Wednesday, March 30, 2011

Winning? By Whose Playbook?

Nancy Brinker, CEO and founder of one of the largest breast cancer fundraising organizations, resplendent in a pink pantsuit, recently addressed a crowd of 1000-strong at the Susan G. Komen for the Cure Affiliate Leadership Conference in Fort Worth Texas.  As reported by the Star-Telegram;
Brinker said that during her travels she is most often asked whether the war on breast cancer is being won.
"You bet we're winning," she said. "The five-year survival rate has increased from 74 percent in the 1980s to 98 percent today."
Firstly, I have addressed this often quoted "98 percent" statistic in a previous post, so I'll say no more about it, except that I believe it's a misleading, erroneous, arrogant and dangerous position to take, by the self-styled global leader of the breast cancer movement.  (Click here to read my views on this statistic).

Nope the real clincher for me today is the statement, "You bet we're winning".  Really?  By whose playbook?

It sure didn't feel like I was "winning" when my dinner-and-a-movie-Friday night turned into a nightmare of epic proportions, starting with me being wheeled to the emergency room on Friday afternoon following a big-time fail on a heart test.

Everything happened very quickly, but during my couple of hours in the ER, I was seen by at least five doctors, and the decision was made to operate on me that evening.  By 6pm I was kissing my beloved goodbye, trying to shout instructions about what to do with my body if I didn't come through the operation, and being wheeled into the operating room, having received an emergency slot at the expense of some other poor soul who was bumped to accommodate me.

To cut a long story short, it turns out that I was walking around most of last week with a ticking time bomb inside of me.  My heart had filled up with fluid and I had some breathing difficulties as well as some other uncomfortable symptoms.  In medical parlance this is known as a Pericardial Effusion.  It's a serious situation and if left untreated can cause heart failure and death.  To put some perspective as to how bad my situation had become my surgeon put it like this.  The normal heart sac holds about 30cc of fluid before it's "full".  My heart sac had 1000cc of fluid by the time I got to the operating table.

How did it get this bad you ask before we caught it?  I'd been having some symptoms like fatigue, stomach ache, feeling a bit full, and a bit short of breath.  But of course I never connected the dots, thinking it was all just the usual cornucopia of mystery side-effects from chemo, and since my blood pressure never dropped I guess everybody else missed the seriousness of the situation until I showed up for the echocardiogram on the Friday.

I really like Diagram B.
So in order to treat me, the surgeon went in around my sternum, cut a small window (or a Pericardial Window) in my heart sac, and then inserted a drain, drained off the 1000cc of fluid, and the drain was left protuding out of my chest to let remaining fluid drain into a plastic box that was left at the foot of my bed.  I spent the night in the Intensive Care Unit hooked up to every beeping machine ever invented.  Late Saturday afternoon I turned a corner and I was taken off the machines, untethered from the IV's and sent to the general oncology ward to continue my recuperation.  My stay in hospital was dependent on when the fluid stopped flowing, and the drain could be removed from my chest.  And of course that I could walk further than 6 feet without feeling like I was about to be taken by the Great Pink Spirit in the Sky.

Why did this happen?  I'm not yet willing to speculate publicly on the causes of this particular nightmare as I'm still waiting on the pathology report.  However I think it's fairly likely that this is cancer-related in some way.  How sinister is yet to be determined.

My point in relating this story is two-fold.  One I'm talking about it, so I guess I'm dealing with it.  But two, this IS cancer.  It's sneaky.  Just when you get comfortable and think you know where you're headed, something like this appears out of nowhere and shakes you to the core, making you forget everything you thought you knew about your particular cancer beast.  One minute you're thinking "I can do this", "I'll get through this", to all of a sudden "Shit I really might die, and maybe sooner than I think".  That's cancer.  It's cruel.  Plain and simple.

And for Nancy Brinker to stand up on a stage and proselytize to her deluded evangelicals that "You bet we're winning" seems to me to me to be at best, an extreme error in judgement and at worst,  self-serving and just plain cruel.

