Thinking about flying

kira66715 · August 2012

EricaMary--when you have lymphedema, some people fly wrapped, and a night garment is like wrapping--but I'd sure make sure it agrees with you before you use it when you fly.

I fly wrapped or with my night garment (which I don't tend to use much)--the night garment is easier as I put it on at the gate.

For truncal swelling, many women buy underarmour shirts, short sleeve--I hear the men's fit better--in a snug fit and wear them inside out.

There is no question that people with lymphedema should wear compression when they fly: the controversy is for people "at risk" and unfortunately, the medical studies are just plain horrible, so we just don't know, and people are different.

Personally, even before LE, my ankles would swell on an airplane.

Just talked to one of our sistah's of swell, and she didn't put on her support stocking, and she has some leg LE, because it was too hot, and was incredibly swollen for the next couple of days.

Kira

carol57 · August 2012

Ericamary, you can wear an UnderArmour compression-fit shirt. Try on both men's and women's in a sporting good store. You want a short-sleeve shirt so you don't layer sleeve compression with shirt compression. Many of us find that the women's have cap sleeves that cut into our sensitive underarms, and for me, the men's shirt has the perfect sleeve tightness--it's over the top of my sleeve, but not particularly compressive at that point, although I do get nice compression under the arm, the shoulder, the chest, back, etc. Hints are to try a size one size smaller than you usually wear, and wear it inside out to keep the seams from rubbing. I always put my compression gear on before TSA, and it's never been a problem. Sometimes at my home airport they decide to swab it for explosive residue, but most places ignore it. When I wear the UA shirt, I wear a blouse or some other shirt over top of it that will cover it completely...I don't want to invite some TSA person to suggest that I have on 'outerwear' that needs to come off, because I sure don't prefer to be seen in a glove fit, skin tight shirt! Hopefully someone using a Jovi or similar will comment on that part of your question.

SyrMom · August 2012

Dumb question time, how do you avoid going through a scanner?

LtotheK · August 2012

SyrMom, it is a performance art piece, believe me! You simply approach the scanner, and if you don't go into the metal detector (a lot of airports still have both in service), you say "I am requesting a patdown". They call "Female assist!" And then depending on how busy or jerky they are, you wait. I wait away from the scanner, as there is some question about being in range of the machine as well. Usually takes no more than an extra 5 minutes. I fly a lot. The control this gives me is psychologically very important, and perhaps important to my health, too.

barsco1963 · August 2012

Hi all - I hope that I am not imposing on this thread. I do not have lymphedema, but did have MX with AND (no chemo/no rads). I am wondering if there would be any risk if I were to fly - would be a short flight 1-1/2 hrs.

Thank you for your input.

Binney4 · August 2012

barsco, welcome! Of course you're not imposing. Smile We're all fanatics about wanting our Sistahs who are at risk to take all the precautions they can to avoid joining our Sorority of Swell. Good for you!

The bad news first: we're all at risk, and it's for life. But the good news is that there are some simple life-style changes you can make to help reduce that risk. Here's some general information about it:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

More specifically, the issue of what to do about flying can be controversial. Some people advocate using well-fitting compression garments (a sleeve and hand protection), while others argue that a poorly-fitted garment could cause more problems than it solves. Since your flight is short, you may want to avoid the controversy altogether and take other precautions. Like these:

When you're packing, be careful about lifting loaded suitcases onto the floor or into your car. Get someone to help.

Luggage with wheels is better than hefting it with your arms, but you still need to be careful with all the tugging and hefting involved in air travel (at check-in, TSA screening, boarding and deplaning, carousel pick-up).

Plan to stay VERY well hydrated--no caffeine. This helps dilute lymph fluid and keeps it moving.

Pause from time to time to take a few deep abdominal breaths. This stimulates the largest lymph vessel in your body.

Do some arm (and leg!) stretches at intervals. Don't worry about what other passengers think--you'll never see them again! Kiss Especially helpful: reaching your arm above your head and rhythmically opening and closing your fist.

At your destination, if you'll be outside, avoid both sunburn and insect bites. If you'll be engaged in unusual activities on your trip (beach volleyball? kayaking? Cool ), pay attention to your arm and stop at once if you experience aching, tingling, or tightness. Elevate your arm, and stay well hydrated.

