Wednesday, June 27, 2012

LET'S BE ACCURATE PLEASE: STORIFIED STYLE

13 comments:

  1. Just glancing at this Anne Marie for now - need to sit down and read it more carefully a little later - thanks for opening the discussion on such an important topic!

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  2. Well, pretty sure you know my take on this one, but just to be clear...

    We all WANT prevention, and MAYBE, SOMEDAY, SOMEWHERE, SOMEHOW we will get that (personally, I think we have as good a chance praying our way to prevention as we do getting there with science, but I would LOVE to be wrong on this one!!!

    There is NO evidence of a "magic bullet" in breast cancer! It is not ONE disease, and therefore cannot be "prevented" in one way. Look at it this way: we KNOW what the single biggest risk factor for breast cancer is, right? It's being born FEMALE. Let's just pretend for a moment that we could get RID of being female. In a society of ALL men...there would STILL be breast cancer. While not a large number, about 1% of breast cancer today is found in men.

    Seriously, though, despite the fact that it will never help me, or you AM, or any of us diagnosed or living with not-yet-diagnosed breast cancer, it is a worthy endeavor. It would be a blessing if the generations of my grandchildren or great-grandchildren did not have to live with this. So, yes...go ahead and do some research. SOME research!

    Not only am I troubled that a "legit" organization is promoting this crap (and they should know better!), but until we have a SCIENTIFIC intervention to prevent breast cancer, the language will continue to ring with the subtext of blame. I DID NOT CAUSE MY CANCER, DAMN IT!

    The other challenge, as we have discussed at length, is that a focus on prevention, worthy as it may be, distracts us from focusing on a CURE. If we put our efforts toward PREVENTION, we are leaving behind those of us with diagnoses. If we focus on CURE everyone is included, even those who, unfortunately, will be diagnosed in the future.

    OK, OK, stepping down from my soap box. I should have just posted this on MY blog; sorry to go on and on. Guess I have some strong feelings, too...LOL.

    Love you! XOX

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    1. Thank you for getting on the soapbox RIGHT here. I hope the message will finally be heard. The fact that they are TEACHING young girls and potentially using this language IS setting the stage for future self-blame. As if it's not enough to deal with a dx, now we have to deal with undoing even more emotional fallout.

      Perhaps it's an even hotter topic for me as I know my own daughter was in one of their programs a number of years ago. Had I known THEN what I know NOW, I would have been in the audience and you BET I would have called "bullshit" right in the middle of the presentation if something was presently with 100% accuracy including WORD choice, because yes, we all know Words Matter.

      Love you....
      xoxox

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    2. Maybe you still need to be in the audience -- you might be able to help educate them; develop a MEANINGFUL curriculum... In your free time, of course!

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  3. Ann Marie,

    Well, I think you know my feelings on the importance of word choice. As an educator myself, it is troubling indeed to think an organization is sending out the wrong message(s) to high school girls. There's so much educating that needs to be done in the breast cancer realm and it's not just our kids that need educating is it? (I like your word choices though).

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    1. Thanks, Nancy. That tweet is like nails on a chalkboard. It really upsets me. I know I let TOO many things bug me, but to paraphrase the song, "It's my blog and I'll rant if I want to...."

      :)

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  4. Thanks for this important & imperative discussion. Like many breast cancer survivors, I did all the "right" things to prevent getting this disease! And I still got it. Prevention is something to hope for. But it's not real yet...
    Robyn Michele Levy
    aka Ms. Mastectomy

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    1. Thank you, Robyn.
      I feel like I'm being too picky... but I'm really not.... I don't "bark" about things that are personal preferences that I may not agree with (like the war metaphors). But, especially when speaking to young people, they tend to find a word to hang on to... It's a slippery slope and it's one that troubles me because of the total inaccuracy of the statement.
      Hope next time you are in this neck of the woods, we can connect!
      AnneMarie

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  5. Ok I'm back ;-) Read this initially when tired and fuzzy headed last night, but clear headed and wide awake now and I read through your excellent storify carefully this morning. Anne Marie this is superbly put together and persuasively argued. The facts are - we cannot prevent/cure cancer,but we do know from current research that there are factors which increase our likelihood of being diangosed with cancer, chiefly lifestyle choices (diet, exercise, etc) BUT, even engaging in these risk reducing behaviors is NO guarantee of prevening cancer. We know it is a complicated disease with many factors at play including genetics. However, your reworded tweet would have been a better way for MF to have phrased their tweet. I believe in promoting this reworded message - but I don't believe it is as,Lori points out, by any means a magic bullet. Cancer is, to repeat myself again,far more complicated than this. Once again, well done on such a superb post Anne Marie. I hope the MF took note!

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    1. :) Thanks, Marie! I don't even think MF saw this. Interesting twist? My mom's friend and neighbor is being treated by the doctor who is the leader of this foundation. I think I may see about joining her on her next check up. I wonder if the doc is aware that her SM person isn't really doing much justice for the foundation by perpetrating this illusion. It's quite, well... ummmm, disillusioning...

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  6. AnneMarie,

    You are right: this tweet is ridiculous. There is no way to prevent breast cancer. If there were, wouldn't this dreadful disease have disappeared?

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    1. Exactly! The thing is... that tweet is in a rotation and it's been tweeted dozens of times (that I saw). In addition to responding privately, I replied to the tweet (respectfully) in the public stream. Now, I've just been summarily dismissed. "We at the MF believe prevention is the most important thing" or some other such nonsense. Great. Then do me a favor... don't make it about "breast health" just stick to regular health. No good comes of bad information or misleading statements.

      Thanks, Beth....

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