Nipple skin sparing mastectomy???

Hi,

I'm new to this site, but have spent a lot of time on another site. You gals who have the option of a skin-sparing and nipple-sparing mastectomy are so lucky! I had my unilateral mastectomy in '06 and the nipple-sparing option wasn't available to me here. Since then, a friend has had this done, but had to lobby her physician, who had to get permission from the medical board due to fear of risks. From what I've read, however, in the small event of a recurrence in the skin or nipple, it would be very easy to find, as it would be right there on top. And without the internal ductwork of the breast, I would think it would be practically impossible to spread. If I could have had nipple-sparing, I definitely would have gone for it - tho I am more than happy with my DIEP breast and reconstructed nipple.

Skippyrcis,  I am in Ocala.  I had to travel to Tampa for each appt.  I went every Friday for a month and had 100ccs each fill.  No problems with that amt.  I had the exact same dx as you in both breasts.  Lucky to not need chemo or rads.  I had my exchange on Mar 6.  I'm doing well.  They are not perfect, but neither were the old ones.  I"m happy.  Don't have to make that trip for 3 mos.  The last trip was my 15th.  One in the back of an ambulance.  So I'm happy to stay home and recover.

Pitanga,

I am so glad your frozen sections were clear, and I hope the final report will confirm that!  Hope you have a speedy recovery.  You will be so thrilled with the results! 

Hi Everyone,

I'm so glad to find this site.   I had a skin and nipple sparing MX on Nov. 18.  I'm so glad that was an option for me.  I was considering a PBM last  Feb. but the nipple sparing wasn't an option at that time.  When I went in Sept. and found out I had to get yet another biopsy because the ADH had grown considerably and had spread to a different area, I elected to get a BMX and just waiting 6 months made the difference because my surgeon was working with a PS that did it.  I'm so glad I did because when the path report came back they had found DCIS in my ADH breast and ADH in my "good" breast that had always been clear.

One question I have is that my incisions are at the bottom of my nipples and the left one is perfect, but the right one is a little cinched in. Has anyone had anything like that? Were your incisions in your nipple or under the breast?

Thanks for any feedback.

Peggio

Hi Snoopygirl5 -

My PS said the same thing.  He will go in the nipple for the exchange, I just hope at the end of it all that they look like the left one.  Are you almost done with your fills?  I think I may be close to being done. The last one was really tight I had to take pain pills for 2 days and I am only at 325cc. My PS doesn't overfill though. I think he puts in a bigger implant to reduce rippling.  I kept telling him I want to look natural, but I want to be bigger than I was. I have an appt in April to discuss it with him further to make sure we are on the same page about size..

Peggio

HI Peggio -

I think I may go for one more fill for me - maybe another 50 cc's and then another couple of fills for overexpansion.  I understand about wanting to look bigger but still natural.  I want the same thing.  I feel very tight also and only have 300 cc's right now.  Not sure how much more my skin will take.

My understanding is that he's going underneath for my exchange thru the same incisions.  I hope that he will do that and not make any further incisions.  He did say that they would fix any problems at that time.

Imrunner - hope you are feeling better now.  those infections aren't fun.

Karen - sorry I haven't been online for awhile so hope your incisions aren't still sore. My incisions under the breasts are fairly long and took awhile to heal. After the steri-strips came off I kept those silicone scar strips on them. On one side the scar is thin and hardly noticable. On the other, it is wider and shows some but who cares! My nipples and breasts themselves aren't scarred at all! My nipples actually look and act more normally now than they did even 6 months ago (I'm now 1-1/2 years from my BLM). For the first year they were usually half-erect and I didn't like that they showed through a thin bra. But now they soften normally. I didn't think it would ever happen! Having them touched is a bit weird though; to my DH they look and feel normal, but to me they are numb. Being able to avoid that additional surgery to reconstruct nips was so worth it. Glad to hear that you others are pleased with your results too. I echo the "don't buy bras yet" advice too. I bought one to show my PS what size I wanted to be and he got close, but not exactly. And the implants are such a different shape from the TE, that they don't fill the cups the same. Save your bra shopping for when the swelling goes down and you can enjoy your new shape.

Hi girls,

I am checking in with some bad news: A month after my nipple-sparing surgery I now only have half a nipple.

What happened was this: as i was going under from the anesthesia, I heard my breast surgeon telling my PS that she "HAD TO" excise the old lumpectomy scar, which curved around the upper-outer edge of the areola.

The entire nipple was black at first. A week later most had gone back to normal, but the part adjacent to the scar she had re-excised was still black. When 3 weeks had gone by, my PS said this was necrosis and she would have to slice off the upper layer to let the skin below heal...This was done last Friday, under local anesthesia. She told me as she was working on it that it looked quite superficial except for one part that was deeper and that she would have to cut out all the skin, and that part would not grow back. I could not see what she was doing so took her word for it.

So yesterday I went to get the dressing changed, and lo and behold, it was healing just fine BUT there was only half a nipple. Of the part of the areola that had been black, nothing was left. She had cut it all out and sutured the outer breast skin directly to the nipple itself.

I cried when I saw that... I already felt betrayed by my breast surgeon--her rationale for re-excising the old scar was she was "worried it might develop cancer in the future"--but shouldnt that have been MY decision?  I have a metastasis for God´s sake... If I am going to die it is not going to be from some piddling local recurrence!  The necrosis, I am sure, developed from the lack of blood circulation because of that re-excision. But there it was, so what to do but get rid of it... But why did my PS tell me it was "mostly superficial" as she was busily cutting out the whole thing?

