concerned about flying
Hi everyone. I'm a newbie here. Recently diagnosed and only 7 weeks post mastectomy. I had Paget's of the Nipple and then DCIS was discovered with the mastectomy. No reconstruction, no radiation at this point. My scar area is very "puffy". When I asked the surgeon about it, he said it was "excess skin". For some reason, he was under the impression that I wanted to do an implant later on. I'm not sure where he got that idea, cuz it wasn't from me! So I have this puffy lumpy chest, and some areas seem squishy like there may still be some fluid there.
I want to do whatever I can to prevent lymphedema. I've been reading all the articles and postings on here and have learned a lot. I go to see a PT this week for some exercises. She's a breast cancer survivor too, but I am not sure if she is lymphedema certified.
The puffiness kind of got me concerned about truncal lymphedema, especially since I have a plane trip coming up at the end of Oct. Right now, my arm is fine, and I suppose the puffiness could be do to the excess skin.
Does anyone have any suggestions about preventing lymphedema with flying? Do I need to get a sleeve, just in case? I'm all about prevention, but my MD didn't seem to think it was necessary.
I just wanted to see if anyone has any suggestions about what I can do before and during the trip. It's not a long plane ride. One hour, change planes and then 2 hours. So I can walk around the airport during my layover.
Thank you!!
Comments
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Glennie, my situation is different from yours. I had a lumpectomy and no chest puffiness. But that said, last December I flew to India and had no problems. I did wear my sleeve most of the time while flying. Don't know if this helps because I do have a different medical history. Hopefully others who have more similar experiences will post soon. Best wishes!
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Here is the info on flying from Step Up, Speak Out:
I know some wear sleeve/glove or gauntlet preventively, I have bi-lat LE issues so I wear bi-lat sleeves/gauntlets when flying, but if you did not do that you might consider compression in the form of a tight-fitting underarmour type shirt. That would provide some compression for trunk and arms.
http://www.underarmour.com/shop/us/en/womens/apparel/baselayer/tops
I am sure that the ladies who are very conversant with this subject matter will come along and give you their excellent guidance soon. Good luck!
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Thank you both for your quick replies. I will look into the compression type shirt.
I might also mention that I have developed ankle edema on long flights. There was one 9 hour flight where I was stuck in a middle seat with uncooperative seatmates so I couldn't up and down as much as I usually do. My ankles were so swollen when I got home that I couldn't see the ankle bones at all. I do have RX compression stockings that I wear now.
Not sure if there is any corelation between developing ankle edema and developing lymphedema. Off to read more!
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glennie-I have occasional mild truncal LE on the left side only. I had a BMX without reconstruction. I wore a snug fitting sports bra when I rercently flew. I had nodes removed from both sides, so I wore sleeves & gaunlets. I also wore compression socks due to new varicose veins cropping up. The first leg of my flight was less than an hour. Changed planes for the next leg(4hours). Changed planes again for the final 2hr leg. I was over 2 years from my BMX surgery.
Finding a snug & comfortable sports bra was a challenge. I use a swell spot with a sports bra when I notice I'm getting puffy. Your so soon after surgery, do you have access to a LE therapist.
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I have traveled extensively for many years and continue to do so after BC. To prevent my ankles from swelling, I wear compression knee-hi stockings from KushyFoot (I get them at RiteAid). Now for long-haul flights I also wear a compression tank top. I have one from Maidenform and another one from a brand I can't remember that I picked up at TJMaxx. Even though I am at low risk for LE (lumpectomy and 3 sentinal nodes removed), I think I may have provoked a mild truncal LE from moving house a few months ago and it makes me feel better to wear the tank top.
I think walking around as often as you can during and/or between flights is a good idea. Even if it's not possible when I'm on the plane, I try to do stretches in my seat. Since my diagnosis I've flown on several flights that were longer than 10 hours and I've been fine. Less than 3 weeks after my surgery I flew from Seattle to Switzerland and haven't slowed down since. I do check for any signs of swelling during and after the flights.
