Thoughts from Under the Bus

 Did you read Peggy Orenstein’s piece in last week’s New York Time’s Magazine? The Feel-Good War on Breast Cancer. Seriously, read it. I know it’s long. It needs to be. Come back after you read and we’ll discuss. I’ll be here.

And about the bus…we’ll get there.

So Orenstein says, far more eloquently than I, something we’ve been talking about for a while now. It’s about Komen, it’s about pink culture, it’s about the ridiculous things we do “for the cure,” and it’s about the reality of breast cancer.

Orenstein’s story is stunningly similar to my own. Both diagnosed on a baseline mammogram at 35. Ours were both the lives “officially not worth saving.” We both underwent treatment and thought we had it in the bag. We both faced recurrence. Hers was local, I was less lucky. We are both still here to tell the story. We are both shouting it from the rooftops.

Peggy’s article is chock full of really important information, and there were a few standouts for me. You’ve heard me rant against Komen’s perpetual need to sprinkle pink sugar over this disease. You know the “mammograms save lives” crap is complete bullshit. You know how I feel about the distribution of research dollars vs. more “awareness” funding. We’ve talked about issues of over-treatment (more on that next week…tragic story). Like me, you know that 5-year survival rates distort our perceptions and that despite all our “advances” death rates have hardly changed.

That said, Peggy hit on some topics I haven’t addressed. I loved her discussion about what all this pink awareness means for girls. How this impacts the daughters of survivors I leave to the wise and insightful AnneMarie. But I have often wondered what it means as girls come of age. Just as they should be opening up to their sexuality, finding new pleasure in their bodies, they are forced to stare pink in the face. Breasts, both pleasurable and eventually nurturing, have become about death –  or at least the threat thereof. I thought MY generation had mixed messages about sexuality. Oy!

But about that bus…

There is a focus on vaccine research. Think of ALL the women who will be spared ever having to dance this dance if we can just come up with a vaccine, right?

Yeah…right.

Here’s the thing. If we don’t know what causes cancer, what are we vaccinating against?

(OK, let’s not ask the HARD questions. Hard questions are very pink, are they?)

Orenstein quotes Danny Welch, chairman of the Department of Cancer Biology at the University of Kansas Cancer Center. He’s clear. Speaking of vaccine research, Welch says, “I’d prefer to prevent it too, but to put it crassly, that’s throwing a bunch of people under the bus right now.”

He’s “dead on balls accurate” as they say in My Cousin Vinny.

According to data from 2009 (MBCN), there are about 150,000 of us living with metastatic breast cancer.

So I’m going to try to be clear.

Again.

VACCINES ARE FINE. It would be a wonderful way to get rid of this dreaded disease

VACCINES ARE FUND-ABLE. Who wouldn’t want to give money to prevent themselves from getting breast cancer. (Scare me enough and I’ll fork it over!)

VACCINES ARE ELUSIVE. I know, it’s easy to believe. Yet it’s very hard to deliver.

But hear what you’re telling me when you focus on vaccines to the exclusion of metastatic breast cancer research:

Rather than prevent death from cancer, I’d like to make sure I don’t get it.

The chance you won’t get breast cancer, or get it again, is what matters. Sorry you will probably die from it.

You’re expendable; this is about me.

There are organizations that want to feed us pink. Others seek to confuse “preventing metastatic breast cancer” with preventing death from breast cancer. We’re smarter than that. We know they are about helping everyone BUT the 150,000 of us who have, essentially, been thrown under the bus.

Here’s the good news: I’m stuck under this bus with some pretty awesome women. We are strong, we are clear, we are passionate, and we don’t care about the rules.

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31 Comments (+add yours?)

  1. Scorchy
    May 03, 2013 @ 02:31:16

    Wearing my tire treads proudly, my dear. Wonderful post.