As soon as you're able, even after your trip, ask any doctor on your team for a referral to a well-trained lymphedema therapist for evaluation, personalized risk-reduction tips, and baseline arm measurements for future reference. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Have a wonderful trip, don't swell, and be well!
(Let us know how it goes!)
Binney

crystalphm · August 2012

Well now I am confused. I did not know there was a thought that a poorly fitted sleeve could cause harm.

I am not sure how to know if a sleeve is fitted right or now. I do wonder how a Jobst M can be such a "one size fits so many" thing....I had it fitted by a fitter, I get a new one every 8 months or so (I don't wear it every day)...and now I am flying in a month and am worried.

How often should they be replaced?

I do not have serious LE, just mild, but I don't want it to get serious.

barsco1963 · August 2012

Binney - thanks so much for the warm welcome and all of the info. I have been fortunate so far that I have not had any swelling in the year since my mx. I do realize that we are never out of the woods so to speak and I will certainly take the precautions that you noted.

I will have to try and track down an LE therapist - I don't think that there are many in my little neck of the woods though. Will likely have to travel some distance to find one.

Will let you know how I make out upon return! Flight is not till 24th.

Have a great weekend!

Binney4 · August 2012

Crystal, here's infomation about proper garment fitting:
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

A poorly fitting sleeve can cause trouble in the same way that a blood pressure cuff can--by creating a tournaquet effect, "squishing" the lymphatics in one area and blocking lymph flow. For instance, a sleeve that's too tight at the wrist can trap fluid in the hand and not allow it to return up the arm. A sleeve that's too tight at the top will trap fluid in the upper arm or elbow. If your garments are working well for you on the days that you use them, then that's not a worry.

Our day garments last about six months if they're worn daily (actually, every other day, because you'd have two and alternate them). They hold up better if they're washed daily. If you're wearing them only occasionally they'll last longer, of course.

Barsco, lymphedema therapists can be hard to locate, as sometimes even our doctors are not aware of them. Hopefully following all the links on Therapist Locator on the page I listed above will come up with some surprising finds closer to home. But the fact is, some of the women here do have to travel long distances for help. A good lymphedema therapist is worth gold! Laughing

Let us know what you discover!
Binney

cookiegal · August 2012

It's funny because the sleeve I was given as a "In case of LE break glass" was a poor fit, and it's probably a good thing I didn't wear it.

I still think the silverwave bi-lat might be a good choice for someone with no LE for flying. It's loose enough at 15-21 that is is more flexable. It was the only thing that worked besides custom for me, and I think the little wiggles can't hurt.

(I know Binney has concerns about the cuff, since I have small wrists it was a good fit.)

My surgery was in October, I flew twice in Nov and once in Dec, and once in Feb. I have always wondered if those flights, especially the one after rads could have contributed to the situation.

crystalphm · August 2012

What is the sliverwave bi-lat? Where would I find something like this?

My therapist sent me to my fitter who came up with this iron maiden sort of vest that was *torture*... (and she is no longer my therapist as no one will sign a paper that says I actually have LE even though my arm is up over an inch now. I wonder how big does it have to get before anyone listens to me? Admittedly Iam not outspoken and I back down quickly.

I do not have chest LE, it is just a prevention for flying. So right now I have nothing other than the sleeves and gantlets.

I think one of the biggest problems with LE is there are so few professionals to help us navigate this.

liefie · August 2012

I am flying a three hour flight on Aug.22, and back again on Aug. 26. During UMX on Feb. 7 four lymph nodes were removed, and I have had no swelling or any LE symptoms at all. Should I be taking precautions?

Denise-G · August 2012

Hi Ladies - I have only one flight under my Lymphedema arm - my Lymphedema Specialist taught me to wrap vs. a compression sleeve. I've got the technique mastered. I had no problems flying. She said to wear the wrap after the flight for as many hours as the flight was long. Worked for me.

I've heard stories about people flying without compression. Recently, my nurse during Radiation, a BC Survivor of 10 years, told me she flew on a short 2 hr flight without a compression sleeve as she only had a few nodes involved. She said her arm swelled 3 times its size and the Lymphedema started then and has never quit - it has been 7 years.

