BRCA1 Positive- Reconstruction? Need advice

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ebrown2
ebrown2 Member Posts: 1
edited November 2015 in High Risk for Breast Cancer

I am 37 years old, have been happily married for 16 years, have a 9 year old son and a 7 year old daughter and have recently tested positive for BRCA1.

Both my mother and grandmother passed away in their early 40's of ovarian cancer and 3 aunts on my mother's side also had breast cancer; two are no longer with us, only one has survived the battle against cancer.

My doctor has suggested a double mastectomy and to also have my ovaries removed. They want to proceed with the most intrusive surgery first which is the double mastectomy. They have offered to do reconstructive work but this will add a series of additional surgeries to the list and they have also informed me of the possible need of additional surgeries in the future as they suggest implants are to be replaced every 10 years.

Because of my little ones, I would like to keep the surgeries to a minimal and have been thinking of opting against reconstructive. I am seeking advice from someone who has encountered this same predicament to help me see if I am making the right decision.

Thank you!

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2015

    Hi ebrown2,

    We just want to welcome you to our community here at BCO. We hope you find the info and support you're seeking on our site. You might also find this link useful to help you with your difficult decision:

    Is breast reconstruction right for you?

    It is a very personal decision indeed, and has much to do with your life circumstances.

    Warmly, the mods





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

    Hi eBrown2:

    My situation is a little different, because I had bilateral breast cancer at age 52. I consulted with a plastic surgeon for information about my options, which were: (a) saline or silicone implants (immediate to implant or two-step with expanders); or (b) latissimus dorsi flap (using muscle from the shoulder blade area). I chose no reconstruction, because I wanted as little surgical intervention as possible, and did not want to experience any of the possible complications of reconstruction. I also did not want to deal with possible revisions or replacement of implants (due to their limited lifetime), to put anything under my chest muscle, or to cut into and move healthy back muscles that I use. I would not have elected any autologous tissue procedure, even if I qualified, because I did not want to impact a second site. This is just how I felt about it, and many people choose differently.

    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:

    http://breastfree.org

    There you will find information about why others chose not to reconstruct, personal stories and photos (see menu at right), plus useful information about surgery, various types of prosthesis ("forms"), as well as going without prosthesis ("going flat").

    Rates of reconstruction are around 50%, so many choose not to reconstruct per this MedScape article:

    To access, Google this title: Breast Reconstruction Rates Low After Mastectomy

    I have a pretty nice surgical result. I made it very clear to my surgeon that I wanted to be as flat and smooth as possible. From photos I have seen, it seems like smoother results may be easier to achieve for a leaner person (you could ask about that). 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. 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.

    Best wishes to you.

    BarredOwl


    Age 52 at diagnosis - Bilateral breast cancer - Stage IA IDC - BRCA negative;

    Bilateral mastectomy and SNB without reconstruction 9/2013

    Dx Right: ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Grade 2 (IDC); 0/4 nodes.

    Dx Left: ER+PR+ DCIS (5+ cm); Grade 2 (majority) and grade 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)).

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  • Soancika
    Soancika Member Posts: 7
    edited November 2015

    I have a Brca1 mutation and 3 little kids under 5. Have a wonderful and supporting husband. Don't let the doctors scare you. Talk to a plastic and a breast surgeon to see if you could be a candidate for a direct to implant reconstruction. Implants do mean that at some point you will need a exchange them. There are lots of options including no reconstruction, more surgeries or less.
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