 10 days post surgery and happy so far but expect left area will always be not quiet right as they had to do more work and probably the fat just doesn’t stick as well as a result. Once all healed it’s impossible to see pretty much any scars from this procedure or where they injected fit - you heal really well - the junky issue I had last time was a little pocket formed under my belly button but my surgeon zapped that on the second surgery so it’s gone now. Also first time I wore a warp around compression that the hospital gave me but it kept moving up and I think made the pocket. This time I wore Spanx which are club more comfortable and even to smooth out contour. Diep survey wasn’t an option for me so I didn’t do any research into it - it’s another massive surgery and longer recovery from what I’ve heard but can give great results if you have tissue for it potentially.

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@lilacs777

I was also told that you can only have nipple sparing if the tumor is more than I think an inch from the nipple, which seemed like a little bit of a gamble to me when you know its invasive since pre-surgery the size of the tumor is an estimate. Not sure what they do if you nipple sparing and they find out afterwards that the tumor was actually too close to the nipple - maybe they say radiation then?

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They biopsy the nipple during surgery and check pathology there and then and if issue they remove them - that’s what I was told by my surgeon and I had nipple sparing bilateral.

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For those that have had recon - have you found any reliable info on the safety of fat grafting in terms of BC recurrence risk? I've read some docs about how it was not approved by the society of plastic surgeons for quite a while because of the concern that fat contains stem cells and those could potentially be recruited by any stray cancer cells in the breast skin.

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