Can LE "go away?"

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karody
karody Member Posts: 89
edited June 2014 in Lymphedema

Had my first bout with LE this summer, 3 1/2 years after bilateral mastectomy and right axillary lymph node removal.  I am very fit and extremely active.  Every single thing I do involves lifting and I work outside a lot.  So it was a big deal to me as it could end up getting in the way of the way I live my life.  I went to therapy, learned the massage techniques and was fitted with a sleeve.  Since then, my edema has gone way down and my right arm is almost indistinguishable from my left, except to me.  I hardly ever wear the sleeve right now because it seems pointless.  Should I be wearing it even when I am not having trouble.  Or should I just put it on when I compete in my athletic events?  Is it possible that my trouble with LE will not return?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2013

    Oh karody we ALL LOVE TO HEAR STORIES LIKE YOURS!!!! How encouraging. I guess its possible that something can set it off again, as we all also know the golden rule.... any nodes out and youre at risk for the rest of your life. It is that simple. That said, you know your body and capabilities. You seem to be doing very well, and with the right precautions and as long as youre vigilant against the well known caveats theres no reason for LE to affect your life too much.



    All the best.

  • Moderators
    Moderators Member Posts: 25,912
    edited September 2013

    Hi Karody!

    In our "Lymphedema" section you can find reliable information about this side effect, and also health professionals's answers to similar questions than yours, that you may find interesting to read. Follow this link for more info about the Ask-the-Expert Conferences on Arm Lymphedema: http://www.breastcancer.org/treatment/lymphedema/ask_expert/2008_04/question_15

    Hope you find it helpful.

    The Mods

  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2013

    Karody, catching it early and getting good treatment right away can make lymphedema much easier to manage. There are several women here who use their garments only for exercise, travel, and any unusual activities, and they do just fine.

    Since the cause of the lymphedema remains, so does the risk that it will be triggered again at some time in the future. If so, act promptly and hopefully you'll have the same great results!Cool

    A couple of thoughts: Lymphedema can worsen and yet be difficult or impossible to detect, so an annual thorough re-measurement by your therapist can help head off creeping progression. S/he should be recording volumes from arm measurements, so will be able to compare on an on-going basis. S/he can also detect by examination any of the fibrotic changes that are typical of lymphedema progression, and put you on a more rigorous treatment plan to get things back in control.

    Practicing the massage, even if you're not using it regularly, will make it possible for you to remember how to do it effectively when a flare-up occurs--much better than struggling to re-learn when you're dealing with an already frustrating situation.

    The node clearing in neck, shoulder, axilla and groin that you were taught as the first (and likely the last) steps in lymphatic massage are the biggest help in keeping a compromised lymph system functioning, so you might want to make that a part of your daily routine. In the morning, say, before getting out of bed. I like to do it before any strenuous exercise as well. Just makes good sense.

    Check the fit of your sleeve and glove or gauntlet regularly, so when you need it, it'll be ready for you. Replace it as needed.

    Stay well hydrated, especially when active. One of the most common ways to trigger a serious lymphedema progression is infection, so avoid bug bites and burns, and tend to any nicks and scratches promptly.

    All good! Be well,Binney

  • Kicks
    Kicks Member Posts: 4,131
    edited September 2013

    We are each very unique so there is NO "One Size Fits All" when dealing with our LE!

    I've been dealing with LE since 1/2010 and it does not stop me from doing anything I what to do.  I am also a very active/'outdoor' woman (albeit older).  I garden, mow several yards with my push mower, bike, ride/care for my horses, fish/flyfish (right handed and LE is right arm), boat - basically anything and everything that's fun.  I do the best with my LE during the summer as I'm more active then as our winters are brutal and I can't get outside as much to do 'stuff' (other than horse care).  I wear my day sleeves/gloves basically all day every day and my night sleeve every night.  I also use my FlexiTouch machine almost daily.  I am encouraged by my DRs and my CLE Guy to do anything and as much as I want to do.  As soon as my eye surgeon give me the OK (retina detached), I'm starting working with a personal trainer for the winter to be more physically active in the nice warm gym during the 'hibernation time'. 

    I do realize that not everyone can due to each of us being the unique person we are.   Also not everyone has ever been an active outdoor person to begin with so would not be fun for some.  Point is LE does not stop everyone from continuing to live life to the fullest.

    Point to remember - while it doesn't usually happen - LE can develope after any surgery even if no nodes are removed.

  • karody
    karody Member Posts: 89
    edited September 2013

    Thanks, everybody for your insight.  Kicks, thank you so much for your encouragement!  It sounds like you like to do all the things I do- I am an obsessive gardener and I am a horse girl, too!  In fact, that is my athletic thing, I rodeo and run barrels.  It is so much a part of my identity.  I usually take all of this medical stuff in stride, but when I looked down at my swollen arm this summer and thought of what really bad cases of LE look like, my gut wrenching realization that it could really inhibit my ability to run barrels sent me into a real pity party.  But now, it looks so good, I haven't even been wearing my sleeve....so I am just wondering if that is foolish.  Because I will do ANYTHING it takes to get to keep running barrels.  So I will take it day by day and get used to checking in with my right arm every day :)

  • bhd1
    bhd1 Member Posts: 3,874
    edited September 2013

    I too am very active and fit. My le is very new (aug) and not too bad. Once in awhile if if I am very tired I skip the night garment. But i am exercising everyday! at the gym , golfing and or walking. Therefore I wear the sleeve.

  • Kicks
    Kicks Member Posts: 4,131
    edited September 2013

    karody - So you're a 'can chaser'! Fantastic - I do envy in a way those who do but other than a short time in my late teens I haven't (bad accident where I almost lost my gelding in a really bad fall around the last can). After that I got into jumpers (not hunters - there is a big difference). Then added Dressage and CT. Not to forget time as a back country guide. Today, I no longer compete seriously - haven't for quite a few years. I do continue to work (mostly dressage but do pop fences sometimes) as if I was but also enjoy just riding a lot.

    My horses have been my strength through out my life when times were 'hard'.

  • karody
    karody Member Posts: 89
    edited October 2013

    Me too! I do get so much strength from them.  Last night I went to a barrel racing and placed in the top division with both of my horses.  So that has me feeling that a return to my previous level of competitiveness is a possibility :).  And, still my arm is giving me no trouble at all- no swelling.  So when I had all of the pitting edema this summer, I thought that is how LE would always be.  But it turns out it can get better, then, I suppose show up unexpectedly another season, too.

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