It's time Ms Brinker walked an oncology ward.  Read a few blogs (The Assertive Cancer Patient, Ashley: Warrior Mom, Dancing with Cancer, Living with Cancer (now deceased) etc). Talk to the organizers of the Metastatic Breast Cancer Network and Metavivor.  Talk to the members of the cancer community living with metastatic disease.  Talk to the members who, although show no evidence of disease right now, fear recurrence at any point.  Talk to the spouses, partners, families and friends who are the caregivers, the bereaved.  Talk to the medical community who are in the trenches everyday trying to save their patients with the best medical science has to offer.

Who of these people would so flippantly say "You bet we're winning"?

Playing the Breast Cancer Game: Winners vs Losers


  1. I too thought I had "kicked cancer's ass" until the bone mets showed up four years after my initial Stage iiib diagnosis. Now I have become more educated and know that no one is every really cured. What about Stage IV survival rates, Ms. Brinker? That is what your sister died from, along with virtually every other man or women who dies from breast cancer. We all need to keep asking questions about why the focus is on "awareness" not a true cure and, for our daughters, nieces and other young women (and men), prevention.

  2. I'm sending you love and health.

    I have cancer too.

  3. AR, thank you for bravely putting your very personal story out there. You are one very serious ass-kicker, whether you have boxing gloves or not.


  4. Anna, thanks for sharing so much. It amazes me you're able to write so clearly and eloquently with all that's going on. But, if there ever was something to rally about, it's this nonsense. It's too bad Ms. Brinker doesn't realize the power she holds if only she'd talk facts. Imagine what she could get done, all that money toward research. Mindboggling.

  5. I liked diagram 2 as well. Its like an artistic metaphor for how life is telling you something really crap.

  6. Thank you for your honestly and frankness.

  7. First, I am sorry to learn of the pericardial effusion. I am pretty sure there is no Hallmark card that covers that eventuality.....
    It sounds painful and scary.

    Second, 45,000 people in the US will die of beast cancer this year. Doesn't sound like winning to me.

  8. Anna, Thank you for sharing your experience with such open honesty. I'd say you accomplished your two goals. Yes, you are dealing and coping, really well I might add. Secondly, you describe the cancer beast perfectly. I wish Nancy B would read your blog. (Also, like I said before, angry and tough...good combo!)

  9. I love all that you wrote. But, I'd like to offer one additional clarification.

    When you said, "this is cancer," I'd like to suggest that we notice...this is cancer TREATMENT."

    Why the clarification? Because I question a great deal of the treatment options which are offered to us. I'm not convinced that they are necessarily life-saving, although they are indeed promoted by the pharmaceutical industry!

    I believe that the most effective treatment has not yet been identified and I truly question the use of chemotherapy. The more I research, and review statistics, the less I am convinced

    As a b.c. survivor, and scientist-practitioner of psychology, I have a PhD which I am trying to put to good use for all of us.

    I think the clarification of "Cancer" versus "Cancer Treatment" is a critical distinction.

    What are the treatments offered doing to us? And, more critical, are they effective enough for us to endure the sometime life-threatening side effects?

    Why is chemo the main course of treatment? Who pushes it, and why? In our history, illnesses are never "cured" until a truly effective treatment is found. I think they are missing it with us.

  10. I mean, geez: fatigue, stomach ache and short of breath is how I feel every time I leave the gym. How is anyone supposed to know that's serious, & those diagrams - WTF? I hope you are back up and running soon.

  11. You continue to amaze me...with every post. Nancy Brinker isn't winning. YOU are in bringing the cancer asshat dance to light.


  12. Anna,

    I'm sending healing wishes your way. This episode is a reminder of how fragile our health really is. I'm amazed that you could write such a poignant posting, so soon after this experience.

    You are right: who's winning the war on breast cancer, or cancer in general? I hate the whole "winner" and "loser" attitude that is promoted by so many people.

    How much cancer has advanced is partially or wholly due to sheer luck. I wish society would get that through their brains.

    All in all, thanks for the brilliant posting and best wishes for better health.

  13. Anna. Even in the midst of recovery from major invasive surgery you still see the world so clearly and constructively. Winning the war? I'm so tired of hearing it. Where's the evidence of that? Not selective evidence of "very early" breast cancer, but the full range of evidence? What about the realities of cancer and treatment that impact people's lives long after their initial diagnoses? The success stories are wonderful. I'm happy to know they exist. But the cancer glass is also half EMPTY. We need to acknowledge this. For your sake. For the sake of everyone whose cancers recur. For the sake of the future. This is NOT Okay. Thank you for continually reminding us of that.

