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Nipple Saving Mastectomy- Are You a Good Candidate?

kate33's picture
kate33
Posts: 24
Joined: May 2010

I am posting this because I realized that not every women out there realizes that just like there are different kinds of breast cancer there are also different kinds of mastectomies.

I was diagnosed with DCIS in December. My surgeon told me my options were lumpectomy with radiation or mastectomy where they would save the skin but remove the nipples. Neither option was particularly appealing so I decided to do my own research. That is when I discovered NSM and the reason my surgeon did not tell me about it was because she was not trained in the procedure and she was under the mistaken belief that it would put me at higher risk for recurrence. Had I listened I would have had more disfiguring surgery than necessary.

I think all surgeons should be required to tell you about ALL of your options whether they can offer them or not. So here's some brief info on NSM. Not every women is a good candidate for this type of MX. Your cancer cannot be too close to the nipple. For the best odds of success you really should be somewhat smaller breasted. In larger women it is extremely difficult to maintain blood supply to the nipple if it has a long way to travel. If you want to have NSM you absolutely need to find a very experienced surgeon which can sometimes be very difficult depending on where you live. Only experienced surgeons are able to perform this MX successfully therefore ensuring your rate of recurrence is the same as traditional MX. During NSM your BS will scrape the cells within the nipple during your surgery and biopsy them right then and there. If they detect ANY cancer cells they will remove your nipple. And there is still a chance after the surgery that the blood supply to the nipple could still die off and you could lose it. (Again, by selecting an experienced surgeon you greatly improve your odds of this not happening.) And, lastly, although you can still keep your nipples the vast majority of women will lose all sensation within the nipple.

So, all that being said, if you feel this is a surgical treatment plan you might be interested in I urge you to do some research and seek out second opinions. On breastcancer.org there are several threads discussing this procedure and where they are being performed. Feel free to contact me for more information. I think all BC patients should have access to as much information as possible regarding your options before making a decision regarding treatment. As I have learned, you can't always count on your doctor to do that.

2Floridiansisters's picture
2Floridiansisters
Posts: 365
Joined: May 2010

I want to learn as much as possible, I still have no idea if I'll be getting a lumpectomy or the other, truthfully neither sound like a walk in the park. uuuggghhh There's so much to learn especially regarding reconstruction, I'm 50 and personally think getting new boobs doesn't sound like anything I want to do, so that leaves me with learning all about prostetics, I just don't know anymore, I feel like this is all a bad dream.

Love Ronda

kate33's picture
kate33
Posts: 24
Joined: May 2010

Rhonda-

I am going to be 50 in just a few weeks myself!

You're right- no walk in the park. But there are pros and cons for both. For me, I knew I would definitely want reconstruction. (I plan on living to 100 and was not willing to not have boobs for 50 years!) Since I was quite small to begin with a lumpectomy would have removed 25-30% of my breast. Combine that with the effects of radiation and reconstruction can become quite challenging. The reconstruction phase isn't much fun but it is tolerable. It is an incredibly difficult decision, though. You're doing the right thing by trying to learn as much as possible before deciding. Good luck!

Kate

2Floridiansisters's picture
2Floridiansisters
Posts: 365
Joined: May 2010

LOL who would've thought that this is where we'd be at this time, huh? I don't know if you're married but I am and no way in HECK will I ever do that again, so if something ever happens to my husband of 21 years, no way, no way, no way will I ever need to be undressed in front of another. No way, I've had all I can take in that department. I'll get along fine somehow but I seriously think I don't have enough courage to put myself through anymore surgery or recovery time. This is just something I'm not looking forward too at all.

Good luck to you in all your future choices, be the beautiful young lady you are in that photo, I wish you well and many many more Happy Birthdays to come.

Love Ronda

kate33's picture
kate33
Posts: 24
Joined: May 2010

Thanks for the birthday wishes, Rhonda. You are so sweet.

Yep, I definitely didn't think this was how I was going to be spending my 50th birthday month that is for sure! I'm married, too. Married 16 years, together 18 and friends for over 30 years! I can't imagine ever dating, let alone marrying again, if something were to happen to my DH. My reconstruction is just for me. I know I'll probably never feel completely whole again but I'm going to get as darn close as possible. I figure the year 2010 is pretty much going to suck from beginning to end but one year out of the 100 I'm going to live is nothing! :)

I saw another post where you had made your decision to go ahead with BMX. I know how hard it is. Not to make the decision. I think in our heart of hearts we know which path is right for us. But saying it out loud and making it happen. Whew, that's tough. Just never thought it would happen to me. I definitely went through all the stages of grief, anger included, but haven't quite reached acceptance yet. I'm getting there, though.

My BMX was on March 8th. If you have any questions about what to do beforehand or what to expect feel free to e-mail me. Do you have your surgery date, yet? I wish you good luck as well! Thanks again for the BD wishes!

Love, Kate

Christine Louise
Posts: 429
Joined: Feb 2010

Bumping this thread up since questions about this issue have been posted again.

lauriesandiego
Posts: 2
Joined: Jun 2012

Hi Kate, Thank you for your sharing the information; we are the same age. I was just diagnosed with DCIS, but I still have appointments to figure out more information.
You had no radiation and no chemo, just the NSM; right?
I assume you had implants put in; what type?
If so, did you have the implants at the same time as the masectomy?
Are you still pleased with the result; do you feel the new breast looks natural?
Any suggestions for a doctor? I am starting my research now.

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