Thursday, February 7, 2013


If I didn't say it in a blog post, I KNOW I said it on twitter.

"NO ONE better say anything about Five Year Survival Rates in front of me.  I MIGHT go ballistic."

Thank you thank you thank you Gary Schwitzer. is website that provides independent expert reviews of the headlines.  I'm not a fan of those screaming headlines and parroted sound bites.  I prefer to get my information straight from the publication.  I don't want it "spun" to grab an audience.  Health News Review "unspins" it.

The title of yesterday's blog:

Five Year Survival Rates Can Mislead - message to medical educators, medical journals, journalists and the public .... 

My suggestion, go read it on and then, I'd love to take a poll but I'm not cool enough to figure out how to embed a poll into this blog post.  So here's my rhetorical question (or a real one if you choose to toss a comment below).

Are you still here five years after your diagnosis?  And now for the biggee:  Are you NED or are you back in treatment for a local or distant recurrence?  I can start this conversation.  Just off the top of my head, I can think of several people who are NOT NED.

In no way am I discounting their lives.  I just want them in their own category.  There's a huge difference between NED and looking over your shoulder which is where I reside (sometimes I look, sometimes not so much) and NOT NED.  We are all standing in the same five year line but all of us are NOT created equal.

It is this skewing of numbers to create false illusion that prompted me to bite a hole through my tongue last night as I sat with a group of cancer patients, all post treatment.  We were having a meaningful conversation about helping those who are just setting foot onto this runaway train named Cancer.  Bound for Cancerland, making stops at operating rooms, radiation suites, scanners, infusion rooms, there is a flurry of activity at each stop even though all stops may not be necessary for every patient.

We are ALL passengers.  We still see who's coming and who's going.  It's the Cancer Express and it's inclusive of all types of cancer.  We are in this thing together.  It's a huge umbrella under which many stand, but we are all under that same umbrella.

I've chosen to remain on that train because I no longer suffer from the motion sickness associated with those first couple of rides.  I've chosen to lend an ear or a shoulder to those who are still dizzy with disbelief.  Sometimes asking, "Should I get off at radiation or should I stay on the train?  I see there is another operating room stop ahead."  I will listen and I will help them ask the right questions of their doctors.

You get it.  I know you do.  We all get it.  Or most of us to.  When I heard words along the lines of "we all know someone with breast cancer....... I have a 9 year old boy who knows about breast cancer," the only thing that stopped an icy stare was the warm flush of fury that worked its way through my body in a millisecond.

It was dismissive, it was disrespectful, it was deserving of a comment.  I was marginalized.  A number of us were put in a little pink box because someone made a stupid comment that fell just a hair short of those dreaded words, "the good cancer."

I said nothing.  This morning, the hole in my tongue is still gushing blood.


  1. Sheesh. I'm at a loss for words here, but I will say that anyone who marginalizes you, my fellow rabble-rouser, should fear for their life. Yikes. I'm just not sure what to think about that comment about the 9-year-old boy knowing about BC. My son was 10 when I had to tell him that I had been diagnosed. Yeah, he "knows" about BC. So does my then-8-year-old daughter, who todat at age 11 is standing on the precipice of developing breasts, and each time I see those little buds trying to round out, I wonder if the errant cells that cause cancer are already present. As you and I well know, there is no good cancer.

    1. Yeah.... I kid you not about the biting of my tongue, too. It was definitely out of line and I just did my best "deep breathing" to let it go..

      This is a classic case of pink fatigue creating that stupid illusion and thereby allowing someone to think it's okay to create a "pecking order" among cancers. We may have the "popular cancer" but we are also "the Mean Girls" .....




  2. I read Gary's article, but it wasn't new news for me. Unfortunately, our pink ra-ra community has done us all a disservice with the misleading info it continually recycles. Not only are we all members of the breast cancer community, a lot of us are members of the hole in the tongue society.

    1. Gary's article not new news for many but it reinforces the need to take care when looking at the screaming headlines...

      I took your survey and I can't wait to see what you have cooked up!! Very excited for you..... even if we are card carrying members of that tongue hole thing!!


  3. dear anne marie,

    thanks for the link - i read the article. for any of us who are novices at trying to send a message about the folly of diservice komen has perpetrated with failing to provide the facts, and further, ..." worse, it undermined decision making by misusing statistics to generate false hope about the benefit of mammography screening.",this piece provides a great reference point as to the hows and whys of skewed statistics. i appreciate the effort you've put forth to keep us informed to empower us who are fairly new to the politics of BC with facts that can lead to a more indepth one-on-one conversation, above and beyond the ever-so-tiresome pinkification crap. it's no small thing, anne marie, and i hope you know that even with a sore and bloody tongue, what you do for us is making a huge difference. (P.S. - a rinse with warm salt water at frequent intervals can help alleviate the pain and speed healing. once a nurse...i'm just sayin')

    much love, XOXOXO,

    karen, TC


Something to add? Do Share!