Also met a woman last month at my MO appt. She had a really cute sleeve on. I asked her where she got it. We began to talk. Same story for her. No one told her she needed compression while flying as she only had a couple nodes involved. Two hours after a flight, boom, hello Lymphedema.

kira66715 · August 2012

Denise, what you're writing about is so common, yet the NLN decided to re-write their risk guidelines to say that compression could be dangerous--based on one lousy 12 year old study of an Australian surgeon who asked some of his patients if they flew, if they used a sleeve and if they swelled--no exam performed.

I wrote to the NLN about my concerns, as well fitting mild compression offers little risk, and it's impossible to predict who will get LE after a flight, and they told me to F##k off. Seriously.

There was a study that the NLN loves, done by Nicole Stout, in 2008 where she put ALL the women in a jobst sleeve and gauntlet, and decided that she helped women hold off LE (impossible to tell, as she had no control group) and that study has started a whole movement and NLN position paper on early detection of LE.

So, I asked, why is compression safe when Nicole Stout does it to all post op women and dangerous when a physician/LE therapist/woman at risk decides to use it on a flight? Again, I was told to go away, in not nice terms. One researcher told me, off the record that she always worried about how well the compression fit the women in the Stout study, but the official response from the NLN was that compression is always safe in a study. Really??????

So, with these new guidelines, therapists are telling women that compression could cause harm and only time will tell if more women fly without it and get LE.

Jane/Onebadboob, was in a study at NYU and the grad student told her she was like the 200th woman to get LE after plane flight, and the investigator told the grad student to be quiet, and she doesn't support compression on plane flights--with no real evidence to support her belief.

Sure don't want any more sisters of swell.

If it could be avoided.

I fly wrapped also. And wear compression knee highs.

Kira

crystalphm · August 2012

I appreciate everyone's input on this. I have to fly in a month. One thing that I think about is the "poorly fitted sleeve being worse than no sleeve". To my way of thinking, some of this is common sense. If the sleeve is so worm it fits around the upper arm like a rubberband and then gets real loose, well, that is going to cause problems.

I personally have to buy a new one every 8 months or so, wearing it a few times a week. I can see when the "look" isn't right, when that band at the top is way too tight and the rest way too loose.

I will fly with 2 sleeves and gauntlets even though I did not have any luymph nodes removed on the one side, my therapist thought it best.

I just wish insurance paid for some of this.

SyrMom · August 2012

My PT therapist said the same thing, wear the sleeve. Women who previously never had LE have gotten it when unprotected!

liefie · August 2012

Thanks, girls! I know what to do now.

LtotheK · August 2012

Just wanted to add, not to be contraversial, but to share what my PT said. She said it's not the fit of the sleeve in patients who don't have active LE. It is that there is concern any compression actually weakens the lymphatic system, and could thereby precipitate it. We all need to advocate very seriously for further research. I have been LOST with my treatment plan. I had cording, no active LE (yet). My PT is really torn about whether I need a sleeve or not to work out, fly...with better research, we could PREVENT a lot more cases.

So my question to Kira is, is her stance based on this one garbage study you cite? I feel like I saw some other more intensive reports on this topic, but can't scare them up this morning.

This lack of study has made Kira and Binney part of my team, and quite honestly, they advise me better than any doctor so far by pointing me to the studies that do exist.

My PT, by the way, is an LE specialist at a hospital who works with NovaCare.

kira66715 · August 2012

L to the K: I sure wish we had good studies to guide us, right now, there are 3--The Australian Dragonboat flying study, which used a single bioimpedance measurement, and found some LE in the women making the longer flights--discussed on SUSO: http://www.stepup-speakout.org/research_updates_and_comments.htm#Compression_garments--and these were athletes, the 2002 Graham study where he asked his patients how they did, and an older Casely-Smith study. So, no real science to guide us, specifically on LE and compression garments.

I think there is no controversy on if you already have LE--you should compress to avoid a flare, worsening/spread

The controversy is women at risk.

The arguement that compression can cause harm is out there, you hear it clinically. One researcher at NYU strongly believes that compression makes lymphatics lazy--but I've never seen a single study to support her contention, and then we have the Nicole Stout study in 2008 where she put Jobst sleeve/gauntlets on all post op women (no control group) and declared that early intervention prevents LE.

