Johns Hopkins and a North Carolina group pdf on LE

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kira66715
kira66715 Member Posts: 4,681
edited June 2014 in Lymphedema

So, this showed up in my google alerts and considering that Lillie Shockney still says that no patient at Hopkins with a SNB has ever developed LE, I was surprised. I'm not sure why two such different groups collaborated on this booklet. I found it only fair in terms of facts: no mention of how to start to weight lift, no real description of LE, no description of who treats LE, but at least they acknowledge that LE is a possibility:

http://cancercareofwnc.com/files/2013/05/Prevention-Lymphedema-Booklet.pdf

The pdf is found on the Cancer Care of Western North Carolina's site, not sure where the reference to Hopkins came from

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  • carol57
    carol57 Member Posts: 3,567
    edited May 2013

    But they also say to start arm exercises immediately after surgery, which I think has been demonstrated to be risky LE behavior.  Also, the statement that you must keep your bmi low to avoid increasing LE risk is only partially true. Studies show that the LE risk goes up if you had high BMI at the time of BC treatment, but I've never seen any study that says high BMI afterward increases the risk.  It might, but I don't know that it's been demonstrated. Anecdotally, many therapists seem to observe that patients who lose weight often improve their LE, but again, no studies that I've ever seen.  If studies on bmi and LE are 'out there' I'd love to see them!

    Having said all of that, as Kira pointed out, at least we're making progress when anyone provides a heads-up document about LE at the time of BC diagnosis.

    Carol

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2013

    Carol, my BMI was never lower than when I developed LE, and Jodi Winicour PT has lectured on how thin,athletic women are more likely to get Axillary Web syndrome, which I did.



    Not a perfect brochure, but right on their web site

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