Breast Lymphedema and Cycling - need tips from Cyclists!

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leighseattle
leighseattle Member Posts: 14
edited June 2014 in Lymphedema

Hello.  I was stage 2B lobular with DCIS.  2 surgeries (with cording), Chemo and Radiation - treatment ended August 2012.  I developed lymphedema in the breast in November.  There is no swelling in the arm.  I currently control it with massage, a compression bra and a jovi pad at night.

Before treatment I was a serious cyclist - as in biked across the US and would do multi-day endurance bike rides.  I would like to work back up to that.  I've been on the indoor trainer this winter building endurance.  I went on a bike ride 10 days ago that was - admittedly - probably too strenous - and the lymphedema flared up and took 4 days to subside.  It's frustrating.

I'm looking for tips from other cyclists on what has worked for them to get back in the saddle.  A strength or cycle training program that worked?  Someone with expertise who has trained/advised breast cancer patients experiencing this problem who I can consult with.  A particular compression garment that was effective?  Repositioning the bike?  Whatever worked for you.

I really don't want to let this end one activity I love.  I am willing to work at this slowly and carefully to get my strength back to be able to do this.  Thanks for your help.  Leigh

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited April 2013

    We indeed do have long distance cyclists here on the threads. I think Nordy cycles. Search her name or cycling and see what you come up with while you are waiting for replies.



    We have a exercise thread you may want to join. Everyone goes at their own pace and we always could use encouragement. We are very supportive with tips etc. You have come to the right place to manage the nasty LE beast. Ask any questions and visit the site some of the girls created. www.stepup-speakout.org. Exceptional information there.

    Welcome to your new friends!

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  • leighseattle
    leighseattle Member Posts: 14
    edited April 2013

    Thank you.  I will check those out.  

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited April 2013

    Leighseattle. Some of the girls have posted bike tips on the kickbutt thread. If you reply back in that thread you may get more info. rather than here. It is a very active thread.

    You should wear a glove or at least a gauntlet and a sleeve considering you will have your arms in the down position for a long time. A self MLD before you start biking would clear your drains also which is good. One girl suggested pumping your fist straight up in the air. Do 25 times slowly to help drive the fluid down your arm while exercising or biking. You may want to do this frequent, Try every half hour seeing that your arms are down and supporting your weight.  Do post and let us know how it is going. A underarmour mens tee in a size smaller than what you wear is in order to keep breast Le in check, truncal too.

    Biking is fun for sure.

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  • Marple
    Marple Member Posts: 19,143
    edited April 2013

    I had my handle bars changed so I am sitting up straight and not leaning on my arms.

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited April 2013

    Maple, Yes that is a great idea. That is why a cruiser bike is so much better but not good for Leighs type of biking. Carol had her bars modified also.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2013

    I'm a lifetimer - running and cycling. I have chest and arm lymphedema. I don't let it stop me! I've got my sleeve, gauntlet, and a bra I have found works for me going and I'm rolling it out strong. I run to get on the podium - so like you, I take athletics seriously. I love the Wacoal bralette. They have it at Saks online for $34. I do my daily self care routine and stick to my eating program 80% of the time and I'm doing OK. I find my lymphedema is BETTER the day after riding. Right now my Johnny G Spin Bike is my friend. I just bought a new runner's GPS to excite me to get back on the road. I'm running the Rocky steps at the Philadephia museum on my business trip next week. I'm not me without high end athletics so I must do it because I can! In the height of chemo I was doing 2 hour rides on the spin bike. Although some advised against it...I know ME!

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  • leighseattle
    leighseattle Member Posts: 14
    edited April 2013

    Thanks for those tips.  I ordered a compression athletic shirt to wear over my bra ... it's supposed to wick and breathe and all that so I'll see how it works and report back.  I was wondering if I might be able to adjust my bike fit some to take a little weight off my arms without being too upright ... There is a balance there.  I like the idea of pumping my fist, too.  That feels like the right idea when riding ... elevate and move it.

    I just got back from a 30 mile ride ... I went further than I meant to and got so paranoid on the way back I kept looking at my hand and shaking out my arm expecting it to blow up at any second.  I wonder if riding will every be effortless and carefree again?  I suspect not ... so will settle for hoping it's possible.    

    Thanks, ladies.  And the Step Up Speak Out site is terrific - thanks to those who put that together.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2013

    I have accepted and do wear the sleeve and glove during my workouts. I have very mild arm lymphedema, but I don't want it to get worse and I don't want to get it in the hand. I will be in the saddle tonight as well. Nicely done!!

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited April 2013

    The underarmour tee needs to be COMPRESSION not any other type. It has the best holding in. Wear inside out if seams bother you. See if the bra is causing swell. You could try just the underarmour tee or change bra if you get pain or swell in your trunk. Experiment. 

