LBBC: Long Term Side Effects--no mention of LE

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

I like the organization LBBC, and I've listened to their webcast on LE by Andrea Cheville, and today I got their newsletter, focusing on long term side effects of bc treatment: neuropathy, fatigue/insomnia, joint pain, fertility and chemobrain.

There is a picture of a survivor wearing a lymphedema gauntlet, but no mention of LE.

Lillie Shockney comments through out. Hmm, any conection to the oversight??

So, I called them and asked why it was left out--a staff member told me that they care a lot about LE, but decided to leave it out of long term side effects--after discussing it.

So, I expressed my concern that LE belonged in common long term side effects of bc treatment.

Here's a link to the newsletter:

http://www.lbbc.org/About-LBBC/LBBC-Newsletter-and-Publication-Archive/National-Newsletter/Insight-Winter-2010-2011

Here's how to contact them.

http://www.lbbc.org/Contact-Us

Alright, so I'm focused on the topic, but I do think it belongs in a newsletter devoted to long term effects of bc treatment.

Kira

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Comments

  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2010

    Thanks, Kira!

    I just sent them an email -- asked them to remember us, and told them we're no longer hiding out in our houses afraid to be seen or heard, but actively advocating for improved treatment and awareness for ourselves and our Sisters who are facing lymphedema.

    Only takes a minute, ladies, and it's a chance to be heard where it could actually matter. Go for it!KissCool

    Binney

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  • CherylG711
    CherylG711 Member Posts: 102
    edited December 2010

    Shame on LBBC.  I just sent an email to them.

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  • toomuch
    toomuch Member Posts: 901
    edited December 2010

    I'm a little outraged. I sent them an e-mail too.

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  • Suzybelle
    Suzybelle Member Posts: 920
    edited December 2010

    I wrote them too....so disappointing, but so not surprising.  We are the reminders (along with our Stage IV sisters) that bc is not pink and fluffy and wonderful...that there are some very real, very unpleasant little items that go along with it. 

    I hate being a pariah!!!!!!! Yell

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  • Marple
    Marple Member Posts: 19,143
    edited December 2010

    I can't download the file to read it.  Dang!  Shame on them for not including LE in the long term side effects!!!!  No wonder many people don't think LE is a big deal.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited December 2010

    LBBC=Living Beyond Breast Cancer, and they're located in Philadelphia, and have some relationship with bc.org.

    They "decided" to omit LE, that's what ticked me off, and I take care of breast cancer survivors, and do see neuropathy, but a whole lot more LE.

    I wrote them that they lost a great opportunity to educate and validate, and they perpetuated the stigma, IMO.

    Kira

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  • toomuch
    toomuch Member Posts: 901
    edited December 2010

    Kira,

    I just PM'd you.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited December 2010

    Thanks toomuch for writing them, and getting a response--I'll bet Suzy gets one soon. It's amazing to me that 6 or so emails, all in a cluster, will make such an impact--we got apologies and a comment that they hope to do better in the future.

    One more organization that has been informed by the wonderful women on this thread.

    Kira

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