Lymphedema before diagnosis!

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Emjay76
Emjay76 Member Posts: 31
edited September 2014 in Lymphedema

Hi, this is quite a complicated scenario that possibly could only be understood by someone whose cancer has spread to the lymph nodes.

I have lymphedema in my right foot and ankle which coincides with the right breast possibly affected by inflammatory breast cancer. It would suggest that the "possible" IBC could have invaded my lymph nodes causing them to not work as they should and in turn causing the swelling.

My swelling in my foot has failed to respond to medication and has pitting so it's quite swollen and uncomfortable!

Has anyone had any experience with this before they had their diagnosis?

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited September 2014

    Hi MJ! Sorry no one responded to this question yesterday - it's back to school time here in the US so the boards seem sort of quiet...

    Your situation does sound unusual (which is probably why not too many of us can relate). According to "lymph philosophy" the body is drained by quadrants which means the trunk/breast is separate from a foot, even on the same side. I assume your medication was a diuretic: those are known to be ineffective in LE and can even worsen the condition by concentrating fluid and making it more difficult to remove.

    All I can say is, keep the limb elevated and drink lots of water. Hope you resolve the problem and get a confirmed diagnosis soon.

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  • Emjay76
    Emjay76 Member Posts: 31
    edited September 2014

    Thank you for the reply.

    My monsters returned to school today! Hooray!

    The LE is driving me crazy, I can barely walk at times.

    I may have read too much into the swelling being connected but i though as my lymph nodes are swollen in my neck/under arms and groin, it might be related. Long shot really but had to ask.

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  • Jennie93
    Jennie93 Member Posts: 1,018
    edited September 2014

    I can't see leg lymphedema being related to the breast cancer.  But sometimes it just happens, anywhere, for no known reason.   :-(

    Diuretics won't help and the fluid can't be drained with a needle, if it's LE. And those things can do more harm.  

    I'm sure they make compression stockings for leg LE like the sleeves for arms.  That would probably help a great deal, but probably should be professionally fitted. Can you find a LE therapist in your area?

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  • Kicks
    Kicks Member Posts: 4,131
    edited September 2014

    Your leg lymphedema could very well could be related to the extensive surgery fo gall bladder you said you had years ago.  LE can develope shortly after any surgery/trauma or many years later.  LE is not exclusive to breast cancer (with or without lymph node removal) or any type of cancer for that matter.  Any trauma (injury or surgery) can result in LE.  Men often develope leg LE after prostate surgery.  My LE Therapist sees a lot more men than women for LE.

    If you haven't seen an LE Therapist, that might be called for.  They can asesss you and educate you about LE and how to deal with/manage it - if it is LE and not from some,other cause.   All excessive swelling is not LE.  Among what they educate/teach you includes MLD (Manual Lymphatic Drainage), teach wrapping techniques and fitting for compression garments but for leg/lower extremities instead of arm.

    I have a friend who had minor, non-invasive knee surgery but developed LE a lot worse than I deal with and I had 19 pos nodes removed.

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