Did anyone get first onset of lympadema from flying?

Staceybee

Did anyone get the first onset of lymphadema from flying? I am new to this and trying to assess my risk. I had lumpectomy with two sentinel nodes out and just finishing radiation which includes the nodal area since I had one positive.

I attended a monthly informational seminar at my treatment hospital for all BC patients (not specifically for ones with LE). They said with 1-2 two nodes out they consider risk 0%-7% and then add 5%-10% for radiation -- though not sure if that included direct treatment of nodes, which could make it higher. But of course she caveated that they see people with 15 nodes out that never get it and people with 1 node out that do get LE. She said to do things like wear gloves when washing dishes so you don't burn yourself and don't get cuticles cut, but when I asked about wearing a compression sleeve while flying she said she does not recommend it if you do not have LE already. When I asked why not wear one just for prevention, she said if someone has a poorly fitted sleeve it could cause a problem rather that prevent it -- and she does not recommend going to a surgical store and getting one on your own. For flights she recommended pumping the arm, walking around, drinking a lot of water and not eating the salty airline food.

I fly quite a bit for work + personal trips. I estimate I take at least 20 roundtrips per year, so that is at least 40 flights per year incl. about 14 that are 6+ hours incl. about 8 to Europe/Asia - many on which I am sleeping (not walking around). I also have had issues with leg and foot swelling, which definitely occurs on flights for me.

I am trying to get an appointment with one of the hospital's LE therapist to get a properly fitted sleeve but they seem not to know what to do with me. They act like the only see people with LE. Funny enough, when I explained my situation to the admin when I called, she said they don't see people without LE just to fit sleeves and that I should just go get one at a surgical store -- which is exactly what the woman leading the seminar told me NOT to do! In any case, they also have no open appointments until mid-Sept, but I have two 6-hour flights coming up in mid-August.

Any advice on whether it is wise to wear a compression sleeve while preventive purposes while flying will be greatly appreciated.

pupmom

I flew to China last month; London and Boston last year, all without a sleeve. I do not have lymphedema, so the advice you got sounds correct.

moth

My cancer center sent me to a lymphedema trained PT for assessment after surgery, at the 6 month mark (& I'll have an appointment at 1 year post op).

I asked her about flights and wearing sleeves prophylactically and she said it's not recommended.

Outfield

How frustrating to be told opposites. So much of the problem about official "advice" re: lymphedema is that there isn't a lot of research to back it up. I just scanned through Pubmed (an on-line catalogue of published medical literature) to see if there was anything new, and there's not. While there is a little bit of research about air travel and lymphedema risk, it's such poor quality that it's impossible to use the findings confidently to make practical decisions.

As to whether the sleeve would help reduce your risk, nobody knows that for sure, but there are theoretical concerns about increasing risk. For sure - but not only - if the sleeve fits badly, and there was a tiny study in 2002 that raised concern wearing a sleeve in general could worsen risk (but see below). Sleeves and other compression garments that don't fit well can create constrictions that trap fluid, thereby causing swelling. But any sleeve works best if you are using the muscles in the arm, and most people are very sedentary on a plane. Also there's the risk of falling asleep, and people shouldn't sleep in compression garments anywhere, not just on a plane. The garments can kink, which can trap fluid, and a sleeping person (especially if dreaming) doesn't have the same (often unconscious) protection from minor discomfort that an awake person has. For these and some other air-pressure related reasons I don't really understand, the theory behind wearing a sleeve as a precaution on a flight is different than wearing one as a precaution when starting back to exercising. There's also concern about wearing a sleeve without the hand compressed by a gauntlet or glove - you can cause hand swelling this way. There's a good thread about this general issue not far back.

If you do ever decide to pursue compression, don't do it with an over-the-counter sleeve you buy on your own. Are you in the US? I'm not sure how it works elsewhere, but here, to get a fitted sleeve, what you need is a prescription from a doctor (any doctor) to a prosthetist. Prosthetists are trained in fitting people for all sorts of prosthetics and devices: artificial limbs, braces, and compression garments.

