Bicycling with LE...need advice
Hi All,
I will be having my nodes removed and will also be having radiation to the armpit as part of my treatment. I understand my risk of getting LE is very high with that combination.
I'm an avid long-distance bicyclist and hope to get back to it after my treatment are completed. I'm thinking that riding an upright bike all day long would be just asking for trouble either in increasing the risk of developing LE or making existing LE worse.
I was wondering if anyone here was a long distance cyclist and had some thoughts on the matter. I'm thinking I might switch from an upright to a recumbent tadpole trike to minimize strain on my arm and allow me to maintain it at a higher elevation. Does that sound like a reasonable plan?
Thanks,
Kay
Comments
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Kay, try PMing Nordy, who is indeed a long-distance cyclist with LE. She doesn't post too often these days, but maybe she has an email alert on PMs and you can flag her down that way. Sometime back we had a discussion of bicycle modifications--I had mine altered to make the handlebars a bit more upright so I don't put so much weight on my arms--but we were talking mostly about leisure biking, not the serious cycling you do. But Nordy contributed and I know that she would be glad to give you her thoughts if you can catch her attention.
You are so smart to be thinking and planning on ways to reduce your LE risk. Let us know what you learn if you reach Nordy via PM, because it's a great question and I'll bet there are or will be others who would benefit from the information.
Carol -
Thanks Carol! I just private messaged Nordy. I'll post something if she contacts me. -
I did hear back from Nordy. She rides a road bike and wears her compression sleeve with bike gloves (rather than her gauntlet). She said to be careful of sunburns while riding because the inflamatory process caused by the sunburn can aggravate the LE. She also tries to move her arm around a lot and raise it up whenever she can while riding. It's good to know it can be done! -
Nordy is one terrific person! She has physical therapy expertise and has been a very generous contributor to our collective knowledge base in the past. I'm glad you reached her and can have a positive outlook on continuing to do activity that you love! -
Kay, I'm an avid cyclist. I raced for 15 years--a couple years after I had bc even--and can't live without long rides on my bike. For a couple years after treatment I didn't use a sleeve when I rode--I didn't actually realize I had lymphedema until I saw a photo of myself racing and realized one arm was bigger. A couple years ago I started wearing a sleeve on my bike. I use white sleeves on both arms because I'm hoping people will just think they're sun protectors.
I usually try to ride when it's cooler in the day, but I've done some seriously long and hard rides, including a very hilly Fondo last year, but so far the cycling has never aggravated my arm. I've never made any modifications on my bike. It probably depends on your own situation--my arm has never responded much to wrapping or anything, it's just the size it is, nothing really affects it. But if I ride without a sleeve I can feel the extra fluid moving in my arm, which kind of freaks me out, so I stick with the sleeve. -
Ksiserts...thanks for the info! That gives me hope. I like the idea of having a white sun protector on the other arm. I tend to ride in long sleeves even in the summer because I've found it's cooler than having the sun beat down on me.
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To be clear, I just use the other sleeve so my outfit looks even and so that people will think it's about sun protection . . . I believe I read somewhere that the sleeves don't offer REAL protection, so you might need to wear sunscreen underneath.
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good to know!
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Carol... You are way too sweet. Love you.
As it stands, I am currently signed up for the Seattle to Portland ride in July - 200+ miles in one day... and I am already remembering the pain from last time! I don't know what we were thinking... Add to that one of the MS 100 rides in June and it is going to make for a busy summer!Kriserts - I remember you - I hope all is well! If you lived on the other side of the US I would totally want to cycle with you - even though you would leave me in a cloud of dust...!
Simplelife - I hope you are feeling well and that your surgery went well!
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Nordy, it's incredibly helpful when people check in here and share their encouraging activity despite having LE. Your posts, Kriserts' posts, and others' have always reminded me that it's possible to find ways to do what we love. Not only do you share your enthusiasm, you've given some practical tips that are priceless. I remember specifically that you told us about a mineral-based sunblock that doesn't rely on a beaker-full of chemicals. I am in the sun constantly in summer and ran right out to find some --Jason brand, in my case--and so my skin and I owe you a debt of gratitude for that gem of a recommendation. I also had my bike stem altered after one of your posts. We get a lot of support, in so many ways, from this forum.
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Nordy, I'm delighted to know you are able to do long rides with LE. It gives me hope. I'm about 3 weeks post op from a LX and ALND. I also have to get rads to the armpit and breast for six weeks so I'm at high risk for LE. I've been thinking of switching to a recumbent for my cross country self-supported bicycle tour in hopes of either not getting LE or not aggravating it if I get it. I've been doing a lot of reading about it.
My surgery went smoothly. As expected the ALND was the harder part of the surgery and I've been having hypersensitivity on the skin on the inside of my upper arm that has been driving me nuts. Today, it seems to be a little better which delights me. I have an appointment in 2 days with my BS. I have lots of questions for her. I really want to prevent even getting LE if I possibly can.
