Will any of the big BC charities ever take LE seriously?

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cookiegal
cookiegal Member Posts: 3,296
edited June 2014 in Lymphedema

Nothing against anyone who is already doing work in this, but it would just seem like Komen or ACS or someone could make LE care a priority.

I see so many examples of people falling through the cracks.

The type of garments we need don't exist--

coverage for care stinks--

awareness is lacking--

misinformation is rife.

Honestly if Komen could make this part of their agenda they can sell any silly pink thing they want....I think they could really win some goodwill among survivors.

I feel like we are the Who's in Whoville.

Am I crazy?

We are here, we have a legitimate issue, and resources could really help.

There are projects who provide all kinds of complimentary care for survivors, yoga, mediatation, retreats, support groups, all good things, so why not LE?

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2013

    I sent an email...it has to start somewhere.

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

    Cookie, I have a contact high up at the American Cancer Society, because I emailed directly to Otis Brawley, Medical Director, about misinformation on their site. She has admitted to me that they'll keep the site accurate, but their money is directed at helping with transportation, and they cut all funds for LE services.

    Komen won't even let Binney set up a booth at their walks unless she pays to be a corporate sponsor.

    They're trying to sell breast cancer via sexuality, the myth of the valient warrior, and screening. There's no place in their fundraising for women with swollen arms/breasts/trunks.

    They don't push neuropathy or chemobrain either.

    We're supposed to thrive. ASCO just released a new brochure on survivorship and no where are LE, chemobrain or neuropathy, or cardiac damage mentioned. The new push is that to take control of our lives in survivorship we have to become Lance Armstrong without the doping.

    Long term damage is mentioned, but not specified.

    These are fund raisers and brands, one of the worse offenders is the National Breast Cancer Foundation that takes in 10 million a year and gives out around 40,000$ for mammograms.

    Why do I have to embrace breast cancer as enobling, as an opportunity???

    I just gave a talk about "Distress" in cancer treatment, the NCCN has a distress scale, and I've never, ever seen it used. And guess when we're likely to experience distress? At any point in our treatment and survivorship.

    But, if we don't yell, no one will hear us.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2013

    ha! Lance Armstrong without the doping.

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

    Knew you'd get it.

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  • nibbana
    nibbana Member Posts: 464
    edited January 2013

    This ticks me off too. I haven't had the chance to emotionally process this whole cancer thing, I currently have no LE care, (but I'm getting close), I've seen no retreats, meditation, or yoga put on by any cancer group. I've done it all myself.

    I am going to a lymphedema workshop in February, but it's $100 coming out of my pocket.

    I hear ya cookie, it's well, distressing!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2013

    Nibbana, that's a lot of money, and not all LE workshops are created equal, y,know?Undecided If you wanted to post more details about it, some of the women might be able to weigh in with their experiences of speakers, sponsors, etc. Just a thought. At any rate we'll look forward to hearing what you learn!

    Be well,
    Binney

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  • nibbana
    nibbana Member Posts: 464
    edited January 2013

    Binney,

    Yeah $100 is a lot, but that's how they (Northwest Lymphedema Center in Kent, WA) keep their shop running, that and donations. I'm out west, so I'm not in the east coast population centers where things like PAL were born.

    The workshop is in three weeks, I'll be sure to write up a trip report!

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

    Nibbana, that center is known to be a wonderful place, so I'm betting you find it worth the investment.  I'll really look forward to whatever you can tell us about it when you return.

    Carol

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2013

    Yep, that sounds good!Smile Lots of experience and expertise there. They're close to Leslie Bell of Bellisse and they make products to fit her bras, so there's a commercial connection there you need to keep in mind, and I've heard JoAnn Rovig's presentation about alternative diets which was, uh, interesting but has nothing to do with LE. Aside from that they're a great place to be connected to. JMHO, of courseWink.

    Enjoy! Learn lots! Take notes!
    Binney

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

    I thought that the fee included a garment--is that true?

    Have you checked out her on-line videos?

    Heard her talk about diet, and she's fundamentally sound but a bit "out there", but overall, she's done a huge service to the LE community with her videos.

    http://www.nwlymphedemacenter.org/

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  • nibbana
    nibbana Member Posts: 464
    edited January 2013

    Don't know about the garment, that would be nice. This workshop will be a good opportunity to get some names of the big guns in the local LE community. Plus, I can ask question about the erronious things I've heard. My BS meter will be on high, that's for sure!

