nipple sparing mastectomy

I don't know that nipple sparing has a very low chance of success, does it?  As far as I know, it's only contraindicated if you have large breasts, b/c there needs to be a blood supply to the nipple to keep it alive and after you remove the breast tissue in mastectomy the only blood supply left is the skin itself - which may not be enough if you have large breasts and the nipple is far away (a long distance for the blood to travel through the skin).

It's also contraindicated if your cancer is close to the nipple - some say no closer than 2cm, some say no closer than 4, some surgeons don't want to do it at all unless you have no active cancer and are only doing a prophylactic mastectomy.  With a 5cm area of involvement in a small breast, I'd have a serious conversation about recurrence risk if you preserve the nipple - which probably depends on exactly where the DCIS is located.

Implant v. flap....flaps are a much bigger surgery but are forever.  Implants are a much easier surgery but will probably need to be replaced eventually.   I have large middle-aged saggy breasts, so for me, implants would look very silly and probably feel very uncomfortable.  If I were younger with the smaller, perkier breasts I had when I was younger, I'd probably choose implants.

I had a nipple-sparing mastectomy in March after I was diagnosed with a recurrence. I did a lot of research and I did not see anything suggesting that the failure rate was high. But my surgeon was reluctant to do the procedure because the tumor had recurred, and also since I had previously had radiation to the breast, she was worried the blood supply would not be enough.

I asked for an MRI so as to be better able to see how close to the nipple the tumor was. It showed that the tumor was very small and located in the upper outer quadrant, about halfway to the armpit, and relatively deep into the breast, near the chest wall. It was adjacent to the scar tissue from my lumpectomy. It couldnt have been farther from the nipple, and it looked very small (0.7 cm). I do not have the BRCA gene.

My surgeon finally agreed to do the procedure. But as I was going under anesthesia, I heard her telling the plastic surgeon that she intended to remove the scar from my old lumpectomy. The scar was along the upper outer edge of the mamilo (outer pink part of nipple). If she had told me that before I would have vetoed it but I was not in any position to do so at that point!

While I was on the operating table, she sent the breast tissue behind the nipple to be checked for malignant cells (this is standard for NSMs). It was clear.

The result of the surgery was fine EXCEPT that the part of the mamilo in from where she had removed the old scar developed necrosis. I am convinced that if she had left that scar alone, it would have been fine. My PS agrees with me on that. But she could not say that to my breast surgeon, because the breast surgeon is the one who deals with the cancer, PS just beautifies the result of what the BS does.  Anyway, two weeks after surgery I had to have that part of the nipple removed. So now it is a little lopsided. But it is not that noticeable, and I am just thankful I was able to keep most of the dang thing. It has no feeling at all, but neither does the skin on the rest of my breast. 

All in all, I am very happy with my decision. But since your breasts are small, your situation may be different, because that increases the chances of the tumor being close to the nipple. Also, my tumor was invasive. From what I understand, DCIS is more likely to be multifocal.

If I were in your shoes I would ask for an MRI (if you havent already), although I have read somewhere on these boards that MRIs are not as good at showing DCIS as they are invasive tumors. Maybe also get a second opinion.

Best of luck,

Lisa 

Hello

I am 38 and had a aerola sparing mastectomy on Sept 1st of this year. I chose not to keep the nipples because of the risk (albeit very low), I kept the aerola on both sides. I was small breasted too. I did the expanders and so far so good. I think I look a heck of a lot better than before., I have not had the exchange yet and one side is bigger than the other but they said they would even it out at my exchange surgery. I chose not to do the flaps because I was scared of the long surgery and recuperation. I have two very young children. I am very happy with my decision. And my husband cannot stop looking at me. He loves them and I do not even have the permanent ones in yet. Send me a message if you have questions..

oh. another thing.. My MRI said mine was closer to 5cm, It ended up being 3cm so it exaagerated the size. Also, the path on my nipples in the end said they were clear so I could have kept them but just decided not to.

good luck with your decision

I thought I'd posted this before but apparently I didn't.

At my last BS consult (Weds am before Thanksgiving which I ranted about in another thread), we got on to the topic of nipple sparing.  He said he doesn't believe in the so many centimeters away business.  For him, it's either positive for cancer in the immediate nipple area or it's not.

He also felt that a recurrence would not be a big deal, they'd simply remove the nipple and construct a new one.

Conclusion:  Different surgeons have different opinions on all of this, and it's AWFULLY hard as a patient to know who to believe.

I had nipple sparing bilateral mastectomy but it was preventive; I did not have cancer.

Nipple sparing mastectomies ARE NOT RISKY in the hands of an experienced surgeon, if you are an appropriate candidate!

It is a very new, but wonderful procedure and a lot of surgeons do not have experience with it.  In fact, most do not have experience with it.  However, many surgeons are accepting it and gaining skill in this procedure.  If they do not know how to do this procedure sometimes they tell you it isn't safe, won't be sucessful, too risky etc.

I am not saying it is safe or appropriate for everyone.  For preventive mastectomies (high risk/BRCA+ women etc.) it is usually accepted as safe. There is a thought that if your cancer is 2CM away from the nipple it is safe, but I don't know how many agree on this yet.

