How many have LE after DEIP?

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JWoo
JWoo Member Posts: 1,171
edited June 2017 in Breast Reconstruction

Hi everyone!

I have been planning on doing DIEP recon after i get down to a healthy weight, but have experienced LE in my trunk and arms after my BMX.

I am curious to get feedback from anyone that has/had LE before/after their DIEP, and if it got worse, better, etc.

I am thinking my underarm LE will get better, but there is always that risk of getting LE in your abdomen and legs. Just not sure about real people's experiences and would love to hear from you all!

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  • JWoo
    JWoo Member Posts: 1,171
    edited March 2015

    bump

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  • JWoo
    JWoo Member Posts: 1,171
    edited May 2015

    bump

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  • NancyD
    NancyD Member Posts: 3,562
    edited May 2015

    I developed LE two years after my DIEP surgery. I can't say that surgery had anything directly to do with it. I think it was the awkward, heavy shoulder bag my company gave to me to transport my laptop. I'm pretty sure that's what set it off. The LE did not get worse once I switched to a rolling case.

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  • JWoo
    JWoo Member Posts: 1,171
    edited May 2015

    Thanks for the reply Nancy! where do you find it happens most?

    my big concern is getting it in my legs and lower trunk. I already have a doozy of a case in my upper trunk.

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  • caligirl3
    caligirl3 Member Posts: 86
    edited May 2015

    Hi JWOO,

    I don't know if it is lymph edema since many ladies who have had DIEP say they've experienced it, I have quite a bit of swelling which has gotten worse since I have become more active. It is only in my abdomen though, not chest or legs. My belly just becomes progressively harder throughout the day. It subsides overnight. My PT (who also works with lymph edema pts) gave me some breathing exercises to do and showed me how to massage the area. It's frustrating because my stomach is nice and flat in the morning then swells and becomes hard. I hope it's only temporary as my PS assures me. Other wise the DIEP was totally worth it. Great result.

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  • NancyD
    NancyD Member Posts: 3,562
    edited May 2015

    It's most apparent in my forearm. When the normal indentation on the bottom (when you bend your elbow up) disappeared...that's how I noticed it. Progressively, the back of my hand swells a bit, then I feel it in my upper arm and side just under my armpit.

    I have a bulge below my abdominal incision on the opposite side as my cancer, but my GYN thinks it is a small hernia. It doesn't pain me and never changes size, so I don't think it's lymphadema.

    I carried the laptop case on my shoulder for a month and then I noticed the swelling in my arm and hand. That's why I'm pretty sure it was what set it off.

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  • Sannoliver1
    Sannoliver1 Member Posts: 25
    edited May 2016

    bump

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  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2016

    No le but some numbness in ribs and under arms.

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  • JWoo
    JWoo Member Posts: 1,171
    edited May 2016

    Thanks for bumping this back up.

    And thank you to those that responded.

    I've not lost any weight (chemo and tamox made sure of that) but I am going ahead with my recon in August. I admit that I am quite frightened of making my LE worse and it spreading to my abdomen, but, I also have zero interest in implants, so I will just bite the bullet and post about it.

    I know how my luck is (rotten) so I am expecting the worst.

    Caligirl, sounds like LE to me, did you get any PT for it?

    Nancy, ya, sounds like that bag is what did it. My PTh was very expressive when she picked up my purse. I've had to very carefully downsize.

    Meow13, I have a lot of numbness as well. With all of the nerves they have to cut, I think that is part of everyones experience, unfortunately. It is the strangest sensation!



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  • JWoo
    JWoo Member Posts: 1,171
    edited June 2017

    Well, 7 months out from phase 2, and I can say without a doubt, my LE is WAY WORSE. It now starts in my upper thighs, and goes up to my neck. Luckily, it is not severe in its swelling, but that may change over time.

    I wish I could report differently.

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