Wednesday, March 23, 2011

What Do You Want?

I feel like someone has removed my brain, stomped on it and reinserted it into my head.  So might you if you've been following the debates raging on Facebook and the breast cancer blogosphere over the last week or so.  From critically analyzing the societal worth of campaigns like  "I <3 Boobies" and "Feel Your Boobies", to a blog post improbably titled, Breast Cancer: Let’s Fight The Disease – Not Each Other, which actually seemed to tacitly disparage the National Breast Cancer Coalition's mission to stop breast cancer by 2020, and then ironically erupted into a war of words in the comments section; I feel exhausted yet also emboldened and motivated.  

On one hand it was disheartening to see the blatant ignorance that still exists in considering the breast cancer culture, and indeed the censorship that went on with one incident when confronted with breast cancer truth.  But on the other hand, I saw spirited discussion, energy for new ideas and deep questioning of the breast cancer status quo which gives me hope that change might be coming to the breast cancer movement.

But there's one point on which I am still very confused.

CBS News recently ran a story called "Breast cancer mommy; Brave, beautiful.....and bald". Essentially it was a fluffy little piece about cancer patients losing their hair, and how they can "rock their baldness" and still be "brave" and "beautiful".  Yep heard all this before. I get it.  Hair doesn't define you.  Hair loss shouldn't affect your self worth.  Cancer can't take away the essence of you; yada, yada, yada.

Then I read the author's biography, and I felt my blood pressure beginning to rise to something past a slow simmer;
"Meredith Israel, 37, was diagnosed with stage 4 metastatic breast cancer in June, 2009. She says she's in the fight of her life, determined to prevail for the sake of her family, including her 3-year-old daughter, Niomi, and her husband, Gary. Meredith found her breast cancer through self-examination and a mammogram. Since being diagnosed, she has raised more than $100,000 for breast cancer research and has been a vocal proponent of self-exams and early detection."
Now don't me wrong.  My heart aches for this woman.  I understand only too well the devastation of a Stage IV cancer diagnosis and to throw children into the mix as well?  Well, it goes without saying that cancer is never a good news story.

According to the story, Ms Israel "has raised more than $100,000 for breast cancer research and has been a vocal proponent of self-exams and early detection."  Now I really hope this story was reported correctly and the $100,000 really did go to research, and if that's the case then I applaud Ms Israel for her efforts.  It's a wonderful achievement.

Then  my mind started working overtime.  I wanted to know what kind of research?  The kind that could possibly result in treatments or yield findings that could potentially help Ms Israel with her prognosis?   Or did the money go to research that, although might eventually be helpful to others, won't help further knowledge about metastatic breast cancer?    Then I wondered why would someone with metastatic cancer openly advertise themselves as a proponent of breast self-exam and early detection?  Neither causes are scientifically proven to offer any guarantees as either reliable methods of screening, nor indicators of whether a person will go on to develop metastatic disease.  Further, neither of these causes have really been shown to impact mortality rates from breast cancer, which remain barely unchanged in decades.

It is at this point I should clarify where I'm going with all this.

Many of the breast cancer fundraising campaigns we see today are invariably founded, or have  involvement at some level, by breast cancer survivors.  The "I <3 Boobies" and "Feel Your Boobies" campaigns are good examples, and indeed Susan G. Komen for the Cure's founder, Nancy Brinker is a breast cancer survivor as I'm sure are many of the staff and volunteers.

But here's what I don't get.  I have Stage IV breast cancer.  It's a bad situation.  Right now I'm focused o n trying to get the best treatments and give myself some sort of a fighting chance (whatever that means).  I'm well aware that in order to truly survive this disease I need some sort of a miracle.  One that might, just might, come out of a research laboratory.  But it's going to take time, money and focus by all relevant stakeholders.   I've also come to realize that getting research funding to focus on metastatic cancer is a pretty tall order.  It's not a popular mission for myriad reasons, and it's a fight to steer money in this direction.  So what can I do?  I can donate.  I can tell my friends and family to donate.  And I can use this blog to speak out on the topic and try to get people to think more deeply about this issue.

It all comes down to the fact, that I want something better for myself.  There I said it.  Selfish me.  Wanting to live a long life as well.  Wanting to live the dream of the victorious cancer survivor.

And yet, still we throw money at fundraising campaigns whose main priorities are breast cancer education, awareness and so-called early detection programs.  Research is treated like the ugly step-sister and invariably gets pushed down in the priority spectrum, or just not even funded at all, in favor of the glitz, sass, sexiness and glamor of more cutesy breast cancer "awareness".  How much more awareness do we possibly need?  We're stuck in a rut that's not moving the fight forward to end this disease.  We're just screening and diagnosing and feeding the cancer machine, with not enough thought as to how we can stop the machine and how we can help the people stuck inside it.