My results are great.  Both nipples survived and are in the correct position.  However, most women do not gain "pleasureable sensation" and there can be little irregularities even with the best doctors.  For example, nipples can invert a little or be uneven in color etc.  Some of these can be fixed with tatoos or with dermal fillers.

I had NAC sparring, and I am very happy. My nipples looked a little funny for a while after the surgery, the skin changed color and there was some peeling, I just moisturized and left the skin to its own devices (no peeling it off no scratching or picking) and they are back to their original color. They are not flat, they are symetrical. I liked my nipples to start with and really did not think they could do a good job reconstructing them.  Also I had Rads, and I am now very glad I kept them, no one had discussed with me before how much touble rads skin has in healing, if I did not have NAC, I would not have been able to have nipple recon because of some healing and infection problems I had after the regular surgery.

I am also a BRCA1 + and one Dr was very concerned about my retained BC risk, when I asked her the risk she said 1 to 2%, which was the same risk after a conventional MX since there is always some tissue left, so for me, stepping down from a 90% reoccurance risk to a 2% (heck Id take a 5%) and keeping my nipples and some semblence of my physical self was worth it.

Kate - thanks so much for this info.  It makes me feel much better about the upcoming procedure.  I feel so lucky that my Dr. suggested it or I many never have known I was a candidate.

Heebie Jeebie - I had nipple and skin sparring mastectomy in December.  My doctors (BS & PS) don't believe in immediate recon.  I will begin recon in November (I wanted several months off from treatment).  After surgery, my nipples scabbed over and I was afraid they wouldn't make it but they did.  The exciting part is that even though I won't have much feeling (though I have sensation between the breasts and down to about 1 1/2 inch from the nipple), they will look the same as my previous breasts.  Actually, that is not true.  The skin will look the same but they will be in a much better position on my body (not close to my waist).

 I wish you well on your surgery.

If my DCIS had not been directly in my nipple, I would've gone for NSM in a heartbeat. As it was, I figured if the nipple was gone, the whole thing might as well be gone. 

With smurfiep in mind, I need to correct/amend what I wrote because it is misleading.

The nipple would have had to go no matter what because the inadequate margin was there. There wouldn't be enough scraping and cleaning in the world to have been able to save it.

There. That doesn't make a great deal of difference to anybody else, but it's correct now. 

Hi c100,

I had double mast. DCIS stage0 at 40 years old. Initially was supposed to be skin-nipple sparring but DCIS was too close to nipple & lost one. I'm a UNI now. Cancer only 0.9cm. Bad luck I guess. But those that do the nipple-skin sparring turn out great. I had reconstruction right away & next month I get my implants. If you have any questions, PM me. Not sure if anyone mentioned the picture gallery or not, but it is a huge encouragement after mastectomy that in the end, the "girls" will look great. If you went to UCLA, the City of Hope is not too far from there and they do the nipple-sparring surgery there. Best wishes.

I did have nipple sparing bi-lateral mastectomy. I had no issues at all. The nipples and areolas recovered very quickly after the surgery. When I initially asked about this procedure, the first surgeon that I interviewed (he was a close friend of our family), said that it is a tricky procedure and he has done only 8 and in 3 of the cases the nipples did not survive. He recommended that I go to a major university center, where NSM are done every day. I found another surgeon at NW Memorial hospital in Chicago and she told me that she has done approximately 200 NSM and they were all successfull. She was in the room with other surgical residents, who confirmed that all of her work turned out great. I strongly believe that if the patient is a good candidate, an experienced surgeon will make it work.

I had a bilateral NSM. I was stage 0 intermediate grade DCIS. I was 41 at the time. I had a 4cm on my right side, and it was just under my nipple tissue on the R. My BS was confident that I could keep my nipple, (on prophylactic side too), so I proceeded with the NSM. Since I had the option and she was confident in this, as was my PS, I did it. It's been three years since I had it done, and no issues whatsoever. I have had fat-grafting done to both sides as well. I never thought I would like to see areolar hair grow again--but mine do which means my circulation to this point has been good.

I am however, a little concerned about my circulation lately. I am a runner, and when I wear sports bras and run for over an hour, my R nipple does get cold, dusky, and takes a while to pink up again. This has gotten worse over the past year. This is my cancer side. I wonder if anyone else has experienced this.

Overall though, if you have a really good BS, who has done many of them, I recommend NSM.  The recurrence rates for DCIS are low. Very low. So long as you keep up your surveillance, check ups, and keep an eye on things, you should be fine. There is a psychological and emotional connection to your nipples; this is why I was really hoping to preserve them. So far, so good, and I have an oncology checkup in a few weeks to address the potential changes in my circulation; I will post an update.

Not meaning to scare anyone, but these are things that could potentially  happen.

I'm a nurse practitioner. I vetted my surgeons obsessively, and my results have been remarkable.

If you are near Stanford, that is where my BS is now. Her name is Amanda Wheeler, MD. She is INCREDIBLE.

Best of luck....

Renee'