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My PCP gave me a RX for a sleeve and gauntlet, so I feel better prepared now. Thanks for all your input! Greatly appreciated! -
glennie - it takes about two weeks to get my sleeve/gauntlets from my medical device company, so factor that time in before your trip. You want to be properly fitted so you need an appointment, then they usually order the products. -
Glennie, it's a good idea to wear your sleeve and gauntlet for an hour or so when you get it (before the trip) to get used to it.
Enjoy your trip!
Leah -
Thanks for the advice, Leah. I will do that.
SpecialK, my store had my size in stock, so I'm good to fly!! -
I was told to wear a sleeve when flying and of course I forgot mine at home. Yes my arm was in pain while flying but it went away and I was fine all week. The pain was not that bad so I did not go buy a new sleeve to get back home just lived with the pain. It was a mild throbbing pain. -
I don't have LE but I was told I should wear a sleeve preventatively only when on a longer (over 3 hrs) flight...is this correct? we have a trip coming up and I did get a sleeve since it is covered by the government here but not sure if I should wear it. I took a 5hr flight last year and no problems. I don't want to mess with anything. Not sure what to do -
rozem, I'm not sure what to do either. I've just heard a lot of stories about women getting lymphedema after flying, so I wanted to get a sleeve to hopefully prevent. I'm really not sure what is the cut-off for number of hours in the air. I'm sure the longer the flight, the greater the risk. I just don't want to take any chances. -
I never heard of cut off hours for flying. I hope Carol57 our frequent flyer drops in for advice.
I would try to get up and move a lot. Drink tons of water. Deep belly breath. Go to washroom and stick your arm straight high above your head and pump 25 times slowly to help move your lymph fluid Wear a Underamour compression mens tee a size smaller than you normally wear.Wear a gauntlet or a glove and a sleeve.
Start wearing the sleeve and hand protection well before your flying days to get use to it. Maybe start out a hour or two a day working up to a full day. Sometimes it may not be comfy and you should do a trial run incase you need to trade in your sleeves before you go. Smear some anti rash/chaf stuff the runners use on your inner elbow if the sleeve is rubbing uncomfy. Works pretty good. Stay away from alcohol and caffeine so you don't dehydrate during your flight. Try not to eat their salty meals provided. Bring unsalted nuts and unsalted snacks if you can. Maybe the airline will provide a low sodium diet if you ask.
Wear your sleeve before flight (maybe a hour)and then about a hour or so after you land. Hopefully Carol will pop in and comment or refine my suggestions.
MD's usually are ignorant to LE and may say you won't get it and you might not but you may like I did! Education is your best weapon. -
Glennie, Hugz mentioned all the things I try to do when I fly, which is pretty often. I've done quite few 5-hour flights and many, many of shorter duration since my LE diagnosis. I'm going to take a long trip soon that will have me on an 8 to 9 hour flight, plus two shorter ones within 12 hours, so I'm hoping that all these precautions don't fail me!
One other thought is to be thoughtful about not adding insult to injury. By that I mean flying is insult to your LE, so try to avoid piling on other stresses. Be mindful of luggage weight and how you handle it, trying to minimize weight and the number of times you have to heft your bags. Do get in some good walking at the airports to get your breathing going and to get some muscle movement to move the lymph, but avoid heavy duty cardio with lots of repetitive-motion arm pumping (I learned the hard way about not doing cardio with arm pumps after flying). To me, above all hydrate, hydrate, hydrate!
Let us know how it goes!
Carol -
Thank you for all your advice! I really appreciate it! -
Carol, I knew there was something I forgot. Well for sure you deserve the frequent flyer badge. I must remember to not tote heavy luggage which is easy to forget when you are in a hurry at the airport. -
This is a pm that I was asked to re-post when I was asked about LE and flying:
There is a connection between air travel and triggering LE--clearly from clinical experience, but unfortunately the three studies in the literature don't "support" it, but they're absolutely horrible studies. One was--seriously--an Australian surgeon who just thought about his patients! And the NLN used it to back off on supporting wearing compression on air flights. The other was a study of Dragon Boat women who flew either within Australia or from Canada, and the longer flights did cause swelling, but they concluded it didn't. Although they did conclude that longer flights caused more swelling. I'm blanking on the third one, but it was lousy as well.
