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Guidelines on Exercise For Those With/At Risk for Lymphedema

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NatsFan
NatsFan Member Posts: 1,927
edited September 2018 in Working on Your Fitness

One of the most common questions asked is about how those of us who had any nodes removed can exercise safely now that we have lymphedema or are at increased risk for LE. 

Stepup-Speakout.org, an amazing website about all things lymphedema has added two new exciting exercise resources.  Here are the links.

stepup-speakout.org/Handout%20...

stepup-speakout.org/Trainer%20...

These links take you to downloadable, printable PDF documents.

The first link is for anyone with or at risk of LE who needs some quick guidelines on safe exercise. Even if you only had a single node removed, you are at an increased risk for LE, so a lot of us need to know this information.  If you want to start or resume your exercise program, this documents can give you some helpful ideas about exercising safely.  Also, we hope that fitness professionals might find this document useful to give to clients who are b/c survivors. 

The second document is designed for exercise professionals like personal trainers, yoga instructors, fitness class teachers, Pilates instructors, etc.  It explains Breast Cancer Related Lymphedema, and is designed to help all of them understand LE and what they need to know to provide safe exercise instruction and coaching for those of us with, and at risk for, LE.  The idea is that when we start a new fitness class or start working with a personal trainer, we can print out this document and share it with them.  That way they'll be aware of our concerns and the extra care we need to take.  They'll be better understand why we may avoid certain exercise moves and can give us alternate moves, or why we need to go especially slowly with upper body weight training exercises.  It will help them help us.

As you may know, the Step Up Speak Out website was the brainchild of several women here on BCO who post on the LE thread.  At the time they were diagnosed with LE, there was little info available on the web about LE and many surgeons know little about LE.  Those women designed the site to provide complete documented LE information for those of us who have LE or are at risk for LE.  

These new documents are based on research + common sense where research was not available. They were researched and written by several women who post on BCO regularly.  Carol57 was an absolute dynamo and did the bulk of the writing, but wanted to give thanks to many in the BCO community who helped, with special thanks to badger, joyh1109, nitocris, binney4, and onebadboob. (I also helped a bit. Cool )  Also, Dr. Andrea Cheville weighed in with some very helpful insights.

I'd recommend that anyone who has or is at risk for LE take a look at both documents to get some solid information about exercising safely.  Obviously these documents can't take the place of medical advice, but they can provide some guidelines for those who want to exercise but just don't know how to get started safely. 

There's no reason that fear of LE should keep any of us from starting or resuming a rigorous full exercise program.  Studies have shown over and over again that one of the best ways to prevent b/c recurrence is to exercise regularly.  I hope that these documents will give those who have or are at risk for LE the information they need to integrate a safe, effective, regular exercise program into their daily lives. 

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Comments

  • rozem
    rozem Member Posts: 749
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    thanks so much to all you wonderful ladies for putting this together!  i plan on giving my PT a copy since there is so much conflicting info

  • badger
    badger Member Posts: 24,938
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    Thanks to everyone who worked on this project.  My part was small but I'm glad I could help.  These papers are well-researched, well-written, and easy to read.  I hope they get out far and wide. 

  • badger
    badger Member Posts: 24,938
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    bumping this thread into active topics.  Cool 

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 263
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    This is great.

    I'm a runner and always wear a sleeve and glove when I run (I have mild LE) including races, and everyone thinks its some kind of running enhancement.  I've been asked by other runners how they can get those things.  (First, you find a lump.  After freaking out, you see your doctor, have a biopsy, freak out some more, find out you have cancer, and freak out even more. . . .)

  • badger
    badger Member Posts: 24,938
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    bump  Cool

  • timbek2
    timbek2 Member Posts: 64
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    Can't thank u enough for posting this!!! I'm nearing treatment end and wanting to ease back into exercise. Sort of afraid not knowing what could trigger lymphedema. This is soooooo helpful!!!'

