Flying
Comments
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I was totally uninformed about this topic. I had 9 nodes removed over a year ago with my lumpectomy. I have had no signs of lymphedema but I am getting ready to fly to Vegas in a month. The longest leg of the trip is about 4 hours in the air. Should I ask my breast center for a referral to their lymphedema clinic to get a sleeve for flying? I don't want to overkill but I also don't want to develop it later because I was ignorant. Thanks!
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Kelly, there's no consensus on wearing compression if you are at risk of lymphedema, but don't already have it. The National Lymphedema Network recommends compression while flying for those who have LE, but their advice to those at risk is to consult with a qualified lymphedema therapist to discuss the pros and cons. The NLN also suggests that if you do decide to wear preventive compression sleeve and gauntlet, they should be professionally fitted, and you should wear them several times before your trip so you are sure it fits well. If you wear a sleeve, it is recommended to also wear a gauntlet, to prevent the sleeve from pushing fluid into your hand, where it is very difficult to treat.
There is controversy about wearing compression while flying, if you don't have LE, but several of our wonderful LE experts here (Kira and Binney) have pointed out that the few studies on this topic have been so flawed as to not really qualify as real research into the question.
I fly quite often for work, and I wear a sleeve and gauntlet at least one hour prior to my first flight, and I remove them no sooner than an hour after my final flight lands. Like you, I had just a few nodes removed. I was diagnosed with LE before I noticed any swelling, although I could sure feel the LE symptoms: tingling, heaviness, aching of my upper arm. Those symptoms prompted me to get an evaluation for LE, and I was very surprised to learn that the highly accurate perometer used to measure me did find that my symptomatic arm was a little more than 10% bigger than my other arm--even though I couldn't see the swelling. So, the physician in that LE clinic diagnosed me with LE, but his position on compression was that I didn't need it, nor did I need any treatment at all for my LE. (Arrgghhh!) So off I went, and the very next week, after flying across the country, my arm swelled up! I changed LE clinics and sought proper treatment after that, of course.
The reason for recounting this story is that even though NLN tells us there's no proof that preventative compression does us any good while flying if we're not diagnosed with LE, I worry that there are women who have early LE and don't know it, and the cabin pressure change could be what triggers swelling, thereby advancing the LE from Stage 0 to Stage 1. When we've had node dissection, we have all kinds of strange sensations in the axilla and perhaps farther down the arm, so how can we expect anyone to sort out a new-to-me LE sensation from the odd sensations that we've become accustomed to, that linger after treatment?
I cringe, thinking about my poor arm, when I see an empty or partially empty water bottle during a flight--by the end of the flight, it's usually collapsed in on itself, if it's one of the less sturdy variety.
Anyway, why not ask for that referral to the LE clinic? Hopefully, they have some experienced LE therapists who can have an informed conversation with you about your concerns, and while you're there, take some baseline arm measures so that if LE ever does show up (and we hope it never ever does!) you can diagnose it easily and quickly, and get treatment as soon as possible.
What's not controversial is that you can take several steps while traveling to lower your risk: get plenty of exercise, because muscle movement promotes lymph movement; take lots of deep belly breaths; stay hydrated; and periodically make a fist, put it up in the air and pump the fist 20 times or so. For exercise, I look for opportunities to walk in the airports, being sure to use rolling luggage, keep it light, and pull it with my non-affected arm.
I hope this helps. Others will no doubt chime in with more perspectives and suggestions. Good luck in your research!
Carol
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Wow Carol, thank you for the thoughful and detailed response! I have often wondered about the sensation in my arm and even called my BS once. They kind of made me feel like I was paranoid. I will ask for the referral to the LE clinic just to be safe. I certainly don't want to end up with it if I could have prevented it.
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Kelly, DO insist on that referral! Let us know what you learn when you have a proper LE evaluation. (BSs are kinda well known for not knowing much about LE.)
