NLN new position paper on risk: Buying the myths
I just got an email from an LE OT, concerned that the new NLN position paper on risk doesn't support compression for at risk people for flying or exercise, and I realized I hadn't read it carefully. They have two versions, a really long one for health care providers and a short version, that Joe Feldman, President of LANA wrote
So, this is from the long version: For at Risk People:
5. Compression garments: Consider the pros and cons of wearing compression garments during air travel before making a decision (see controversies below). Wearing compression garments during exercise is probably unnecessary unless you have noticed that swelling occurs during exercise, if exercise is more intense than usual, or in cases of significant over-activity.22 There is no clear guidance on this area of risk reduction; discuss your concerns with a lymphedema provider.
Controversies:
Air travel: There is little evidence that lymphedema is caused or worsened by air travel. There is a theoretical risk of swelling in the at-risk area on an airplane because of reduced cabin pressure. Stasis, or lack of move- ment, can cause swelling or venous blood clots during air travel for people with or without lymphedema.13 There are isolated case reports of people with or at risk for lymphedema who have developed swelling after air travel.23, 15 One study showed that physically fit women at risk for breast cancer-related lymphedema had no increase in swelling from air travel.24 Another study showed that prophylactic compression had the potential to make swelling worse.25 The NLN cannot specifically recommend or not recommend compression garments for prophylaxis in at-risk people who have not yet developed lymphedema. People at risk for lymphedema who decide to wear prophylactic compression on airplanes should work with an experienced garment fitter and should not self-purchase a garment. The person who chooses to wear prophylactic compression on an airplane should wear the garment several times prior to air travel to make sure the garment fits well and has no areas of constriction. If, while wearing a garment on an airplane, the swelling increases or the garment constricts, remove it immediately. It is recommended that people with a confirmed diagnosis of lymphedema wear properly fitting compression garments for air travel.
Well, I read study #25: and wrote something about it for SUSO--not up on the site yet--
An article in Breast 2002 that reported that compression garments are potentially harmful is profoundly flawed:
http://www.ncbi.nlm.nih.gov/pubmed/14965648
The author surveyed his own patients about flying and only 24% of his patients used garments with air travel, he followed his patients, most of whom had ALND, for 4-11 months and determined that based on self-reported survey, which he determined was equivalent to 2 arm measurements, and accurate for diagnosing lymphedema-which is not proven nor sensitive, that compression increased the rate of lymphedema. These women were very high risk: most with ALND, many positive nodes and radiation and the causality of developing lymphedema after air flight with compression, was not conclusively proven in this study.
So, if the NLN is throwing us under the bus--they also backed off on blood pressure readings in at risk arms, what are we going to do about it? I'll send them an email, but we've lost our official leg to stand on, re: myths vs. risk reduction.
GRRRRRRRR
Kira
Comments
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This is what I found when I researched the literature on the subject:
If you do a pubmed search on the topic, only three articles come up:
A pubmed search of "lymphedema and flying" results in three articles:
http://www.ncbi.nlm.nih.gov/pubmed/19927904
From Lymphology, 2009, a woman with lymphedema measured her arm with bioimpedance before and after 20 flights, and her measurements worsened with flight
An article in Breast 2002 that reported that compression garments are potentially harmful is profoundly flawed:
http://www.ncbi.nlm.nih.gov/pubmed/14965648
The author surveyed his own patients about flying and only 24% of his patients used garments with air travel, he followed his patients, most of whom had ALND, for 4-11 months and determined that based on self-reported survey, which he determined was equivalent to 2 arm measurements, and accurate for diagnosing lymphedema-which is not proven nor sensitive, that compression increased the rate of lymphedema. These women were very high risk: most with ALND, many positive nodes and radiation and the causality of developing lymphedema after air flight with compression, was not conclusively proven in this study.
