LE Summit in Ohio in August

Here's something else I thought of when posting on another thread: Jane Armer, at yesterday's LE summit, pointed out that the American LE Framework and (I think) NLN worked out an agreement that to become NAPBC-accredited (national accreditation program for breast centers), a breast center will have to include LE follow-up ( I think those were her words). Here's a link to the standards manual...do a ctrl+F search for 'lymphedema' and you'll find what's been inserted. I guess it's a start. http://napbc-breast.org/standards/2012standardsmanual.pdf

Carol

Jane Armer is amazing Kira!

I have to go to work today and tomorrow and will try to weigh in my comments on conference but may have to wait until weekend. 

One leaves the conference on a high knowing there are people being proactive in the LE world.

Thanks, Becky!! Like you, I find it comforting to know that LE is getting more attention right now. I was reading an article posted somewhere here, that BC patients with lymph node procedures shouldn't raise their arms over their heads for a short time after (a week or two) to let the lymph system "reboot". The OT or whoever she was in the hospital gave me exercises that involved crawling my hands up the wall with the goal being over my head. Being a good patient, I did it with enthusiasm, and was excited how quickly I stretched that area back out and regained flexibility after my BMX. If only I had a time machine.... I learned about the lymph system at some point in science, but didn't really know how it functioned. Many of the people I describe my condition to don't know. That's not saying I wouldn't have developed LE anyway, they blasted the area with radiation because of a positive lymph node. But at the time, when they mentioned LE, it was a far away consequence and cancer was real & scary. Well, having dealt with LE for almost 3 years, it needs to be discussed more seriously before procedures/treatment, so patients are making an informed choice.

Becky, I think your summary is spot-on, and I really have nothing to add!  Gottalovened, your post-mx wall-walking experience happens all too often.  The challenge is to get current LE standards of care into the hands of the MDs, surgeons, OTs, PTs...I recently looked at a current continuing education self-study for PTs, and even today, it instructs them to have post-breast surgery patients begin those exercises immediately.  

Bahhhhh!!!  It's incredibly frustrating to think that good information is out there for us, but only those in the LE community seem to have it.  I was saved from that immediate exercise, not because anyone on my care team knew about its LE-risk consequences, but because I had microsurgical flap reconstruction, and the PS needed me to keep those arms down for two weeks, to protect the blood-vessel connections he had made.  So saved for another reason...although I got LE anyway, although who knows, perhaps that's one reason my particular case of LE is very mild and easily controlled.  The study you mention showed that the immediate exerciser group had 2.7 times the incidence of LE within the first year as the delayed exercisers, so of course, some of the delayed exercisers in the study did get LE.  There are so many LE risks at play here!

Carol 

Becky, thank you. Excellent review, and so many different topics! Kinda makes your head swim. Being there to hear several people whose careers are all centered on lymphedema is such an encouragement. Sitting in our doctors' offices waiting to defend ourselves from blood pressure cuffs and stupid questions, we really have no sense of all the LE heroes who are working in so many ways to make our lives better. 

All good!!
Binney

Yep, I too thought I was being a 'good' girl with the exercises.  I also got a seroma, cording and was told.........this is all normal.  BLECH!!!

Cookie, a miracle cure will be a long time coming, but reading your wistful thought made me think of something else Jane Armer told us about.  The ALFP is working with its European counterpart organization to develop diagnosis and treatment standards for LE, which today are all over the place--different diagnostic criteria, different measurement methods, different approaches to treatment--and all that variation means that it's difficult to know what to expect when we go for evaluation and treatment, and it also means there's not enough pooling of evidence about what's working and what's not.  So wow to the ALFP and the European Framework for getting some standards in motion.

What's more, Jane also told us about ALFP and the European Framework project to systematically review all the major LE studies  published (in the past ten years, I think). They are performing a quality assessment, which is needed because some studies have too few participants to be meaningful; some have such short follow-up that they're missing LE incidence after a year or less; and the studies, too, use different diagnostic criteria and different measurement methods.  All of these problems mean that it's difficult to know if one study was well designed, and even if it was, it's difficult to compare to other study results, because the study designs could be quite different.  

So...the ALFP is looking at the studies to tell us which ones are based on good science, and which ones are weak. And they are working on establishing diagnostic, measurement, and treatment standards, which I hope means that future studies will fall in line in those areas--making them more comparable, and helping to build a higher quality body of knowledge about LE.