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bumping
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Well I am flying out Friday, sleeve in hand. I spoke to the LE clinic and they referred me to our local Discount Drug Mart to be fit for a sleeve. My MO was willing to refer me to the clinic but I really don't have any symptoms now so I have decided to hold off. I will wear my sleeve when flying. Thanks so much for all the advice ladies! Vegas, here I come!
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Kellogs, you should always have hand coverage if using a sleeve for prophylaxis--a gauntlet is fine--when wearing a sleeve for flying, because you don't want to push the fluid into the hand--here's a great article from Andrea Cheville MD of Mayo Clinic on the subject:
http://www.lymphedivas.com/comprehensivecompression.asp
The good news is that they're relatively inexpensive. Also you should try on the sleeve/gauntlet and make sure it fits and doesn't trap fluid.
Kira
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Thanks Kira!
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I'm glad I found this thread. I'll be flying to my niece's graduation in April and had been wondering whether I needed to do anything preventive. I had several nodes removed in my SNB, haven't noticed any symptoms of LE but definitely don't want to get it. I've never been professionally evaluated, so I suppose I could have mild LE and not know it. I have an appointment with my oncologist Wednesday, and will ask for a referral to check into this further.
Would it be accurate to say that for those of us who are at risk for LE but not diagnosed, wearing a sleeve during a flight won't do any harm, and may protect us against developing LE in the future? Or are there potential dangers in wearing a sleeve when one does not have LE?
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Somewhere on the threads under flying I have posted low salt, high protein snacks for flying. check it out. A lot of the airlines don't carry low salt food. Salt is really bad for LE.
Wearing a sleeve with a gauntlet or glove is a good idea we have found. Some studies say not to though others say do. Grrrr.
Hopefully Carol will come on threads to advise. She is our flyer. -
curveball, that is a very big question! The National Lymphedema Network (NLN, kinda like the ACS of lymphedema) stops short of recommending that BC survivors with nodes removed wear a compression sleeve and gauntlet preventatively while flying. Their medical advisory committee refers to some very old and poorly designed studies of dragon boat racers who flew to Australia from Canada without sleeves and did not get LE. Well, pooh... there was not a control group, and they asked the women about any LE, instead of measuring their arms. The NLN has also printed somewhere (that I cannot find at the moment) a statement that there may be some harm from applying compression to an at-risk arm that does not yet have LE. And yet...Nicole Stout, who is a well known LE therapist and a prolific LE researcher, did a study in which she put lots of at-risk women in compression, and her conclusion was that compression is beneficial and actually reversed early-stage LE. I'm paraphrasing here, and if you need real studies to help your conversation with your onc, please PM me and we'll find a way to get them to you.
Hugz mentioned that I fly, and yes, I sure do. I have LE, which of course is different from your situation as an at-risk flyer, but in my approximately 105 or so flights each year, I cannot help but notice that water bottles that are closed tightly change their shapes quite noticeably in flight, from the changes in cabin air pressure. Looking at those bottles, I just think of my arm and all of the normal fluid within. I believe that most aircraft are pressurized to only 10,000 feet, so there is by definition less ambient pressure pushing against our skin. To me, it only makes sense that a compression sleeve and gauntlet can help to maintain pressure against the skin, and therefore against the lymphatic vessels.
I did see an online YouTube video once, where a speaker made a strong case for flying being troublesome for those with LE for all kinds or reasons that do not involve airplane cabin pressure. For example, she pointed out that when we travel, we tend to eat salty food, drink less water than we should, and carry heavy and cumbersome luggage in a most un-ergonomic fashion. Of course, she is correct on all of those counts, which does not mean that the under-pressurized cabin is NOT a risk...it just means that air travel brings a variety of risks and we need to be aware of them and take care to watch what we eat, drink, and heft.
I've gone on a bit here, sorry. My un-expert opinion is that I would not want to board an airplane without a sleeve and hand protection, with any nodes removed. Conventional wisdom among those who believe in compression during flight is to get a sleeve and gauntlet (because you need to compress your hand while wearing a sleeve, to avoid any fluid moving into the hand), make sure it is fitted professionally and that you are comfortable wearing it-so try it out well before your flight. Don the sleeve/gauntlet at least an hour before your first flight of a day, and wear it until at least an hour after ending your last flight.
