The Dark Side of Pink Awareness

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guest post by Rachel, of  The Cancer Culture Chronicles

Note from Breast Cancer Action: In response to last week’s blog post from Angela Wall, several of our members commented on our Facebook page and shared their thoughts about the efficacy of breast cancer awareness campaigns. Rachel from The Cancer Culture Chronicles noted that women with metastatic breast cancer, in particular, have not benefited from the “pink razzamatazz”. We are honored to share her words with more of our members via this week’s blog post.

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The color pink and the pink ribbon have become the ubiquitous and saleable trademarks of breast cancer awareness and the associated pink fundraising machine.

Through canny marketing, cutesy slogans, pink imagery, and campaign after campaign, we hear the pink awareness messages loud and clear.

Early detection saves lives.

Education saves lives.

Pink ribbons save lives.

BREAST CANCER AWARENESS SAVES LIVES.

But what is breast cancer awareness?

According to Wikipedia, breast cancer awareness is defined as

“an effort to raise awareness of breast cancer and reduce the disease’s stigma by educating people about its symptoms and treatment options. Supporters hope that greater knowledge will lead to earlier detection of breast cancer, which is associated with higher long-term survival rates, and that money raised for breast cancer will produce a reliable, permanent cure.”

Is this the definition of breast cancer awareness the public learns about through pink ribbon awareness campaigns? Recently whilst participating in online discussions about various aspects of breast cancer culture, I learned what some members of the public have become  aware of, such as that;

• breast cancer is “technically curable” or “completely survivable”;

• we need to use humor, sexy slogans or cute pink imagery in order to “ease the pressure” of cancer and “capture the public’s attention”;

• no one wants to hear that breast cancer is scary;

• we “should be grateful for how far breast cancer has come”;

• to experience a breast cancer diagnosis is somehow “lucky” because it’s the “good” kind of cancer;

• the breast cancer movement is the “envy of other cancer sufferers”.

Is this what pink awareness has brought us?  Has the pink marketing juggernaut been so effective that people now truly believe that the billions of dollars raised have elevated breast cancer to the rank and file of a less serious curable disease?

From my vantage point, as a person with incurable stage IV metastatic breast cancer, this disease is still a frightening deadly beast, and the fight is far from over.  Short of a miracle, or some other run of bad luck, I will die from breast cancer. I certainly don’t feel “lucky” or that anyone need be “envious” of me for having the “good” kind of cancer, and I’d wager the estimated 150,000 people living with metastatic breast cancer in the United States feel the same way.

If the general public really thinks that breast cancer is ‘technically curable’, open to humorous marketing, and the envy of others, then the pink awareness machine has failed miserably not only for those who are at risk for breast cancer and facing breast cancer but also for those who have inconveniently died from the disease.

The names of the dead are written on t-shirts at all those pink fundraising walks and races. Candles are lit and solemn moments of silence are observed.  Faces of the dead are memorialized on virtual pink buckets of fried chicken, or some other improbable pink product placement. All in the name of breast cancer awareness and raising money for the noble cause.

The pink awareness machine, by its symbolically emotional gestures, seems to convey that it cares about the forty thousand or so women and hundreds of men who lose their lives to breast cancer every year.

But does it really care?

Did you know that this nation’s largest breast cancer fundraising organization, which was largely responsible for the instigation and rise of the pink awareness machine, contributed less than 19% of its total resources to actual breast cancer research in 2010?

Did you know that metastatic breast cancer, which accounts for around 90% of breast cancer mortality, receives less than 2% of all monies directed to cancer research?

Does it seem possible that the pink awareness machine has done such a good job of selling the premise that breast cancer is a “survivable” disease, that society continues to mistakenly pour money into more “awareness”, “education” and “early detection”, unaware that it is doing so at the expense of potentially life-saving research? And in turn, blithely unaware that none of this pink awareness is helping to move the fight forward to breast cancer eradication or indeed a cure?

This is one of the terrible ironies of all this pink awareness.