The good news is that there are things you can do to help lymph flow that don't involve a prescription device. Elevation is a huge one. When I travel, I try to remember to stick my arm straight up often (as often as I can!) and close and open a gentle fist. The elevation is a big aid to fluid flow, as is the muscle motion in the forearm. I would feel more secure knowing I had a device to prevent lymphdema, but I think a lot of that is psychological: we're used to relying on devices. Actions can be powerful and come with less risk.

Here are some links to academic summaries of the academic literature:

https://www.ncbi.nlm.nih.gov/pubmed/29859745

https://www.ncbi.nlm.nih.gov/pubmed/27599144

I would take these with a grain of salt, especially the first one. When discussing the overall findings of medical literature, it's really important to assess the quality of that literature. The findings of a study evaluating whether a certain heart drug helps people live longer that includes 10's of thousands of patients who don't even know if they're taking the drug or not would be immeasurably more likely to represent the truth than a study of 12 women who have their arms measured before and after flying by someone who knows that they flew. General indicators of quality in medical literature are: size (lots of patients studied), blinding (patients and people doing the evaluating not knowing if they did or didn't get the intervention) and presence of a control group (where the patients also don't know if they did or didn't get the intervention). There's nothing remotely like that for air travel and lymphedema risk, much less air travel and wearing compression.

You've prompted me to want to look at this literature in detail again - I'll let you know if I find anything else.

Peacetoallcuzweneedit

Hi -

I had one node removed, and yes I saw a certified lymp therapist - got referral from my gyn and most cancer centers or breast centers will have one. OR you could search https://www.clt-lana.org/search/therapists/ ...if you have one node removed you are still at risk. I flew international and currently fly about 6x year. I have a sleeve and gauntlet. I wear both on flights. I had measures taken, and they will be on file with the my Lymph Therpist in case something should happen in future. We can get an accurate assessment of any concerns. She fitted me for the sleeve and gauntlet and educated me on my topics --> massage, prevention, latest research...very good appointment. My BS did not see need, my gyn said whatever I want to do, and she gave me referral. I am in healthcare myself and I rec for my patients "top standards of care", so I did just that for my own care. My BS would have given me a referral as well, I just did a lot of info gathering and explored reasonings with both, plus posted on here to gather opinions/experiences...in the end I did what I would rec. I follow Lymph therapist recs when I fly, and so far all ok.

Happy Travels :-)

ElaineTherese

I had all 20 of my Levels 1 and 2 lymph nodes removed and I don't wear a sleeve/glove when I fly. I just move my arms around during the flight. Unless I'm diagnosed with lymphedema, my doctors won't write me a prescription for a sleeve/glove. I'm good and I'm not really worried. I guess I'm also four years out, and have flown dozens of times without incident. Good luck!

Traveltext

I had an left-side axillary clearance and fly regularly without incident. The last flight was 14 hours. I'm four years out.

hugz4u

Lots of people here have gotten lymphedema from just one flight and just one node out. Don’t forget rads burns your poor dear nodes too.

It’s a personal descision but if you google Andrea Cheville from mayo clinic she advises for flying a well fitting sleeve with hand garment so you don’t push fluid down into hand.

Crumb.... I wouldn’t wish my worst enemy with lymphedema. It’s a life changer and eats a hole in your pocketbook really fast. I think it would be prudent to to preventive.

Denise-G

I have personally met two women who got full-blown Lymphedema after one flight -

1) My radiation nurse - she was a 20 year breast cancer survivor, decided after that long not to wear her sleeve,

flew on a 4 hour flight and bam. When I met her she had Lymphedema for 3 years and warned me to always wear

my sleeve while flying.

2) A fellow patient at my cancer center. She flew on a 1 hour flight, no sleeve, and bam - her arm was quite large.