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

    Nibbana, a BS meter is a great tool to have when figuring out LE!!!!  There's so much of it out there!

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited January 2013

    Nibbana, I took the Northwest Le workshop 2 Novembers ago and they were wonderful in my opinion. They are compassionate. I think it was worth the 100 and they even fed us a hearty lunch. I hope they still do. I have been PMing a girl from my area and she is going to the workshop. It sounds like she is going soon. Maybe same one as you. We even had a girl come in and demo Lebeds. Also got on the floor and each tried MLD. They showed us wrapping. I was new to the game and quite a bit went over my head but I would love to do the seminar again now that I am of the " seasoned swell society"

    We had the honor of having a man with bilateral LE there and I just was so happy to see him caring for himself. We also had a 17 year old that had primary LE extremely bad in both arms since a toddler. (No one knew what it was) She was the sweetest girl and her and another woman at the seminar went to capital hill and she talked to the government officals about promoting that bill that LE ers are trying to get garments covered. Wow what a kid, I will never forget her drive to survive! So the mix of people were such so encouraging. 

    The 100 dollars is a suggested donatation so if you truly can't afford it then you should let them know ahead of time. I think I spent my money very well and was happy to donate to a good cause. I think you can get a tax receipt.

    For sure get the 50 dollar video which was spendy but that is how they stay alive and keep the education up. That video is the best in my Library. I got to watch it again.

    They answered all my questions and never made me feel like I was bothering them. I think you can take a support person.

    I received no garments but got to see the JOVI area and view and touch their products.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2013

    http://ww5.komen.org/UnderstandingLymphedemaInformation.html

    have at it! Some of the information is good, and I was interested to hear about the studies, but the whole risk factor thing I think is bogus. I am really believing more it has to do with genetics and the stregnth of our lymph sytem.

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  • Outfield
    Outfield Member Posts: 1,109
    edited February 2013

    Any idea where I could see that ASCO survivorship booklet/pamphlet?  

    It is completely disenfranchising to have issues like this, or chronic pain, or sexual dysfuction, ignored.  

    How is it that the discussion about prostate cancer always includes incontinence and impotence, but breast cancer is not allowed to have long term side effects?  I want to write something.

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

    Outfield, is the one you're looking for likely to be at this site? 

    http://www.cancer.net/publications-and-resources

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  • purple32
    purple32 Member Posts: 3,188
    edited February 2013

    they cut all funds for LE services.

    Komen won't even let Binney set up a booth at their walks unless she pays to be a corporate sponsor


    This is just infuriating and should be exposed.  Every time these places 'get away with this' we allow ourselves to become more invisible as they got resounding applause.  It is sickening.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited February 2013

    Purple, I sure share your outrage, but I don't get in what sense you think we're "allowing" ourselves to become more invisible? Komen wanted me to pay more than $20,000 (I don't remember the exact figure--might have been WAY more than that) to qualify as a corporate sponsor in order to set up a LE education booth. Instead I found a spot along their walking route and handed out alert bands and written LE information to the walkers and their supporters, and I talked until I was hoarse. It is not that women and their loved ones don't want to know about it, but I suspect it didn't fit with Komen's happy-pink image. So in a sense Komen "got away with this," and they continue to, but I don't get how that qualifies as us "allowing" ourselves to be invisible.

    Still, I'll certainly agree it's sickening!Tongue Out
    Binney

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  • purple32
    purple32 Member Posts: 3,188
    edited February 2013

    Instead I found a spot along their walking route and handed out alert bands and written LE information to the walkers and their supporters, and I talked until I was hoarse.

    You go, Binney!

    You had an opportunity where you could make sure Komen was NOT allowed to get away with it, and you acted upon it. KUDOS!

    I agree with you completely on the pretty pink.

    LE is not so pretty. Thinking of a BC " survivor" and supportng that with a walk or some money is " in".

    * LE is rare . (NOT!) BC is common. ANY of us could get BC. MOST wont get LE. What's LE? This is how I think a lot of women feel/think .* ALSO, as for the whole " survivor" thing - you just need have no recurrence. LE is lifelong. Who likes  to think of that ?!!!

    I think Komen should be EXPOSED in the way they ignore LE so that they <komen>  are VISIBLE . Admittedly, I am not sure how, but we are a very big group here and there should be a way to 'report' that Komen does not support LE pts or LE education.

    If we can't/don't do it, then who ?

    I am open to ideas and willing to hop on board, I know that much.

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