Why I Research Pink Ribbon Culture

People usually ask me why I became interested in breast cancer and pink ribbon culture. The answer is: It’s personal. I have never been diagnosed with breast cancer. Like many who are devoted to the cause, my commitment stems from the loss of someone close to me. In witnessing the life and death of a good friend, I have come to know deeply what is at stake in the war on breast cancer.

My friend was diagnosed with invasive breast cancer at age 30, got treatment and was cancer-free for a few years, had a breast cancer recurrence at age 35, got more treatment, and then died soon after her 40th birthday. Our last visit together was a few days before she died. While I hesitate to share the full details of this day, I feel compelled to let you know some of the important things that came out of it.

Most importantly, I understand that lives are at stake.

  • The war on cancer has been raging for forty years and has increased in intensity in the last twenty.
  • Incidence rates remain high and some forty thousand women and hundreds of men die from the disease each year.
  • Whereas about 25 percent of diagnosed women are diagnosed with one of the in situ (i.e., “in place”) types of breast cancer that are not life threatening, the remaining 75 percent are diagnosed with one of the invasive types that are.
  • Not only do the invasive types have the capacity to spread, they seem to do so in about one-third of all cases. There is no way to tell with any certitude which of the diagnosed will fall into this category.
  • Though there have been some important advances in what we know about breast cancer and how to treat it, the questions and the casualties continue to mount.

People handle grief and loss differently, but it is common to want to do something to honor the life that was lost.

When my friend was on her deathbed, I told her about a 3-day breast cancer walk I wanted to do in her honor. She nodded and went back to sleep. After she died, I felt foolish that I had made such a statement. Walking in her memory would do nothing for her. She was gone. I realized that walking was more about me. Then I realized that there were other things I could do besides walk. I was a researcher. I could devote my research to learning more about the disease, the cause, the culture, the medicine, and the support systems in place for the diagnosed. So that’s what I did.

Pink Ribbon Blues is the culmination of many years of research, starting in 2001. It was a bigger project than I imagined and involved more elements of society than I had anticipated. The more I learned about the interconnections among advocacy, organizations, culture, policy, mass media, consumption, industry, and different modes of survivorship the more I saw that pink ribbon culture had taken on a life of its own. As a system, it no longer served a greater intention. It served itself.

Despite the efforts of millions who run, walk, hike and raise money for the cure, the eradication of breast cancer has become a figment of the collective imagination.  When I think about my friend and the others I have lost to this disease throughout my lifetime, I regret that pink ribbon culture has gone so far astray.

For those who continually worry about recurrence, face decisions about prophylactic treatments, lack adequate care and support, rely on inadequate screening technologies, suffer the ongoing side effects of treatments, do not have access to the most successful cancer centers, do not experience the transcendence that pink culture demands, are not represented in the culture, and who fear for the future of a cancer ridden society, I implore everyone to take a step back to look honestly at the system’s outcomes, and to recalibrate.

After all, we want the same thing. We want to be healthy, free, and with the people we love.

The first edition of Pink Ribbon Blues (the book) is dedicated to Cathi. The paperback edition is dedicated to another friend, Rachel Cheetham Moro, blogger at The Cancer Culture Chronicles. My ongoing work is dedicated to all of those who are suffering from breast cancer, and all of those who want to do something about it.

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14 comments to Why I Research Pink Ribbon Culture

  • Well written and observed Gayle. It’s too late for me to live a life without fear of recurrence. I have lost three years of my life to breast cancer treatments, those years are lost forever. I don’t want that to happen to other women. That’s why I welcome your words. We need big picture change.

  • I really appreciate your important and well written message. I lost my best friend to metastic breast cancer and hated to see her suffer. I also lost another very special friend 10 yrs ago from invasive breast cancer. Both died extremely young, left vibrant lives, and beautiful children and wonderful husbands behind. Although walks bring awareness they are simply not enough. I really appreciate your efforts in digging deep into this complicated issue and devising a strategy to work towards a common goal in really preventing and or curing this disease.

  • Wow. Gayle, this is such a powerful posting that is bringing me to tears as I write this. You are so right about a pink culture that has run amuck; I loved your book because it helped open my eyes to what was really going on in our breast-cancer-awareness pink culture. I was diagnosed with invasive breast cancer the very year you began researching this topic, 2001. I’ve had to make tough decisions — life and death decisions — repeatedly. And I lost my dear friend to metastatic breast cancer a few years after my diagnosis.

    I wish someone would find a cure for this damned disease and not waste precious time and resources on the pink hoopla. When I was first out of treatment I did the Komen walk. I didn’t know any better. Now I do.