Women and men with Stage IV breast cancer are not the happy-happy-joy-joy-Sheroic survivor stories portrayed in the popular pink culture.  As a community we continue to fight; not only for our lives, but for official recognition by a mainstream breast cancer movement caught in a dangerous rut of pink unawareness. We are tired of our deaths being used by marketers to sell emotionally charged displays of pink, designed to generate both fundraising dollars and profits. Fundraising that the metastatic breast cancer community continues NOT to benefit from.

Breast Cancer AWARENESS? I think not.

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For more information on metastatic breast cancer, check out the Metastatic Breast Cancer Network for advocacy and support, and Metavivor for research funding, news and initiatives.

Following a career spanning fifteen years in public accounting and tax consulting, Rachelhnel is now a full-time blogger. In her main blog, The Cancer Culture Chronicles, Rachel writes about her personal experiences as a woman living with metastatic breast cancer, her observations of the surrounding breast cancer culture, as well as other important issues relevant to the breast cancer community. She also writes a magazine-style women’s interest blog at Can-Do Women. Hailing from Australia originally, Rachel holds an Australian Bachelor’s degree in Accounting, and Masters’ degrees in Business Administration and Science from an American university. She is forty years old and lives in coastal New Jersey with her husband and small dog.

34 Comments

  1. Roos Demol
    Posted April 26, 2011 at 1:30 pm | Permalink

    Thanks you so much for this post. I was lucky enough to survive breast cancer, my mother wans’t.
    I have always resented the pink brigade, because they turn a horrible disease into a joke and a platform for wanna-be celebrities.
    Thank you so much for sharing with us! You are in my thoughts!
    Roos Demol

  2. Caelidh
    Posted April 26, 2011 at 1:30 pm | Permalink

    I just saw this season another Susan B Komen pink product in LOWES.. a Pink yardflag.

    I want to ask.. how many products does LOWES sell that probably contribute to Breast and other cancers?…

    How is selling another consumer item helping reduce the amount of plastic and other chemicals that are shown to cause cancer?…. hmmm.?

    But I am sure it looks GREAT in your yard… and shows others that YOU SUPPORT BREAST CANCER AWARENESS and aren’t you SOOOO cool!

  3. Posted April 26, 2011 at 1:41 pm | Permalink

    Such a thought-provoking post. Yes, it DOES seem that “the pink awareness machine has done such a good job of selling the premise that breast cancer is a “survivable” disease that society continues to mistakenly pour money into more “awareness”, “education” and “early detection”, unaware that it is doing so at the expense of potentially life-saving research.” Blinded by the light. Time to blink, and refocus.

  4. Posted April 26, 2011 at 3:23 pm | Permalink

    I don’t have much to add, but I wanted to thank you for your heartfelt post. I recently had a breast cancer scare and had no desire to don pink anything during those difficult days. Our community recently lost a mom to breast cancer. My thoughts and prayers are with you.

  5. Posted April 26, 2011 at 4:24 pm | Permalink

    Thank you for this, I have done the race for life for the past few years, I am doing it again this year but one month ago I said it would be the last. I am switching from cancer research to macmillan cancer support, purely beacuse beacuse what is raised is spent on wages and after the governemnt take their cut leaves very little to actually go into the research that is so much needed. Yes it is needed, without it I could die . .. I was diagnosed in 2007 and in 2009 in was diagnosed with bone metz which quickly spread to my neck nodes and liver. I have had clinical trials, some that worked, some that didn’t. . I have now gone onto an alternative route along with conventional treatments, so far this is working for me. . .

    Cancer is not pretty pink, it is dark and ugly, but it doesn’t have to be all doom and gloom. I live my life, i enjoy it and make the best of every day. The main thing that i have realised in the 4yrs that i have been fighting is that a positive mind can move mountains . .