Well, I'm sick of it.  Where's the anger people?  Why don't we want something better for ourselves?  Why not be advocates for research that might actually help those of us currently dealing with this disease AND those still to be diagnosed? What's wrong with being selfish?  It's our lives we're talking about here.

And for those selfless people who continue to work so tirelessly to fund raise for these awareness campaigns; I thank you for your efforts, but I implore you to ask yourselves who all this awareness is helping. Consider the questions raised by Gayle Sulik where she asks "What Good Is Awareness If...."  

We're stuck in a dangerous rut that values breast cancer awareness and early detection as some kind of holy grail never to be criticized.  Awareness and early detection will not make any difference to my life or my outcome, nor the thousands of others dealing with this disease and the 40,000 women or so statistically slated to die from breast cancer this year alone.  Sure, awareness and early detection campaigns might help get someone diagnosed, but then what?  Successful treatment? Maybe, maybe not.  The bottom line is this.  Science still can't tell us who's going to draw the short straw.  It could happen to anyone at anytime.  Regardless of early detection, breast-self exams and no matter how much more money we throw at breast cancer awareness.

We can and should be doing better.

Awareness DOES NOT EQUAL Breast Cancer Cure.

Ask yourself, if you were me, what would you want?


  1. Hear, hear. You summed it up perfectly when you said awareness does not equal cure. And I can't imagine we're short on awareness, when we're attacked by pink every October. (I'm taking a break from the "b" word, but they seem to be attacking as well, all year long.)

    I know what I'd want if I were in your shoes. The same thing I want for you, and everyone else who's dealing with metastatic cancer. I'd want answers. I'd want the money spent to come up with better treatment and/or screenings.

    Well done as always.

  2. Every woman is AWARE of BC. Trouble is, no one thinks it will happen to them. Or that their cancer will ever metastasize. Or knows how little attention/research dollars actually goes towards curing this b*tch already.

    My mom died of BC brain mets and, even after six+ years of being NED, not a day goes by that I don't wonder WHEN (not if) I'll have to tangle with this beast again. I guess I'm supposed to sit around and hope that a cure will fall from the sky before then so every stage IV person can live to a ripe, old age. What a truly sucky place to be. And angry just doesn't quite seem to adequately sum it up, somehow.

    Keep blogging and talking about it, Anna. We need every voice we can get...

  3. Anna, You are not selfish. You deserve more, we all do because we all want the same thing, a cure,or at least better treatments to extend lives of ALL affected by this disease. Like you keep saying, this will only happen through research. I can't figure out why this is such a hard concept for so many people to grasp, and I mean people who should know better. So go ahead and get angry. It makes me angry too. Sometimes anger is good, even necessary.

  4. Brilliant Anna. Your eloquent rage and kindness to possibly misguided others are an education to us all.

  5. Jacks - I always appreciate your viewpoint as I know we come at this with the commonality of breast cancer but with some differences. Your views to me invariably represent the big tent that could be possible.

    Felicia - I'm so sorry to hear about your Mom and about your own diagnosis. I know you get this, through painful experience. Why does everything seem to stop with awareness?? Where's the progress?

    Nancy - I don't understand why so many people can't understand the big picture here. If mortality rates have not significantly changed in decades then how are all these ridiculous campaigns helping? Too many people just sitting back and thinking that everything's going to be okay. Wrong!

    Ronnie - always a pleasure. Most people don't know until they are prepared to truly listen. And that's half the battle here unfortunately.

  6. Here's what we need, want and must do.

    First: this has nothing to do with being selfish and EVERYTHING to do with sharpening our focus.

    We need to build a better bandwagon. Not - for God's sake - another nonprofit organization. That's part of the problem already. Half of the people with cancer seem to have formed their own fund-raising entity.

    We need voice that continues to identify like-minded MEN and WOMEN who will actively research promising work in progress. How are we going to get a cure for you if we don't know who is doing good work? We can rant on the goofy boobie people ad nauseum. But you know what? They don't matter to me.

    YOU DO. Metastatic breast cancer matters to me. I've lost friends to this disease. It's why I do what I do 24/7. I'm out there with you, for you reading, asking, finding, asking again.

    Let's all focus and make the best possible use of our time.

    You are incredible.


