Physical Activity and Lymphedema

 This is the the information from the bc.org blog on exercise and LE:

Find out what lymphedema is and what to look for. The PAL Trial at the University of Pennsylvania has given us evidence-based research that exercise, specifically strength training, is good for women who have and who are at risk for lymphedema. 

Well, the photo on the site shows women lifting weight with NO compression garments. While Dr. Schmitz has done valuable research, her PAL site is misleading, with the statement that weight lifting prevented lymphedema in women who had more than 5 nodes out. 

A more balanced and accurate interpretation of her study can be found here:http://community.breastcancer.org/forum/64/topic/764461?page=1#post_2288321

Kira 

Wowsers! Thanks, Kira. I hope some of the women here who have experience with this will weigh in. Nice idea for a blog, but the points to keep right at the front of our minds are those that make it "swell safe": low intensity, increase very gradually, no pain or fatigue. And if you opt to follow the recommendation for the added protection of compression, have the fit checked out by someone with experience.

http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

Hand protection along with the sleeve is recommended:

http://lymphedivas.com/lymphedema/gauntletandsleeve/

Even more to the point, I trust that bc.org will be promoting the recommendations of the National Lymphedema Network concerning screening and measurement for EVERY woman who is diagnosed with breast cancer. They include solid patient education as well as objective measurement before any treatment begins and at every doctor visit following.

http://www.lymphnet.org/pdfDocs/nlnBCLE.pdf

Pushing the importance of exercise without full acknowledgement of the risk of lymphedema and clear guidelines for lowering that risk is incomplete and leaves us at the mercy of these unwanted consequences. Because exercise is so crucial to our overall well-being, a balanced approach and emphasis on safe parameters for increasing our activity levels should be the primary concern.

Thanks, bc.org, for thinking of this important aspect of recovery. We're depending on you to present the whole picture for our protection and on-going quality of life.
Binney 

A blog from Sherry Lebed Davis, who created the Lebed Method, that is both safe and effective for people with lymphedema::

Sherry wrote on Aug 19 09 at 8:08 AM

We have all read by now the wonderful new study on Weight Lifting and Lymphedema and if not, look at my blog ‘bug bites and Lymphedema" However still be careful. I have Lymphedema in my left arm and hand and tried weight lifting with an exercise specialist who is a Lymphedema expert. (which is what you should do if you decide to weight lift) We started with small amounts of weights at low reps, which was good. As we increased the weights and reps my arm was not happy about that and began to swell. We eventually had to back off and go to the lower weights and less reps. So just know that everyone is different and to make sure you are with someone who knows what they are doing.

Any resource for physical activity and lymphedema should have the link to Lebed's site:

http://www.gohealthysteps.com/

Member,

VERY well-said!  Thanks for this post!

Kira,

Thanks for starting this thread.  When will they ever learn?

Dawn 

Hi everyone...

A couple of self-absorbed questions about all this

I had many lymph nodes removed yrs ago. I've been lucky to only have cording symptoms once every couple of years. My LE physical therapist says that I don't have to wear a sleeve when doing the stretch/strength training routine she prescribes for me, so I've never worn a sleeve during workouts with 3lb weights... been doing this for 15 years and my arm's strong and solid. As far as I can tell, NLN guidelines wouldn't disagree with what I'm doing, but was just wondering what you thought...

The other question I have is -- has anyone done the LIVESTRONG program?  I know that it's different than PAL -- but how? Is LIVESTRONG a safe program to participate in, or should I avoid? Let me know your experiences with them...

Thanks!! This world of LE and risk can be confusing sometimes...

Lisbeth

Why did not bco use Binney and Kira as the go to experts? Are they not aware of these women?



Of course I know that answer but it's disappointing these women (there may be others) still have to sharpen up or correct bco's lymphadema advice.

Just wanted to throw out there that we must all advocate for way more research on lymphedema.  My PT really indicates to me there is just so much still unknown.  One of those unknowns, according to her, is whether wearing garments in those currently unaffected actually has preventative benefit. Some studies indicate they may even precipitate LE (seems to be more a question of fit, but I think fit is a seriously moving target, at least it was for me).

There are also so many other aspects to exercise. Deep breathing, self-massage and stretching...it's multi-faceted.

We just need more research and info.

Member, great point re: normalizing the look.  I don't have LE, but I wear my sleeve flying.  I got stopped at an airport about it recently.  Truth is, you just don't see many of them.

Hi all - my lymphedema therapist has talked about the weight lifting study too (in a positive way) -- so I haven't heard about this weightlifting agenda. What's the hidden agenda, just so I understand?  Just want to be safe... as always   Thanks!

They un-pinned the blog!: the hidden agenda is that Katie Schmitz has based all of her research on the hypothesis that weight lifting is beneficial for lymphedema, and has taken a study that showed no POSSIBLE harm and turned it into a study that supposedly showed that weight lifting can cure or prevent LE.