Muscle movement pushes lymph through your body, so don't be a departure-gate potato...walk when you have the chance in the airport, and also get up when you can during a flight. If you are drinking enough water, you will need to walk to the potty, in any case. Put your arm up in the air every hour or so and pump your fist, which helps to stimulate lymph movement. Try to limit lifting anything heavy (yeah, right!). Watch the salt and alcohol, and drink tons of water.
I walk miles and miles in airports, checking my clothing suitcase and using a very lightweight rolling briefcase for what I cannot check. I've been known to walk up to 7 miles on a long connection (I wear a pedometer), and I swear this method helps me, possibly because it prevents me from sitting around eating salty junk! But even if you just walk ten minutes out of every hour that you are in an airport, and if you stroll the airplane aisle at least once every hour or two, you will help move the lymph.
So--here's hoping that you have a productive conversation with your onc, and that he/she is full on board with taking steps to minimize LE risks. And while we're hoping, we'll hope you never get LE and that your trip to your neice's graduation is tons of fun!
Oh, and I'll be flying in April, so if you see a gray-haired woman wearing a compression sleeve, wave...
Carol
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Hey, one more thought on the LE risk of flying. 'They' can simply not know if flying can trigger LE, because it would be irresponsible to conduct research that puts a group of at-risk women on airplanes without letting them wear compression. That's the problem with most of the dissent that exists regarding risk-reduction behaviors--researchers cannot put the control group in harm's way by say, sticking their arms in a bag of hungry mosquitos to find out if mosquito bites really can trigger LE! So the studies of LE risks from 'events' such as cuts, sunburns, insect bits and air travel are very weak studies, if they exist at all. Meanwhile, we are left to decide on our own if we want to take steps to protect ourselves, so most of us (of course) slather on the sunblock and insect repellent. It's just not that simple with the air travel question.
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@carol57, thanks for the quick and informative reply! I will ask my oncologist but I probably have to get a referral for a gauntlet/sleeve fitting session and if he won't refer I'm not quite sure what to do next. Maybe by April I would have time to get 2nd opinion/try another doc for a referral. It's a short flight, a 2 hour non-stop each way.
I have a couple of follow up questions too. Can you give me any idea what a fitting would cost if I decide I would rather do it on my own dime than take a chance on LE? Where do I find a fitter, is there a list of recommended ones on the NLN website or elsewhere? I am getting the plane ticket for free using flyer miles, so maybe that's what I'll do if not referred. Also, ballpark figure, how much does a gauntlet and sleeve cost? How much time do I need to allow to get fitted and actually acquire the sleeve/gauntlet? I assume if it's fitted it has to be custom made, right? So am I in a hurry here?
I tell ya, between the security hassle of flying and not knowing about LE I'm about ready to make this my last airline flight ever and take the train from now on!
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Curveball, the good news is that you probably do not need a custom-made sleeve or gauntlet, but to know for sure, you need someone to measure you professionally. If you cannot get a referral to a lymphedema therapist, you should be able to find out which durable medical equipment suppliers in your area work with compression garment makers. One way to start on that fact-finding mission would be to call the lymphedema therapists/clinics in your area and ask where they refer patients for compression garment fitting. Then call the suppliers you identify, and ask if you can self-refer for a fitting and to purchase a sleeve and gauntlet. They may ask you to pre-pay for the sleeve and gauntlet, but they should stand by you if for some reason the one they get for you does not fit right. Of course, clarify this ahead of time. Normally they bill insurance, but if you are not going to use insurance, these garments do not require a doctor's prescription, so it's always possible to self-purchase.
You can get a feel for styles and prices by checking the brightlifedirect.com website, where you will find lots of garment options. http://www.brightlifedirect.com/LYMPHEDEMA-PRODUCTS-Armsleeves/c133_134/index.html You'll see a link on that page for gauntlets.
