concerned about flying

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  • glennie19
    glennie19 Member Posts: 6,398
    edited October 2015

    oooo, ksusan, you are lucky yours are covered! I just put up with the whiny woman who runs the only mastectomy/medical product store in town,,, who is a Blue Cross provider,, in the hopes that buying my stuff from her and submitting the receipts, that BlueCross might actually pay a part of it! I do find it interesting that your therapist suggest only wearing sleeve on longer flights,, mine wants me to wear mine any time I fly.

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  • ksusan
    ksusan Member Posts: 4,505
    edited October 2015

    I think there's a lot that's still unknown about LE (like a lot of the rest of this). I'm sorry your insurance doesn't cover. Mine will do sleeves and gloves or gauntlets, but not swell spots.

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  • Jennie93
    Jennie93 Member Posts: 1,018
    edited October 2015

    Yes, we are faced with these very tough choices. Surgeons generally know nothing about LE. I know mine said "oh, you don't have to worry about that." He also said to just "go back to my normal life"! Oh, how unbelievably wrong that is. Of course he never sees his patients get LE, he never sees them again after the 2-week-post-surgery checkup to make sure everything has healed.

    Knowing I am high risk, is this a chance I'm willing to take just for the sake of a vacation? I'm thinking no. It would be easier to decide if one of the longtime forum members would come on here and say something like "in all the years I've been here I have never seen anyone get LE from a plane ride if they took proper precautions."

    It would actually be easier if I already had it. I'd be willing to fly, then. You could monitor the arm's response and take appropriate action.

    Living with it knowing you did everything you could to prevent it, but it happened anyway, is one thing. Living with it knowing you caused it by doing something known to be risky, that's another kettle of fish entirely.

    It's like taking the horrible little white pill every morning. I hate it, I hate my body, I hate the way I look, I hate the way I feel, I have zero quality of life on this drug. But I keep taking it because if the cancer comes back, I don't want to have to live with the knowledge that I didn't do everything I could to prevent that.



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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited October 2015

    Hi:

    I think that one must listen to one's body, know one's current limits, and work within those, working up from there slowly and carefully. My PT, CLT-LANA spoke about lymphatic overload, and cautioned me to consider the entire day's activities. An extremely fit weight-lifter (kudos by the way) versus some tiny 52 yr old who couldn't lift her arms above 90 degrees for weeks are in completely different positions regarding how much they can safely lift and what amount of activity could lead to lymphatic overload.

    As with many of our decisions, it is a difficult risk/benefit analysis with a lack of certainty as to outcome. Our decisions reflect our personal risk tolerance, and each of us has to decide for themselves. Jennie, I understand your thoughts about it. For you, the risk is just not worth it.

    Ksusan asked, "Shall we never rake?" (LOL) Well, on that risk/benefit analysis, personally, I don't rake** or shovel snow anymore, and I'm not too sad about it. On the other hand, I have flown non-stop between the east and west coast in the US, and from the east coast to Paris. I did not wear compression, but I understand others choose differently. I did decline a ~12-hour plane flight to Israel, and the possible risk of triggering LE was a consideration.

    BarredOwl

    [Edit: Raking is a seasonal activity where I live, so you go from not doing it at all, to suddenly doing a lot overnight. This is the kind of sudden increase in activity (and a repetitive activity) that can lead to overload. If you can do an activity regularly, and slowly build up, it may be different.]

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  • lexie2002
    lexie2002 Member Posts: 147
    edited October 2015

    Hi BarredOwl,

    I am leaving on a trip to Paris from San Francisco and I don't have a sleeve. The opinions on this are so confusing. I thought I might get one but I leave in less than a week. I called the place my PT doctor said I could get one, but when I called they said it would take minimum of 3 weeks! Wow, that's an awfully long time??? I don't really know what to do. I thought maybe I can get one over the counter just for this trip and then get one from the other place when I get back. I see my PT Person tomorrow to look again at my arm. I am at high risk.... I know she'll measure my arm again but when I'd asked her before what she thought she said it was up to me. Two different opinions, she said I could get it without the sleeve and I could get it by wearing the sleeve because I don't have it now. :( I'm thinking this STRESS is going to ruin this once in a lifetime trip.

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  • glennie19
    glennie19 Member Posts: 6,398
    edited October 2015

    NOOOOO, Lexie,, do not let stress ruin this trip. Paris is beautiful!!! It is my favorite city, and I hope you will LOVE it.