None of this promises a miracle cure, but at least, it looks like the research and treatment communities are working toward some goals that will make research better, and treatments more consistent.

Jane also mentioned the movement to encourage the third party payers to recognize the value (financially and also in terms of our treatment outcomes) of 'prospective surveillance' --meaning all BC patients would be given pre-treatment baseline measures; we would be measured and our symptoms monitored very frequently from the beginning of BC treatment, and frequently afterward, to pick up LE at its earliest presentation. The idea is that the cost to screen all of us and then to treat the 33% or so who would be identified with early LE within a year, is less expensive AND more effective than not screening and measuring everyone, but instead just treating the few with LE that shows up in later stages, when it's harder and more expensive to treat.  I asked her how likely it is today that our doctors, surgeons, etc. would pick up our LE based on minimal symptoms, because of course, they are not looking for it, and often they don't seem to want to hear about it from us.  Jane's answer was that a national physical therapy organization has already scheduled a conference with payers, to present the prospective surveillance model, and it is hoped that the financial argument will win their cooperation. (That won't happen anytime soon, but it's a start to at least bring them together on it.)

Not one bit of this cures our LE today or this year, or maybe not this decade, but still, it's movement in the right direction.

And I learned something else encouraging recently, from a different resource--your very own Dr. Francis, who spoke by phone to a group of us who will participate in next month's NLN conference, in their advocacy program.  Dr. Francis was reviewing and answering questions about the history of LE research, including some recent work. She pointed out that researchers have started to take interest in tissue changes that are common to both LE and obesity.  The good news is that there are tons of dollars of money available for obesity research, and relatively little for LE-but that some common threads between LE and obesity mean that LE may piggyback on some kinds of research that would otherwise never be funded for us.

And one more thought: not only were patients represented at the LE Summit in Ohio; every single one of those amazing scientists spoke to us directly, with heartfelt interest in our well being, and they took great care to make their presentations quite understandable to those of us without all the degrees in science and in medicine.  They were approachable, too--I introduced myself to Jane Armer and two others, and I asked questions that they gladly answered.  In short: They care; they really do care, and it's much more than a job to them.  (Of course, some--Jane Armer and Elektra Paskett--are in the sisterhood of swell...)

Carol  

Well, I'm finally back on line after our whirlwind trip to Ohio & return to work.

Echoing agreement with everything discussed above and greatly appreciate Carol57's effort to get us together!

I thought the history of Jobst was interesting. In 1948, he noted that his swollen leg felt better when in waist deep lake water. I started doing a pool aerobics class once or twice a week earlier this year and think it has been therapeutic.

Another idea brought up, that I had not fully understood previously, was the concept of reflux - not only is normal lymphatic drainage blocked, but the fluid can actually "back up" into other tissues. More motivation to keep up with CDT and MLD.

Dr. Cormier was preaching to the choir so didn't really need to emphasize the phrase she uses in educational talks to other surgeons: If you don't ask, they (patients) won't tell, regarding LE symptoms. She knows many of her colleagues are in denial or not diagnosing promptly. Her clinic describes the perometer measure as the 6th vital sign, after temperature/pulse/blood pressure/respiratory rate, etc.

Dr. Feldman's background in establishing LANA and the credentialing process was impressive. Less than 15 years ago, no broadly accepted comprehensive certification standards were in place. They grew out of the NLN with grant money from the ACS.

Although I don't recall hearing them mentioned from the podium, there was literature in our packets describing the Treatment Act as well as LRF and their national registry program.

Sorry for all the acronyms used as shorthand. Anyone need a translation? 

Hi Carol,

Thanks for the link.  I checked it and I found out the following:

-  This link takes you to a page with a list of the presentations, each of them has two sub-links - one for a PPT presentation and one for a video.

-  All the PPT links are working fine.

-  As far as the videos are concerned, some are not working well.

     -  Links for videos 1, 4 and 5 are alright (YouTube videos)

     -  Links for videos 2, 3 and 6 (OSU own network??) are inaudible

     -  Link for video 7 is not working at all.  (Takes me to Google page asking me to create a YouTube         account...)

Anybody else has the same problem with the OSU videos?