    Reply

  2. NotDownOrOut
    May 03, 2013 @ 03:31:59

    And, of course, the financial rewards of vaccine research vastly outweigh the rewards of finding a cure for 150,000 women and men with metastatic cancer. that means you must direct the research to take place and not rely on market forces to give hope.
    If every woman in the world could take a vaccine against breast cancer, that is money in the bank to fund not only the research that uncovers the vaccine but research for many more drugs (and profits for shareholders). And there are more women being born every year so the market is self-sustaining. The vaccine has long-term financial potential for drug company profits that outweighs sales of a new chemo treatment to the existing population of mets patients: 150,000 x $7,000=$1 billion. http://www.livestrong.com/article/153376-the-average-cost-for-cancer-chemotherapy-treatment/ (Saying that the average cost of chemo treatment rose from $3000 to $7000 some time ago. The same article does recognize that a drug in the US can sell for much more so mets cases in the US could be worth more to a drug company).
    Contrast that with 6.6 billion women in the world (more born every day) paying only $390 for a course of the HPV vaccine. http://www.cdc.gov/std/hpv/stdfact-hpv-vaccine-young-women.htm (average cost per government). It means revenues of $2,574,000,000,000. That’s trillions of dollars and counting. Of course, the vaccine will likely be available only for people who have never had “breast cancer,” like the HPV vaccine is now given to young girls only because so much of the population already has HPV and is unaware of it. But, even so, the birth of new girls means growing revenues. The real or perceived attrition over time of mets patients means lost financial opportunity.
    All these preventative double mastectomies that high risk, genetically prone women are getting (just at the moment in their lives that they might use their breasts as something other than a form to hold up a pink bra) are women who will never need a chemotherapy drug. That cuts into the future profits from existing and “in the pipeline” chemotherapies.
    A patient can only use a drug once as a chemotherapy response. If cancer recurs or a tumor does not shrink, then a new drug must be used. That means that a new drug’s utility to the drug company wanes as efforts to prevent anyone else from getting cancer succeed.
    There’s no question that it costs a lot of money to fund drug research. Which project will the drug companies fund?
    As the number of women with mets shrinks, their treatment options will continue to shrink as the financial incentives for the research do. That’s why in recent memory there were shortages of some chemotherapy drugs for unusual child cancers. The drug companies stopped producing as the population needing the drugs shrank.
    I agree that it is pink culture that confuses the rest of the public, but it is financial reality that if money is not earmarked for your cause, then the economic reality is that no research will be done.
    It makes me sick to think of it.

    Reply

    • Lori
      May 03, 2013 @ 15:58:56

      Yes and wow and thank you! Awesome summary, Cheryl. The financial implications were in one mental version of this but got lost in my chemo-adled brain. So grateful for your comment!

      Reply

      • NotDownOrOut
        May 05, 2013 @ 05:50:17

        Today I saw a link on this blog to this video about how the FDA and drug industry view a cure to cancer as a career setback. burzynski-documentary-reveals-true-agenda-of-fda-and-cancer-industry-to-destroy-cancer-cures-that-really-work. I’m still thinking over what it postulates. It’s a depressing prospect for all with a cancer battle.

  3. nancyspoint
    May 03, 2013 @ 06:36:23

    Great post, Lori. I might not be under the bus at this moment in time anyway, but I am with you all the way.

    Reply

  4. bethgainer
    May 03, 2013 @ 07:03:48

    Well-said. Bravo! I did read the Orenstein article and, yes, it’s a must read. It should be required reading in schools.

    Reply

    • Lori
      May 03, 2013 @ 15:53:00

      Thanks, Beth. I agree Peggy’s piece is a critical read. So how do we get the attention of those drinking the pink kool-aid?

      Reply

      • bethgainer
        May 04, 2013 @ 04:16:33

        I wish I knew. It seems that no matter how many times people write or speak about the pink hoopla being harmful, the pink never fades. I wonder if the NYT would republish Peggy’s article on the first Sunday in October.

  5. Anonymous
    May 03, 2013 @ 07:40:15

    I am under the bus in Canada and me too feel forgotten in that pink craziness. But I am willing to win this war against what my doctors call my “chronic cancer”.

    Reply

  6. AnneMarie
    May 03, 2013 @ 08:23:10

    I’ve not been tossed under the bus but I’ve climbed to the side, as close as the pink caution tape will allow, to help pull all of you out….

    Love this post, love you more….

    xoxoxo

    Reply

    • Lori
      May 03, 2013 @ 15:50:27

      Love you more back, my dear. As I mentioned elsewhere, we are counting on you for the milk and cookies. And dark chocolate. And red wine. Oh hell, I’ll make a shopping list! Mwah

      Reply

  7. Carolyn Frayn
    May 03, 2013 @ 09:24:45

    Well said Lori, “The chance you won’t get breast cancer, or get it again, is what matters. Sorry you will probably die from it.” Yup… I’m Canadian, I’m under the bus with you if you don’t mind. In my opinion MBC is NOT a chronic disease, some may be living longer with it, but that statement smoothers the fear and truth that it’s killing us.

    Reply

    • Lori
      May 03, 2013 @ 15:48:36

      Mind? I hate that you’re here… None of us should be! But some of the strongest, most inspiring people are here too. And AnneMarie will keep bringing the milk and cookies. Thanks for joining the dialogue!

      Reply

  8. jbaird
    May 03, 2013 @ 10:59:49

    As another one thrown under the bus, I love this, Lori. Peggy’s article is right on. Are the 150,000 of us in the U.S. alone or worldwide? Just curious. Thanks for the shout out to all of us metavivors. xo

    Reply

  9. Jody Schoger (@jodyms)
    May 03, 2013 @ 13:25:27

    I’m right there with you , sister. Love this.
    jms

    Reply

  10. Alexandra
    May 03, 2013 @ 15:59:49

    What I liked in this article was the mention of PREVENTION. We need to make young women aware that changes in lifestyle to exclude toxic chemicals is believed to make a difference. I don’t understand why women are not shouting this from the hilltops. We need the Safe Chemicals Act, now before Congress. It will regulate toxic chemicals in the environment. Hopefully, after that, breast cancer will become less prevalent.