Part of me says I am being a baby and that I should be just thankful that I even have half a nipple and when it heals, get the thing tattooed and forget about it. But it really upsets me to find these things out after the fact, when it is too late.

Lisa

Well, as time goes by I´ve been reconciling myself to having half an areola....and I´ve forgiven my PS for not telling me as she was doing it. Aesthetics are her business and if there was a way to leave any of that necrotic areola she would have done it.

 Looking in the mirror just now I realized that maybe one reason I´m getting used to having only part of an areola is that the part that is left has lost nearly all its color, so it is really hard to see that half is missing. My areolas were never really dark, but on the non-surgery side the areola is clearly demarcated, and on the surgery side it is so pale that I have to squint to see where it ends and regular skin starts.

Just wondering, has this happened to anyone else?

Lisa

I also had a nipple sparing bm and lost most of the bottom half of my areola on one side because of tissue that went necrotic after surgery (the ps had to do two revisions post bm to get rid of necrotic tissue). At first I was upset about it, but I've gotten used to it and it doesn't bother me anymore. The ps said I could get it tatooted later if I want but I don't think I will.

Thank you Yasmin and tablover for your replies. Tablover, like you I am getting used to the nipple being off-center in the areola circle but the thing I am wondering about now is the color difference between the two sides. Are your two sides the same tone or did the necrotic side lose some color?

LizzyGirl, I am sorry to hear you are dealing with this miserable disease. You are so young.... I was 39 at first dx, so I can relate. I cannot recommend doctors in Boston but I can say that one option that was presented to me was the possibility of leaving the areola intact BUT removing the nipple itself because of the milk ducts it contains (the idea was to reconstruct it later). But the MRI showed my tumor to be far from the nipple so I was not eager to lop it off "just in case", but since my case was already a recurrence my breast surgeon was not eager to leave it a priori. The compromise we reached was to do the frozen section during surgery and if the nipple showed any malignant cells she had my permission to take it out then. She also suggested prophylactic mx on the other side, and was 100% OK about leaving the nipple there.

In my case the MRI was crucial in helping me come to a decision, as it gave a much clearer idea of the size and location of the tumor than the mammogram had. It also showed the other side to have nothing suspicious, and that helped me to decide against the prophylactic.

All my best,

Lisa

Karen,

I discussed this with several doctors in making my decision and they all told me that leaving the nipple (i.e., the thing that projects out and that babies suck on when nursing) necessarily means leaving the ducts it contains, as they go right through the tissue--that is how the babies get milk out of it. The nipple does NOT contain lobes.

The areola (pink circle of flat tissue around nipple) contains neither ducts nor lobes, so leaving it has no implications for cancer recurrence, as compared to regular skin-sparing surgery in which the nipple and areola are removed.

As my doctors explained it to me, it is not difficult, technically speaking to leave the nipple--this is now routine for many  prophylactic mastectomies--but it does mean leaving ductal tissue, which leaves open the possibility of a recurrence when you are dealing with ductal carcinoma.

The question is how MUCH of a possibility, and in my case since the tumor was halfway to the axila, I decided that the risk was probably quite small. I am not sure I would have made the same decision if the invasive tumor were near the areola, or if there had been DCIS in several different areas of my breast. I had a lumpectomy 9 years ago with clean margins on frozen section, followed by chemo AND rads... and here I am 9 years later with a recurrence in the area immediately adjacent to my old surgery.

LizzyGirl, best of luck to you in making this very difficult decision.

Lisa

http://www.ncbi.nlm.nih.gov/pubmed/17084333http://www.breastpreservationfoundation.org/2008/12/many-breast-cancer-patients-are-not-receiving-most-advanced-breast-conserving-surgical-techniques-new-study-finds/There are two articles on nipple sparing mastectomy and the second one talks about the Japanese physician who conducted the study I am talking about .It and many other tings on the intent say that there is very little if any recurrence of breast cancer in the nipple areola complex if any.

Hi Peggio - I just wanted to respond that I had my mast incision along the top of my areola and it too was a little pinched in at first. But now after some time it seems very flat and natural looking. My mast was July 08. At my exchange surgery I had my ps go in under the fold so as not to open up the nipple again.

I too am glad I had the nipple spared, especially when I awoke from surgery but for those of you feeling bad if you didn't get to keep your nipple, keeping the nipple is no panacea. Once they remove the tissue from under the nipple, it looses its nerves so there is no feeling usually and it no longer has the relaxed and erect positions - it just kind of sits there semi erect all the time. So most of the time it doesn't look the same as the other nipple. And even though my breasts match relatively well, I didn't have a lift on my good side so my nipples are not even. So ps has to fix that later. If I had done BM it would have been wonderful to keep both nipples, but with just one it has not worked out to be as great as I thought going in.

noelle

I asked my very Conservative BS what the risk was of keeping my nipples and getting a cancer, she said it was a theoretical 1 to 2% risk. She was very anti keeping my nipples, so her answer really shocked me.

When she went through the risk reduction of the bmx, she said its not a 100% reduction because they can never get all of the breast tissue, and the risk reduction is appx 99%

So, having had a BRCA + and prior cancer risk that put me at 80 to 90% risk of getting another cancer, getting to keep my nipples and have an overall risk of appx 3% sounded pretty good.