  14. That's the thing about "kicking cancer's ass" -- we never know for sure that it's really gone, and gone for good. Thanks for keeping the dialogue going. Someone gave me Nancy Brinker's book to read after my mastectomy, and while the Komen org has done some good things, there's something about her that I don't trust. Wish she were more focused on women like you.

  15. It is high time we "Showed Cancer the Door"!
    I am a cancer vaccine advocate. I got a breast cancer vaccine in a clinical trial. If I can help you or anyone you know, visit my website
    my vaccine was for DCIS/Her2/neu but trials are opening soon for IBC.As long as there is one woman left in that burning building of BC hell, I will work 24/7 to ensure we all can die of old age, not BC nor BC treatments! Shelley Dodt
    Pennies in

  16. Anna -

    I so appreciate your blog. Sometimes I can't decide if it has more of a therapeutic (someone who gets it... finally!) or inflaming (at the end of every post I read I want to blow up something pink) effect on me.

    We thought my mom had "kicked cancer's ass" for ten years, until the damn disease reared its ugly head in her bones ten years later. How blissfully ignorant I was to the reality of this disease until the day I got that news...

    When we lost my mom to breast cancer last year my sister and I worked our butts off and raised more than $31,000 as a two-person team in the Komen 3-Day for the Cure. We wanted to do something in mom's honor. Help other women in her situation. What a disappointment to later learn so little of what we raised in mom's name would go to research. What a slap in the face to learn only two percent of what does go to research goes to Stage IV cancers.

    To make matters worse, a very supportive friend of ours with a family restaurant tried to have a "pancakes for the cure" event to fundraise. You guessed it. She got one of those infamous Komen letters. Seriously???

    It makes you feel helpless. As if cancer doesn't make us feel helpless enough. I'd love to find enough ladies to go rogue this October and go our own damn walk. No pink. Just passion. And money FOR A CURE. 100 percent of it.

    I do appreciate the work Komen has done. I do. I will be forever grateful that they took breast cancer out of that dark closet it was in and got people talking about it. But now, after so many years, their gameplan has to change.

    Again, thanks for understanding ...and fueling our fire.

  17. Damn, woman - you seriously had a tough week. Puts my little FML moments to shame for sure. Pericardial effusion or not, you still rock...

    But we're WINNING, don't cha know!?! Jacked up score cards they keep because somehow the math is all wrong. Komen and their dear CEO Nancy Brinker really, really need to get a damn clue...

  18. Dear all - thank you so much for taking the time to comment. Energy is very low this week as I continue to recuperate so forgive me for not replying individually. I promise to keep being the reality check on this "war on cancer" , and thanks to all of you for listening and being open to discussing the hard-truths in dealing with this disease.

  19. Wow, sounds like one hell of a week. I agree w/you about the Komen crowd. It sometimes feels like they need to visit the trenches a little more often for a reality check. The statistics are still scary and we shouldn't run from them in the name of hype.
    I appreciate the millions that have been raised for cancer research. I was diagnosed stage 3 her2+ and know that w/out herceptin, I wouldn't be alive today w/out that research. But lately, it feels like the powers-that-be in the world of fundraising are too caught up in the hype. If marketing can raise more money, then I'm all for it. But sometimes it feels like breast cancer is a money making product w/cheerleaders rather than substantial voices out there backing our cause.

  20. I don't think we're winning against cancer, i think we are lagging behind, trying to save as many lives as possible from an enemy stronger than our understanding. win will only come when we find either a cure that cures everybody(!!!) or a vaccine so people don't get sick to begin with

  21. Right on, Anna! I'm amazed & thankful you are still here. And it's so true, that you just never know what the heck is going on when you feel like crap, for one reason or another, whether it's the damn disease or the damn treatment or just some 'normal' thing going on. Of course, there is no 'normal' after this diagnosis...

    Doesn't feel like 'winning' to me either. If that's a victory, it's a pyrrhic one.


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