    Cancer Awarenss IS needed, it is needed to catch cancer early so that it can illiminate further spread. If my cancer had been picked up a year earlier, I would not be in the position that i am in today . .. What I say is, Keep raising awarenss and lets save our childrens lives

  6. Liz S
    Posted April 26, 2011 at 7:55 pm | Permalink

    What about the Revlon Run/Walk. I’ve been talked into doing that this year. But do we know that Revlon products do not cause cancer? Is Revlon using us to promote their products? How much of that money goes directly to BC research and support services? I would love an answer to this.

  7. Posted April 26, 2011 at 9:48 pm | Permalink

    This is a magnificent, poignant posting. When I was diagnosed, people would tell me how lucky I was to have the “good” cancer. It really was an attempt to make them feel better at the cost of minimalizing my grief.

    Thanks again for sharing your views. Your voice needs to be heard!

  8. Posted April 27, 2011 at 1:12 am | Permalink

    This article is SO true.It is infuriating, and I always wanted/demanded to know what SBK does w/the millions they raise.They have bulldozed women into believing if they PARTICIPATE in their fund-raising WALKS, bc will be vanquished.”Something we can do!” Such bullsh!t!
    Plus, although I have friends from “my class” at BC.org who are living with mets , and so I understand the non-glee of it,I wanted to add that WE all know BC is thge most coming-backest cancer.Are we ever free of it? No way to tell.My onc said “Cancer-free after 5 years is a cure.”
    I said–“I have a friend who got it back after *6* years.”
    “well THAT’s a new case.”
    OK-now I understand we’re cash cows for EVERYONE.Because docs CURE ratings, instead of falling w/relapses-get higher if they perform ANOTHER cure.

  9. Posted April 27, 2011 at 3:44 am | Permalink

    Did you know that Susan G. Komen For The Cure Foundation’s
    fund-raising events, especially their Races for the Cure, actually lose money? That’s right. As posted on their website, their most recent IRS 990 indicates that they lose millions of dollars on these Races. This is scandalous. The good-hearted men and women who participate in the Komen Races believe that they are helping to fund research for the “cure.” They are not. They are wasting their time and money. I have had two accountants verify their loses as submitted to the IRS. When is this scandal going to break?

  10. Posted April 27, 2011 at 3:47 am | Permalink

    Another important statistic: whereas survival from breast cancer has increased 25% over the past thirty years, the incidence has doubled. In the race for the cure, cancer is winning just by virtue of the number of new cases: 1.5 million around the world this year. When my mother was diagnosed with breast cancer in 1975, the risk was 1 in 14. It is now 1 in 8.

  11. Posted April 27, 2011 at 7:39 am | Permalink

    Great post. It seems that metastatic breast cancer is where breast cancer itself used to be before the 70s and 80s, in the closet. I appreciate the increase in awareness and openness in 2007 that allowed my children not to feel ashamed for others to know that their Mom had breast cancer. But now it is time to shift “awareness” to the actual realities of the disease, and on evidence-based approaches for tackling the disease.
    As far as research on metastasis, I’m curious where the 2% figure you use originated. I’m fairly sure it does not take into account the significant resources allocated to drug discovery and clinical trials. There are currently billions of dollars devoted to clinical studies of metastatic disease, and on development of treatments. It may not be the “right” research, but there are billions being spent. A search on clinicaltrials.gov this morning pulls up 1752 clinical trials on metastatic breast cancer. Significant industry money is spent both here and abroad on drug discovery, and on clinical trials to prove their efficacy for the FDA and other regulatory bodies. It is hard to get accurate figures on the amount of funds spent by industry, but it is clear that the majority of the billions spent in cancer drug development are spent on developing drugs for metastatic disease, as they must first prove efficacy in that population before moving to the adjuvant setting. There are 887 new drugs in the pipeline for cancer that are currently in clinical trials or are awaiting FDA approval, 91 of which are for breast cancer.
    The National Breast Cancer Coalition continues to advocate for development of treatments that provide meaningful benefits that outweigh the harms as part of our Clinical Trials Initiative, but we are also advocating for putting some resources toward understanding the causes of metastasis and learning how to prevent their development, as part of Breast Cancer Deadline 2020. It is the only way we will move beyond making just incremental progress against this disease within the next 10 years.