One caution is that even though their catalog and website give instructions for measuring yourself, it really, truly is a better idea to get measured by someone who knows what they are doing, and preferably someone who orders regularly from a variety of sleeve makers, so they can recommend the best style and fit for you, choosing from several garment manufacturers. After you are fitted properly and know that a particular sleeve/gauntlet works for you, if you decide to get a second sleeve you can safely order by mail/Internet. Unless your size changes significantly, however, you will not likely need a second set for a long time--worn every other day, a garment should last six months (wearing two sets on alternating days, washing in between). Just flying, of course you're not going to wear a sleeve out any time soon.
It can be tempting to buy online when there are low prices --at Brightlife, for example, you can get Allegro brand sleeves for much less than big-name Jobst, Juzo, or the beautiful LympheDivas. But many of us find that the Allegro sleeve is way too long and bunches up under the armpit (not a good idea..causes a tourniquet affect). Hence the value of finding someone to professionally measure, and who knows the garments, at least when you start out.
You should be able to buy a sleeve and gauntlet for a combined $120 or so. Jobst makes a sleeve with a little less compression (15-20mmHg) but most are higher compression (20-30mmHg). The less compression is a bit more comfortable and I think it's often used as a preventative sleeve for flying--but here, it's really best if you can get advice specific to your needs, from a lymphedema therapist.
Delivery time through a dealer (not mail order) usually takes about 2 weeks for me; perhaps others will chime in with their experiences on that.
So--it's not too early to start working on this, if you're flying in April.
And I hope you're spending more time planning the fun part of your trip, than you are planning how to out-smart LE!
Carol
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@carol57, I had an appointment with my onc. today and he is going to refer me to get measured. When I told him it is only a 2 hour flight, he said, "in that case you can just use an elastic bandage". But I said I would buy a sleeve and that way have it for longer trips in the future
Oh, and I looked up the LympheDiva website and those sleeves are amazing! So picking one out will be a fun part of planning the trip. This time it's just for a weekend, so it can serve as a test drive too.
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Curveball, your onc was wrong in suggesting "in that case you can just use an elastic bandage", the bandages that are used for LE treatment may look like 'ace' bandages but they are short stretch bandages specifically made for LE treatment. Also, trying to wrap without proper instructions from the therapist and without the proper equipment could cause you to wrap too tightly and damage the LE channels.
Sheila
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curveball, ditto on lvtwoqlt's advice! The special LE bandages work differently from the ones your onc is confusing them with. The onc is making a serious mistake! Here is an excerpt from a course about lymphedema:
Bandages used for lymphedema wrapping may look like ACE bandages, but they are not the same. Lymphedema bandages are called "short stretch" bandages. They stretch when pulled, but not nearly as far as an ACE bandage stretches. This more limited stretch applies the right kind of pressure to the skin to help pump the lymph along, and it prevents the uneven binding and constricting that can happen with an ACE bandage. Short-stretch bandages are also unique in that they provide high working pressure—pressure is strong when the patient is using muscles under the bandages—but low resting pressure—pressure reduces when the arm is at rest. The bandages move lymph by exerting pressure in tandem with muscle movement, so this characteristic of short-stretch bandages is highly appropriate. Patients should never use ACE bandages for do-it-yourself treatment.
And, from stepup-speakout:
First, NEVER USE ACE BANDAGES TO WRAP FOR LYMPHEDEMA OR FOR LYMPHEDEMA PREVENTION. The outer bandages used for lymphedema wrapping may look like the ordinary ACE-type bandages available at any drug store, but they're not the same. Lymphedema bandages are called "short stretch" bandages. They'll stretch if you pull them, but not nearly as far as an ACE bandage stretches. This more limited stretch applies the right kind of pressure to your skin to help pump the lymph along, and it prevents the uneven binding and constricting that can happen with an ACE bandage.
And second, LYMPHEDEMA WRAPPING SHOULD BE TAUGHT BY A SKILLED AND EXPERIENCED THERAPIST. Much as we value the proud independence of a self-taught individualist, lymphedema bandaging in one of those skills that requires some one-on-one tutoring and supervision to learn.
