Experience with nipple sparing mastectomy?

Hi Renbird. Sorry on the high onco score and having to have chemo, sending positive thoughts your way. I had a bilateral nipple sparing MX last year. I am very thankful that my nipples survived and I’m very happy with the outcome.

One downside I wasn’t expecting was two surgeries back to back. During the MX my surgeons didn’t like the blood supply to the nipples/skin and how things looked so they held off on placing the expanders to give everything a week to heal. I’m told this is not very common but does happen when needed. I don’t want to scare you in any way just wanted to tell you the good and bad of my experience.

So to say I woke up in a shock and was devastated is an understatement because it was not something I expected at all. But a week later I went back in and had the expanders placed. Even though I was upset about the additional surgery I’m glad they waited and my skin and nipples survived.

It’s a long healing process, the nipples take a while to heal. I had delayed healing on one side and bruising for months. But like I said I am very thankful that my nipples survived and look great.

This is quite the emotional roller coaster. I wish you the best going forward and I’m here if you have any questions.

renbird - I had hoped to have nipple sparing mastectomy, but once the surgeon got in she discovered the margins would be too close - so they had to go. She had warned me and I was prepared, but still. I'd always planned to go to Vinnie for the 3D tatoos, but somehow just got used to it.

hello renbird....sorry you are here with us and needing more surgery. I had a bilateral skin sparing, nipple sparing direct to implant surgery on 9/21. So far so good 😊. My tumor was not near my nipple so my bs said I was a good candidate. I was also a good candidate for direct to implant due to not wanting to be larger than I was prior to surgery. I’m healing well. My nipples are a little bruised but my plastic said they are healing well. Obviously I’m still in the early healing stages but I am happy with my choice.

Yes...during surgery they did pathology on the nipple and there were no concerns. If there were then I wouldn’t have had nipples. I will say it was so crazy at my first post op appointment to see my skin and nipples...they looked like my breasts. Please let me know if you have any questions.

Heather

I had nipple sparing BMX last Fall. Looks fine but what I know how I would have prefered to remove the nipples for two reasons:

1. You can't feel them anyway

2. I wouldn't need to wear bras if I didn't have the nipples but now I do because they poke through the shirt. I never liked wearing bras and now I do need to wear them.

Good luck!

HI,

I too had small, dense breasts that already had been beaten by previous biopsies. Honestly when the BS told me I possible could have a NSPM, I had never heard of such a thing and at that moment all I knew was I wanted the boobs gone! I was told that it would depend during surgery if anything showed close to or at the nipple. I was able to have the nipple sparing mastectomy and I opted for direct to implants. I wasn't looking to go any bigger. I'm still small, barely a B.

I would have been ok with or without the nipple sparing but I'm happy with it.

Your'e welcome. Yes, I was told they check the cells behind the nipple during surgery to make sure no cancer cells were seen even though there is always a possibility of different news upon final pathology. But my DCIS was small and away from my nipples thankfully. My nipples are even, and "reactive" (as in not always erect which I was told could be a possibility, only when cold etc). I don't regret it at all and am very happy.

Again, wishing you the best.

I just had a bilateral nipple sparing mastectomy on 10/5/20...I've chosen reconstruction with TE. Here a week out, and I basically look like a normal A cup...a little lumpy from the TE, but I am very pleased. My cancer was on the right side, but not near the nipple. My outlook is for a full B cup, but if I went no further today, I would be happy with my appearance. I’ve definitely learned that each patients journey and choices are different...Best Wishes to y

Kay - when was your surgery? It takes from 6 weeks to 6 months for some of the internal swelling to go down. If you're more than a month out, what did your PS say at your post-op? I don't think this is a normal result for a good PS.

Kay I also had NSP direct to implant surgery. My understanding at the time was that direct to implant an option as long as I wanted to stay pretty close to my natural breast size. My PS increased my size just a tiny bit, and I think it definitely added to the swelling that I experienced because those tissues are just traumatized. I would however push back about the nipples, and maybe consult a different PS. I am sure all manner of things can be impacted by how your body reacts (you could have cording or scar tissue happening in there pulling things around for example) but this is important emotionally for you so push until you get the result you need.

I do have cording from my arm pit to my elbow on one side and a thick large cord from my arm pit into my pec and breast on the other. I have been doing exercises that is stretching the area but have only been doing them for the last week. I had implants before, that is why they went directly to reconstruction. That is why I couldn’t understand why all of a sudden I had a symmetry issue. These implants are 100cc bigger than the implants that came out

I had prophylactic nipple sparing direct to implant in 2014. I am happy I did it as seeing my nipples still there was a bit reassuring. They are a bit asymmetrical though and while that does not bother me much clothed (I always wear a bra even if just a stretchy wire free one) it bothers me visually unclothed a bit. I am finally getting nipple tattoos to help even them out optically.

It’s very personal though. I don’t have any substantial sensation in them (except the zingers I get it seems after each surgery) and for me it was definitely just a way for me to keep something “I could”.

Kay I had all kinds of cording issues these last 2 1/2 years from my surgery. I worked with a massage therapist to release a lot of them but finally listened to my PS and had a revision surgery about two weeks ago. My PS told me she removed a lot of scar tissue ( pathology all benign yay) and I feel 1000 percent better. I really struggled with going back in, felt like I was complaining or failing - why do we do this? I hope you will pursue resolution to your issue. If your current PS doesn't listen, find a different one. My PS had to convince me to go back in and I am so glad that I did.

Kay I so understand. It isn't vanity, it is sanity. We all have things that are critical to us. So push for what you need to heal in whatever form. You aren't complaining or whining or being a bother. You are holding yourself in value in whatever form you decide that takes.

I was told two cms was the cut off, I was just under. My surgeon was able to get a good margin and good blood flow, those were also determining factors to keep my nipples. I would think that even if you did find that doctor, he would have to guess why he wrote that note. Did you ask your surgeon or one of your current doctors?