Question about preventing lymphedema

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alycallie
alycallie Member Posts: 32
edited June 2014 in Lymphedema

Hello everyone,

I had a modified radical mastectomy and axillary lymph node dissection (removed 35 and 16 were positive) on February 7th,2014. I had drains removed 2 weeks after surgery and started chemo the next Monday. I have been trying to do my exercises and still have some swelling, tenderness and numbness under my arm and down towards elbow. 10 days after my surgery I saw a physical therapist and was given a sleeve and glove. She told me to wear it when flying and exercising. Should I be wearing it more often? Does the number of nodes removed increase my chance of getting lymphedema? Is there anything else I can do to prevent it? Will the numbness ever go away? Thanks in advance for any help you can give me!

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  • mary625
    mary625 Member Posts: 1,056
    edited March 2014

    I developed lymphedema and the only sign I had during the time period that you are in is cording.  I had a tightness like a cord between various lymph nodes that had to be broken by the physical therapist.  I then developed lymphedema rather slowly.  It was not detectable for about 6 months and really did not rear its ugly head for 18 months or so.  I don't know what to tell you to do about it except that it is good that you are already in the hands of the physical therapist.  Re; the numbness in the armpit and back triceps area--I still have it.  It's my understanding that most times the surgeon cannot avoid severing the nerves that serve that area.  I don't think real feeling in that area is going to come back for me, but it doesn't bother me too much.  

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  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited March 2014

    I got a sleeve when I was diagnosed, and like you, I was very interested in how to minimize my risk of getting LE.  I keeps sleeve and glove in my car and at home, and over the years, I've had a few times where my arm just didn't feel right and I'd pop it on for a few hours.  Otherwise, I only wear the sleeve to fly.  I think it is good practice to know how to do lymphatic drainage exercises, and to pop on that sleeve when your arm just doesn't feel right.  I am a runner and exerciser, and I used to wear it then.  I talked to some gals on this site that didn't who we're doing fine, so I stopped that.  

    I remember the numbness, but it did go away after a few months.  Good luck to you as you try to figure out what works for you.

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  • alycallie
    alycallie Member Posts: 32
    edited March 2014

    Thank you spunky girl!

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  • juneping
    juneping Member Posts: 1,594
    edited March 2014

    I had the surgery back in December and also had the numbness from arm pit to elbow. The numbness at the arm is gone now and there is still a little at the armpit. My MO told me I'll always feel the tightness at the armpit. I just need to stretch.

    I don't wear my sleeve when I exercise. Only when I fly. 

    Mary - what is cording? Do you mind telling us more about it?

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

    Hi, Alycallie. All good questions! Here's some information about lymphedema risk reduction:

    http://www.stepup-speakout.org/riskreduction_for_l...

    Generally the number of lymph nodes removed is correlated to the risk of lymphedema, but actually some of us with only one node removed (or even with prophylactic mastectomy and no nodes purposely removed) may develop lymphedema as well. Recent research indicates that some of us have robust lymph systems to start with, others not so much, and that plays an important role in the development of lymphedema. Unfortunately, we don't currently test for that, so it would be impossible to say what any person's actual risk might be. Obesity seems to be a factor, as well as age and a history of previous trauma to the breast/chest area.

    In other words, we're all at risk, so some simple life-style changes can be a wise way to lower the risk.

    As some have already suggested, the numbness on the inside of the upper arm is common following surgery and doesn't seem to have anything to do with lymphedema development.

    The sleeve and glove should fit you well in order to be effective. You can check that out here:
    http://www.stepup-speakout.org/proper_fitting_of_l…
    Exercise and travel are two good times to use them, or any time you're doing unusual activities (like moving furniture, for instance).  

    Hoping you never join our "swell" sorority! Be well,
    Binney

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  • globalgal19
    globalgal19 Member Posts: 62
    edited March 2014

    I use my sleeve for all flying, and when I work out at the gym. Had not thought of wearing it for other activity.  Good to know.  I was told it didn't matter how many nodes were removed. I had 7 out.

    Had my MX on May 29, 2013.  I'm just now beginning to feel more, but not completely, under my arm.  At first the best way to describe it would be to say it felt like  a huge piece of cardboard was under my skin.  I don't have 100% of the feeling back under my arm (from arm pit nearly to my waist), but it doesn't get in the way of life.  Perhaps I have 50% back now.

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  • LymphActivist
    LymphActivist Member Posts: 64
    edited March 2014

    Recent studies suggest that lymphedema can be retarded and perhaps prevented if treatment is started early enough. Stout Gergich et al Cancer 2008;112:2809–19. showed that wearing a compression sleeve when the arm exhibited a very small swelling (3% excess fluid) could prevent further growth and possible prevention of the fibrosis and fatty tissue generation that typify the later stages of lymphedema. And Zimmermann, et al Lymphology 45 (2012) 103-112 demonstrated that manual lymph drainage started as early as 2 days after surgery and continued for six months prevented any swelling.

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