How do you know you have LE?

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JulieMI
JulieMI Member Posts: 34
edited June 2014 in Lymphedema

This is always on my mind since I lost 18 nodes.  Every time I get a cut or a insect bite on that arm, I wonder if I have LE.

What's the first sign?  Please help me. Just arm got bigger over time?

I got a small infection on a finger right now.  I am kind of freaked out.

Julie

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

    Julie, I sure do hear you about these worries, and I'll try to help answer your question to put your mind at ease.

    First off, an infection is not the same as lymphedema, but since your lymph system has been compromised by your breast cancer treatment you'll want to watch for spread of the infection and get help if it gets out of hand. If you had lymphedema you would be at higher risk for infections, but that's not the issue you're facing at the moment. Just take care of this infection (topical antibiotic, maybe?) and keep an eye on it.

    There's information about diagnosing lymphedema here that should help you know what to look for:
    http://www.stepup-speakout.org/What_does_lymphedem...

    It's always helpful to ask any of the doctors on your team for a referral to a well-trained lymphedema therapist for an evaluation, baseline arm measurements, and personalized risk reduction tips. S/he can also answer all your question in a personalized way. Here's how to find a well-qualified therapist near you:
    http://www.stepup-speakout.org/Finding_a_Qualified...

    Hoping this infection clears up promptly and you get the information you need to put your worries to rest!

    Be well,
    Binney

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  • JulieMI
    JulieMI Member Posts: 34
    edited May 2014

    Thank you!

    I did go to therapy a couple times.  I did not officially diagnosed.  I was told to measure my arms.  But it's a hassel to do on my own.  My arms did get bigger but I gained 10 lbs, so I am not sure what's the cause.

    I think I probably need to be more on top of this.  With no discomfort, it's hard to remember the risk until I did something stupid like forgot wearing compression sleeve on a 15 hour flight.  Then, remorse and panic.

    Julie

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

    Julie, how about a medical ID bracelet to remind YOU to be careful with that arm? That really helped me when I was trying to get my mind around it all. Here are some suggestions:
    http://www.stepup-speakout.org/riskreduction_for_l...

    You might as well be kind to yourself and skip the remorse entirely.  ;-)   We all make mistakes, and the truth is that no matter how many "mistakes" we make, less than half of us breast cancer veterans will ever develop lymphedema. So do what you can, but no point letting fear ruin the golden moments.

    Gaining weight will change your arm measurements, and also the fit of any compression garments you might have, so do check the fit before using them again.

    Here's information on how garments should fit:
    http://www.stepup-speakout.org/proper_fitting_of_l...

    And if your doctors did not suggest any hand protection (compression glove or gauntlet) to wear with your sleeve, here's an article about why it's important, written by one of the leading lymphology doctors in the US:
    http://www.lymphedivas.com/handprotection.asp

    Hope some of that helps. Please feel free to ask anything here--we all sure can share the frustration of not being able to get the answers we need!

    Gentle hugs,
    Binney

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