She was at the hospital for LE therapy.

hugz4u

And speaking of cost.... here is a sampler. Once your arm Swells you have to go for complete decongestive treatment. A special lymph massage to move out accumulated lymph fluid that is making your arm swollen. Painful.This is three weeks long,5 days a week usually at 110 Cnd dollars a session. You go home with each finger wrapped in guaze and short stretch bandages up to arm pit. Don't take off till next session. (Try cooking it's a new experience) Once arm is down to its smallest “new" size you get fitted for sleeve and hand garment. To be worn daily for life. Each custom made sleeve and glove costs me 700 cnd and last 6 months where I pay another 700 to get new ones. Most Insurance companies are not very generous covering these garments. I get 500 a year covered. We are talking thousands here. Yup I drive an old car!

Don't want to scare you but it's much easier to take preventive measures by getting a well fitting sleeve and glove or gauntlet and wearing it a couple hours a day to get use to it and well before flight at the least a couple weeks before flight. You might find a well fitting set “off the shelf “ much cheaper to do the trick

Here I am last summer with wrapped hand. Hot!

Meanwhile do get educated here on the threads and ask questions. Education can save you a lot of trouble down the road. No question is dumb. We are all learning together.

carmstr835

I have had all level 1 and 2 nodes removed from right side and 7 weeks of radiation to my under arm, chest wall, sternum, and collarbone nodes. I had 4 removed from my left side 3 under arm and 1 mammary node. I was told to always wear my sleeves when flying, so I do. I have never had any swelling except after my reconstruction surgery and only my hands. That resolved on its own after I removed my sleeves I wore during surgery. I also don't allow blood pressure or needle sticks on either arm to the dismay of my surgeons and medical professionals.They seem to believe this is just a myth. But I don't want to get lymphodema to prove them wrong. So, I insist on treating my arms with caution.

SummerAngel

Keep in mind that the biggest known risk factor for developing Lymphedema is being overweight. After that, many nodes removed, radiation and chemo are also risk factors. If you have many risk factors it might be a good idea to get an opinion from a LANA-certified therapist. Mine did not recommend sleeves/gloves for flying due to my low risk, and I never wear them. I took a trip to the UK last month, including a 9 1/2 hour flight one way and 3 flights with layovers the other way, and had no issues. I also slept the entire time, never got up at all. I have taken many shorter (2-4 hour) flights since my surgery as well.

Piksie

I will be losing all level I and level II lymph nodes next week and will have radiation. I didn't experience any issues after my mastectomy 2.5 years ago, but my biggest fear this time is lymphodema. I am very active at the gym and run Obstacle Course Races (Spartan). I am determined to do as much as physically possible without causing harm, but I have no idea where that line might be. Do any of you do strenuous activities that put you at risk? If so, how do you prepare for it?

Binney4

Hello, Piksie,

Good for you for being proactive! A good first step would be to get a referral to a well-trained lymphedema therapist (any doctor on your team can write it) for baseline arm measurements and personalized risk-reduction tips.

Here's information on the research that's been done on weightlifting for women with lymphedema and at risk for it:

http://www.stepup-speakout.org/Weightlifting%20and...

There's also information on that site about lymphedema and exercise:

http://www.stepup-speakout.org/Weightlifting%20and...

And information for trainers about how to deal with women at risk for lymphedema:

http://www.stepup-speakout.org/Weightlifting%20and...

Hope some of that helps. Basically you'll want to start back easy and work up slowly to your previous activity level. The good news is that muscle movement is the main pump for the lymph system. Just go easy after the surgery and work up slowlY. There's some evidence (such as it is) that keeping your affected arm below shoulder level for the first 10 days or so can help lower lymphedema risk because it gives your lymph vessels time to repair themselves.

Sharing your hope for smooth sailing through bc treatment!, and hope you never join our Swell Sisterhood!

Gentle hugs,
Binney

Piksie

Thank you for the info, Binney4. So many ways this could go for me... I'm hopeful that my current fitness level will work in my favor, but I can only cross my fingers.

xoxo

buttonsmachine

Hi Staceybee - one thing is clear from reading all these posts - there is so much conflicting information out there, even from healthcare providers. It's frustrating that LE is still so poorly understood.