  7. Anna, you want what every normal person wants. Answers to a long life. Your answers are wrapped up in research and I can't understand either why more money isn't dedicated to it. Having had cancer in my life (with my mom) for so very long, it surprises me that people have no idea what a killer this disease is. Maybe that's it, despite the statistics, unless you've personally experienced it, you're taken in by the pinkness of it all. This sucks. I'm glad you're able to write about it so eloquently. I have to believe the words in our blogosphere will get to the right people sooner rather than later. I hope.

  8. The angry people are out there…they just need a little direction and a strong voice.

    Surely the women who have walked in your shoes in the past would have shared your frustration with the lack of funding allocated to bc research but not had the vehicle or empowerment to get their voice heard.

    For you, for the women who are no longer with us and for the women who will in the future endure metastatic need to summons all your strength, support and 'selfishness' and demand change!

    Working together women can make a difference, and you are one of those women.

  9. Anna…I am ANGRY too! Just not as eloquently articulate as you, my friend. I am trying to spread some awareness of the brain cancer plight….one of THOSE cancers that NO ONE wants to talk about because the survival rate is pretty close to non-existent. The research for finding even some meaningful treatment for brain cancer/tumors gets hung up due to a lack of money for research. Clinical trials are slowed because there is little funding to help brain tumor patients even participate. The science will never be tested unless there are people to test it on. How will there ever be advancements? There has only been one FDA approved drug in the last 25 years and almost no change in the survival rate in the last 100. Angry??? When I watch a month’s worth of football games and calculate all the money that goes into producing pink cleats and uniforms for all those players, refs and coaches, the pink banners, the pink cheerleaders, the pink everything….for what? AWARENESS? How much more AWARE can our population be? The NFL’s promotions are followed by those of MLB, the NHL and NASCAR. Enough AWARENESS!! Of course, some of this hoopla turns into donations for Komen, the American Cancer Society, Stand UP to Cancer….but actually, how much of it goes to research “for the cure” and metastatic cancer research? Thanks to you Anna, we know how much is channeled there by Komen….comparatively little.
    In the name of AWARENESS, the bandwagon is filling with people lining their pockets hand over fist- - Some maybe donating about 10% of their sales (if that) to breast cancer. Wouldn’t you happily donate $100,000 to make $400,000 minimun? (You have to know that product mark up is at least 100%.) Breast cancer awareness/research is a pretty darn good business investment. And how much of that $100,000, if given to Komen, makes it to research? That might be about $21,000, barely enough to pay a work-study student to clean the Petri dishes. And in the pink dust, lay all the other forgotten cancers, because they won’t generate the frenzy, the audience, the profits that breast cancer does. Don’t get me wrong… capitalism is the American way and $21,000 per million is better than nothing, but there has to be lots and lots and lots of millions at that rate, to find a cure for anything.
    There is no crystal ball….we don’t know which cancer may strike us. For those who find themselves with a brain tumor diagnosis, all the awareness in the world would not have made a bit of difference for them because there is no routine screening, no self-exam, and no blood test available. And for all the awareness, for all the screenings and self-exams we want people know about and take advantage of, and no matter what the kind of cancer it is, in the end, when we are facing the doctor as he or she delivers that horrible news, what we all REALLY want THEN…. is THE CURE…..and RESEARCH is the key to “the cure”.
    Thank you for a place to blow off some late night steam. I am with you.

  10. Hi Anna,
    I have been trying to keep up with the recent discussions and while I may not agree with all of it, it certainly is thought provoking.

    I have never had breast cancer so I cannot put myself on that side of the fence. I am an oncology nurse and I have been the breast care coordinator at my hospital for the last 10 years. Not an expert by any means and probably the most non-political person you will ever meet.

    I think I do understand some of your frustration in the “PINK” movement. I have no doubt some of it is very insulting. But think about what that movement has actually done for breast cancer. As the breast care coordinator, October is a big month for me filled with pink and information on prevention and early detection. As I prepare, I have trouble looking the other patients in the eye. Who is championing their disease? Who is raising money for their research? Lung cancer is looked at as a self inflicted disease, prostate cancer is a male disease and men don’t talk, ovarian is talked about very little because it often presents as metastatic disease and on and on and on. Is anyone aware that March is colon cancer awareness month and their color is blue? Right now colon cancer is the one cancer that rarely if ever has to happen. There is no question among the medical community that colon cancer can be prevented by following the guidelines for prevention and early detection. If people would get their colonoscopies and pay attention to family history, colon cancer will not have a chance to develop. Who is out there talking about this?

