Lymphedema after 8 years

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LanvenGM
LanvenGM Member Posts: 1
edited August 2018 in Lymphedema

I never experienced Lymphedema after treatment. I had a lumpectomy, 9 lymph nodes removed, chemo and radiation. However, I recently have been diagnosed with Lymphedema. Yes after 9 years!! I am awaiting diagnostic mammogram. I had an ultrasound to confirm no blood clots.

My left arm is 1” larger than my right. Some swelling in my left leg.

Is this normal? Is the cancer back?? Thoughts and opinions greatly appreciated

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2017

    Hi Lanven-

    We're so sorry to hear you're dealing with this! Lymphedema can develop weeks, months, and even years after you've completed treatment. We have some info on our main site that you might find helpful: http://www.breastcancer.org/treatment/side_effects.... People who have many nodes removed are at greater risk. The info on our site includes some risk factors and tips for managing the lymphedema, we hope something works for you! Please keep us posted on how the mammo goes.

    The Mods

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited October 2017

    Welcome and so sorry you find yourself here but so smart to educate your self. Le is a steep learning curve.

    You can get lymphedema (le) anytime your nodes are disrupted. You need to seek a qualified therapist to learn how to manage it and keep it from progressing and to address the leg swell question. Go to stepup-speakout.org to find a qualified therapist near by and learn more about LE. Some girls here wrote that excellent website.

    Don't know why you have leg swelling unless you had radiation/surgery/injury/ node removal from that area. Your arm and leg are different body quadrants that drain lymph separately so this sounds like two different things going on.

    Seek a doc opinion on the cancer question to get answers.

    Poke around here on the threads so you can educate your self and ask more questions.

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  • Kicks
    Kicks Member Posts: 4,131
    edited October 2017

    Your LET (LymphEdema Therapist) should be able to address your issues/questions.

    LE can develope after any surgery or traumatic injury - even years later. What are you experiencing? It is possible that more than one issue is going on as leg is also involved unless it was involved in surgery (or an injury) also.

    If you would fill in your Profile, it would help anyone replying to you by knowing,what you have been through DX, TX so far.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited October 2017

    My support group at church invited a guest speaker who was a lymphodema specialist. She told us lymphodema can indeed happen years after surgery. That was an unpleasant revelation for us. We all thought it typically happened sooner rather than later. Several ladies in our group have it. It is brutal. They are always in pain. All of those ladies had multiple nodes removed.

    Diane

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  • Binney4
    Binney4 Member Posts: 8,609
    edited October 2017

    Hi, Lanven,

    A few of us actually do have lymphedema in a leg as well as in our directly-affected arm or chest. That can happen because once lymphedema is present in any limb it can slow the transport of lymph fluid anywhere in the system, but happily few women have that happen. There was a study a few years back that showed this to be the case. Not really surprising, when you think about it, because the lymph system is, after all, a whole, interlinked system. It's possible (even probable) you have had subclinical (Stage 0) lymphedema for some time without it progressing to anything you have noticed until now. In that case a problem with your leg as well would be possible.

    Your question of the possible return of the cancer beast can only be answered by your oncologist, but from your limited description of what you're experiencing, there's no call to jump at once to that conclusion (though we all do, don't we?!!)

    Please do keep us posted on what you discover, and please let us know how we can help.

    Gentle hugs,
    Binney

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited October 2017

    Binney. Ok that lymph interlinked system makes sense to me now. I never considered a leg so far away and on seperate quadrant could be affected, is that what happened to you?

    My good therapist seems to think that I won't get le in my opposite phrophy arm but I'm not so sure about her opinion now considering I am interlinked and all breast nodes were loped off although I have axilla nodes still. It must be a small percentage though.

    Hum I'm still a newbie. Always something we can learn! Imglad Ilearn here!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited October 2017

    Hugz, yes, I have LE in one leg as well. Diagnosed a couple of years ago now. I think what I've proven beyond all doubt is that my lymph system was seriously deficient from the get-go, and breast cancer treatment didn't do it any favors. Or, as my LE therapist puts it: "I think your lymph system must have been installed upside down!"

    And yes, it's rare, thankfully. I caught the leg swelling promptly, which has made it quite easy to control. The point is to be smart and vigilant, without being a basket case about these things.

    Lenven, how're you doing? Please know you're in our thoughts.

    Gentle hugs,
    Binney

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  • fishingal68
    fishingal68 Member Posts: 56
    edited October 2017

    Hi ladies,

    I haven't had surgery yet, but LE is my biggest fear. (I have to finish chemo before my BMX). My mother had BC twice, and has to use the inflatable sleeve daily to help with her LE, but it really hasn't helped much. She had multiple lymph nodes removed in her surgeries. How many lymph nodes can safely be removed without worrying about having LE? Thanks so much for the info.

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  • sandylo
    sandylo Member Posts: 16
    edited August 2018

    I have been to my doctor today with badly swollen left leg he said it could be lymphadema from my breast cancer which was in September 2010 so yes it can go to your legs. I had blood tests today to see what it could definitely be. I had a little in my arm after my operation they said imagine a can of coke that's how much I have in my arm

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