Reconstruction possible AFTER developing truncal lymphedema?

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rosiesgirl
rosiesgirl Member Posts: 89
edited October 2015 in Lymphedema

Hello all!

I have developed truncal lymphedema following my treatment (chemo, modified radical mastectomy (unilateral), removal of 15 axiliary lymph nodes and radiation). I did not have reconstruction as part of my MRM due to my IBC diagnosis and radiation. I was planning reconstruction (probably DIEP) in about a year. Is it advisable to have reconstruction with a diagnosis of truncal lymphedema? My case is pretty bad with a lot of swelling, in the chest, axillary area and back. It is also very painful. I have been in treatment with a LE therapist for 3 weeks. Any advice/experience would be helpful! Thanks!


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  • glennie19
    glennie19 Member Posts: 6,398
    edited October 2015

    Rosie: I have no answer to your question. I would recommend finding someone who is VERY knowledgable about LE before proceeding. Most surgeons really have no idea about it. One of our members here, lago, sees a very well known LE specialist,, who I believe is in Chicago,,, don't know if that is anywhere close to you. But you may want to PM her and ask about her doctor,, perhaps you could see him for a consult,, or he could recommend someone closer to you.

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  • rosiesgirl
    rosiesgirl Member Posts: 89
    edited October 2015

    Thanks Glennie. I won't proceed with any type of reconstruction with the LE as it is. I am afraid that with it being a persistent condition that I may not be able to have reconstruction in the future. I would not be upset about not being able to have reconstruction if it weren't for the fact that I had unilateral mastectomy and don't want to go through life being this uneven. I wish at this point that I would have had bi-lateral.

    Joy

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  • Binney4
    Binney4 Member Posts: 8,609
    edited October 2015

    Hello, Joy!

    I'm really sorry for this lousy dilemma you're facing! Assuming you can get the LE under good control it would be possible to consider recon. That would not necessarily "fix" the LE, though, so you'd need to plan on on-going therapy and self-care even after the surgery.

    But oddly enough, in some cases recon does, in fact, "fix" the LE. There are a couple of theories as to why. One is that previous scar tissue that was blocking lymph flow is removed with the recon surgery. The other is that whenever there's trauma (surgical or otherwise) to our bodies, for a short period of time during the healing process they produce substances that stimulate the growth of both bood vessels and lymph vessels, so perhaps this growth factor results in new lymph channels that relieve the condition. At any rate, a certain small percentage of recon surgeries where LE is present do result in a lessening of LE or its disappearance altogether. That said, there's no way to predict whether your surgery will help or not, so best not to be counting on that.

    There's information about surgery in an area with LE on the following page--scroll down to the very last section on the page:

    http://www.stepup-speakout.org/Emergencies_and_Med...

    How's the LE therapy going? Are you finding compression garments that help with the swelling--and especially with the pain!? The gals here are all quite creative about finding ways to deal with truncal LE, so please feel free to ask if you have any questions.

    Gentle hugs--please keep us posted!
    Binney


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  • doxie
    doxie Member Posts: 1,455
    edited October 2015

    Rosiesgirl,

    You are in a bit of a pickle. I have mild truncal LE and went forward with nipple reconstruction and tattooing at the same time. Had an infection around the stitches and LE flared for a while. I'm back to normal mild LE.

    I think it's important you get your LE under control, then you have to decide whether the reconstruction is worth the risk. But like Binney wrote, well planned surgery may help you.

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