  12. Nicole
    Posted April 27, 2011 at 11:42 am | Permalink

    Thanks for sharing this. I guess I should say that I am not suprised, but I am. I never even gave it a thought to give to all of these organizations to support “awareness”. I think I just got caught up in the thought I was doing something good without realizing it was misdirected. Thank you for educating me and others like me!

  13. Posted April 27, 2011 at 12:58 pm | Permalink

    Great guest post. I agree, society has become blinded and definitely needs to blink and refocus. As another person often told I was “lucky” and got the “good” cancer, I say ENOUGH!

  14. Elena
    Posted April 27, 2011 at 2:18 pm | Permalink

    I knew it! I have three friends with breast cancer and their lives are not so pink!
    I am glad someone said it!
    Elena

  15. Posted April 27, 2011 at 3:06 pm | Permalink

    Thank you all for your comments and your good wishes. Dealing with metastatic breast cancer remains a very frustrating place to inhabit but I’m hopeful that change is on the horizon in terms of research priorities. With the advent of social media, many women dealing with MBC are now sharing their stories, and their voices are starting to be heard. Thanks to BC Action for giving me the the opportunity to express myself here.

    @Laura The president of Metavivor wrote a guest post for me several months ago which is linked to in the above essay which quotes the “2%” number. That is research that is primarily concerned with metastatic breast cancer. You may also be aware of the following article; “Cancer metastasis as therapeutic target” (http://www.ejcancer.info/article/S0959-8049(10)00166-8/abstract) which provides an estimate for metastatic cancer research funding based on allocations by key organizations around the world. The article discusses the need for more translational research that is purely focussed on metastasis formation and growth. I’m looking forward to hearing more about the NBCC’s priorities relating to metastatic breast cancer at the upcoming conference in DC. Hopefully we can meet up!

  16. Posted April 27, 2011 at 4:30 pm | Permalink

    Thanks Anna, I am familiar with the article, the authors make a lot of great points about the problems with current research, but extrapolating their numbers to all US cancer research is misleading. The only reference they use for US research is that funded by ACS. And I can’t follow how they determined the percentage of metastasis research ACS funds (or how they define metastasis research). They have also excluded all clinical research and pharma drug development resources. One of the authors will be at our conference, I know there will be great discussion….so glad you are attending and I do hope we meet!

  17. Posted April 28, 2011 at 6:27 pm | Permalink

    As always, Anna, you did a great job. I so appreciate all that you do to get the word out on the stage IV community.

    As to the questions concerning 2% … unfortunately, calculating the amount spent on research is not as simple as doing a key word search on metastatic breast cancer. If research concerns prevention of metastasis or if trial participants are patients with metastatic disease … or if some trial participants develop metastasis … all of which are very common occurrences … then the searches pick these up as well.

    An excellent case in point would be NBCC’s summit. It is being called a Metastasis Summit … but the official NBCC blog states that the research under consideration is prevention of metastasis. So once again we have a key word indicating stage IV, when the effort actually pertains to stages 0, I, II and III … and not stage IV. This is very commonly done by a host of organizations, hence the erroneous belief by so many that metastatic breast cancer is receiving far more attention and funding than it actually receives.

    A person must dive into the details of each item that pops up in a keyword search in order to know what it is really about. In research, this means not only reading the associated abstracts, but also knowing the specifics of the application process itself as well as the funding agency’s eligibility requirements so that we know why the abstracts were written as they were.

    Regarding drugs … much of the drug production is for prevention of BC mets. These drugs are also used by those with BC mets because there is so little being directly developed for the disease itself. Again, the origin of the drug must be researched to determine the circumstances of drug development.

