Monday, January 28, 2013

EVEN IF IT'S ACCURATE, IT MAY NOT BE REAL

I'm not a fan of statistics.  I really never was... and as I am writing, I'm staring at a copy of "The Complete Idiot's Guide to Statistics."  There is something oxymoronical in the title.  I can't quite put my finger on it, but statistics, unless they are very focused and precisely stated, can be bits of useless and quite possibly, damaging information.

My feeling about anyone pushing a statistic ad nauseam?  Take a step back and analyze.  When the same words are parroted over and over again.... and crammed down our throats so frequently that people begin to blindly repeat those words, someone has an agenda.  Using the statistic is a way to skew information to punctuate the agenda.  I make no apologies for stating this as a fact.

Here's my beef.  And lamb and chicken and tofu, too.

Presently, I am six and a half years NED.  No evidence of disease.  Well yay, me.  I passed that magical five year mark. And THAT is the statistic that has been running through my semi frozen brain over these past several days.  You see, I'd like some clarification of that particular little nugget of information.  That marker that is seen as The Holy Grail in Cancerland.

In 1987, when my mom was diagnosed with her first round of breast cancer, at the ten year mark she was declared NED.  I don't know what terminology was used but the politically correct verbiage in 2013 is NED.  So I will stick with NED.  She is included in the five year statistic.  Fast forward to 2007 and she does Breast Cancer Round Two. And once again, she passed the five year mark.  And this is my problem.

Is my mom being counted twice?  She's only one person but counting her twice makes the statistic look better, doesn't it? And what about now?  Less than six months after hitting that magic marker, she is metastatic.  Shouldn't she be removed from this statistic now that she is back in active treatment?  I say yes.  Keeping her in that "five year survival" statistic is a gross misrepresentation of the reality of the numbers.

In fact, I can think of plenty of friends who progressed AFTER the five year mark and I can think of plenty of others who progressed BEFORE the five year mark, hit the magic five years while being treated for metastatic disease and they too, are "five year survivors."

Is the information accurate?  Yes.  Am I thrilled and overjoyed that my friends are here?  You BET.  But some are doing quite well and others are have a very rough time.  Can someone please dig up a few REAL statistics for me?  Namely: those who are NED and those who are in active treatment because their cancer has recurred or progressed.  Better yet, can we lose that five year survival stat completely.  How about, NED at five years?  At six years?  Seven?  How about we quote NED all the way up to ten years?

Personally, I think that statistic needs to be restated to reflect reality because the accurate statistic is painting a distorted picture.  And the distorted picture is fueling this illusion of something that is not real.  Statistical accuracy does not equate to reality of circumstances and quite frankly, I find that to be a bit disillusioning.

And very disingenuous.





8 comments:

  1. I took a class in college on statistics where we spent a lot of time talking about misuse of statistics and skewed numbers. Then after a career in marketing, I can spin statistics almost anyway you want to make them sound better. Skip the damn numbers. All they do is either scare us or confuse us.

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    1. That's my gripe.... the confusion, the fear and the ability to spin numbers to push an agenda. It's wrong. We should not have to dig through numbers to figure out if the information is "real" or if it's been taken out of context....

      Hugs my friend...

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  2. Statistics are exactly the reason I wasn't inclined to study psychology further than a BA degree. There's so much massaging of numbers - although, I also understand that results & expereinces need to be quantified somehow. But yeah, the system is certainly not perfect. Nevertheless, I am looking forward to that five year marker. My mind needs a finish line (even if I know better). ~Catherine

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    1. Hey you....

      Make no mistake, hitting the 5 year mark is important. The longer the time between today and "that day" the better. Each day makes a difference. I'll be glad to run across that finish line beside you!

      xoxo

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  3. I've always kind of disliked the tracking of number of years past diagnosis - I guess because it doesn't really have that much meaning, for the reasons you describe. We need to start using more informative measures.

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    1. Hi Lisa,

      We need the truth, uncut, without spin... just the facts. Things would be far easier if that's the way this stuff were presented. Give me all of the info and let me decide how I want to spin it in my own mind. This is why I always prefer reading the actual research studies instead of the reprints in the medical publications. I'm getting someone else's opinion of what they feel is the most important take away.

      AM

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  4. Thanks for taking on another one of the breast cancer awareness pieces that also irks me and concerns me. The 5-year mark is nothing more than a statistical reference point, but it has been so skewed that people think if they make it to that magical five-year mark, then they are "cured." There's nothing magical about it. Cancer is far more mysterious than any spin we can put on any statistic. What concerns me is that those who believe they are "home-free" five years after diagnosis may ignore a sign or symptom, or may put off going to the doctor. That would be unfortunate. I'm an optimist yes, but an always-vigilant one. So many statistics do a disservice because they are being used for the wrong motives. The one statistic we all need to remember and work on changing--40,000 die each year from BC. Thanks for the continuing thought-provoking commentary.

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    1. Lisa,

      What an excellent point you make...... those who believe at 5 years they are home free and ignore something that should be discussed with a clinician. And yes, I am with you..... numbers don't lie and yes, that 40k number is the biggest issue of all... the one that matters the most. Lives. Nothing is more important.

      Hugs,

      AnneMarie

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