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Prevention is key for sure. Although even those of us with us with above average knowledge of lymphedema have still ended up getting it. However, being knowledgeable will help you prevent it from exacerbating to the point that one without an understanding of lymphedema might! Keeping my fingers crossed for you - hoping all of your radiation go smoothly and that you get to do all of the things in your life that you want to do!
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Carol. .. Jason's has one of my favorite mineral sun blocks! And just think of how many fish and plants you may save when you choose minerals over chemicals! Way to go!
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Nordy, when I first tried the mineral sunblock, I was worried I'd look all white and pasty--thinking of the titanium dioxide cream I spread over my nose as a lifeguard in high school (do lifeguards still cover their noses in that white stuff?). But to my surprise, the sunblock disappears completely, but it still keeps the bad rays out. I think you said in your post about it that despite your hours on the bike, it's pretty sweatproof. I swim a lot in summer and can say it's water resistant. What a great product! And it's not just fish and plants that get protected from the chemicals...we need protection, too.
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morning everyone! i'm a huge bike rider and racer, and i was also worried about this...
in the end, i was super fortunate and had only the sentinel node biopsy, but that doesn't necessarily put me into the clear for lymphedema risk...
few thoughts, tho...
1) sun protection - if you're wearing a sleeve, you've surely got good sun protection. if you're not wearing a sleeve, consider using "arm coolers" - very thin stretchy sleeves that one can buy in many different colors. i use these much of the summer months, even when it's like 90 deg F outside. i can soak them with water, which helps with body cooling... i like them because sun screen, which can be great - don't get me wrong, interferes with the whole sweat process. when riding long and hard, one needs the whole sweat process to be working... so, i've been opting for cloth-based sunscreen in the form of arm coolers, and i've been very happy with the results.
2) position - when doing a long and challenging event, it's easy to forget to change positions... occasionally, sit up and move your arms... change your position on your bars... can you ride hands-free? if yes, then do so whenever the pace allows. if your fit causes numbness in your hands or anywhere, really, get a proper bike fit. make sure your position is not compromising your circulation.
3) hydration hydration hydration - buff said.
4) if you get into any kind of a crash - road rash must be attended to carefully and quickly. we have a bigger risk of infection and so on, even without onset of lymphedema... so, if you crash, get cleaned up asap... ICE ICE ICE!!!! and so on...
5) do self lymph massage a few times per day - especially on long endurance ride days... there are several really great youtube videos that give good instructions for self lymph massage for post-mastectomy and node dissections... i used to be quite anal about this... maybe it had the hoped-for result... or maybe i just wasn't one of the unlucky ones with regard to lymphedema - who knows... but i did self lymph massage regularly to position myself for the most success possible.
last - and most importantly - LOVE YOUR BIKE... keep it in good repair... keep a look out for wear on your tires... do your abc check before every ride... all to maximize your happiness on your bike but also prevent mechanicals that could lead to a mishap... and ride ride ride...
me? during the "on" season, i ride anywhere between ten and twenty hours a week... sometimes more... i love riding - i use bikes for recreation and transportation and hauling things and people... i also race, and i love racing... i race on road and off road... this year's new race venue for me is gravel racing... never done this, but it is HOT these days...
keep the rubber side down...
lee
ps - feel invited to pm me if you have questions... i'm happy to do my best to answer questions and so forth...
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ps - you know.... if y'all are in minnesota.. pm me... i'll hook you up with a bike... and take you for a ride... it's awesome up here.
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Thanks BikerLee for all the info and encouragement. I was looking for some youtube videos the other day, but never really found anything specific for the arm and LE. I'll look again. I would like to do daily self massage on my arm to try to help prevent LE. Congratuations on you pCR and being three years out with TNBC. That's awesome!
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We've had women post here that they were sunburned through the compression sleeve. That does seem counter-intuitive, given the thickness of the fabric, but there have been reports of it happening. I'm not sure we can take for granted that the sleeve offers sun protection.
If anyone following this thread has had a sun exposure problem through the sleeve, can you share what happened? Are you sure it was sun effects, and not something like a heat rash?
--edited to correct spelling--
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Carol, a few years ago one of our really conscientious lymphers spent an afternoon at the beach with her sleeve and had a truly disastrous sunburn. He rest of her was fine because she used sunscreen, but she assumed her arm wouldn't have a problem--ended up on antibiotics. So we contacted a few sleeve companies and asked, and they said absolutely don't use them for sun protection. A while back, though, another lympher said her particular sleeve did, in fact, leave her skin white when the rest of her tanned. So apparently some work that way, others not. I like the idea of wearing something sun-proof over the sleeve (as long as it's not adding unneeded compression). Better safe than sorry on this one.
SimpleLife, a visit to a well-qualified LE therapist to show you how to do Manual Lymph Drainage massage would be a huge help. You need a referral from any doctor on your team--even your PCP can do it.
All you bikers ROCK! Thanks for the encouragement!