    Reply

    • Lori
      May 03, 2013 @ 16:42:15

      You are so right that we are living in an increasingly dangerous world and we can do better. I must respectfully disagree, however, that any single act, project, effort, change will ever prevent cancer. We can reduce our chances, to be sure. But “prevent” is a long way off, if it achievable at all.

      So glad for your voice AND your support of the Safe Chemicals Act.

      Reply

  11. TheDirtyPinkUnderbelly
    May 03, 2013 @ 18:42:30

    Chronic Cancer? That’s just stupid. My cancer is chronically killing me.

    Reply

  12. BlondeAmbition
    May 03, 2013 @ 19:24:37

    Outstanding write-up, Lori. NO ONE puts baby in the corner and NO ONE leaves their friends under the bus. That bus also doesn’t care whether you were early stage, late stage, or about your ER status and we all know too well that our status can change in an instant.

    With regard to prevention (of the non-vaccine variety) I’d add that it’s also irritating to see a known risk factor (alcohol) playing such a large role in many fundraisers as the event activity itself and/or as an event sponsor. I’m far from a tea-totaler, but I think it sends the wrong message. Same with products (Hello, Progresso!) that use BPA in their packaging or contain ingredients such as protein soy isolate, a form of soy that BC survivors are told to avoid. And as far as safe chemicals, just today, every media outlet was christening triclosan (an ingredient found in many anti-bacterial soaps and body washes, toothpastes, etc) as the latest hormone-disrupting villain.

    The icing on the cake (for this week) had to be the late day news release of Ambassador Brinker’s 64% salary increase. I’m guessing Komen thought nobody would notice that little gem after 5pm on a Friday. There’s something really, really wrong in a world where the head of a BC non-profit drives an organization off the cliff and is handsomely rewarded. Oh, and Nancy … how much of an increase did Komen give to MBC funding last year? Yeah. I thought so. : p

    Reply

  13. katherinembc
    May 03, 2013 @ 22:51:20

    I am with ya on the bus….Another Stage IV woman said metastatic breast cancer is like getting hit by a bus…but being stuck to the grille as the bus keeps going: http://ihatebreastcancer.wordpress.com/2011/04/02/cancer-patients-commandeer-pink-bus-for-3-day-joyride/
    and don’t miss the middle seat of the breast cancer airplane:
    http://ihatebreastcancer.wordpress.com/2011/04/18/greetings-from-the-middle-seat-of-the-breast-cancer-airplane/
    rock on….

    Reply

  14. Cancer Curmudgeon
    May 04, 2013 @ 12:36:09

    Liked Notdownorout’s point that the vaccine would not be for anyone with breast cancer, regardless of stage. I want a cure for mets, prevention that lesser stages ever progress or recur, and prevention that cancer ever happens to those who have yet to develop it. Silly ol’ me, always wanting too much. I don’t understand why all these cannot be investigated. What is that old cliche about not putting all one’s eggs in one basket? Am I the only one who thinks cancer research should look at MANY ideas, for ALL stages? You know, because I stupidly thought every life was worth saving.
    And about vaccines, forget it. I learned a nasty lesson this week that vaccine debates are too heated, and most kids aren’t getting that HPV one anyway because of the belief it causes more problems than it solves. Of course that is parents making a decision for their kids and maybe pre-breast cancerous women would be more likely to get a breast cancer vaccine once in adulthood, but given the distrust of vaccines, not so sure.
    The Cancer Curmudgeon is feeling much despair over the doubt that any medical issue can ever be solved or discussed without the maximum amount of heated debate. Knocks the fight right out of me.

    Reply

    • Lori
      May 04, 2013 @ 15:39:27

      Yes, yes, and another yes.

      Not to mention the fact that all the fighting is just more money slipping away….

      Reply

    • NotDownOrOut
      May 04, 2013 @ 19:40:40

      My point is that market forces don’t put assets on projects that do not promise financial returns. That is not meant to suggest that non-market forces cannot alter the expenditures. I think charities can alter the forces by paying for the research. Look at the research efforts for children’s cancers. When charity funds research efforts there can be developments not available in the marketplace. Look at St. Jude’s, Children’s Cancer Research Fund, etc. The point is perhaps to come out from under the pink umbrella. You know the parties better than I do. Can you imagine a way to steer the giant pink ship in a better direction? Because if that can be done then that would be the best move. But it seems like the pink movement is focused on low-hanging fruit–easier to reach solutions.

      Reply

  15. Trackback: Weekly Round Up – The Cancer Is Never Done With You Edition | Journeying Beyond Breast Cancer

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