What's clear is, if you have lymphedema, flying can make you swell--and you should wear arm/hand/chest compression or wrap (which is what I do.) If you are just at high risk--that's the controversy--should you wear arm/hand compression or just drink a lot of fluids and move around a lot. The LE experts argue that poorly fitting compression can trap fluid.
I'm on the board of LANA and I flew to a meeting--about a 2 hour flight, and showed my Tribute to the owner of the company, who is on the board, and she asked a highly trained PT to measure my arm because the Tribute didn't fit well. So, this PT looked at my arm, and said "You don't need a Tribute, you don't have LE." (don't you love it??) and then she felt my arm (small, but holding fluid) and got hysterical "You have LE, you need to be in an elarex sleeve! You could get cellulitis!". Um, I flew to Chicago, slept in a hot hotel room and ate salty food and sat at a meeting. I do have LE, and my arm is not large--it's mostly in my hand. After a day or two of home care, my arm was back to normal.
I just flew last weekend, and it was only an hour flight, and I can feel the difference.
Binney first got LE as she flew to Alaska to see her family, and her hand swelled up like a pitcher's mitt. Moogie, who hasn't been on the boards much got it from a flight--and she was wearing compression sleeves. I heard a talk at an NLN conference, where Sheila Ridner said, "patient after patient talks about getting LE while flying". Clinically, it happens.
Jane/Onebadboob got LE from flying, and was in a study at NYU, and the grad student who took her history said "You're the 200th woman to report flying triggered your LE!", but the chief investigator doesn't believe that flying can trigger LE, so she "hid" that data and denies it....
We have a page about it on SUSO: -
Thanks Kira OH "PFD" your answer was so appreciated. As was Binney's transfer to Bonfires. I nicknamed her PFDII :)sassy
While Binney was on Bonfires, she answered a few questions. The next post is a repost of the question and answer on BONFIRES -
Hi folks, what was here was a repost from Bonfires. Somehow The transfer was messed up. I reposted them below. They are in sequence as they appeared on BONFIRES thread. Thanks, I could have just hit delete, but those blue boxes always make me curious as to what was there, so, instead this is an explanation
sassy:
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Thank you for all this advice and for the links. This is SOOO helpful. I'm flying on Friday and I'm really nervous about it. But I guess I'm as prepared as I can be. -
I too had my first "swelling" after a flight a couple weeks ago...didn't think much about it but mentioned it to my MO...seeing a lymphadema specialist this Wed for help....ugh
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ChickaD, were you wearing any compression garments? How long was your flight? -
No compression garments...never swelled before...flight was only 1.5 hrs Cleveland to New York
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ChickaD, I'm so sorry! Ugh is right--but I gotta say you're sure on top of it. Way to go! Let us know how your appointment goes.
Hugs,
Binney -
Glennie,
I got lymphedemia for the first time on a 13 hr flight to China. Since then, I use a sleeve and gauntlet with a bandage wrapped around the sleeve for extra compression. I elevate my arm during take off and landing and have a small rubber ball to squeeze. I may look odd to people on the airplane, but I don't care. I tell them I have issues with my arm which stops the questions... usually:))) I drink 8 oz of water or more per hour and get up and move around every hour which is important when I was still swelling with the sleeve and gauntlet.
But everything above has helped. I also was prescribed herbal horse chestnut from my naturopath which did seem to help, but I don't take it anymore after I got the lymphedema under control. Last time I flew, I had to check my bag and realized my sleeve was in it. I did everything mentioned above and didn't have problems.
