nipple sparing vs recon

LunasMom

Hi all!

First I'd like to say that these boards have been an extremely big help to me the last seven months & I truly appreciate all the women willing to share their stories & support.

I'm 43, mom of two boys without a family history of breast cancer. I've never smoked, I breastfed some, I'm a runner & generally physically active. I started my period when I was 9 or 10 & had an ablation last year for heavy periods. Not a lot of risk factors. My routine mammogram this past January showed I have extremely dense breast so I had an ultrasound done. Long story short, I needed to have needle biopsies on both breasts & eventually a surgical biopsy on my right breast. I've been diagnosed with both Atypical Lobular & Ductal Hyperplasia. I found this forum at that time and was so thankful for all the helpful information. I had another recent mammogram \ultrasound on the left side which now shows another cyst. Because of the terrible anxiety I went through initially with all the testing & waiting & then more testing, combined with my decision that I don't want to take Tamoxifen, & I'm concerned about my quality of life, I started the process to have bilateral prophylactic mastectomy. I simply can't stay on this merry go round of testing & biopsy.

My breast doctor wants to remove my nipples along with everything else. He said there could be cancer cells lurking there which could be a problem. I don't actually have a breast cancer diagnosis at this point.... I'm trying to avoid that. My question to others is am I crazy for wanting to keep my nipples??? From my research, the chance of there being cancer there is miniscule. Losing my nipples for some reason seems so depressing to me. I'm worried about losing such a big part of my femininity. I am concerned about how I'm going to look. It sounds silly, but I kind of went into shock & panic mode listening to my doctor & trying to imagine what I'm going to look like. Any thoughts, perspective, advice would be greatly appreciated.

ElleElleBee

I just spoke with my breast surgeon this past Friday. I have very small breasts and a very large mass in my left breast. Nothing in the right as of right now. So she's planning on doing a mastectomy on the left side. Surprisingly, she offered me a nipple-sparing mastectomy. Oddly enough, I was excited to lose the nipple because I hate how nipples poke through shirts if you don't wear the right bra, so I told her not to worry about it. She laughed and looked kind of relieved because she said nipple-sparing surgery is more difficult because she has a much smaller incision to work with. I'm planning to get cool tattoos anyway, so the nipple wasn't a big deal for me. I wish they'd just remove the right nipple now too! LOL

LunasMom

Thank you ElleElleBee! You have a great attitude. I'm hoping I can get to that point.

muska

LunasMom, I would recommend you get a second opinion. Getting a BMX in the absence of cancer or genetic mutations that predispose one to cancer, is a drastic step. BMX is a mutilating surgery and you would lose all sensitivity in your breasts no matter the type of BMX. Breast reconstruction is a long and painful process that often leads to complications.

However, should you decide to have BMX I certainly recommend nipple sparing especially in your case where it would be prophilactic. Not all breast surgeons are trained and have experience in performing nipple sparing mastectomies, so you might need to find another specialist. They check the tissue near nipples during surgery and keep the nipple only if everything is clean

Mucki1991

I agree with Muska and you should check out what mastectomy really looks like even with the a talented plastics person. Granted I am biased as I'm still recovering from my mastectomy and I did everything I could to save my boobs. Also nipple sparring can fail and will you still be okay if that happens? If you remove the breast but don't do hormone therapy ( if that's what has been suggested ) you can still get breast cancer as its impossible to remove every cell from the breast tissue. Not trying to upset you just offering a view from outside. I always respect our rights to choices we make about our bodies.

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NotVeryBrave

Everyone's tolerance for the "merry go round" is different and that definitely influences our decisions. However - a bilateral mastectomy is a big surgery with many possible complications. You should get a few BS and PS consults to compare.

I had the surgery with nipple and skin sparing. The nipple on the cancer side was pretty badly abused during the surgery. It's recovered but still not normal. The other one looks and acts normal, but I have NO sensation there or anywhere else in either breast.

It's a good thing I could keep them since I feel like the rest of me looks pretty fake.