Beyond the Shock: Another source of misinformation

What a ridiculous pile of complete dog do.  Can we get angrier ladies? When I calm down, I'll send an email. Perhaps the worst is that it seems so 'professional'.  Thanks Kira, as always.

Quail

Tough, yes, but doggone WE CAN DO THIS!!

To make it easy, here's the information for the National BC Foundation-- 

The video is on their website, here:
http://beyondtheshock.com/learn/6/6#6/6

And you can email a comment here:
feedback@beyondtheshock.com

They've also posted it on Youtube here, where you can register to leave a comment:
http://www.youtube.com/watch?v=w9KiQDKEu7o

To protest Komen's glaring omission of LE on it's page titled "What Can I Expect? Late Effects of Breast Cancer Treatment," go to this page and scroll to the very bottom, where in itty-bitty print you'll find the "Contact Us" link:
http://ww5.komen.org/Content.aspx?id=19327354748&ecid=emklSept11:4

That really is a whole lot of craziness, but TOGETHER WE CAN MAKE A DIFFERENCE!!

Go for it!
Binney

This just in from the Komen folks (I hear you on that, Tazzy!) in response to my email to them:

Dear B, thank you for contacting Susan G. Komen for the Cure® and for your feedback regarding our latest Komen Perspective's article- What can I expect? Late effects of breast cancer treatment.

For this article, we chose specifically to just focus on the long-term effects of chemotherapy and hormone therapy.  However, we may focus on the long-term effects of surgery and radiation therapy in another piece, where we would definitely mention lymphedema, as breast cancer survivors usually get lymphedema as a result of surgery or radiation to the lymph nodes in the underarm.

Also, in case you are not aware, we do have a full page dedicated to information on lymphedema within our website under the Understanding Breast Cancer section, found here: http://ww5.komen.org/BreastCancer/Lymphedema.html

I hope you found this information helpful.  Thanks again for contacting Komen.  We greatly value our constituent’s opinions.

Regards,
Erica

While I follow their reasoning, it sure isn't clear from that page! And anyhow, some kinds of chemo do trigger LE when there's swelling that our compromised systems can't handle. Still, they answered, and that's a good thing.

Be well!
Binney

Hi,

Kira and Binney, thanks for posting.  It is already hard enough to fight the ignorance about LE, but when one has to deal with plain misleading information it makes it even worse.

 How many of us wished LE was only temporary.  Such information might give women a wrong feeling of security as to the seriousness of this disease and prevent them from seeking appropriate treatment.

 A lot of battles on many fronts.....

Take care 

I didn't either. And the video is still up there.

Please all, lend your voices here. The misinformation on the Beyond the Shock video is dangerous to women with early LE or LE risk, because it suggests they don't need to seek prompt treatment (or any treatment, for that matter--just exercise and eat right. Huh?!)

Beyond shocked,
Binney

So I just got a response.   I will give them a month and if haven't heard back I will contact AGAIN !   And obviously the first paragraph is the standard crap they send out as I do NOT support them... anyway here it is: I find his tone very patronizing about receiving emails from the same group.   I am going to be like a pit bull with this group.... now I've got my teeth in it I will not let go !

Thank you for contacting the National Breast Cancer Foundation, Inc. (NBCF).  We appreciate your support of the NBCF mission to save lives through early detection and to provide mammograms for those in need.    

I'm sorry for the delayed response.  I did receive your email and dozens of others from what appears to be the same group, and we are reviewing our information as a result.  The script and information on BTS was written by medical experts and medical writers and reviewed by a team of some of the top medical experts in the US.  This information has been live on our site for 18 months, and we have never received a response regarding this topic until last week.  That said, we are taking your concerns very seriously.  However, please give us time to review this information and take appropriate steps.  Because our content is motion graphics and video, it will be very challenging to edit.  That does not mean we will not do it if it is necessary.  But, we must have these concerns addressed by our medical experts.  These include doctors and nurses from MD Anderson, Mayo Clinic, and Johns Hopkins.   

Again, thank you for your support and consideration of our mission to save lives.    

Sincerely, 
Douglas Feil
VP of Programs
National Breast Cancer Foundation

Tazzy, Kira is spot on.  Can you send a response saying you appreciate his willingness to investigate, and that to help him, you can suggest some individuals at two of the institutions he named who are experts in the field of lymphedema. At Mayo Clinic, he should request a review by Andrea L. Cheville, MD.  At MD Anderson, he should approach Janice M. Cormier, MD, M.P.H., F.A.C.S.  You might explain that it is quite common for cancer specialists to have only a general knowledge of lymphedema, and you are certain that these lymphedema specialists will respond with accurate information that will enable him to correct the site's misinformation and suggest additional information that would benefit site visitors.

OK - 1 week since I sent Douglas Feil an email requesting he contact the people in Carol57's email and to date no response.  I think it only fair that I give him another week as he was asked to contact those LE specialists.     I think that's very tolerant and patient of me... something I am not on a day to day basis  

If anyone thinks I am being too patient let me know and I will happily send him a 'reminder'.

Goodnight ladies, sleep well.

They are a pretty bad BC charity. They have lots of pink tie-ins but the money goes to very vauge awareness.

It dosen't surprise me the F'ed this up.

I kinda think they lie about a lot.

They are not scam artists....but they get a lot of money for not much of anything.

OOOhhh...poor babies have to EDIT VIDEO the horror! 

Hi Ladies,

Reminder email sent to Douglas Feil just now.   

Asked if he has yet had a response from the LE specialists we provided and how they are looking to amend their website.

Watch this space girls !!

Tazzy, bless you for taking this on! I too resent his characterization of our concern as a kind of gang action. But, hey, if that's what it takes we could do that too. 

Onward!
Binney