BRCA 2 + surgery scheduled and worried about reconstruction

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Susie02
Susie02 Member Posts: 17
edited March 2016 in Genetic Testing

Hello to all -

I hate to complain,as I feel so very fortunate to have found my + BRCA 2 result before a cancer diagnosis (and I am from a family with a strong history of breast cancer). My sister has already completed a full hysterectomy, prophylactic double mastectomy, and reconstruction. I had a full hysterectomy and am currently scheduled for a prophylactic mastectomy/recon. in 2016. However, after talking to my sister, I am unsure of my specific plans for reconstruction.

She was probably one of the few who did not mind the expanders. She now has the implants set and does not feel comfortable with them.

This makes me question implants because she was the one who always WANTED "boobs". I have NEVER cared for them.

Any similar stories or experiences to share? Could it be the type, size, etc?

I appreciate any advice!


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  • new__me
    new__me Member Posts: 128
    edited December 2015

    hi. Just came across your post i had prophylactic double mastectomy on Nov 20.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited December 2015

    Bumping for Susie02

    Are you asking why one might not feel comfortable with implants? Or are y

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited December 2015

    Hi Susie:

    Are you asking why someone might not be comfortable with implants? Hopefully, others who have them will share their thoughts.

    To me (Stage 1, no recon), it seems like a lot to go through if breasts are not that important to you and you have doubts. Is delayed reconstruction an option, or are you planning a nipple- and/or skin-sparing procedure?

    BarredOwl

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  • Susie02
    Susie02 Member Posts: 17
    edited December 2015

    Thanks for responding. How has your prophylactic surgery and recoverybeen?

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  • Susie02
    Susie02 Member Posts: 17
    edited December 2015

    Thanks for responding. It seems you understand my feelings. I am not sparing anything ---need to check my insurance for coverage on delayed reconstruction.

    Thank you--

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited December 2015

    Hi Susie:

    It is good to confirm insurance coverage for a possible delayed procedure and ask if there is any time limitation.

    Although I was pretty certain I did not want reconstruction, just in case I changed my mind for some reason in the future, I asked the plastic surgeon and breast surgeon for their opinions about the likely aesthetic outcome of delayed reconstruction versus that with immediate reconstruction (with expanders or direct to implant). Because I could not have nipple or skin sparing procedures (extensive DCIS), was a smallish "B" cup, and would not go bigger, there would not be much skin to work with anyway and a delayed procedure was not seen to materially affect the result in my case.

    Plastic surgeon, and first and second opinion breast surgeons all recommended as completely smooth and flat as possible, which is the best choice if you end up declining reconstruction. My surgeon liked angled incisions (versus horizontal), which was also my preference. Using my protractor, it looks like a gentle 25-30 degree angle up and outward. It kind of follows the rib line. I reminded the surgeon about being flat and smooth with angled incisions on the morning of surgery. Some people have recommended that you ask to include this type of information about surgical decisions in your chart to ensure they do not leave extra skin "just in case".

    I found the information at the breastfree.org site created by BC.org member Erica (aka Barbara), to be one of the best resources for mastectomy without reconstruction. There you will find personal stories (including some from prophylactic procedures), photos (see menu at right), plus useful information about surgery, various types of prosthesis ("forms"), as well as going without prosthesis ("going flat").

    http://breastfree.org

    Best wishes whatever you decide.

    BarredOwl

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  • pjh69
    pjh69 Member Posts: 1
    edited March 2016

    Hello! I'm new to the site. Tested BRCA2+ in 2011, opted for prophylactic hysterectomy/oophorectomy in 2012. I've been alternating mammo's and mri's ever since. I told myself I would re-visit the idea of mastectomy as I approached 50, so here I am! Doctor is strongly encouraging me to do it...set up a consult with the plastic surgeon for the end of April. Looking for any advice and suggestions on how to make an informed decision. So much info out there, I'm a little overwhelmed!

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  • Cincymomof2
    Cincymomof2 Member Posts: 4
    edited March 2016

    pjh69. I am also Brac 2 +. I am 41 and just had the prophylactic bilateral mastectomy on March 9. My decision was based on me never wanting to have to go through chemo or radiation and worrying every six months. It is a very personal decision for each person. I have a very supportive husband and teenage kids. I just want to be here for them.

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