The study most often cited to disprove need for compression with air flight, is the dragon boat study from 2010:
http://www.ncbi.nlm.nih.gov/pubmed/20180016
These women were assessed by single-frequency bioimpedance, 2 weeks before travel, on arrival and 6 weeks after travel. Biomimpedance is "not intended to diagnose or predict lymphedema" and is most useful in demonstrating excess intracellular fluid in latent stage lymphedema, and per researchers and the manufacturer, the device is of limited clinical utility when visible swelling or fibrosis are present. In this study, 5% of women who traveled the longer distance developed elevated readings. This study, using a measurment device that should only be used in conjunction with physical exam, symptoms and ideally arm volume measurements, was insufficient to conclude that compression is not helpful in preventing lymphedema, and per the criteria of this study at least 5% of the women, who were athletic and fit, did develop lymphedema with long-distance flights.
So, the one study that purported to prove that compression harmed women at risk for lymphedema is ten years old, and based on self-reported swelling or insufficient measurement and of the author's 293 patients, only 50% had flown, and of these women, only 24% had used compression. The author failed to prove compression was harmful to his 34 high risk patients. And, he concluded that longer flights might pose more risk to his patients.
I did email the NLN and Joe Feldman, and expect not to be received kindly. But I've got to try.
Kira
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I cannot understand any argument against compression. Really. It's so dangerous?
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We are talking about an environment in which many women have used potentially life-altering types of chemo/rads, 5 year survival statistics, side effects, etc, and compression is considered dangerous? I won't bore you with my pharmaceutical-profit/ medical insurance responsibility conspiracy theories. I'll just say we LE patients are a non-profitable, costly patient base to those who look at numbers only.
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And the study they cite-- #25-- is beyond ridiculous. One surgeon talked to some of his patients, seriously. That is science??
I got one response from the NLN MAC, a very experienced PT who runs a training course, who will NOT give compression to at risk women, yet says there will not be a good study on compression vs. no compression---and yet, that's exactly what this person doing by refusing to give compression to women whose doctors are requesting it. The response was that a study would be unethical.....
Binney says about the NLN: "What support group SELLS their information to patients??"
KC, in my state you can't get custom unless a fitter from another state travels in--and the person who responded to me used the rationale that they would only use custom compression.
And yet, the entire new position paper on early diagnosis of LE is based on the Nicole Stout study, with no control arm, where she used 100% off the shelf jobst sleeves and gauntlets. Caused a whole movement of early diagnosis. So compression wasn't dangerous for those women with early post op swelling, undetectable except by perometer, essentially at risk women. Hmm.
I'll buy the conspiracy theory. And the sheer stupidity of it all.
Since 75% of the LANA board are also the NLN MAC, there's just a tiny herd mentality going here.
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'Twas post-flight discomfort that drove me to an 'NLN-designated comprehensive LE center' for an LE evaluation, where their highly sensitive perometer found my at-risk, non-dominant arm to have 10% greater volume than my non-affected, dominant arm, i.e. an LE diagnosis. I had arm/truncal ache only after flying at that point. Was it the flying that triggered my LE, which fortunately I was able to catch pretty early and has responded well to MLD and an off-the-shelf sleeve/gauntlet? I'll never know, but neither will I ever forget the horrible, horrible feeling in my arm and what I now know to be my truncal LE spot, in that first flight when I had no compression on. I could not see any swelling, but it felt like my body was exploding. I did not know anything about LE care, but instinctively I spent the flight with my right hand compressing my left arm, and my arm pressing tightly against that truncal spot.
Would compression on that first flight have prevented my LE? I'll never know, of course. But it sure seems like my anecdotal experience is at least as worthy of consideration on the question of flying/LE risk, as is the 'study' Kira cites.
On BP and similar issues, whatever happened to erring on the side of caution?????
Carol
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My hand LE first manifested during and following a flight when I was wearing a sleeve (preventative) and no gauntlet.
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Kareenie: we have a saying on these boards: "denying our reality"
I've gotten some interesting responses to my group email to LANA--a couple of the board members agree that the studies are insufficient to recommend a change in the NLN position.
