Arm Lymphedema

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

I read the links tied to the the top thread on this forum, which I couldn't post to, and while the pages are not bad, they're all a couple years old, and ARM lymphedema--what about breast/trunk/hand--lymphedema after breast cancer surgery can occur in the whole quadrant.

We asked that Arm be removed from this forum, and this just feels like a step backward.

Remember the exercise blog that was pinned a few weeks ago: after many posts and pm's to the mods, it was unpinned and sunk into obscurity.

Considering the new position paper just out, I'd prefer if they linked to that, even with the bioimpedance push and lack of accurate interpretation of weight lifting data.

We've been waiting a long time for new info on the lymphedema pages. 

Our secondary LE is not limited to our arms. 

Just read the grrrr thread for a textbook.

Kira

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Comments

  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited August 2011

    I was bothered that there was no way to respond except to say helpful or not helpful.  Why can't they just read this board and listen to us and take us seriously?????

    Dawn 

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  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2011

    Dawn, the last time they tried to "update and improve" they were met with a pretty powerful response, so they've removed any possibility of our input, other than pm's

    So, I guess that's what we'll have to do.

    No, they don't "get it" unfortunately, and for some reason, we're low priority, and this is the second attempt to promote a new and improved bc.org on LE, and it's just not.

    Kira

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  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2011

    Just pm'ed the mods--as they won't let us respond publically, here's what I wrote

    Almost a year ago, we asked that arm lymphedema be removed from the forum, and women with secondary lymphedema due to breast cancer can experience it in the entire quadrant at risk and with sentinel biopsy, it is frequently in their breasts and trunks.

    I am very upset/concerned that you pinned this misleading topic to the top of the lymphedema forum, with no ability to respond to it.

    The information is not new, and it is misleading to label it arm lymphedema

    If you read through the forum, you'll see that there is new information coming out all the time, there is a new position paper authored by leading researchers in the field, and as the pages you link to are several years old, while they're not completely incorrect, they're not up to date either.

    Please allow us to respond, and please remove "arm" from the thread, and I urge you to read the new white paper on lymphedema.

    http://www.avonfoundation.org/programs-and-events/lymphedema-information.html

    And I'd urge you to link to the National Lymphedema Network Position Papers as well, the newest of which urges pre-op and post-op assessment of lymphedema at all visits as the new standard of care.

    http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

    The women who post on this forum are a hghly informed group. What concerns me are the "lurkers" who will read your thread--pinned to the top of the forum--and dismiss their breast and trunk and hand lymphedema.

    I realize you're working hard to update the material, but you could harm women with this misinformation, and why add "arm" back to a forum when you've already made the decision to remove it.

    I know the last attempt to improve the forum--the exercise blog--was met with many concerned posts and pm's, but posting a thread at the pinacle of this forum and not allowing feedback robs the women who post here of their valuable in put.

    Kira

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  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2011

    Okay, the mods immediately took "arm" off the topic. We still can't respond, but at least the arm part is gone.

    Kira

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited August 2011

    Thanks, Kira!  Good work.  I don't know why we have to end up in an adversary position when all we want is good information to help people.  I do wish we could all just sit down together with a nice, soothing cup of tea and talk this out!

    Dawn 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2011

    Hey, hey! We can post there now, and I just did!Smile

    Dawn, I love your idea about the tea-and-talk. I'll bring the brownies!

    Hugs,
    Binney

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  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2011

    Count me in too. The collective knowledge of the women on this forum is astounding--both through reserach and personal experience.

    We are literally writing the book.

    Kira

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