New LE Position Paper

NatsFan · July 2011

The Avon Foundation, in cooperation with the National Lymphatic Disease and Lymphedema Registry, the Lymphatic Research Foundation, and NLN, convened an expert panel on LE. The panel just released it's White Paper - "Recent Advances in Breast Cancer-Related Lymphedema Detection and Treatment." I haven't had a chance to review it thoroughly yet, but it's nice to see yet another reputable group put LE on the table and state in no uncertain terms that surgeons and oncologists need to take their heads out of the sand about LE, and that they have an affirmative duty to monitor patients for LE, educate patients, and refer patients as appropriate for treatment.

http://www.avonfoundation.org/assets/le-meeting/le-white-paper.pdf

kira66715 · July 2011

Mary, what a great document!

Thanks.

Stanley Rockson, of Stanford, helped write this, and he's doing some really exciting research.

Kira

BoobsinaBox · July 2011

Mary,

Thanks so much for this document. So many lives could be made easier to live if the medical and insurance communities take this seriously!

Dawm

kira66715 · July 2011

Okay, overall I think this is a very good paper, Binney read it closely and had issues with

1) Use of bioimpedance to diagnose LE: it's clear they're pushing that, as they write that it's FDA approved and had a CDT billling code and by the time LE is visible it's "too late"--I sure do agree that we need early diagnosis, but bioimpedance is only helpful with serial measurements (why do I see the long hand of the L-dex manufacturer here?)

2) They let stand the: weight lifting--without use of a compression garment if there are no signs of LE--will prevent LE by 70%. Now, that was only in a small subset of women witn >5 nodes, and the study wasn't powered to make that conclusion.

Just saw a patient today who is very, very fit, just had one node out and provoked truncal and breast LE by doing push ups. So, I worry when I see that 70% reduction, without further explanation, in this document. In her case, weight lifting triggered LE. And I met with her for an hour to try and help her figure out how to go forward.

So, I read this and thought it was great, but Binney read it closer and raised those two concerns. I still think it's great, but the NLN just loves the Schmitz research, and gave her an award at the last conference, and I see their influence in this paper.

So, it's very very good, but a couple of issues.

Kira

kira66715 · July 2011

Okay, I emailed one of the authors--an was informed that bioimpedance really should, in their opinion, be the method utilized in evaluating for lymphedema.

That's why they're the expert--and very generous with their knowledge.

Kira

computermouse · July 2011

can i ask a dumb question? is that where they put monitors on your arm and measure the lymphatic flow? I had that for the first time the other day and was blown away when told that my lymphatic flow is normal and that maybe I have some other type of post-mastectomy edema (ie not lymph related), brought on by scar tissue and blockages. I had never heard that there could be other categories of arm swelling for women with breast cance.r....

Binney4 · July 2011

Computermouse, that is not a dumb question, but I can't say the same for the conclusion they offered you.

You're right -- with the L-dex bioimpedence device they put the little gadgets on your arm. Painless, quick. The only problem with it is that folks who are using it don't "get it" about what it is they're measuring. It measures the amount of tissue fluid volume. Not the lymph flow, not the stage of LE, not even whether you have LE or not. It is NOT a diagnositic tool, but a monitoring one. There are no standard numbers that show that you do or do not have LE, but only (over time) whether you have more or the same amount of tissue fluid volume.

The way it SHOULD be used is to monitor your arm consistently with every visit. The first reading tells them nothing, it's the trend they're supposed to be looking for. If the next few visits show gradually increasing tissue fluid levels, then it's a good guess you have LE. Or if you have LE already, it can tell you how you're doing with control of stagnant fluid.

Here's a danger that we're all going to be facing if this method of measurement becomes popular: if they try to diagnose LE using this machine, some of us with LE (especially well-controlled LE) may no longer be eligible for insurance coverage -- especially if they start telling us our LE is not LE but causd by scar tissue and blockages. Scar tissue can create blockages that cause LE. The fact that the blockage is caused by scar tissue doesn't make it some other kind of swelling -- if the lymph fluid is blocked, for whatever reason, you have LE. That, in fact, is what a lot of truncal LE is, and some of the arm LE too.

Of course there CAN be other kinds of swelling -- like swelling caused by blood clots, for instance, or kidney failure. But that's another whole diagnosis.