Here's a link to that suso page, which you can send to your onc:
http://stepup-speakout.org/wrapping_bandaging_for_lymphedema.htm
arrgghhhhh!!!!! An onc should know better than the crappy advice he gave you!!!!
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@lvtwoqlt & carol57,
I haven't read anything on the stepup-speakout website but I was always planning to buy a sleeve. It just seems simpler and then I'll have it for future use. Maybe one of these days I will want to take a trip to the UK or New Zealand, and there will be travel in the future for more graduations (I have 2 more nieces not yet through college) and who knows, weddings etc. Anyway I think the fitter will be calling me to make an appointment and if they don't call within a week or so I will check back with onc and get their number so I can call them.
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Curveball, I need to release my pent up frustrations with LE so I will be taking those "elastic bandages" that your onc advised you to wear and will be wrapping up your onc in them and then sticking him on top of the Seattle space needle with the rest of the "docs in denial". Sheesh he gave you the worst advice and needs to go back to med sch.
The glove and sleeve is a much better choice and the girls posts above are dead on.
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Here is my two cents on the topic... I finished radiation on July 5th. Halfway through radiation it triggered truncal lymphedema so I had swelling in my chest, ever so slightly on my backside near armpits, armpits and sometime even my belly. I wear compression sleeves and gauntlets to prevent further inflammation when I fly. I flew 5 times roundtrip to the same place between August 22th - Dec 10th (3 hour flight each way). On trip 4 I could feel the fluid build up on the side I had 18 lymph nodes removed. It spread from my auxillary to my chest. There isn't anything that differentiates that flight from the others. I think the only thing that prevented the fluid from building up from traveling into my arms was the compression garments. On flight 5 I wore under armor (short sleeve) in lieu of compression bra along with my sleeves and gauntlets. I have yet to find compression bra that fits as well as the reasonably price under armor that comes in a compression fit. The bras are too short and the fluid would just get pushed to my belly. Note I still can't wear a regular bra because the bra cuts the flow of fluid and I end up with build up in my chest. 90% of the time I am wearing a loose fitting tank top and the other 10% of the time I am wearing a compression under armor shirt that has been okayed by my PT and lymphedema garment fitter. I am hoping that this type of lymphedema is temporary or easily controlled, but in the meantime the compression garments let me go about my regular life more freely without complications. The sleeves and gauntlets can be a hassle but its way better than having a bout with lymphedema.
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@hugs4u, please don't wrap my onc in an ace bandage and stick him on the Space Needle, even if his advice about LE prevention was inadequate. Being mean to him would just make it harder for him to accept that he needs to update his LE-prevention knowledge, right?
Anyway, when I think of everything oncs do remember--all the different kinds of cancer, and the treatments for each, and the potential side effects of the treatments, etc etc etc, it absolutely boggles my mind. Looking at it from the intellectual angle, I don't think I could do it, and that's to say nothing of the emotional toll--as oncs I suspect they have a lot higher percentage of their patients die while being treated by them than say orthopedists or pediatricians do. I'm pretty sure I couldn't do what they do. And the good thing is, if there are areas where an onc's info is sketchy or outdated, there is always bco to come to to find out from people who know by experience what they are talking about, and can point me in a direction where I will find better info.
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Curveball, Aw you are just so forgiving.
Ok, I will take your advice and not stick him on the space needle. I guess I am still mad at my MD who is knows about LE but still laughed in my face when I said I was concerned I would get it. I should just throw in the towel and forgive him. I just can seem to forget how stupid he made me feel for asking.Your right about BCO being a good support system. I don't know what I would have done if I didn't stumble on the website. I would have been uneducated or in denial myself. I hope all our BC sisters find this site. I am a big advocate of this site and thread.
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@hugz4u, if your onc laughed in your face for wanting to do what you could to prevent LE, then he's the one who has earned the "bandage treatment". My onc has never done that. An onc being ignorant about LE I can excuse, being ignorant and rude, not so much! I can still remember that moment of enlightenment when I heard a supposedly successful teacher/business leader belittle someone for asking a perfectly reasonable question. All of a sudden it flashed on me: he did that because the guy who asked the question has a valid point which he can't refute with reason or facts, so he uses a put-down instead. The so-called leader may have made the guy who asked the question feel stupid for the moment, but he (leader) is really the one who needs to learn a thing or two.
