10 to 90 percent? Are you kidding me!

cookiegal

The latest study on LE here on BCO says 10 to 90 percent of women get LE! I can not imagine any other medical issue where the stats are so random.

They may as well say some.

ruthbru

I noticed that too. Gives me a new respect for the weather forecasters, who at least make up a number and stick to it. With 10 to 90%, I'm not sure if I should go on my merry way, or rush to the emergency room every time I get a papercut. Not helpful!

coraleliz

Probably a mistake. But the real incidence is unknown & believed to be largely undiagnosed & unreported. So maybe there's alot of stage 0 or latent LE'ers out there. 90% is HUGE though. Too tired to read the study associated with the moderator's post. I'll have to revisit it.

Moderators

cookiegal, we'll ask the editorial team to take a look at clarifying those numbers. There is an explanation of that "10 to 90 percent" in the article How Lymphedema Happens on the main Breastcancer.org site. It says, in part:

"Individual studies have reported that as little as 10% up to as many as 90% of women develop lymphedema after breast cancer surgery and radiation therapy. Such a wide range of results may be due to the fact that: (a) researchers have used different ways of defining and then measuring lymphedema, (b) many of these studies have involved small numbers of patients, and/or (c) many studies were done with women who had a large number of underarm lymph nodes removed, which used to be standard practice. Today, many experts estimate that the range is probably close to 20-30%."

• The Mods

Binney4

Mods, exactly. There are no hard statistics on incidence because the assorted studies have used assorted criteria for diagnosing the LE. Until they standardize diagnostic criteria we won't have reliable numbers. Also missing from all that information is the incidence of truncal LE, which is generally not counted in such studies. Leaves us scratching our heads, for sure!

The good news is that the American Lymphedema Framework Project (ALFP), headed by Jane Armer, is consolidating all the available information in order to present a single, unified picture as the first step in designing a Best Practices document for the United States that will tell all our doctors how to diagnose, treat, and follow-up on LE--YES! There's a Canadian LE Framework Project as well, and the UK's Best Practice document is already finished. You can find a link to it on the right-hand side of this page, called "International Consensus: Best Practice for the Management of Lymphoedema":
http://www.stepup-speakout.org/

That's what this article on BreastCancer.org is actually about: Jane Armer's review of the medical literature in preparation for writing a Best Practice document that will be composed by a committee of distinguished doctors from virtually every medical specialty (because the lymph system affects our entire body). The bc.org review is unbalanced, though, because it places too much emphasis on exercise as a management tool, making it appear that weight lifting is part of LE treatment, which it sure isn't. The evidence shows that for some (most?) women with stable LE, weight lifting done very carefully, increasing slowly and incrementally, will not make their LE worse. Women whose LE is not stable, or whose response to even very low-and-slow weight lifting is to flare, were not included in the study because--well, because exercise makes things worse for them.

The treatment for LE is CLT, not weight lifting. Weight lifting tones and strengthens, and it's a very good thing for those who are able to do it with knowledgable supervision and no adverse effects. Strengthing your arms can give you the freedom to lift things and use your arms without stressing them and causing a flare. But it's not a treatment for LE, nor should it be portrayed as being on a par with proper treatment by a well-trained lymphedema therapist who performs CLT. Certainly it is not for every woman with LE, because there are clearly some for whom it is contraindicated. So, a bit misleading there, even potentially damaging if anyone takes from it the idea that it's part of standard LE treatment.

As to the estimate quoted above that "many experts" think of as between 20-30%, Jane Armer herself has studies showing a much higher rate of LE among women treated for bc, but she used a range of diagnositic tools to determine that.

Interesting stuff! We sure could use more research!
Be well,
Binney

carol57

I have had the privilege of seeing Jane Armer present her research findings, and I believe that her analysis suggests that the overall incidence of LE after breast cancer treatment is around 40%, not 20-30%.  

Mods, is it possible for you to approach Dr. Armer and ask her if she might write an article explaining the dilemma of interpreting LE risk after BC treatment; her own evidence-based observations; and how to interpret LE-risk studies?  Her credentials and credibility are beyond question, as as a woman with arm LE, she knows quite personally why this question matters to us so much.

We all want accurate LE risk information and counseling to be made available to patients receiving a BC diagnosis, as too many of us were given none of that information and missed opportunities to make informed choices and engage in risk-reduction practices.  We all want to help ensure that future BC patients are not stuck with what is today a haphazard approach to enabling patients to recognize and manage their LE risks, and even to recognize and respond to early LE symptoms.  

I can think of no better person to put this all in perspective than Jane Armer.  I know she is engaged in many, many projects and time must be precious for her but still...if BCO asked...what a wonderful service to our LE community if she could find time to put LE risk in perspective for all of us.

Carol

kareenie

Hear, hear!

lionessdoe

Yeah! Well please check out the topic 'disclosure'. We weren't exactly given the true stats on radiation either. I'm glad we are moving forward on spreading the word about lymphedema. But I think we have just begun to disclose the truth about the entire oncology industry and all that has been suppressed for so long. Unfortunately, the recognition of an entire new medical genre for treatment of survivor issues appears to be the motivating factor. It always boils down to money I guess! Keep digging and chipping away at the hidden ugly truth and shine a light on it! I'm pissed and I feel so duped!

cookiegal

Just to make it clear, I was not slamming the writing or the study, just the state of research.