    You are 100% right that there has been very little advances in the treatment of breast cancer, especially metastatic breast cancer in the past 10 years. Is that because not enough money has gone into research or is it the nature of the beast? We talk so much about prevention and early detection because the only thing we know is that if we can find breast cancer before it spreads (metastasizes) we have a very good chance at curing it. We can only find it early if women get their yearly mammograms, self breast exams cannot hurt and see their physicians regularly. That is why this is the focus of all those “pink campaigns.”

    So that leaves us where we started. What about women like you who have metastatic disease and even if you wanted to follow the guidelines didn’t get a chance? I don’t know. But what I do know is that we need people like Komen. No other cancer has an ally like them. I do agree with some of the critism but as a clinician, there is no question there is value in what they do for early and metastic breast cancer. I’m not saying you disagree with anything I have said. I think my point is that no one has forgotten about women and men with metastatic breast cancer. One death is too many for people on this side of the fence. Doctors and nurses sit on the edge of their seat waiting for new drugs to be FDA approved. We got to bed every night with all of you on our minds and in our prayers. The simple fact is that more has to be done but I believe we are trying to do it. We just aren’t there yet.

    Please keep talking and fighting for what you believe in. You never know who will be listening. You have the right to want more and it has nothing to do with being selfish. It isn’t a perfect system and yes people are making a lot of money in the name of research but I have to believe that for most of them, breast cancer and the cure is the only thing that matters.

  11. WHOA Anna, I really enjoy following your blog. I'm stage IV, and I feel like you're voicing my thoughts better than I personally can.

    What do you think of Metavivor?

    They purport to raise funds specifically for this issue, but they're no komen. I never heard of them before I got sick.

  12. This is so well said. I enjoyed reading it and I totally agree. My question for you... What research organization(s) do you support? Where should our time and energy be focused? In this massively over-pinked sea, it's hard to discern what is real, legit and worthy. It's something I really struggle with and I'd love to hear your thoughts.

    You might also enjoy this post:

    Also, have you read Bright Sided: How Positive Thinking is Undermining America? Brilliant.

    Anyway, great post. Thanks for sharing.

  13. This is the heart of the matter, Anna. About one-third of breast cancers recur. This means that a hefty number of the diagnosed will eventually find themselves dealing with a metastasis. It doesn't matter whether the first diagnosis was found accidentally, by clinical exam, through BSE, or on a mammogram. Those are the sad facts. We do not know why these breast cancers come back.

    In addition to this, screening is not working as well as it should (with too many false positives and false negatives), and BSE has not been found to find tumors early or reduce mortality. Keeping the focus on raising money for breast fondling and "early" detection to the exclusion of research into recurrence is missing the boat. This is NOT awareness. It's putting our collective heads in the pink sand.

    And like Kathy said, who's fighting for all the other cancers? The pink parade not only isolates people like you, it leaves to the margins every other person with cancer. Metastasis as the thorny problem that pokes a hole in the hope balloon.

    I want you to have your miracle. I'll meditate on it, pray for it, and do anything I can do to get this word OUT. We need your voice, Anna. Desperately.

  14. Great blog - thanks for writing it.
    Reading what you and all the others have said here, a few key points come to my mind. I'm a 7+ year stage 4 BC patient, so have not only a stake in this subject personally, but a fair amount of experience in the "sea of pink".
    First, "awareness" was and still is a good thing. What is lacking is awareness campaigns, however, is the fact that 30% of women with early stage BC will still advance to stage 4 disease despite treatment. So yes, we need hard scientific research (and money for such) to figure out how and why this happens.
    The public in general has been pinkwashed into the mistaken belief that early detection is a guaranteed cure.
    Secondly, it would appear that the statistical "cure rate" for BC has improved in at least some part to extremely early detection of breast tumors that may not have needed treatment in the first place, but were treated and "cured" nonetheless. This has distorted the overall statistics somewhat, and it has also led to unnecessary surgeries and treatments that are not without risk.
    The combination of these two things only goes to show that we desperately need much more research on WHY cancer takes hold, spreads and becomes metastatic. Breast cancer doesn't kill people until it has spread outside of the breast, so isn't that what should be prevented most of all?
    Just my two cents on the subject.
    Thanks again for the blog... keep up the good work!

  15. Thanks, Anna. I have been living with Stage IV since 2004 and I am a single parent of three. I mirror your frustration. I would like to add that every dollar donated toward awareness campaigns and other non-lifesaving feel good fluff is a dollar taken away from meaningful research. That's a LOT of money. We need to start driving home this message to everyone who will listen. I think that people have their hearts in the right places but they have been fed the party line for so very long. Let's all keep talking, spread the word on fb and other places. We can do this.

  16. @Jody - thanks for always keeping things real. Your energy is contagious.

    @Stacey - I have to keep believing that the world is listening to our blogs. Just sowing the seeds of discontent.....