    Get measured tomorrow for a sleeve and gauntlet. Call around to medical supply places and see who has it in stock. My local place carries Juzo,, flesh colored ones. Maybe look around your local hospitals and see if medical supply place near one. Hopefully you can find one off the shelf, assuming your measurements are such that fit an off-the-shelf sleeve. If not,, there are online places where you can order and get overnight shipping.

    and yes,, flying w/o a sleeve is up in the air! (haha, see what I did there,)

    Loopy but if you feel more comfortable having one,, you may still be able to.


    other option: have your PT show you how to wrap. Then take supplies with you in case you have a flareup,, then you can wrap.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited October 2015

    Hi Lexie:

    I should note that while I am at risk for LE, I do not believe that I am at "high" risk (normal weight, 1 left node and 4 right nodes removed in SNB). I live in Massachusetts, so my flight was BOS-CDG (Paris). Your SFO-CDG flight is much longer (almost 2X?), and there seems to be more agreement about potential risk from longer flights.

    This is a decision only you can make for yourself. But since you are inclined to wear a sleeve and gauntlet or glove (it seems to be recommended to wear a gauntlet/glove in addition to a sleeve), see if you can succeed in getting them in a shorter time-frame by using some of Glennie's suggestions.

    For tips on garment fit, see this step-up page:

    http://www.stepup-speakout.org/proper_fitting_of_l...

    For my flights (which were shorter than yours), I adopted some of the travel advice from this interesting video from Memorial Sloan Kettering:

    https://www.mskcc.org/videos/air-travel-and-its-im...

    Here is my list of common sense travel precautions/actions (as a person who currently does not have lymphedema):

    Wear loose fitting, non-bulky clothing top to bottom, including sensible shoes. I fly flat also and wear no bra, because they bother me, and my theory is to keep up my circulation and lymph flow unimpeded.

    Wear light, removable layers to avoid overheating.

    I select my travel outfit and make my packing list well ahead, and pack in advance (not at midnight the night before).

    I try to get a proper amount of sleep in the days leading up to flight time.

    I stay hydrated in the days before and during travel, and don't skip meals before or during flight.

    Pack light and always check my suitcase (a lightweight spinner) to limit the time I have to pull/push it around.

    Limit the weight of my small under-seat carry-on bag, and get my husband to carry it whenever I can. Avoid using shoulder straps.

    Get an aisle seat when possible, so I can get up and walk at intervals and freely go to the bathroom (since I am hydrating). Push up and down on my toes while waiting in line for the restroom.

    Do not exceed usual activity or lifting throughout trip.

    Get up and walk periodically in flight and in terminals to avoid prolonged immobility and inactivity.

    Do range of motion exercises, hand elevation, pumping forearms, opening and closing fists, and deep breathing in my seat. (I try to do this subtly, like when the person next to me is sleeping.). Don't cross my legs, and try not to slouch (better breathing).

    Good luck!

    BarredOwl

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  • lexie2002
    lexie2002 Member Posts: 147
    edited October 2015

    WOW! Thank you so much for all the information. Even though I hadn't developed Lymphedema I was so undecided on whether to wear one or not. If I can't get a sleeve where I wanted I will definitely have to get something on my own. I know FIT is absolutely key.. I see the P.T. person tomorrow at 3:30 and after she looks at my arm I know she will give me conflicting opinions once again....... :( Late last week I noticed a sharp pain inside my arm between the wrist and elbow. It was a bit swollen but seems almost back to normal. It freaked me out. If it is or was something I wanted to get right on top of it! I really appreciate all you gals who give me help. God bless you all and BIG HUGS!

    Lexie :)

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  • lexie2002
    lexie2002 Member Posts: 147
    edited October 2015

    Hi Glennie19

    What do you mean by wrap??? You mean gauze.... I just know I'll feel better doing something. I do some exercises and manual drainage massage the P.T. person showed me. I guess I really need to do those more on a regular basis though? I'm bad. Between this and my hair thinning so bad from Arimidex and having no boob and gaining weight, I really feel too much of a mess to go somewhere like Paris but it's been a dream of mine. I think if I wait until I feel and look better I'll miss out. I plan on living a long,long time but you just never know.

    Thank you so much for your post to me :)

    Lexie

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  • carol57
    carol57 Member Posts: 3,567
    edited October 2015
    The studies on flight and LE risk are few and flawed, and the ones attempting to show LE risk from wearing compression are also rare, I understand. I would be interested in compiling studies and reviews of studies and then inviting anyone who would like to particpate, to read and discuss what turns up. I can put studies in a public dropbox folder; full study reports if available, and abstracts only if that's all we can find access to. I have a few resources who may be able to help get access to full studies if not readily available. I believe I could also find a person or two who would be willing to answer questions about study design.

    We have such smart women in this community, and many great critical thinkers. Would anyone like to join me in first, rounding up what's 'out there' on the flying and on the compression-causes-LE topics, and then do some study reviews and critiques? We could keep a running list in this thread of 'found' studies and articles, and those interested could collaborate separately through email, and by adding remarks to a review document we could create for each study, report, etc. We could ultimately write a summary of what we find, placing that in dropbox and linking to it from here, so anyone interested could read our comments.