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Curveball,
On the URGO (UK) web site, there are two animations showing how long-stretch and short stretch bandages work. Animation is shown on legs, but you get a good idea of the compression effects of both types of bandages. (click on read more to see the animations).
http://www.urgo.co.uk/293-the-different-types-of-bandages#elastic-bandage
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Curveball,
On the URGO (UK) web site, there are two good and clear animations showing how long-stretch and short stretch bandages work. Animation is shown on legs, but you get a good idea of the compression effects of both types of bandages. (click on read more to see the animations).
http://www.urgo.co.uk/293-the-different-types-of-bandages#elastic-bandage
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Nitocris, that is a wonderful illustration! And I learned something new: I never knew I owned a body part called an 'aponeurosis' --which sounds like an emotional state, not a layer of tissue! Just looked it up, and it's flat tendons, joining muscle to other body parts. Thank you for today's lifelong learning benefit!
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Nitocris, you continue to amaze!!
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aaargh! why do I do this?!?!?!? I procrastinated on ordering the sleeve, so it didn't get here before my trip, and now I can't even find the instructions for the exercises the PT said I should do in the plane. Aaaargh! Why do I sabotage myself like this????
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Hi curveball, I'm a long time reader of this forum without posting and I'm sure someone will come on with a list of exercises for you because I have seen them here but this will finally be an excuse to come out of the woodwork and start talking.
I'm in Canada and last summer in Pathways magazine (published on behalf of the Canadian Lymphedema Framework) Janice Yurick, a PT from Edmonton, made these three suggestions for exercises when flying -- open and close your hand 10 times, turn your wrist in a circle five times in each direction, bend and straighten your elbow 10 times. Repeat these exercises every hour.
I'll be flying from the west coast to the UK next month and bought a gauntlet to go with my sleeve on Monday. I flew to France last September with just a sleeve with no problem but broke my wrist the end of November and the LE though still stage 0 has progressed some so we will see...
Kathy -
Curveball, Don't despair, Read all the posts above to get helpful hints and visit stepout-speakout.org for more travel tips.
Read the stepup site for recommendations on gloves as you might be able to get away just buying a tighter isotoner glove in a pinch befor you leave.
Please consider at least an UNDERARMOUR compression tee. It is best to buy the men's because it has a bit of a longer sleeve. It's about 35 dollars and it has to be the compression one,no other UNDERAMOUR ones. Wear one size smaller.
Put your arm straight up in the air and pump your fist slowly 20-25 times maybe once a hour but don't tire the arm. You must drink tons of water to hydrate and do deep belly breathes to stimulate your lymph system. Take many trips to the washroom to walk and you can pump fists in there too if you are shy. I would not suggest alcohol on the plane as it dehydrates. I can actually feel my arm differently after one drink at home. I indulge carefully on specials occasions though!
Before I had Le and was wary I wore sleeve and gloves and stood at the back of the plane from Vancouver to calif. but that was being over diligent maybe.
I will try and bump up my tai chi breather exercise recommended by LE therapist. You can do this everyday on your trip and in the airport to! Don't worry about people staring because you have a medical issue that you are trying to manage and that is what counts in the end.
Off the stepup website search for a LE therapist in the area you are travelling to incase you have a swelling problem. Let us know how you are doing too with a post if you wish.
kathyo. welcome to the site. Post any questions and do give us tips too. Have you joined bc lymph association? It's about the only thing out here related to lymphedema besides our therapists. I think Inspire Health in Van also has a monthly session on Le for education purposes. A RMT Lana certified therapist volunteers there. Hopefully she is still running the program. I think I am the only person on the west coast wearing LE garments. I have only seen a handful of people mostly older more than likely diagnosed once there arm became noticeably huge and then their docs clued in.
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