    Finally, as to the 2% figure. In 2005 or so, more than a full year of full-time study went into coming up with the 1% figure, which I first heard in January 2007 during a Dr. Sanjay Gupta TV special. The research itself was accomplished by cancer advocate Clifton Leaf. Mr. Leaf , who remains heavily involved as an advocate of stage IV issues, more recently stated it is now likely closer to 2%. Please note that this is across the board for all stage IV cancer … not just stage IV breast cancer … and it concerns research done exclusively in the US. To my knowledge, no one else has ever attempted such a comprehensive study; however, recent studies on individual organizations would suggest that the 2% figure remains valid.

  18. Posted April 29, 2011 at 3:36 pm | Permalink

    Thanks for the heartfelt post.

  19. Sarah Mendoza
    Posted May 1, 2011 at 6:56 am | Permalink

    As usual your writing hits the nail on the head. Someone needs to take control of the machine and say enough is enough. I am in the Uk and I am doing a sponsored walk/run .. But it is for cancer research uk.. The money we are trying to raise is going into research on cancer as a whole not just breast cancer. When I started my journey with BC I was told my best option is remove both my breast by friends, but the more I research and understand the full impact of BC. I realise that we are all walking on a knifes edge. Although I do not mind the pink brigade I do want it control so vital funds are placed in the right areas. I want it toned down so the real impact of this damaging disease is realised. We as BC suffers have a voice and we should not be muted for wanting a true representation of breast cancer. Thank you Anna for doing exactly that on your blog and this very thought provoking statement that I am certain will echo on blog boards.

  20. Posted May 4, 2011 at 9:17 am | Permalink

    Laura Nikolaides of NBCC wrote:
    <>

    Laura, that’s what I thought too, initially, but while these drugs are tested in mets patients, they are not designed to treat or prevent metastasis. According to prominent metastatic researchers like Pat Steeg and Danny Welch, these drugs are overwhelmingly developed using primary breast cancer tissues and tested in Phase I and II trials that eliminate drug candidates that do not satisfy tumorigenesis endpoints like response rates. There is only a tiny fraction of research that uses metastatic breast cancer tissue, and examines the specific stages of the metastatic processes, looking at intra- and extravasation, colonization and tissue-specific micro-environment (bone, liver, brain).

    Many of us strongly believe that this may explain the small incremental benefit of new drugs tested in metastatic breast cancer patients in extending survival. From the research that Dr. Steeg has conducted in her lab, it is quite clear there are promising drugs that do an excellent job of preventing outgrowth of metastases (metastasis prevention) that will not shrink existing metastatic lesions. These drugs are NOT being developed because the current clinical trials system cannot measure their benefit, which is potentially huge in terms of metastatic prevention for primary breast cancer, and stabilization of metastatic breast cancer.

  21. Posted May 4, 2011 at 9:18 am | Permalink

    Laura Nikolaides of NBCC wrote:
    “It is clear that the majority of the billions spent in cancer drug development are spent on developing drugs for metastatic disease, as they must first prove efficacy in that population before moving to the adjuvant setting.”

    Laura, that’s what I thought too, initially, but while these drugs are tested in mets patients, they are not designed to treat or prevent metastasis. According to prominent metastatic researchers like Pat Steeg and Danny Welch, these drugs are overwhelmingly developed using primary breast cancer tissues and tested in Phase I and II trials that eliminate drug candidates that do not satisfy tumorigenesis endpoints like response rates. There is only a tiny fraction of research that uses metastatic breast cancer tissue, and examines the specific stages of the metastatic processes, looking at intra- and extravasation, colonization and tissue-specific micro-environment (bone, liver, brain).

    Many of us strongly believe that this may explain the small incremental benefit of new drugs tested in metastatic breast cancer patients in extending survival. From the research that Dr. Steeg has conducted in her lab, it is quite clear there are promising drugs that do an excellent job of preventing outgrowth of metastases (metastasis prevention) that will not shrink existing metastatic lesions. These drugs are NOT being developed because the current clinical trials system cannot measure their benefit, which is potentially huge in terms of metastatic prevention for primary breast cancer, and stabilization of metastatic breast cancer.