Binney -
On another note. I really believe that getting sunburn on my non protected arm with no sleeve caused me to develop LE. (along with a burnt hand from a campfire at a different time) My shoulder even swelled around where my bra strap was. Thank goodness I went to my LEist asap and took care of it. I always wear a sun protective shirt over my compression sleeve now.
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Binney, thanks for adding substance to my vague recollection. When I kayak, I always wear a white sunscreen-plus-bug-repellent shirt. It can get a little warm, but better than tempting burns and bites.
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Carol I have - I burned right through my sleeves but realized it early - it can happen if you aren't careful.. I wear a loose sunscreened sport shirt over my sleeves when I am out in the sun.
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I always sunscreen my entire arm - for more than one reason. The obvious is that it can burn despite the sleeve and the other is that my cycling jersey does not necessarily overlap with my sleeve - so if there is a small area of skin that is not covered - it is prime for a burn! And that is my 2cents on sunburns... LOL. And I am glad you like the Jason's. I feel the same way about it - it does not turn me white and it works great!
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Hi everyone,
One the sleeve question, I read that the sleeve does NOT provide protection from the sun. I hate to admit this, I have fairly olive skin and I do not use a lot of sunscreen, and never on my arms under the sleeve, but I know I'm living dangerously.
I have some interesting news on this entire cycling/lymphedema issue . . . I got laid off recently and took an old friend up on his offer to come visit he and his wife in Thailand. A lot of cyclists are discovering Chiang Mai, the cycling there is fantastic--you can ride flat, hilly, mountainous, all pretty much outside your door, and there's a nice ex-pat community of cycling enthusiasts.
Before I left I was seeing my therapist because I felt my arm was getting larger. She noted my other arm was up a bit, too, and asked if I'd gained weight in general. Yes--I developed rheumatoid arthritis last summer and spent 5 months off my bike, put on some weight, then put another 5 lbs on over Christmas. A blouse that fit me in September all of a sudden was too tight for my arm. But I discounted the weight gain--the other sleeve fit, so it had to be the lymphedema, right?
Well, on to Thailand. I know my friend from my racing days and he vowed to get me in shape. We were riding 50 miles to start, then it got up to 80+ mile rides, and really, really steep. When I got there it was in the low 80's, towards the end of my trip, high 80's-low 90's. I wore my sleeve and tried to ignore the heat.
Guess what? I came home, and not only did all that cycling in the heat have no negative effect, I've dropped 10 lbs, and all of a sudden, my clothes fit in the sleeves and my arm looks so much smaller! I'm always self-conscious about it in the summer and try to wear light weight sweaters, but it's small enough now that I might dare short sleeves. It was kind of a "well, duh" moment for me. I hadn't really realized how much gaining and losing weight really affects my lymphedema.
Nordy--I did STP many years ago, but in two days. I wished I'd gone for the 1 day option. Good luck! It sounds like so much fun. If I'm ever out that way I'll look you up, it'd be fun to ride. I'm sure I wouldn't drop you at all, it sounds like you'd drop me.
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Kriserts.....I'm so excited that you were able to do so much riding in the heat and actually get better with your LE! Wow. That also goes to show that exercise, if done correctly and built up to, can also be of benefit to LE. Your post gives me so much hope that I could actually do the self-supported bike tour hubby and I were training for when I got diagnosed last summer.
Happy, happy, happy dance!!!
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SimpleLife--I'm glad my post encouraged you! I'm sure that everyone's lymphedema is different, but mine has never been made worse by cycling.
There's a blog called oneoffthebucketlist (dot) blogspot (dot) com which is the diary of a man with leg lymphedema who rode the Pacific Coast highway in 2011. If you're planning on doing a long self-supported trip, it might be interesting for you to read.
There are days when I'm riding when I'll start running through all the bad luck that's befallen me with my health--cancer, lung clots, multiple surgeries, lymphedema, now RA--and then I shake myself and go, "Wow! Look at me! All that and here I am, 53 years old, riding my bike up a mountain!"
Don't ever give up your bike, ladies. -
Kriserts - I would gladly ride with you! I am not fast, just determined. I finished this STP in one day also - in 99 degree heat. That was the biggest obstacle. It was SO blazing hot. And my arm paid for it - I finally went on my Flexi-touch last night and it is back down this morning, so I am super happy about that. I don't use my machine often, but seriously, it has saved me after a long bike ride on more than one occasion. I am glad I have it in my arsenal. And I am up too by 5# which I know does not help. We were with family on vacation for 3 weeks and not eating our normal diet - but instead eating processed food and sweets - in all I am just glad I did not gain more! Anyway, your cycling trip to Thailand sounded fabulous! I am glad you are back in the saddle!
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Wow, that sounds like a monster ride, Nordy! And in that heat, ugh. . . . I'm really happy to be back and riding my bike, thinking about doing some racing next year. I'm so glad that the fashion now is to wear white sun guards. I've had several people ask me how I like wearing sun guards--they can't tell it's compression.
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