  • NatsFan
    NatsFan Member Posts: 1,927
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    I went to a hula hoop fitness class demo today - it's not just hooping but has a lot of upper body work with the hula hoop.  I just printed out the LE for Trainer document, and got there a few minutes early.  I introduced myself, handed the document to the instructor, and briefly said that I might not be doing all the upper body work and may need alternate moves, and this document will explain more fully.  Done!  I didn't have to take up a lot of her time with explanations, and she can take it home and read it at her leisure and refer to it later as needed.  It was perfect!

  • fredntan
    fredntan Member Posts: 237
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    I have question for you guys. I have been going to gym since sept. slowly building my way back mainly with the bouncy eliptical. I can do 40 min on it now. have done some yoga/pilates classes. I tell the teachers my limitations, and I don't do the stuff with the arms that I can't do yet.

    I am not wearing my sleeves yet. maybe I should.

    But this week, I went to a training session with my sister. she hired a trainer. I've never used one. I just think of my MO to get me motivated to go. But she did make me do things I wouldn't have done on my own. But I can barely move, its been three days.

    but I'm not sure if I should cont with her. they do have a trainer her at gym that is supposidly the mastectomy expert. not sure what her qualifications are.  I really don't want to pay someone 60/hr for training. I am also thinking hey if they can be trainers, why not me? I am trying to increase my time at gym and be there a lot.

    I briefly looked into how to become trainer. guess I should probably work with one some before . my bad arm/boob does hurt more since that big exercise session. no sign of LE

  • carol57
    carol57 Member Posts: 1,550
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    fredntan, not being able to move a few days after exercise raises a red flag for me! Your node removal side is of course at risk of LE, and unfortunately pain signals the lymphatic system to send more lymph to the rescue, so it's best to avoid pain from exercise to avoid overloading the lymphatics. Maybe give the trainer in question a copy of the exercise handout NatsFan linked to at the top of the thread?

    And...why NOT become a trainer!!! It's surely not an overnight achievement, but if you can do it, what a great way to help others even as you help yourself in so many ways.

    Carol

  • badger
    badger Member Posts: 24,938
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    bump Cool

  • Lettaglz1
    Lettaglz1 Member Posts: 3
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    Great info. Thanks to all for putting it together. I have mild-moderate lymphedema and always wear my sleeve and gloves when sleeping or traveling. I've been having swelling in my hands (both???) for a few weeks now. Not sure what that's about, since only right-side nodes were removed.

  • badger
    badger Member Posts: 24,938
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    bump Cool

  • sciencegal
    sciencegal Member Posts: 546
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    Thank you for this great info - I am a "newbie" to the thread, just recovering from left mastectomy and having 24 lymph nodes removed. I am very fearful of edema since, when my aunt had breast cancer treatment, her arm was swollen to a size that she could not even use it. With our similar genes, I want to be as proactive as I can.



    I have been doing the prescribed range-of-motion exercises since surgery and am just getting back to slowly starting additional workouts, as my surgical drain just came out. This info is great.



    In addition, does anyone have a link to the proper method for massaging out some of the lymph fluid in the arm? I cant seem to find a good one.



    Thanks again!!!

  • NatsFan
    NatsFan Member Posts: 1,927
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    Science - manual lymph drainage massage needs to be taught to you by a qualified lymphedema therapist.  There are you tube videos on the topic, but they're better as a reminder and should not be used to learn MLD from scratch.  Unfortunately with LE, doing MLD improperly could actually trigger LE or worsen an existing case.  Talk to your surgeon about getting a scrip for a consultation with a certified lymphedema therapist (CLT).  The CLT will take measurements, evaluate you for your risk, teach you risk reduction measures, and if appropriate for your case, get you fitted for a compression sleeve and gauntlet. 

    You're very smart to be proactive about LE.  My aunt also suffered from horrible LE after a mx 40 years ago.  Unfortunately no one told me that till after I was dx with LE, and unfortunately my surgeon was not pro-active about getting me evaluated for LE and teaching me risk-reduction measures.  Don't let your surgeon or anyone else on your team minimize your risk or tell you that are overly concerned.  While most women do not get LE, with the number of nodes you had out you are at a higher risk for it.  Your gut feeling to learn all you can about it is exactly right. 

