Breast and truncal lymphedema
I’ve move from PT for nerve impingement to lymphedema OT for breast and truncal lymphedema. My OT says she considers me Stage 0 lymphedema in my arm due to symptoms I have however I don’t have enough swelling yet in my arm. Yet.
I’m in compression bras 23/7, have multiple pads to wear in bras for additional compression, do MLD daily and OT weekly. I’m also in a compression sleeve during work and repetitive activities. It’s a lot.
So my question is…..will all this make a difference? Has anyone been stage 0 and reversed it? Because honestly so far I see no improvement. I’m feeling like lymphedema is just going to be a post treatment complication now. So frustrating.
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I wore compression garments daily and nightly for several years after the onset of my LE just after finishing chemo. (Not sure if I was Stage 0, but no more than Stage 1, I believe.) I saw a PT a few times and tried MLD on occasion. I was fanatical about the sleeve and glove because I wanted it to keep from getting worse. But it was, as you say, a lot, and I really let the MLD go. But then, at the recommendation of my breast surgeon around 4 years out, I weaned myself off daily use and stepped down to wearing the sleeve and glove only when I flew, during repetitive motion like exercise, or when the weather was hot and humid. Otherwise, I go "au naturel" and things are good - no progession that I can tell although sometimes I get some temporary extra swelling that does go down after a few hours. And I feel SO much better! Still keeping an eye on it because I know it will never be "cured," but it's quite manageable. Good luck!
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thank you. @piperkay, I’m sorry you’ve “been there, done that” also, but so glad to know it’s become manageable for you. I’m trying not to be frustrated but holy cow it feels never ending. And really I guess it kind of is. On the up side it has made me pay attention to the subtle cues my body gives and just be diligent of taking good care of myself. With summer coming, I am nervous about how my body will respond to the heat but we’ll see.
Thank you again, I truly appreciate your insight. ❤️0 -
Hi @nope123, I have breast lymphedema which has improved some after five years. I still do MLD and the OT exercises I was shown but could not tolerate compression garments because of radiation nerve damage. After rads my affected breast was larger than the other but now they are close in size. The lumpectomy breast was smaller than the other right after surgery but I never had the proposed nip and tuck on the other side because of LE. I take all possible precautions not to injure my right arm but don't use a compression glove.
I'm in a lymphedema clinical trial so my arm is measured by two methods every six months. Each time I have been told it is a tiny bit worse but I haven't reached stage 1 yet and hope I never will. All the best for avoiding arm progression.
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Hi @maggie15 thanks for the info. Glad you’re in a trial with regular follow up, and glad for improvements for you. I’m sorry you have nerve damage. PT did help me regain my range of motion thankfully. The compression is not fun, for sure. After wearing a new sleeve yesterday, 20-30 pressure, my arm felt better after a 10 hour shift at work. Not sure what that means but have OT today so will discuss. I too keep up with whatever exercises they advise to do.
Thanks again for your insight. Truly appreciate you. ❤️1 -
nope123, I also ended up with mild truncal lymphedema. I'm with piperkay. At first, I was vigilant about daily massage, and this might have helped keep it in check - but now only when I've overdone it. More than five years out, I continue to wear a compression bra every day, and do have some swelling when I don't. I am also careful to keep doing weight bearing exercise, as research shows this helps keep it from progressing (and my lymphedema arm is definitely weaker and requires work it to keep up strength.) As for the sleeve, like you, I wear it on flights and any time I know I will be doing anything repetitive or strenuous.
My advice is to keep up with the massage and wearing the bra and sleeve if that is what your therapist recommends. And perhaps, like piperkay, your can wean yourself off compression with time. But for now, I'd say try and pay attention to what your body is telling you. Do you notice a feeling of fullness after certain activities? Eventually maybe try some less strenuous activities without the sleeve and see how your body reacts. But, by all means, follow your therapist's advice and don't overdo it.
Above all, know that eventually this will become a routine part of your life. Certainly not one you wished for, but one I hope you will find easier with time!
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Thank you @ratherbesailing for the insight. I’m grateful to hear from women who understand and are willing to share their wisdom. Truly, thank you.
My OT moved me up to a 20-30 compression sleeve as I was still have aching and heaviness in the 15-20. I hate to say it, but my arm feels better in the 20-30. If I’m not wearing the sleeve and I do strenuous or repetitive activity, my arm aches, and is heavy at times. Sigh.
With summer and heat and humidity coming, my goal is to keep up with everything I’m doing in the hopes my arm doesn’t swell.
All this compression stuff is annoying in the heat! lol!Thank you again. ❤️
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