  22. Posted May 6, 2011 at 6:35 am | Permalink

    Thank you for this post! I have not had breast cancer, but some in my family have, and a good friend of mine has been clear 5 years. I wasn’t close to any of them, though my husband’s cousin was someone I really wanted to get to know and didn’t have the chance.

    Personally, I can’t stand the whole pink ribbon deal. I cannot stomach the idea that companies are using it to create profit while selling items that are *causing* cancer.

    My friend thinks I don’t support her in her causes. She does the Komen thing, the Relay for Life and everything she can get into. Yet she refuses to see the blatant conflict of interest in so many of these cases and she refuses to learn basic things – like how parabens mimic estrogen – to which her breast cancer was highly responsive to.

    My goal is to help people in general to learn better prevention. My friend and her daughter call mammograms “prevention” and in too many cases, it is marketed as “prevention”. However, a detection or lack there of is NOT PREVENTION. It IS DETECTION. It’s these seemingly small things that really can make a huge difference if people see them for what they truly are. True prevention means there is never detection of any kind with testing – it never happens in the first place! Sometimes the demon is in the details.

    My husband was diagnosed with Thyroid Cancer, and has decided to take a natural approach to begin with. Conventional medicine wants to remove the thyroid and have him on synthetic hormones the rest of his life. For a very tiny spot.

    Here are some things that might be of interest to you, and anyone reading this post. This information is simply to share, take what you will and leave the rest. My goal is to share, for the benefit that anyone may glean from it 🙂

    Anti-Cancer, A New Way of Life by Dr. David Servan-Schreiber

    Beating Cancer with Nutrition by Patrick Quillin

    The Beautiful Truth – film, available on Netflix

    Food Matters – film, available on Netflix

    These are wonderful sources that can give anyone facing cancer or other illness hope. Even if cancer is not reversed…if the quality if life is improved and people feel better, it’s worth it.

    My thoughts are with those suffering, and know that I’m beating the drum to help educate people about toxins and CAUSES of cancers and other illnesses. Knowing the cause can go a very long way to reducing the rates of cancer. IMHO, finding the cause is also finding the cure in many, many cases.

    Much love, light and peace to you all,

    Katie

  23. Posted May 10, 2011 at 4:33 pm | Permalink

    @musa and @CJ I think we are all on the same page. As I said above, the pharma research may not be the right research, but I was only trying to point out the misunderstanding over the 2% figure. I’ve looked at the original sources, and the number was referring to basic research funded by nci only. This doesn’t begin to encompass all breast cancer research. Again, I think we are all on the same page and wanting big changes in research. Drilling down to understand the true picture of research will help us make changes. It is not about a certain amount of money or a percentage of research dollars, it is about getting the right research done that translates to the clinic and into lives saved.

  24. Posted August 30, 2011 at 1:43 pm | Permalink

    Rachel,
    You are bringing attention to the reality of more than 150,000 in the United States alone who are living with metastatic breast cancer.

    I am honored to know you and am grateful for the paths you’ve broken in bringing much-needed attention to metastatic disease.

    Right now I don’t want to detail whether or not we need funds for more research or what kind; because there are reams of copy to read there. And I’m not sure. Curing cancer still eludes our grasp. That is enough to know. Inch by inch progress isn’t enough.

    And I will repeat what my oncologist said to me some years ago: there are no “good” cancers.

    Thank you for this extraordinary post,
    Jody

  25. Posted August 30, 2011 at 1:44 pm | Permalink

    Thank you for sharing this! A great (but sad state of affairs) post! I hope in the not too distant future SGK will be forced to change their ways. It is disgusting. Maybe if bloggers continue to blog and we all stand up we can force their hand . . . or should I say: force their hands out of their own pockets.