Compression increases the pressure to increase lymphatic absorption, but it sure can trap fluid as no compression fits like a second skin.

I would say, for women at risk, monitor yourself when you exercise--for symptoms, swelling--and if there are none, then don't use compression.

Plane travel is a risk due to barometric pressure changes, dehydration, lack of movement and carrying bags. I think each woman at risk should review their risk with their doctors (if they know anything about LE) and their LE therapists and then decide.

A PT who I admire a lot recommends a 15-20 mm sleeve--Jobst and now Sigvaris make them--with a 20-30mm gauntlet for flying, for women at risk who decide to wear compression.

It's just so hard, because you can't predict who will swell, what their baseline lymphatic transport capacity is--and there are two new studies that show that when LE presents, the lymphatic pump starts to poop out in the good side as well over time, so it's a whole body insult--and a genetic study that shows that some women who get LE with minimal insult may have a genetic predisposition to LE--a gene that is present in primary LE.

The new NLN guidelines have made therapists very cautious, as they cite the Graham (useless) study and say "compression may cause harm"--when a therapist sees the NLN say that, they are worried about causing LE with compression.

So, we don't have studies to go by, and we have to go by clinical experience, and individualize the approach for each woman.

Here's the abstract for Graham:

http://www.ncbi.nlm.nih.gov/pubmed/14965648Breast. 2002 Feb;11(1):66-71.
Compression prophylaxis may increase the potential for flight-associated lymphoedema after breast cancer treatment.
Graham PH.
Source

Cancer Care Centre, St George Hospital, Kogarah, NSW, Australia. p.graham@unsw.edu.au
Abstract

This study aimed to assess exposure to flying in breast cancer survivors and assess the relationship of flying to lymphoedema. A total of 293 relapse-free breast cancer survivors with known pathology and treatment details and prospectively measured arm circumferences were surveyed for their flight exposure and precautions history. Of these, 287 responded, with a mean follow-up of 31.6 (4-111) months. A total of 50.5% had flown, and of these, 27% had travelled overseas. The mean number of flights was 5.3 (1-100); 24% had taken lymphoedema precautions, 90% of which utilized compression techniques. There was no significant difference in lymphoedema rates for fliers (11.2%) and non-fliers (8.3%). No woman reported permanent (new or increased) swelling after flying. Of the nine reporting temporary swelling, six reported 1-3 concurrent potential risk factors. On regression modelling for both measured and self-reported swelling endpoints the use of precautions (OR 5.6 for lymphoedema and 3.7 for flight-related temporary swelling) were statistically significant. For patient-reported swelling, the number of positive nodes (OR 1.2) and the number of overseas flights (OR 1.4) was also significant, whereas for clinical lymphoedema age (OR 1.07) was significant. We conclude that domestic air travel (<4.5 h) is low risk and that compression devices are possibly counterproductive

Just to explain: his prospective measurement was that he measured these women at two points, during his surgical follow up. He did not bring them back after flying. His evaluation of LE was self reported swelling.He asked them about it once, and their time post op varied from 4-111 months. No subsequent questioning. So, his initial assessment was a two point arm measurement and his diagnosis of LE was based on patient report. 143 women had flown, we don't know which group took multiple or longer flights or how far post op they were, and of this group, 24% took LE precautions--34, of which 31 wore compression. So, around 10% of his varied group of patients flew with compression.

He does state that more nodes and longer flights was significant, but this is all self reported and not observed, validated, clarified, or followe up. So even in a quick survey with no real science, longer flights seemed to pose risk.

This was in the age of ALND

So, the NLN took his final conclusion, as a scientific fact, when his "study" can't conclude anything.

So, we're out here in the wilderness trying to figure out what to do, and I would say, go with your personal risk and personal symptoms, and if you've swelled on flights before and make a decision, and make sure if you get compression, it fits well.

Does that help?

Kira

LtotheK · August 2012

Once again, Kira, you are A M A Z I N G. Three cheers for YOU! My deepest thanks.

crystalphm · August 2012

It is confusing, and I so much thank Kira and Binny for helping us navigate all the information. I am going to fly, and for the 2 hours in the air, I will wear compression, it just makes sense because of what happens to a water bottle on the airplane. I have alot of discomfort in my one arm, and the compression also stops that.