The only research that tends to get published and get publiciity is positive research--studies that show a cure or benefit. She had a bias to prove that weight lifting was safe for women with lymphedema--and she did show that, but she has allowed and put on her web page, data that suggests that weight lifting will prevent and cure lymphedema. Her study was actually very small--she screened thousands of women and ultimately 77 participated in the weight lifting

The actual conclusion, from the published article is:

In conclusion, the results of this study reduce concerns that weight lifting will worsen arm and hand swelling associated with lymphedema in breast-cancer survivors. These findings support the potential benefits of a slowly progressive weight-lifting program in women with breast-cancer–related lymphedema, in conjunction with appropriate use of compression garments and close monitoring for arm and hand swelling.

No proof that weight lifiting either cures or prevents LE: yet the article was widely cited in the popular press as showing that weight lifting can cure or prevent LE. And on the PAL web site, she states--http://www.penncancer.org/physical-activity-and-lymphedema/

In fact, the study showed that progressive weight-lifting might be better than not exercising an arm at risk for or with lymphedema after breast cancer, and may actually play a role in preventing the condition. Several key findings from the study include:

50% reduction of the likelihood of lymphedema worsening among women with lymphedema
70% reduction of the likelihood of arm swelling increases among women who had 5 or more lymph nodes

I think that Katie Schmitz used to work with Linda T Miller, who also publishes research from U Penn. Linda T Miller runs "weekend" classes for lymphedema, is not affiliated with any major training school, calls herself "doctor" yet only has a bachelors degree-- http://www.breastcancerpt.com/about-linda-miller.html Linda T. Miller strongly believes in weight lifting as beneficial for lymphedema.

I couldn't find any papers they published together, but Linda T Miller has published with U Penn researchers:  http://jco.ascopubs.org/content/27/3/390.long-

There are excellent articles that show that researchers will create studies that will prove their hypothesis: Great article "The Truth Wears Off"--http://www.newyorker.com/reporting/2010/12/13/101213fa_fact_lehrer

Publication bias:Jennions, similarly, argues that the decline effect is largely a product of publication bias, or the tendency of scientists and scientific journals to prefer positive data over null results, which is what happens when no effect is found.

"Cooking the data":According to Ioannidis, the main problem is that too many researchers engage in what he calls "significance chasing," or finding ways to interpret the data so that it passes the statistical test of significance-the ninety-five-per-cent boundary invented by Ronald Fisher. "The scientists are so eager to pass this magical test that they start playing around with the numbers, trying to find anything that seems worthy,"

"Selective reporting"The problem of selective reporting is rooted in a fundamental cognitive flaw, which is that we like proving ourselves right and hate being wrong. "It feels good to validate a hypothesis," Ioannidis said. "It feels even better when you've got a financial interest in the idea or your career depends upon it.

So, how did a study that showed that weight lifting might be beneficial for women with lymphedema morph into showing such a robust benefit that you could argue that all women with lymphedema or more than 5 nodes out SHOULD be weight lifting???

Overstating the results, IMO.

I think it's great to show that women with LE can carefully strengthen, but that's all the study showed, and for some women, weight lifting will worsen their lymphedema, but other exercise will not. 

So, this is awfully long, but I feel like she created the PAL trial with an agenda to prove that weight lifting was good for LE, and she proved it didn't harm women with LE, but then this huge spin occured and now the message is that weight lifting is both curative and preventive.

So, that's my incredibly long winded issue with the bias.

And having worked in academia: what gets published and gets you promoted are game changing studies. Not ones that just show no harm...

I think women who have LE or at risk should be encouraged to exercise, but I don't think weight lifting is the one and only exercise that benefits us--for me, any theraband or weights make my latent cords show up and aggravate my arm. Other exercise is fine.

Kira

I think it is important for women to exercise and to not be afraid of exercise.  We just need to be smart about it and listen to our bodies.  Don't panic!  You are better off doing yoga than not.  You may want to see a certified lymphedema specialist to learn how to be as careful as possible.

Weight bearing exercise is important for women.  As we age we lose both muscle and bone.  I for one have a heightened risk of bone loss.  So I think we should be careful about threading the needle.  Many women at risk for or who have LE can do some weight lifting if they are careful and especially if they wear compression garments.  Some women really, really can't.  This is an individualized thing is all anyone is saying. 

Just to add I have been taking my arms along to the gym for over a year, just letting them tag along and see what happens: I've been just on the leg machines: stepper, treadmill, recumbent bike, elliptical with no arms, and I only started arm exercises very recently, fifteen months out from finishing treatment. I do tend to be the over-cautious person...  Well, the sky didn't fall and my arms didn't explode and now I want to lose the chicken wings on my upper arms as that's where the LE is mostly. I always do a really good stretch-out afterwards.