Nipple sparing -- risky or safe?

[LizzElliot]

May I get your thoughts, experience or any stats you've seen on nipple-sparing vs. not?
And also, any of the same on risks of doing double mastectomy when there is no currently detectable cancer in the other breast?

The reason I ask --

Surgeon asked me if I wanted nipple-sparing for my upcoming mastectomy. I hadn't really even thought about it. I've always worn padded bras since I personally am not a fan of the nipples popping out under my shirt.
But at the same time, I'm not opposed to the idea of nipple-sparing in that anything that makes things visually less different for me may perhaps have a psychological advantage. Again, I don't know...I'm not attached one way or the other.

Anyway, a friend just wrote to me that nipple-sparing has been shown to increase odds of a reoccurrence, which of course, I don't want.

And on the double-mastectomy, while my oncologist and surgeon support me in wanting a double mastectomy and believe it makes perfect sense given my family history, etc., when I met with me oncologist the first time, she mentioned that while she is in full support of double for me, she also wanted me to know that is not an assurance that another B/C would not occur in the other breast, but would effectively, then, push it further into the chest or body. ie: making it more complicated to remove surgically. I don't think she said this to scare me, but just to be thorough and offer all sides of what the current trends may or may not be.

Please, any or all who can comment, I would so appreciate! I hope this is not a redundant question!

Thank you!
lizz

[snolan]

There are always risks with every discission, all you can do is take all the advice and go with what your heart feels is right. If this stupid stuff comes back its going to come back, you can second guess any discission that way. We will always have that black cloud hanging over us. I chose double mastectomy I couldn't have nipple sparing cuz the cancer was right up to my skin. I have been happy with my discission in every way and am 4 years out since my surgery.

[crb]

My breast surgeon didn't give me an option for my right side - cancer started in the duct, and that travels to the nipple, so leaving it there was a chance of recurrence. Since they were taking one side, I opted for taking both nipples, and I am leaning towards not reconstructing/tatooing them back (had immediate implant reconstruction at time of bmx). I was never a fan of "headlights" and love being able to not wear a bra at all! I do have some numbness along the incision, but that hasn't really bothered me.

I am 7 weeks out from surgery and NO regrets!

[LizzElliot]

thank you both. I spent the evening reading and I guess NS is kind of new. But it surprises me that my doc thinks I'm a candidate since my tumor was Grade 3 and HER2. I'm reading those are kind of warning signs to not do, perhaps...

And I suppose I had Nipple Sparing surgery somewhat confused with the "reconstruction" of a nipple and areola later (-- presumably by the Plastic Surgeon at 2nd surgery when he switches the spacer for the implant from what I can tell...?)

Is it that the Nipple Sparing Surgery part is done by the breast surgeon, while performing mastectomy -- ie: that process is more driven by breast surgeon expertise?

Either way, I'm calling my surgeon today to let her know I don't feel I need Nipple Sparing procedures. I'm perfectly fine with nipple and areola reconstruction later on.
As it stands now in my mind, I probably won't even do the nipple and areola reconstruction.

Yes, that headdlight thing! Thanks CRB for reminding me what the term is. ha ha. And as for being in a gym and showering, I'm really not concerned with that aspect of not having a nipple or areola. I think it is just fine if women know I went through it if it causes more awareness!

[roz123]

I was just telling a friend the other day I wish I had done nipple sparring...I saw another BC gal with that surgery and her breasts look so natural. Yes they have no feeling and it is a bit riskier to leave them (not sure of the percentage of increased risk of a local reccurence but it was quite low). I think if you are a lumpectomy candidate you would be a NSM candidate.
my surgeon does not believe in them, which I think is kind of old school. The younger surgeons do them all the time. If the incision is done under the breast, wow they look so good!

I would ask if the location of your cancer makes this risky or not and then just go with personal preference

[jaykay]

I had nipple sparing - my plastic surgeon asked me if I wanted it and I said as long as the breast surgeon was okay with it, then sure, let's give it a shot. I'm happy with the results and would have been okay if I wasn't a candidate.

I didn't consider it risky at all based on the location of my tumor.

REgards,

Janis

[LizzElliot]

hmm...much to mull over. I still have 3 weeks to mull, I guess...

[CoolBreeze]

Okay, so I don't know anything about nipple sparing but I would go by what your doctor says as far as relapse goes rather than your friend. So that's a question to ask.

