double mastectomy

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  • Yogatyme
    Yogatyme Member Posts: 2,349
    edited January 2020

    I was dxed with Stage 1 micropapillary bc and had BMX in Aug (BRCA1+ was reason for BMX) and elected for no reconstruction. I go flat most of the time and when I want “curves” I use knitted knockers in a bralette. They are light weight and not hot. I have no regrets. I am 68 yo and as others have said, if I was younger I may have made a different decision, but so glad I decided on no more surgery. The fatigue from the BMX was my main issue and the swelling from sentinel node removal was pretty uncomfortable at times, but I didn’t have a lot of pain. Good luck w your decision.

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  • Kareners
    Kareners Member Posts: 2
    edited April 2020


    I'm 74 and dx Aug of 2019 with a very early stage b.c., but this was the 3rd one I'd had, so I chose a double mastectomy. The surgery healed well and quickly, BUT the complication of cording and lymphedema has left me feeling like I gave up "my girls" just to become "handicapped" on my rt. side with chronic Lymphedema and cording ~ none of it comfortable, barely tolerable.


    How I wish the surgeons would be more mindful of the risks for lymphedema and that they would communicate those risks to the patient before going into surgery. Like other comments in the Lymphedema section, I get angry about how "deaf" surgeons are re. these risks and I also am angry about how health coverage for Lymphedema and cording is still way behind in recognizing the research and the anecdotal notes on the high numbers of occurrence. It's way past time that researchers and labs find a more effective treatment plan and even a cure ~ I'm hoping!

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2020

    Welcome, Kareners! We're so glad you've joined our community, and hope you find this to be a supportive place. But we're so sorry to hear about the issues you're having! We totally hear you on doctors being more communicative of the risks, and you're right - a cure or effective treatment is long overdue. We hope you get some relief soon, and we hope to hear more from you here!

    The Mods

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  • Kareners
    Kareners Member Posts: 2
    edited April 2020

    I'm interested in learning what others with lymphedema and cording are doing in the ways of treatment. What has worked for others to manage or even better, to reduce both conditions?

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited April 2020

    Karen - this link below is a wonderful site with everything you can imagine about LE. There are also a lot of LE threads in BCO if you go to the search option on the left.

    I have truncal & breast LE. My goal is to prevent it from moving into my arm(s). I had PT for several months with several different kinds of treatment. I now do MLD - self treatment. I wear sleeves and gauntlets when I fly - and for me it works.

    https://www.stepup-speakout.org/


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  • Yogatyme
    Yogatyme Member Posts: 2,349
    edited April 2020

    Karen, stretching at least 3x/day really helped my cording and I got back to full range of motion.

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