    This could take a while, but it would be so worthwhile to arm (no pun intended) everyone who's wrestling with this question with whatever credible information has surfaced to date. I think the studies and articles are quite limited, so I don't think we're talking about a lot of work, but it would be interesting.

    I fly on average 125 flight segments each year, always in compression ever since a flight when I first returned to work travel after recovering from bmx/diep recon surgery. On arrival at a cross-country destination, I went out for an arm-pumping, heart-rate-raising walk, and eight hours later, I started to swell. I think I piled on the lymphatic load there, flying two long segments, probably not hydrating enough, and then doing an immediate bunch of aerobic exercise. I'm incredibly lucky that what materialized was initially crappy but has seemingly settled down to mild LE.

    I don't think I can knowledgeably speculate on whether I might have skipped LE had I worn compression on that one flight--that's the biggest question so many researchers would love to answer: what explains why some get it, others do not, when the 'some' may have low risk factors and the 'others' higher presumed risks. I may have been set up for LE with a lower-functioning lymphatic system but someone else with a robust system might circumnavigate the globe in an airplane and never get LE.

    At the World Congress of Lymphology last month, one researcher presented a study that concluded that a gene regulating potassium uptake seems to have an influence on susceptibility to LE after breast cancer treatment; those with reduced uptake have a higher risk. Another researcher then spoke up and said that people strugging with frequent seizures and others with high cholesterol often have potassium uptake problems, so it would be smart to look for LE incidences in those populations compared to people without those conditions. My antennae went way, way up at that comment, because I have high cholesterol, diagnosed as familial hypercholesterolemia, and my brother has a lifetime of seizure issues. My instant thought: is THAT my issue, a potassium uptake problem? I don't think the science is complete on that question, and I think my problem (if that opened the LE door) is more complex than just not eating enough bananas. But it's a reminder that there is a world of mystery on what allows LE to develop, and why even with similar treatments after BC, the LE incidence varies so widely among women. My guess is that the air travel 'trigger' is only a small part of the story for women who find they develop LE after a flight. It might have been the tipping point, but probably not the actual cause. Another tipping point might well have occurred had a flight never been taken.

    Anyway, I do plan to poke around for studies, probably not this week or next, as I'm still working on spiffing up my World Congress notes, and having trouble doing so, as recent rotator cuff surgery has send nerve pain into my hand, so typing is painful for now. I think I just used up my evening tolerance on this long post!

    Let me know here or via PM if anyone wants to go study diving with me.
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  • glennie19
    glennie19 Member Posts: 6,398
    edited October 2015

    Lexie: ask your PT about wrapping. No, it is not just gauze,, it is special wrapping technique. If you look at other threads on this forum, you will find out more about it. But if you don't have LE, and just want to be cautious,, that may be way more than you need. I was just thinking, IF you don't get a sleeve,, if you have wrapping as a backup, you might feel less stressed. Cuz I really want you to enjoy Paris, and I wanna hear all about it when you get back. Eat a croissant for me,, and yes, they are better over there.

    BarredOwl has great advice,, and I just want to add,, try not to put heavy things in the overhead compartment or find a nice tall strong man to do it for you. I check my bag and have a rolling backpack as my carry on, which I roll most of the time, and only carry when I absolutely have too. But I have LE,, and my "good" arm has a wonky shoulder and carpal tunnel,, so rolling bags for me!

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  • ksusan
    ksusan Member Posts: 4,505
    edited October 2015

    I'll see if I can pull a full-text copy of Graham, P. H. (2002). Compression prophylaxis may increase the potential for flight-associated lymphoedema after breast cancer treatment. Breast 11(1), 66-71.



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  • carol57
    carol57 Member Posts: 3,567
    edited October 2015
    ksusan, tomorrow sometime, I'll see about setting up a dropbox folder for sharing. I'll PM a link to that folder to anyone who asks for it (via PM).
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  • ksusan
    ksusan Member Posts: 4,505
    edited October 2015

    Thanks.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited October 2015

    I had five nodes removed, followed by a lot of radiation, including nodal. My PT, who is LANA-certified, feels I'm at low risk for LE. However, she did recommend that I have a sleeve & gauntlet for use while flying, particularly since my trips tend to be on the long side ( 7-12+ hours non-stop). The fitter at the breast center tried to put me into one with a fair amount of compression; my PT wants very light compression since I don't have LE and have what she considers a low risk of it. She advised using it for all flights and following good 'flight hygiene' (see Barred's) post above, which I've done for years anyway, minus the fist pumps.

    For those not traveling in business class, Economy Comfort can be a good choice if you can afford it, as it provides enough extra leg room that it's actually possible to do some lower body exercises in flight.