Many doctors only prescribe a sleeve, but that contributed to my hand swelling, so make sure to get both. Luckily all my lymphedema has been intermittent. If you have questions, email me as I many not check this thread and am clueless as to how to get emails on threads... LOL
Georgie -
Just wanted to let you know, my arm & I survived our first flight since surgery. I wore my sleeve & gauntlet, drank water and I did OK. Whew! Thanks again for all the advice. -
yeah for you and your arm!
you flew with lots of info and glad it helped -
Well sorry folks, I must of reposted the Binney response, hit submit and then didn't look. OR maybe to much wine. I'll try and fix it. The questions and response deserve to be readable. Whatever I'll try.
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This is a repost from Bonfires thread. From Binney who was making sure I saw Kira's post. Binney added her thoughts too.
Oct 19, 2013 03:54pm Binney4 wrote:
sas, Kira re-posted her PM to you on the lymphedema board. I thought you might not find it so I'll re-post it yet again here:
This is a pm that I was asked to re-post when I was asked about LE and flying:
There is a connection between air travel and triggering LE--clearly from clinical experience, but unfortunately the three studies in the literature don't "support" it, but they're absolutely horrible studies. One was--seriously--an Australian surgeon who just thought about his patients! And the NLN used it to back off on supporting wearing compression on air flights. The other was a study of Dragon Boat women who flew either within Australia or from Canada, and the longer flights did cause swelling, but they concluded it didn't. Although they did conclude that longer flights caused more swelling. I'm blanking on the third one, but it was lousy as well.
What's clear is, if you have lymphedema, flying can make you swell--and you should wear arm/hand/chest compression or wrap (which is what I do.) If you are just at high risk--that's the controversy--should you wear arm/hand compression or just drink a lot of fluids and move around a lot. The LE experts argue that poorly fitting compression can trap fluid.
I'm on the board of LANA and I flew to a meeting--about a 2 hour flight, and showed my Tribute to the owner of the company, who is on the board, and she asked a highly trained PT to measure my arm because the Tribute didn't fit well. So, this PT looked at my arm, and said "You don't need a Tribute, you don't have LE." (don't you love it??) and then she felt my arm (small, but holding fluid) and got hysterical "You have LE, you need to be in an elarex sleeve! You could get cellulitis!". Um, I flew to Chicago, slept in a hot hotel room and ate salty food and sat at a meeting. I do have LE, and my arm is not large--it's mostly in my hand. After a day or two of home care, my arm was back to normal.
I just flew last weekend, and it was only an hour flight, and I can feel the difference.
Binney first got LE as she flew to Alaska to see her family, and her hand swelled up like a pitcher's mitt. Moogie, who hasn't been on the boards much got it from a flight--and she was wearing compression sleeves. I heard a talk at an NLN conference, where Sheila Ridner said, "patient after patient talks about getting LE while flying". Clinically, it happens.
Jane/Onebadboob got LE from flying, and was in a study at NYU, and the grad student who took her history said "You're the 200th woman to report flying triggered your LE!", but the chief investigator doesn't believe that flying can trigger LE, so she "hid" that data and denies it....
We have a page about it on SUSO:
Hope that helps. Glad to see you tossed the whole lymphedema business into the flames--definitely where it belong!
Be well!
Binney
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repost from Bonfires
Oct 19, 2013 04:40pm gardengumby wrote:
Thank-you for the information, Binney. I'm getting on a flight to Hawaii soon. I always wear compression (also have to wear it on both legs due to DVT's - thank-you, tamoxifen) when I fly. The last time I flew my hand swelled up a lot, but it went down shortly thereafter. I've never been diagnosed with LE, and seems like I'd know if I had it, wouldn't I????
Some of this stuff I feel like I've just stuck my head in the sand and ignored as much as possible. I HATED the LE therapist they sent me to out of the hospital, so only saw her twice. She seemed like a charlatan to me. But I've also seen women who had REALLY BAD LE, and I do NOT want that to happen to me.
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