I can say a few things anecdotally from my own experience, and from people I have met in the BC world. I do know a woman who got LE right after flying. She is very slender, but had many nodes removed. I also know another woman who got LE after driving up and down very high mountains (7000+ ft.) on a road trip. I'm unsure of how many nodes she had removed.

I have some very mild truncal LE, but no sign of arm LE at this time. I was given an Rx for a sleeve for prevention, and I was fitted at a DME store by a professional fitter. I double checked the fit of the sleeve with my PT who is also a CLT. I was told to wear the sleeve as a prevention measure while flying. I also wear it when exercising or doing repetitive motions, but I try not to overdo it with my arm, ever. I have flown a lot wearing my sleeve, and have never had any problems. So far so good: the mild truncal LE has never worsened, and arm LE has never developed.

You may want to see if you can have a screening with an LDEX (or similar) device. It will actually measure the fluid in your arm, and can detect the very earliest signs of LE. The recent research says that if LE is detected early (at subclinical levels) it could even be reversible. I think this should be done for everyone, regardless of their risk level, but it is not done at all facilities yet. I was measured at baseline, and will be monitored at three months intervals for a year after completing radiation. See: http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.5_suppl.118

I hope that helps and that you find some answers!

Staceybee

I wanted to report back to this thread. While I do not have lymphadema, I was concerned about the risk from flying -- which I do frequently for work and personal. I am being treated at a national cancer center, but had to really push to see a LE therapist to get fitted for a sleeve.

I had two sentinel removed. I also had my nodes radiated due to a micromet and the RO originally cited LE risk, but when I asked the nurse later for a referral she said I was not at risk. Nonetheless, I pushed and after I finally got a referral from my RO and an appointment, I explained to the therapist that I came to get a sleeve for flying. She dutifully measured me and wrote me prescription for the sleeve and glove -- and then on my way out she said, "You know, you can't get lymphadema from flying -- it can only get worse if you already have it."

Nonetheless, I got the sleeve and glove and have worn them on four flights already. I feel much better knowing that I am taking precaution.

bgirl

As long as you have a well fitting sleeve it should do no harm. If your weight changes or you gain muscle mass or you have muffin top above sleeve, you should get remeasured. Remember to put on ahead of flight and leave on after as well.

Shortly before I was diagnosed with LE, I had taken 2 six hours flights in a week. Some other things happened as well, that may have been the trigger for full on LE, although I had in retrospect been having some symptoms (which I didn't recognize as not much education given) for 3 years after surgery.

Now that I have LE, flying definitely makes it worse.

Have measurements on side #2 (19 nodes removed this time) and showing some signs of LE and cording after a few months. Have a soft garment for everyday, but will get a custom flat knit before I fly again.

Prevention and self care is easier and cheaper than on-going treatment. Just came from My therapist that I only need to see every 4-6 weeks for maintenance, but still $98 dollars poorer.

LeesaD

Ugh...just reading this thread is making me nervous. I'm 18 months out from BMX and then had 18 nodes removed in ALND a few weeks after that. Have not had any issues at all as far as lymphedema. Saw a specialist every three months for the past year. He's taken measurements and all good. I have a sleeve and gauntlet which I wore in beginning for exercise but now never wear them. Flying next week for first time since all my issues started and it's 7 hour flight so now I'm starting to worry if this is what's going to be the catalyst. Hoping for the best🙏

flyingkites

3 years after completing my BC treatments, I flew to Denver from Las Vegas and suddenly I had lymphedema. Well, I think it is lymphedema. It seems most doctors are completely unaware of what it is and don't do much to help. i am still working on getting a true diagnosis. 3 doctors (well one PA, One orthopedist, and one Oncology PA) said they didn't know what it was. One other said it is biceps tendonitis. It has been 2 months and I still don't know for sure, except my arm is swollen. I have an appt with a new oncologist in 2 weeks. So in answer to your question, Yes... I believe flying can cause it. I would recommend at the very least getting a generic sleeve and using it as a precaution. I don't know much about them, but I wish I had had something.

Staceybee

flyingkites - I am so sorry to hear about the arm swelling - please keep us posted, hoping for the best.