I am disappointed that my mastectomy was only 7 months ago and now I see the exercises afterwards are not a good thing to do. I stretched myself as hard as I could :-(

My mother has LE (not BC related) but I think I have that genetic factor going on...so I will wear compression...but I am still asking for opinions.

liefie · August 2012

I thought that I knew what to do, and that I could just get a compression sleeve to put on, but now I am thoroughly confused again. Living in a small town far from a large centre, here is no facility where I can get a sleeve fitted in time for my flight on Wednesday morning. So I bought one over the counter at the pharmacy, but now I read that an ill-fitting sleeve can actually trigger lymphedema when flying. I had 4 nodes removed, and also had radiation which ended on July 6. I am not prone to swelling, and don't have lymphedema, but I want to prevent it. What am I to do? Stay home?

SyrMom · August 2012

Is there a PT educated in lymphedema nearby? My thought is they could look at what you bought and see how it fits. My understanding is it should be snug; also, some compression is better than no compression.

liefie · August 2012

SyrMom, I know PT's, but here in this town there is not a lymphedema-trained PT. I will phone one anyway, maybe she can put me in touch with someone who is. Thanks!

Binney4 · August 2012

Liefie, don't cancel! Surprised Right, a poorly-fitting sleeve is worse than no sleeve, because an area that's too tight above one that's not-so-tight can trap any swelling in your arm or hand. There are some helps for assuring a good fit here:
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm
But it really isn't a do-it-yourself deal, and it's always best to check with someone knowledgable.

BUT, if you can't do that there are still precautions you can take to reduce your risk. Be careful when packing and traveling not to heft heavy luggage around. Use good body mechanics if you have to lift either the suitcase or piles of items you're packing in it (use your unaffected arm or both arms, and keep the weight close in to your body, not way out in front of you). Use wheeled luggage and don't jerk it up over the curbs. Get someone to help you lift it into the overhead areas or off the carousels. Don't carry heavy bags over your affected shoulder.

Stay really well hydrated, starting the day before you leave at least--that helps dilute the lymph fluid to keep it moving. (It may mean more trips to that tiny stupid airplane bathroom, but at least it'll get you out of your seat and stretching your legs!) On the plane, plan to do arm stretches often to help keep lymph flowing, and do periodic deep, abdominal breathing to stimulate the largest lymph vessel in your body. When you arrive, be mindful of any unusual activities you may be doing (kayaking, mountain climbing?!) and if you're outdoors use sunscreen and insect repellent.

Have a great trip, and do let us know how it goes!
Binney

liefie · August 2012

Thanks, Binney! My husband is traveling with me, so he will help with carting and lifting suitcases. We're going only for a few days, so will pack light, but I promise not to lift anything. Will also be doing everything else you are telling me. I plan to be on the beach, but will stay in the shade of an umbrella, slathering myself with sunscreen due to the recent radiation. Let's hope for the best!

crystalphm · August 2012

Liefie, Look at the photos Binny sent you on the website, and you can see how to fit a sleeve.

Aside from this, start drinking early, and keep drinking. I raised my arms straight up and opened and closed my hands (made fists and opened again) and this helps circulate lymph fluid.

Breathe deeply, imagine a 5 pound bag of sugar on your belly and you have to push it out, and let it fall back.... practice before.

Don't lift your luggage, get help. Keep your packing very light, even it is means you have to wash something out in a sink.

You will be on the beach, this is going to be a fantastic vacation for you, one of healing!

liefie · August 2012

Thanks for the advice, crystalphm! As for the breathing, I do joga, so it is not a problem. You ladies are so helpful, and I appreciate your input. I looked at the photos, and I think the sleeve that I have fits well enough if I compare to the photos. Don't have a gauntlet, but will get one for the future. I now feel more ready for the journey.

barsco1963 · August 2012

Thank you for the advice on flying - followed the precautions you mentioned and so far so good. Flew on Friday (no sleeve) and although it was a short flight there was a stop over, so it was like two flights in one day. I haven't noticed any swelling. Good ole Air Canada bumped us from coach to 1st class for the first (and longest) leg of the journey! That was a bonus.

Wishing everyone a good week ahead!

Thinking about flying

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