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 had a severely swollen foot and ankle on my right foot called lymphedema which coincides with the breast possibly affected by inflammatory breast cancer. It would suggest that the "possible" IBC has 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 actually got the results that they do have cancer?

Emma x

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  • LymphActivist
    LymphActivist Member Posts: 64
    edited September 2014

    I cannot diagnose you since I am not a physician and you are over 5,000 miles away, but a few comments and questions:

    Who diagnosed you with "possible inflammatory breast cancer"? Which side is affected? Have you had any nodes removed from either side?

    Your right foot and leg drain ultimately to a venous connection on the left side under your clavicle. So if there is a lymphatic obstruction on the left side it could be related to your right foot lymphedema.

    I read an interesting paper a while ago wherein the author posited that lymphedema of the breast could be a predictor of an invasive breast tumor.

    Have you seen a lymphedema therapist about your foot? A course of manual lymph drainage could be extremely comforting. It could also prevent fibrotic changes in your tissue which would make it more difficult to treat your foot in the future.

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  • Emjay76
    Emjay76 Member Posts: 31
    edited September 2014

    I will be attending the breast clinic next Friday for scan, exam and biopsy there is NO diagnosis at this time. However my GP was clear about his suspicion. I have had treatment inc antibiotics to first rule out infection but unfortunately my breast has just grown and grown and become tender, heavy and slightly itchy with a slightly inverted nipple!

    Very unfortunate as my right boob was always better looking than the left 

    The swelling has been in my foot and ankle for about 2 month, with swelling increasing and decreasing.

    If I spent 3 days in bed with my leg raised above my head height I am pretty sure I could get the swelling to go down, but then it would start up again as soon as I am mobile.

    It just seems very coincidental... My massage therapist found enlarged nodes under my arm, collar bone neck and groin in June and they have been enlarged ever since, especially my axillary glands, my arm pit is very swollen compared to the other side.

    I think I will just stay off my foot for now as much as possible and hope that my GP can find out the true cause.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2014

    Emma, please do let us know what you discover. For lymphedema, other helps include pausing throughout the day to take some deep abdominal breaths (helps stimulate the largest lymph vessel in our bodies), staying well hydrated (helps dilute the lymph fluid and keep it moving) and very gentle stretching exercises of foot, leg, hand and arm. There are other possible causes for swelling like you're experiencing, including blood clots, so you'll probably need to hold off on lymphedema "massage" (it's actually called Manual Lymphatic Drainage, or MLD) until that can be ruled out.

    Looking forward with you to only good news and a quick fix!
    Gentle hugs,
    Binney

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  • Emjay76
    Emjay76 Member Posts: 31
    edited September 2014

    Hi Binney, thank you for your reply!

    I am my own worst enemy when it comes to my health, but you know what I've NEVER been wrong about any health problems I've had.

    I don't make assumptions or jump to worst case scenario, I was perfectly ok thinking my breast problem was indeed hormonal or an infection at first, It didn't cross my mind it "could" be cancer!

    My doctors are at a total loss as to why they can't control the swelling and unfortunately I have also been suffering from swelling in my face. 

    If the swelling was bilateral it would be much easier for the doctors to make a diagnosis about the swelling. The GP did mention checking my kidneys and I know my LFT's are high but not to the point where they would think something was terribly wrong. It seems my liver has suffered damage in the past although not through drinking, but the tests show the damage is as bad as a liver belonging to an alcoholic.

    Sorry to waffle on, I'm just so fed up with the swelling now. I want it gone so at least I can get on with a normal day and do things with my children.

    I've had my foot up ALL day and it's still swollen! Hubby made me stay in bed.... Bored as hell and all for nothing!!

    Have you any other suggestions that might help?

    Emma

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