    Please be very careful about doing any exercise right after surgery.  This is one of the times when you are at most risk for triggering LE.  I  know we all want to try to get back some strength and ROM right away, but there's a safe way to do this.  A CLT can give you guidance and help you design a safe exercise program. 

    There's an excellent website, Step Up Speak Out, that has info about all things LE.  It has pictures of LE, info about how to find a CLT, and info that you can give to your medical team about LE.  Hopefully someone has already told you about risk reduction measures you need to take, such as never allowing needles, blood pressure, or IV in the at risk arm.  Also, check out the LE section of BCO.  The women who put together the SUSO website got their start here on those threads, and are very active on them.  They are an excellent source of info.

  • sciencegal
    sciencegal Member Posts: 546
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    Great advice- thank you! I see my surgeon again this week and will ask to be referred to a lymphedema therapist. I had never even been told that such therapists exist.



    Isn't it interesting how we have to be our own advocates for these things?

    Thank you for your help!

  • badger
    badger Member Posts: 24,938
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    bump it up!

  • carol57
    carol57 Member Posts: 1,550
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    badger, thanks for bumping!  We just learned that Dr. Kathleen Francis, who is an MD specializing in lymphedema diagnosis and treatment, is putting on a session for her patients, about lymphedema and exercise. And...she is including the StepUp, SpeakOut exercise handouts in her presentation materials.  One arm at a time, we WILL get the word out on how to exercise intelligently if you have, or are at risk, of lymphedema after breast cancer treatment!

  • badger
    badger Member Posts: 24,938
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    bump!  Cool

  • badger
    badger Member Posts: 24,938
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    bump it up!

  • badger
    badger Member Posts: 24,938
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    bump!  Cool

  • proudtospin
    proudtospin Member Posts: 4,671
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    afternoon all, sunny holiday weekend here

    I was at the gym this morning, my lovely trainer decided to have me use the TRX system.  I sort of freaked me out to use it as I have mild LE mostly in my boobie/truck area.  Amazingly, my arm feels fine, actually better than some days when I have been babying it.

    Not sure if anyone here has used TRX? it looks like an old swing set and you are the swing?

    I trust my guy as he is trained in working with cancer survivors and well, guess he has worked me up to it?

  • sciencegal
    sciencegal Member Posts: 546
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    That is interesting! i am just working up to using my Tony Little gazelle again- after i recover from this latest surgery that is. i was doing 5 minutes on it the week before this latest.

    For now I just got a fitbit pedometer that nags you from your pocket (through iphone). I think walking is best for me at thsi stage in the game.

    kudos for being so active and fit, proudtospin! yay.

  • proudtospin
    proudtospin Member Posts: 4,671
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    sciencegal.

    it has been 5 years and a slow recovery but honestly, proud that I did what I did on Sat

    my tummy hurt today in a good way. so guess I am working my core?
    slow and steady works

  • sciencegal
    sciencegal Member Posts: 546
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    Good for you!!! I aspire to slowly but surely get to where you are, fitness-wise. Thanks for the inspiration.

  • proudtospin
    proudtospin Member Posts: 4,671
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    the idea that I may be working my "core" actually makes me laugh!

    then again, the scale is the same but some folks have said I look like I lost weight..'

    lordie but maybe I am doing something right

  • badger
    badger Member Posts: 24,938
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    bump! Cool

  • badger
    badger Member Posts: 24,938
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    bump Cool

  • badger
    badger Member Posts: 24,938
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    bump!

  • badger
    badger Member Posts: 24,938
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    bump it up again, with thanks to the AMAZING people who put together these documents!

  • proudtospin
    proudtospin Member Posts: 4,671
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    not to forget that part of the benefits of exercise to me has always been the mental upper!  better than a pill, just as adictive but no need to stop and helps all the things that are troubling me!  Of course I do admit that I talk to myself while swimming laps but I work out the pesky details of my problems!