    I'm traveling at the end of the month and crossing my fingers that my arm comes back in the same shape as when I left! I still have a bit of swelling left from radiation and hope that resolves before I leave. :(

    Thanks to everyone for the great advice, insights and analysis. You're all greatly appreciated. Carol, sorry to hear about your RC. Good luck with your recovery.

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  • carol57
    carol57 Member Posts: 3,567
    edited October 2015

    I did create a folder in Dropbox, which is available to anyone with the link. I'm reluctant to put the link here, worried about robots picking it up, so if anyone is interested, PM me and I'll reply with the link. I put in the folder pdfs of a few studies (they are old ones) plus a Word document that contains one abstract (could not find the actual study), also very old, plus some links to several great online articles on the subject. I'm hoping that others will find more resources. My goal is not to build a case one way or the other (for compression) but to simply compile what's out there and then apply some critical thinking skills to critique the studies and resources in a way that opens the door to everyone making an informed decision on whether to wear compression in flight.

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  • lexie2002
    lexie2002 Member Posts: 147
    edited October 2015

    Well bad news.... I went to the P.T. person today and she said it looks like I have mild Lymphedema. :( I am so upset that I don't want to go on my trip to Paris now. She told me because of a diagnosis now that what I need would be covered but told me to go see if I can get an over the counter one for now for the trip...... Why in the hell did this happen? I can't take anymore of surprises from this damn CANCER!!!!

    She showed me some more manual drainage techniques. I still can't see that helping. Just rubbing a few places on my body is suppose to drain fluid?? Hard to wrap my head around. Sorry, I think I'm venting, but I'm am terrified now to fly now!! She told me I would have to wear this sleeve all day everyday and take it off at night??? Why would I have to wear it all the time??? I've read so many opinions and the more I read the more upset I get.

    She said she wasn't the one that measures me, it will be the people who sell it to me. She hopes that I will be able to fit into an over the counter sleeve. My arms aren't that big so I'm hoping I wouldn't need a special size. She was in a huge hurry today and even was a bit snippy which isn't like her. I didn't get to ask her hardly any questions. I wish my trip wasn't in a few short days. I feel like I don't have time to really educate myself. I just see me landing in London and Paris with one HUGE arm....

    Lexie

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited October 2015

    If your girl has a opening the night before or the day of your flight you could ask if she thinks if wrapping would benefit your flight. leave it on for a few hours after the flight. Then wear your sleeve home and see her as soon as you get home for a treatment to get things moving.Make sure it's not tight before you leave her office.make her rewrap ifyou have to.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited October 2015

    Hi Lexie:

    I am so sorry to hear you have just been diagnosed with LE so close to your Paris trip, and are having to deal with so much new information, some of which is not consistent. Others on the boards seem to practice manual drainage, so maybe just have faith that it will help you. I will be hoping you can find a very good fitting garment, and can enjoy your trip without incident.

    By the way, Carol57 just posted these comments in another thread:

    https://community.breastcancer.org/forum/83/topic/...

    BarredOwl






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  • windgirl
    windgirl Member Posts: 340
    edited October 2015

    hi ladies, just another update with good news, since my last post I have been to Peru, Israel, Turkey, and twice to Atlanta (from Miami) all with flights of course. I've not had one incident of edema knock on wood. While in Peru I spent 3 days at 11k feet altitude and was worried so I tried to keep my sleeve and glove on the whole time but could not last beyond the first night I arrived there. Still, nothing happened. As you know the planes are set to have cabin pressure of about 8k feet high which is why they say swelling could happen. Being in Peru I think showed me in my case that probably did not have an effect. During these trips, in the shorter flights, I forgot or avoided to wear my sleeve on six flights, but was ok. The one thing I did which I think prevented edema for me is that I pretty much assumed my left arm does not exist until I got on the plane, I did not carry a thing with it.

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  • ksusan
    ksusan Member Posts: 4,505
    edited October 2015

    Do people carry an antibiotic just in case LE/cellulitis flares during travel, or you get a cut? If so, any one in particular?

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  • carol57
    carol57 Member Posts: 3,567
    edited October 2015

    I have Keflex in my travel kit. I had to argue pretty hard with my doctor to get it as standby medicine at first, but ever since, no problem. I discard and replace the supply each year, and knock wood have never needed to use it. I also have topical antibiotic ointment and a little stach of band-aids with me at all times.
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  • glennie19
    glennie19 Member Posts: 6,398
    edited October 2015

    I have Cipro.


    wow, windgirl, you did some traveling! Awesome!

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  • ksusan
    ksusan Member Posts: 4,505
    edited October 2015

    I've put in an interlibrary loan request for the article in my post above.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited October 2015
    Thanks, Susan! That would be very helpful to read.
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  • tsoebbin
    tsoebbin Member Posts: 474
    edited September 2016

    Bumping this great travel thread.

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