Please, c-mouse, NEVER think any question regarding LE is stupid -- you're one smart lady to be asking questions! Kiss

Hugs,
Binney

kira66715 · July 2011

Computer Mouse, we had heard from a researcher at NYU that she found bioimpedance insensitive, and I heard a lecture from the L-dex people and was not impressed, but I do trust the researcher who wrote to me, but here is what it says on the L-dex (bioimpedence device) site--it is a tool to help assess an arm, but can not provide a diagnosis:

http://www.impedimed.com/products/l-dex-u400/

L-Dex® U400

ImpediMed's L-Dex® technology utilizes the characteristics of frequency dependent current flow to quantify changes in extracellular fluid in female patient's arms. These changes can aid the surgeon, oncologist and therapist in clinically assessing for unilateral lymphedema of the arm. The L-Dex technology is specific for extracellular fluid and as fluid accumulates, the L-Dex value increases on the scale. The L-Dex number provides an instant tool for aiding in the clinical assessment of unilateral lymphedema of the arm as well as an easy way for clinicians to track extracellular fluid change in the patient's arm over time.

An increase of ten (10) L-Dex units from a patient's baseline L-Dex value represents a change of three (3) standard deviations (3SD). This has been demonstrated in a matched normal population to be potentially clinically relevant to the medical provider in aiding in the clinical assessment of unilateral lymphedema of the arm.

Note: This device is not intended to diagnose or predict lymphedema of an extremity.

Note: The L-Dex U400: A bioelectrical impedance analyzer/monitor utilizing impedance ratios that supports the measurement of extra cellular fluid volume differences between the arms to aid in the clinical assessment of unilateral lymphedema of the arm in women. This device is not intended to diagnose or predict lymphedema of an extremity

KS1 · July 2011

I read the paper and am confused by case study 1 & 2. In the first case study, the woman wears a garment for 4 weeks and a repeat test shows her L-Dex is now within normal limits. In the second case study, a woman who has been wearing compression garments for 5 years has a normal L-Dex and is told she no longer has to wear garments all of the time.

Here's my question - if a person has well-fitting garments, and has a bioimpedance test done immediately upon removing them, won't the L-Dex scores look pretty good (perhaps even normal)? If a clinician is deciding whether a patient needs garments, it seems like the test should be done when garments have NOT been worn for several days or weeks.

More generally, I share Binney's worry. if a person is doing a good job managing their LE and is compliant about wearing garments, the person's L-Dex score might be normal and insurance could refuse to cover the very compression garments that are keeping the person's LE under control.

On a possibly related note, I have noticed that touch sensitive devices sometimes don't respond when I use my LE hand. I'm beginning to think that this happens more often in the evening (when I tend to be more swollen) and on bad days. Most modern touch sensitive devices are capacitance based, not pressure based. I wonder if the capacitance of an edematous hand is less than of a normal hand. If so, we could use our cell phones as a poor man's bioimpedance device for monitoring LE ... Now there's a specialized ap! KS1

kira66715 · July 2011

And to clarify, when I queried the author, he said he found bioimpedance very helpful in RESEARCH for the last 10 years.

There's a kind of funny/sad story where I was emailing two researchers who are doing a study on the Rian laser, that never seems to be reported, and one researcher, thinking she was emailing the other, emailed me and wrote "What is her problem? Does she think the Aussies are trying to kill us?"

Well, the L-dex comes from the Aussies, and Binney's and my first response to computermouse's experience and questions that KS1 raises was "The Aussies ARE trying to kill us."

We, unfortunately, can't just accept this without questioning some of the assumptions/comments, while appreciating the paper and the effort.

Kira

NatsFan · August 2011

I've finally gotten a chance to review the paper and share the caveats raised. But I really like the bluntness of the language - LE exists, it is real, it is common, and most importantly, it is frequently undiagnosed and mis-diagnosed because of ignorance on the part of the medical community.

This paper adds to the growing drumbeat that LE is far more common than many of our surgeons and others on our medical team care to admit, and it is up to them to take precautions, become educated about it, monitor patients for it, educate patients about it, and ensure that patients are referred to qualified LE therapists as a routine part of b/c treatment. LE exists whether they like to admit it or not, and they'd better start paying attention to it.

Even with the caveats, I'm adding it to the info packet I'm giving to every one of my doctors this year as I have my appointments with them them - ps, surgical oncologist, med onc, PCP and gyn.I already gave a packet to my ps, accompanied by a long talk with her in which I told her that I felt that as an institution Hopkins really drops the ball when it comes to LE, and that I was dx when my LE was only Stage 1 thanks to me and only me, not to anyone on staff at Hopkins. She appeared to listen and said she'd look through the packet - whether that happens or not, who knows, but at least the info was given.