    @Flossita - thank you for the encouragement. Reminds me why all this blogging is so worthwhile and thank goodness for social media technology

    @uvmer - intelligent and articulate dissent as usual. Your comments always remind of the other dire consequence of all this PINK awareness. Our UNawareness of all of the other dreadful, incurable and invariably orphan diseases. The relentless monopolization by Pink of the hearts, minds and indeed the wallets of the donating public only serves to marginalize and disenfranchise anyone NOT 'lucky" enough to get breast cancer. I continue to be one of your greatest admirers in the work that you do to put brain cancer at the forefront, but also the continued and unwavering support that you continue to show for those of us in the breast cancer community. We can all take a page out of your book uvmer. You are one classy lady.

  17. @Kathy - thank you so much for this comment. We hear so little from clinicians in the field so I'm very appreciative of you sharing your thoughts here. I agree that the BC movement has gotten us to a point, where everybody is now aware. But now where do we go? It feels like it's time to recalibrate the message and refocus the priorities. I have no doubt that the work that Komen has done to bring us to this point is indeed invaluable, BUT I cannot continue to abide their continuing to fund Education at almost DOUBLE the rate of their Research program. They have the financial muscle to be able to change the game on the research front - if only they would re-prioritize and be true to their mission of being "for the cure" and "ending breast cancer forever". Also your point about all the other diseases left in the dust by Pink is well taken and my comments to @uvmer equally apply here. To be honest I find pink October to not only be personally distressing but a complete embarrassment. How can I look at those around me in the eye and think that my disease is more worthy than theirs?

    @Dahlia - welcome! The founder of Metavivor actually guest blogged for me very recently. Check out the entry "Trying to Stay Alive on 2%". Sure they don't have the financial weight of Komen, but they have their priorities straight and you have to start somewhere. They fund research entirely for metastatic breast cancer. It's also worth considering too that it may be the quality of research and not necessarily the quantity, so it seems entirely possible to me that a small organization could lead the way on the BC mets front. Innovation, co-operation and co-ordination is what's required here.

  18. @Katherine - I'll check out that blog, and yes I have read Bright Sided. Barbara Ehrenreich is brilliant!

    @Gayle - And we need your voice as well. Thank you for always bringing reasoned and intelligent dissonance to the table.

    @Christina - that's more than 2 cents worth and I agree with everything you are saying. If we could solve the 'mets' hows and whys through research, then half the battle would be won, and survival statistics might actually mean something.

    @Sandy - the amount of money that is NOT going to research in favor of education/awareness is ASTONISHING. How can this continue to be a justifiable position for the stakeholders?

  19. Here is my commitment: I will keep talking about this stuff as this is the awareness that REALLY needs to be raised. When Pinktober rolls around, I would like to start a viral campaign on facebook to channel funds to Metavivor. While my circles are astonished by this information, they are hungry to hear what they CAN do as well. I have already posted links on my fb page, but I think realistically, the most money can be raised when it's really in everyone's face. I'm not big on the "if you ___ then post this to your profile" messages, but if we can come up with a powerful message with the Metavivor link, I think we could be effective in redirecting significant funds to the right place. Open for suggestions and hoping all you vigilantes will join me!

  20. Perfectly written!

    You deserve better and have every right to want better for yourself.

  21. @Gayle - I just ordered your book on Amazon. Your comments on this post made me think about a very tough conversation I had with my mom. She was 4.5 years into her metastatic diagnosis and not doing well. We were talking about her original diagnosis (a full ten years before the metastatic diagnosis)and she told me a story she had never told anyone - not even my dad. Her tumor was originally discovered when she went in for an annual exam and her nurse practitioner felt a lump in her breast. She told my mom it was smooth and therefore "probably nothing" but that she should follow-up. My mom took the "probably nothing" assessment and ran with it. She didn't follow-up with the office until her next annual, when she was diagnosed with Stage IIIa. When my mom told me that story, she cried and said "I just can't imagine how different my life would be now if I had done something right then and there." I could hear the guilt - and maybe even shame - in her voice. I cut her off and told her she couldn't punish herself with those types of thoughts. Breast cancer is a freaking crapshoot. What about women who are Stage I and recur a few years down the road? What about the fact that given my mom's Stage III diagnosis in 1996 her doctor enrolled her in a taxol study (in addition to her standard rads and AC). Mom was given the highest dose. Maybe that bought her those extra years. Then again, maybe it didn't. Maybe she would be cancer-free and still with us. We just don't know. But the cancer came back. And we didn't have an effective treatment. THAT'S the problem.


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