The NLN has been silent.
When I fly: even wrapped, I swell. I always had ankle swelling when I flew before LE.
We put up some information about it on stepupspeakout, but will have to update it to reflect this new controversy:
Hope your hand is doing well, and I'll keep being a pain in their "insert body part" to let them know what our reality is.
Kira
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Kira--Thanks. Keep the pressure up.
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I just received the snottiest, nastiest email from the NLN MAC representative, telling me to back off, they're the experts.
It implied they are the only experts in the world, and ironically, Nitocris sent me a review of the same article by Neil Pillar for a UK LymphLine newsletter, where he agrees it's garbage.
However, some thoughtful people from LANA sent an article that again attacks risk reductions, using the same tired papers. They're willing to discuss the issue, the NLN told me to f@##k off.
I had a great weekend in Stowe and spoke to the Vodder therapists and met with Anna Towers MD, head of the CLF, who said she relishes professional debate. Clearly, not the NLN.
Color me disgusted. But not surprised, unfortunately. As Binney said, any support group that sells its information to patients....
Kira
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I love you, Kira. Thank you for standing up and affirming our reality.
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Kira, what is the next step to continue to press NLN? Do any of the major LE education providers, like Vodder, plan any kind of rebuttal to the NLN position?
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Carol, I was told that any further discussion of the issue was "non-productive": however, I wrote back to clarify that 1) the people who wrote to me continue to utilize garments for women at risk, using clinical judgement--against their published position paper, 2) they're trying to hide behind evidence based medicine when the article doesn't support their "new" position and is beyond poor quality, and 3) the information they tried to use re: radiation oncology shows poor understanding of how radiation is planned and delivered.
And that hostile emails and lack of professionalism doesn't further the kind of debate that actually educates anyone.
The exceptionally snotty comment came from a third party, who I did not email, and I told them that it was hurtful, and violated my confidentiality.
And that I'd like to believe we're all on the same page, with patient care as our goal.
Heard a lecture from Anna Towers about how NONE of the international goals for LE have been met, and told them that this kind of attitude won't get us there.
Did not say what I was thinking: and I can assume you know what that is.....
Get your heads out of your butt and actually give a sh@t about patients
Kira
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Well I got LE in my non-node arm just hours after a flight with a prophylactic compression sleeve. Did the sleeve cause it? Was I prone anyway having both breasts removed ? Was I at greater risk having LE in the other arm? All I know is, I flew and got it bilaterally. I flew a year later, again properly compressed...and had cellulitis w/in 24 hours.
Now I take the train.
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Moogie, I stirred up so much anger by questioning the quality of the study they use in the new guideline. Really nasty emails. But there is no study to prove the safety of flying uncompressed, and no study to show that compression causes LE--just clinical experience and beliefs.
I told them: you can't call it evidence based, if there's no evidence.
And, an entire early diagnosis movement has been created by Nicole Stout putting ALL post op women in off the shelf Jobst sleeves and gauntlets--why was there no fear that compression was harmful in her study?
The vitriol that I created, by just asking them to clarify their position and not use garbage papers to justify a change in their position paper was intense: and I was told that the NLN MAC are "experts"--really?-- the new member is a surgeon who does lymph node transfer, another cardiologist doesn't list his credentials. Did they corner the market on lymphology expertise?
I did hear from the head of a training school that they've seen compression cause LE: but I'd question--is it a temporal (it occured at the same time) or a causal (it caused it) association? So often it's just temporal and causality is applied in error.
What a bunch of nasty people on the NLN MAC, and they sure don't support me....
Kira
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Well I have my own theory with regarding to risk reductions and " corporate entities"---I have come to feel that there is concern by many that women would defer treatment if the understanding of LE risk were fully known, publicized and understood. Pre-emptive ( SP?) treatment would need a discussion with the patient, possibly garments, possibly a meeting with an Le therapist for massage techniques, ....and a lot of women would freak out after already having a BIG C experience. WHAT MORE? SERENITY NOW!!!!