    GRRRRRRRRRRR

  26. Posted August 30, 2011 at 1:46 pm | Permalink

    Thanks for sharing this, only since my own diagnosis have I realised that all of this ‘Pinkness’ seems to give breast cancer a ‘happy face’ & as we all know, that is soooo not true. Whilst well meaning friends continue to do ‘pink’ things & at first I appreciated it, I’m now more inclined to make people aware of the reality of all of this in other ways – it’s a sh*t disease &, whilst I am NED at the moment, the fear of it coming back enters my head at least once a day. I will gladly share this post if I may?
    Chez. xx

  27. caitlin
    Posted August 30, 2011 at 1:50 pm | Permalink

    Chez, thanks so much for your comment. Please share far and wide! If you repost on a blog, we’d just ask that you link it back to this website and Anna’s blog (cancerculturenow.blogspot.com). Thanks for helping spread the word about this important message.

  28. Posted August 30, 2011 at 2:16 pm | Permalink

    Thank you, thank you, thank you. I’m one of the many with metastatic breast cancer, and Pinktober nearly did me in last year, and that was BEFORE I found out I have a recurrence, before I found out that I’ll be on chemo for the rest of my life (however long that is), before I had complication from the cancer and/or chemo like diabetes, a pulmonary embolism, and arthritis.

    This disease is a nasty thing; it can’t be tied up into pretty pink ribbons.

    Thank you for your honesty. It’s very refreshing.

  29. kathy j
    Posted August 30, 2011 at 2:46 pm | Permalink

    Thank you for that VERY informative post! I lost my mom and my aunt to breast cancer and I’ve had 2 sisters-in-law that have had breast cancer – thus far both have beat it. Mom and aunties had both metastisized. We’ve all fallen into the whole pink thing, but you’re absolutely right it’s not helping fight the disease. If people aren’t “aware” of breast cancer by now they’re from another planet!

  30. Posted August 30, 2011 at 3:21 pm | Permalink

    As someone with widespread metastatic breast cancer, I couldn’t agree with your article more. The response from most people I meet assumes that being that I was diagnosed nearly a year ago & my hair’s not fallen out – that ‘everything’s ok now’ and ‘you’ll be fine’.
    The publicity is about self-examination and prompt action is great, the ‘women skipping through fields thoroughly cured’ isn’t so much…..
    I do believe the increasing use of social media (fb, twitter, blogs etc) will change the situation, as women with BC are allowed to be honest in the telling of their own stories. Let’s hope the change comes quickly!
    Thank you for your truthful & brilliant article.
    Annie xx

  31. Barrett
    Posted August 30, 2011 at 6:21 pm | Permalink

    Thank you so much for this post, Anna. I am a stage II/5 yr NON-metavivor. I completely agree with you, and I hope the pink machine has a major meltdown soon. My mother managed Type I diabetes for 64 years, so I know what a “manageable” disease is. I know all too well that if I had metastatic breast cancer 5 years ago, I wouldn’t have been talking about “managing” it. Even now, I am not “managing” recurrence. I am trying to stay healthy and hoping for the best. Thanks again for posting this. My thoughts and prayers are with you.

  32. Posted August 30, 2011 at 6:41 pm | Permalink

    Thanks again to BCA for reposting this article. If we’re not thinking about metastatic breast cancer, then we’re not in the game at all, because MBC is the one that still kills an estimated 40,000 per year in the U.S. alone. It’s all very well to light a candle, put a name on a t-shirt, buy a pink bear or run a pink race, but who’s that really helping? We all need to be constantly asking the deeper questions and getting angry about the status quo. Because maintaining the status quo is literally killing us. Thank you all for reading and sharing this article with your communities. Rachel (aka Anna @ The Cancer Culture Chronicles)

  33. Katie
    Posted August 31, 2011 at 6:52 am | Permalink

    When my mom died of metastic breast cancer last year there was nothing pink and cute about it. It was dark, scary and ugly. I’d rather we focus on saving lives as opposed to saving ta-tas!

  34. Carolyn
    Posted September 1, 2011 at 11:21 am | Permalink

    I believe Susan Komen’s sister runs the Foundation she started when she lost her sister to BC. The Palm Beach Post carries pictures of the glamorous life she lives in Palm Beach FL. I often wonder whether she was independently wealthy before or if she takes a very large salary for her work with the Foundation.

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