BRCA1 Positive - not sure about reconstruction after bilateral

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DLisa53
DLisa53 Member Posts: 1
edited September 2015 in High Risk for Breast Cancer

recently tested positive for BRAC1, will be moving forward with bilateral but not sure if I want to do reconstruction? Would like to hear from others on your journey and what you decided? I have met with a Plastic Surgeon, his recommendation for me was Diep over implants. Not sure if I want to under go that much surgery and just go flat and use prosthetics?

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited September 2015

    I had unilateral DIEP (not for risk reduction, as yours would be) and it has been fine.

    Going into the operating room with two breasts and coming out with everything pretty much complete is great however you may want to read some of the other forums here regarding reconstruction options. Some consideration should be given to your age, body type and lifestyle. The experience of the surgeon is also a significant factor. Would he have a partner or team working in order to minimize the time under anesthesia?

    A few of the older ladies in our local support group did not want implants when they had their mastectomies decades ago and have been flat but have taken advantage of upgrades in the design & materials used for prosthetics. It is important to maintain proper posture or serious back/shoulder problems can result.

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

    Hi DLisa-

    We want to welcome you to our community here at BCO! Our Reconstruction forum is full of really valuable information, we would suggest taking some time to read through the posts over there and connecting with members who have been in your shoes. It's a very personal decision, but hearing from others and getting to know their stories can really help!

    The Mods

  • Ddw79
    Ddw79 Member Posts: 533
    edited September 2015

    I come from a long line of BRCA1 positive family members. It's excellent that you know. I was one of first people in US to be tested for this in study 22 years ago. Took two years to turn around results . I just redid this and took two months.


    In the interim while waiting 20 years ago I had a prophylactic oophorevtomy at 41. I don't know how old you are but I think this is well worth considering if not doing. If you have any questions about this part please message me.


    I am sending you good vibes and wishes and I am very glad that you know what you know

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

    Hi DLisa53:

    My situation is a little different, because I had bilateral breast cancer. I had a bilateral mastectomy without reconstruction at age 52. I also consulted a plastic surgeon, and my reconstruction options 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 sources about 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").

    I note that rates of reconstruction are around 50%. There may be some access problems, but many women choose no reconstruction.

    http://www.medscape.com/viewarticle/830208

    I have a pretty nice surgical result. I made it clear to my surgeon that I wanted to be as flat and smooth as possible. From photos I have seen, it seems that 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 (looks like a gentle 25-30 degree angle up and outward).

    By the way, I don't have any posture problems. While it is important to be cognizant of maintaining good posture (and not assuming a protective posture after surgery), wearing forms is not required (compare a little girl). I go flat at home, wear an "empty" bra with two pads for exercise, or wear size 1, extremely lightweight microbead forms most of the rest of the time. I have a pair of very nice silicone forms also, but I don't wear them too often.

    Good luck whatever you decide!

    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)).

  • Marg64
    Marg64 Member Posts: 64
    edited September 2015

    DLisa,

    Completely my opinion, but I feel that if you are comfortable seeing scars with where your nipples were, without reconstruction is the logical choice.There are fewest complications, less recovery time to go back to work.

    I would choose this if I were OK with seeing scars there instead of...something. It really depends on the woman on how she feels about it.




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

    DLisa,

    Please keep us posted with what you decide or let us know if you have more questions!

    --The Mods

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