The bottom line is that there is not enough information. So why can't anybody simply say" " uh well...we don't dang well know..." , admit our ignorance, and commit to doing studies that have rigourous guidelines. If there are more early detections in all cancers due to advances, there will be more nodes taken for biopsy, and a greater LE at risk population for all kinds of conditions.But people need to stake out their territory, I guess.
Take a slow walk through Walmart in the Deep South. Rare is the weekend I do not see someone with lower body LE. And I know they probably do not understand why their ankles are hidden under a giant roll of tissue. More empathy is needed by corporate entities, and it is AOK to say " WE DON'T REALLY KNOW".
Um...cause...we....don't.
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Wow! Thanks for the post. I find it absurd. I know many airline stewards. They all have a 2 size range because of in-flight swelling. My aunt is one of them. She always leaves in the smaller size and comes back in the larger. I for one am glad my PT is a huge fan of compression. I am borderline for LE depending on who's standard you listen too. I'll take my sleeve and raise it high thank you. Well maybe not that high yet. Give my PT another month.
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Fujiimama, thanks for the support. The NLN won't budge and were exceptionally rude about it, but in this insular world of LE "experts" the word got around, but on the internet, it's their stupid position paper where they cite the worse article ever, to support their "position".
Very interesting about the two sizes.
Our amazing webmistress: Jane/Onbadboob, has flown a lot, in comercial and private planes and said the barometric pressure changes made a huge impact on her. She was in a study at NYU, where she was, according to the grad student, like the 120th patient to get LE after air flight, yet the head of the study doesn't "believe" in compression for air flight. She, of course, doesn't have LE....
So glad you're getting early treatment.
Kira
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Since LE is the gift that keeps on givin', having some risk reduction statement AT ALL seems warranted. So fine: if THEY do not believe prophylactic compression is needed or helpful---then there should be some statement relevant to flying about massage, movement in flight, recording your measurements before to have a baseline for early detection, watching for cellulitis, having an RX on hand...
The window for developing LE after a flight is also a consideration in a study. How far out from the flight can it happen? In my non-node ( used to be good arm ) side, it developed w/in 48 hours after a flight in my fingers...as an early cellulitis and obvious swelling. Like little link sausages. POOOOF! THERE IT IS!!!!!
I knew what was happenning, carried an RX, and saw my doctor when I got home . For the return flight I wore an Isotoner glove. It managed colateral damage and one cycle of antibiotics was adequate.
LE is all about trying to minimize collateral damage, and those of us in the trenches realize this. Sometimes the medical establishment is so " cure-focused" they miss the boat on the patient's concerns. WE KNOW THERE ARE NO SURE THINGS IN LE TREATMENT: we want support in figuring out how to navigate the uncertainties and still live our lives as smoothly as possible. Being prepared for emergencies is the best we can do- and we need relevant studies to help us do this effectively and with confidence.
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Moogie, beautifully stated!
Thank you!
Hugs,
BinneyEdited to add: the NLN does not have patient representation on their boards and committees, so it frequently happens that they entirely miss our "in the trenches" perspective. Some of us continue to argue for inclusion, but it can be difficult to penetrate a long-standing institution. Besides, the patient perspective can sure be "messy"!
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Agree, Moogie, you nailed it.
The NLN keeps patients at arm's length--they have to pay full price and pass an entrace screening to even attend the NLN conference.
And, they honest to goodness wrote to me that they are the "experts"--come on!
This kind of sums up the NLN for me: when Binney and I were in the Washington Post, Nicole Stout wrote a letter to the editor stating that LE is always painless. And at the time, the NLN had a facebook page and they posted in support.
So, I wrote a letter to the Washington Post that LE is painful and Binney wrote to the entire NLN Medical advisory committee: and they wrote a paper retracting their support for Nicole Stout and admitting that LE is painful and posted it on their facebook page--and then TOOK IT DOWN.