    Don't shake it out downwards, Don't want to encourage fluid to flow down into hand.  Keep arm straight high up when pumping. Maybe just stick to pumping fist up high.

    Marie, You are a lot of info! So glad you have adapted to LE life and living to fullest.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2013

    I rode my spinning bike last night for 75 minutes with sleeve and glove. I am still "coming back" and it isn't easy. No question now - my arm and chest swelling are less the day after intense cardio when I wear the Wacoal sports bralette. It holds in my chest with compression really well but doesn't have a tight band below the chest. It just fits me right.

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  • leighseattle
    leighseattle Member Posts: 14
    edited April 2013

    I just ordered two of the Wacoal bralettes ... to check them out.  Thanks for the tip.  Also ordered a long sleeve and short sleeve compression tops to try them from 2xc - they have women specific fits which seems better than a man's top though these are pricey.  

    Definitely some swelling after yesterday's ride, but I put a sports bra on over my compression bra and maybe that helped ... less swelling than the last time.  Though I'm not sure if the band isn't restricting the nodes below the breasts.  I also have set up an appointment with a Pt bike fitter in Seattle who is excellent.  He says what I (we) are trying to do is pioneering (his word) and there is very little out there on it.  (No kidding).  So it will take trial and error most likely but he is willing to help.  But some minor bike adjustments that take some weight off the arms and make sure the nodes under the chest and groin arent compressed seems like part of the solution.  With the right compression magic combo.  

    I'll let you know what I learn as I go ...

    Thanks

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2013

    Thanks. My boyfriend was a bike fitter for many years. He is convinced I should have my handle bars higher than I like but it is only intuition. So for now I have left them where they are. I am definitely curious about anything you learn. My lymph nodes are also sore to the touch as is my chest. Seeing my cancer surgeon today.

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

    Leigh, the kind of chest compression that works best for each individual can be a real journey of discovery!Tongue Out Check out all the options on the StepUp-SpeakOut garments pages so you know what kinds of options you have. Some of us find Swell Spots especially helpful for specific locations.  Just depends so much on individual needs.

    Here are some previous comments from this forum that I'd copied off earlier regarding bike riding and LE. Maybe they'll help:

    Kriserts:
    I'm going to weigh in on aero bars. Doesn't sound like a great idea to me. In bars you're putting all the weight on your forearm. More weight then is normal. Without them, there may be weight on your hand, but you can remind yourself to relax your grip and shift your weight to your other hand.

    More amateur cyclists, and the non-riding public think that bars  are for comfort and give you a great way to relax during a ride. That's not their purpose. Aero bars are for going really hard and fast in a time trial. The position is fairly uncomfortable. If you're not racing in a time trial, or not training for a time trial, you don't need them. They are really for high-performance and not at all for comfort.

    There are three hand positions on a road bike: in the drops, on the brake hoods, and on the top bar. The top bar is the most comfortable, relaxed position. On a long ride you want to be able to alternate between all three. Aero bars eliminate the top bar position and make the other positions more awkward. Plus, they put extra weight over the front wheel, which is the most unstable area of a bike, and make the handling twitchy and unstable.

    But for the discussion of lymphedema, my opinion is that they're the wrong solution, because of the extra weight on your arm.

    Nordy:
    I agree about the tri bars not being very good for lymphedema - all that weight in a dependent position all the time. And if someone is not used to changing position from that tuck - it could easily cause imbalance and potential crashing! Yikes! I love being able to change position whenever I want... and the tri's I do are only sprints (& I am not exactly a top 10 finisher... LOL) - so I am not in the saddle long enough for it to really matter - in that case I just stay in the drops if I need to be tucked.

    Nibbana (I think):
    I seem to recall reading a thread on competitive cycling that said wear your sleeve, and pump your fist in the air if symptoms start occuring.

    I'm a casual cyclist, but seems keeping the pressure off the arms as much as possible would help. So aero bars could be a disadvantage.

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  • leighseattle
    leighseattle Member Posts: 14
    edited April 2013

    Thanks, Binney.  I was reading those threads earlier this week and agree that aerobars are not the right solution - I've used them before for racing and while they offer an alternative arm position that can help relieve pressure on hands during long rides they aren't suitable for your primary bike fit.  And I checked out the step up website and chest compression options on hugs4u recommendation ... that's a great resource.  Hopefully I won't have to deplete my pocketbook too much finding the right magic combo but I'm happy to know there are so many options.  Many more than I found on my own.

    MariaSnow I found I was having less trouble on the computrainer than I am on the road now.  I think because you can sit up and cheat on the computrainer and you can't on the road.  The intensity of the workout on the road and the trainer is comparable.  Which makes me think it's as much (or more) about the position on the bike and/or the pounding of the road/engagement of your arm/chest as it is the general aerobic exertion.  Just a theory.  

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