As for a double - here is a study in the Journal Oncology that shows a massive jump in rates of double mastectomy in women with DCIS and early stage invasive cancer.

http://jco.ascopubs.org/content/27/9/1362.full.pdf

This spike has happened despite numerous studies that show that there is no survival benefit for doing this type of surgery.

I wrote a blog post about it here and in that there is also a link to a New York Times article on the subject written this weekend.

http://www.butdoctorihatepink.com/20...st-cancer.html

(My title is copying the times article, don't judge based on that!)

I say that not for you to read my blog but to read the responses from the women who have been on both sides of this situation. It will give you a nice overview. Nobody pushes one thing over another, just women sharing their experiences.

My only warning to you is that mastectomy is not always benign. I had a uni so only removed the cancerous breast. I am not alone when I share the problems I have had: numbness, frozen shoulders three times, loss of function and range of motion in my right arm and chest, back problems, pain since the day of exchange, muscle spasms and an itch that will not go away. The implant is also very uncomfortable, is cold, feels unnatural but that happens to most.

This is, unfortunately, not uncommon. While it doesn't happen to everybody, and may not happen to you, it is a possibility you should be aware of. I would not have believed I could have had all these issues because I was so strong and healthy - but I have. I am very, very grateful I only did a uni because having these problems on both sides - not being able to raise both arms for the rest of my life -that would be very difficult, especially with all that I've been through.

Many women, but not me, have infections and reject the implant. It's really not a benign procedure and it is nothing like enhancement.

The alternative side to that is I didn't get a very nice reconstruction. It looks fine in clothes but not in clothes it is not even. However, evenness is not as important to me as sensation and I at least have feeling in one breast, so I don't mind and honestly, where my cancer was located I was not going to get an even result either way. I lost my infra-mammary fold and that can't be recreated so there would have been no use in removing the other side.

Here is a question to ask your doctor: if you decide to only remove the cancerous breast and decide in a year you decide that you haven't had any issues with function and don't mind the numbness, then can you get a prophy on the other side?

There is the Women's Cancer Right's Act which states a woman is allowed to have surgeries and revisions to try to achieve symmetry but I am unsure how long you have to do it. Can you do it ten years down the road?

Remember, implants are not lifetime devices and have to be replaced so more surgeries are likely no matter what.

If there is no medical reason to remove the healthy breast, then you may have time to make up your mind and decide. Since there is no survival benefit than I think it might be a good way to bridge the gap and wait and see if you are allowed.

And, of course, this is an extremely personal decision. If you have the BRCA gene than you probably should do a prophy, and there are many other reasons why it can be done. I am not telling you which way to turn at all, I am just sharing what happened to me so you can realize it is not the "perky new boobs" you probably have been told you'll get.

Good luck with your decision! *big hugs*

[LizzElliot]

Thank you so much, Cool Breeze. This gives me a lot to go on! Hugs! lizz

[Shirley]

Lizz,

I had a unilateral nipple sparing mastectomy one year ago, followed by radiation and Herceptin. My docs were fine with nipple sparing and I decided to take the risk, especially since I was going to have radiation and did not have metastasis. I also do not have any family history of BC. I'm glad that I made that decision and in the off chance cancer returns I will deal with it.

As far as a prophy mx, I agree with Cool Breeze: there is no evidence to suggest increased survival if you remove the healthy breast. Between the two issues--prophylaxis mx and nipple sparing, the latter probably has the biggest association with recurrence. They say that a recurrence in the opposite breast is a completely separate, unrelated cancer.

Keeping as much as I could was important to my sense of self. I would have chosen differently if I was younger or had a family history, as both of those factors seem to correlate to increased risk. A reconstructed nipple or tattoo is one extra surgery and I don't think I would have been ok with the results.

Expanders are hard as a rock and I'm glad I don't have them on both sides. My plastic surgeon emphasized to me recently that silicone implants will not make the breast anywhere near what it used to be. I want diep reconstruction but was advised that I didn't have enough fat (my regular ps disagreed--hey thanks--so he wants me to get a second opinion). This surgery would be out of question if I had both breasts removed.

In the end you have to go with your own instincts, especially if your docs have given you the choice. Some women don't want to live with the risk, which I understand. Either way I will live for the rest of my life with a sense of risk that the cancer will return, but this would be true even with a double mx.

I don't want to tell you one way or the other; these are just my immediate thoughts about it. I hope you make a decision that is just right for you. You'll be having your surgery at about the same time I did last year. September is a nice month to take some time for yourself to recover.

Best wishes to you,

Shirley

[norkdo]

my vote: do it.