To my knowledge, as they bemoan their lack of growth, they've never put up another facebook page. And they assigned blame to a young staffer for the entire incident.
And Binney and I were labeled as trouble.
Do no harm. There are more gray areas than black and white in LE and the NLN didn't corner the world experts, just the ones who want to serve on a board for no pay.....And one of the their experts does lymph node transfer surgery....
Kira
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Since LE is considered a " dirty little secret" when resulting from cancer intervention---there is enough to battle for our population. I maintain that patients will be less " freaked " out if they know the risks and precautions. Trust me--if I found out about LE AFTER I got it bilaterally-----I would have been looking for a kind of emotional "frontier justice" from my doctors because I would have felt mislead, and unprotected. I was lucky to have a team of forthright practitioners---who did not think it would be an issue---but were very helpful in providing me with any guidance/MLD education with an LE therapist---before I ever had LE. It was empowering. At a time when frankly, most of us feel about as powerful as a leaf in the breeze.
As far as you gals being trouble: you are the best kind of trouble. And they are foolish for not using your combined talents/grassroots experience to support the overall effort. ALL EFFORTS SHOULD BE GOING TO SUPPORT VIABLE WELL CONSTRUCTED RESEARCH STUDIES...that are not anecdotal in spirit.
HMMMM: how well would a diabetes study be considered if it used the same lack of criteria as some of these noted papers on LE? " Well, 27 patients I treated felt pita bread is good for their blood sugar at 3 pm..."
DUH.
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Great post Moogie. Bring on 'trouble'.
I wish someone had acknowledged my 'fat' upper arm when I pointed it out. Rather than say, "no, that's normal", (surgeon's nurse) or "no, that's not too bad" (rad onc.). Sheesh!!! I was a leaf in the breeze.
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The apples-to-oranges-to-kumquats nature of many LE studies allows 'experts' and practitioners to choose whatever study outcome supports their opinion, and there is no shortage of low-enrollment, short-follow-up studiess to cherry pick from. Wonderful point, Moogie, about the need for quality research.
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The LE "experts" ignore us at their peril. Many cancer patients, and I think especially many b/c patients, are educated and feisty. Patting us on the head and telling us not to worry because they have everything under control is NOT going to work with us. Too many of us were given no information or outright incorrect information about LE, our risks, and preventative measures. We're not inclined to trust the "experts" with our own well-being quite so easily again. Once burned, twice shy - and a lot of us have been burned with LE.
Reminds me of the history of b/c when the patients got feisty in the 60's and demanded a stop to the one-step procedure where they did the surgical biopsy, and with the woman still under, tested for cancer then did the mx immediately. Those women went into surgery not knowing whether they'd wake up with a breast or not. Shirley Temple Black committed medical heresy by demanding a two-step process. Biopsy first, then with results in hand, she could take the time to research her options. Seems pretty reasonable, no? Not to doctors. She and other brave women like her were pilloried by the medical community.
If you're interested in that kind of history, there's a fascinating book which I've recommended before, "Bathesheba's Breast - Women, Cancer, and History" by James Olson. It's a history of breast cancer dating back to earliest times, and makes for riveting reading. The latter part of the book details the evolution of the relationship between b/c patient and doctor, and the impact that feisty women had when they started questioning doctors and demanding a say in their own cancer decisions.
I am reminded so much of the history recounted in that book when it comes to our struggles with the medical community over LE. I can't believe that 50 years later the medical profession is still telling us not to worry our pretty little heads about things like LE - they're the experts on the subject and we can't possibly understand.
Don't count on it, buddy. We're not going away.
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I call them The Silents.
Another demonstration of the evidence of the ugly failure of those females with medical training who have had breast cancer and who should be responding to their fellow patients and speaking up themselves.... but aren't doing it. Whether it is the failure to provide educated truth to patients about the effects of treatment on sexuality or it is about LE, their m.o. is identical.
AlaskaAngel
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