    To this day, I think about all the people with mets. To this day, I fear it may happen to me, too. And it just might. And the psychological repercussions of this disease are never shown — just the attractive, smiling depiction of a survivor. I’ve survived, thus far, but I will never be the same physically or psychologically.

    Thank you, as always, for making your voice heard. It’s an important one.

  • […] Sulik, author of the seminal work on the whole issue, Pink Ribbon Blues, will be blogging 30 Days of Breast Cancer Awareness this week  she shares with us the reasons why she is so passionate about her […]

  • Susanne S.

    Your hard work on Breast Cancer and the marketing [Pink Ribbon Industry has affected many women with this dreaded disease] is greatly appreciated by the victims of this disease. It is wonderful to know that someone without the disease is so compassionate and willing to work so hard for their cause. Find the Cause and we do not have to fight so hard to find a cure! That’s where I want my donations to go! Good work Dr. Sulik.

  • thanks for sharing YOUR story.
    i guess anyone who comes here…has their own personal story. mine is the loss of my younger sister. 4 years ago. she was diagnosed, had a mastectomy followed by ALL the treatments…then 5 years later, she wasn’t ‘feeling right’…it was discovered that the cancer has spread throughout her entire body. to her brain also. she chose to have surgery to remove the tumors in her brain because she had 3 young daughters at home & wasn’t ready to leave them. five months later she lost her battle. i put my job on hold and moved 2 hours south to live with my sister &; her family…to cook, clean…whatever she wanted me to do. i still cry…remembering her determination…her strength…and her fear.

    thank you for all you do. i’m glad i found your site.

  • Tru

    Thank you, Gayle, for what you do all year long, and especially to help us survive the insanity of the month of October every year.

    Much to my dismay, I just discovered this: http://feelemfriday.blogspot.com/

    @FeelEmFriday appears to be the latest in sassy, sexy breast cancer awareness from our friends across the pond…the hip British way to plug early detection and have a laugh while you do. Me? I think I’m going to be sick. How and where to explain to these people that their focus is all wrong, their facts are all false, and they’re making fun out of other people’s misery? I just don’t know where to begin…it just makes me want to cry.

  • Thank you so much for your research, Gayle. I’m especially appreciative of people like you who invest their time in cancer research even though they have not had the disease themselves. It speaks volumes of your character. Cathi is so fortunate to have a friend like you.

  • That’s very kind of you to say, Jan. Thank you. I was fortunate to have a friend like Cathi. She opened my eyes to many things. I agree that we should not leave those who are diagnosed to bear the added burden of advocating for positive change. It’s something we all need to do. — Gayle

  • First and foremost, the utmost love and respect goes to your dear friend Cathi and to you, for questioning the ‘Pink Ribbon Society’ – it’s about time someone called it out! I have lost 3/4 of my original breast cancer support group to this disease 3 diagnosis ago and my dearest friend 2 weeks before her 40th birthday with the same promises of walking. But what have the months of training and pounding the pavement done for all of my fallen ‘Angel Girls’ and for me these past 20 years? Plain and simple, we need the proper, professional and financial help to make the best decisions for ourselves in order to be able to pay for our consultations and 2nd opinions that can potentially save our lives. How many pink purchases must I make that will translate to the health and survivorship of my BC sisters and to the over 40,000 annual deaths? So, to this I say a heartfelt thank you for fighting this fight and questioning what this popular color is doing for us!

  • Yes, this question – “How many pink purchases must I make that will translate to the health and survivorship of my BC sisters and to the over 40,000 annual deaths?” – propels so many people to give of themselves. If only it were translating to a substantial decline in the epidemic and real help for the diagnosed. Such a good question.

  • JR

    It is not only having the disease, but the effects of misdiagnosis. Two years ago, first mammogram. A screening. Why? I don’t know. Peer pressure? I knew better. Chose the wrong place. Told over the telephone by the radiologist that I had invasive breast cancer in both breasts. Radiologist would not meet with me. Seven months later, after other consultations and much imaging for the architectural distortion, and excisional biopsy – absolutely nothing – that is unless the excessive radiation and surgery are causative. Life fell apart. Friends vanished. Questions remain. A large scar remains. The futility of filing formal reports against the initial radiologist has been repeatedly demonstrated by others.

    The American College of Radiology allows imaging practices to state their accreditation. 20 – 30 – 40 years of combined experience! It doesn’t say in what. And accreditation is not for all facets of the imaging procedures. This must be addressed.

  • Joanna Farrer

    Cathi, It is so reassuring to know that there are researchers as dedicated as you on ” our ” side. Your message is sensitive, eloquent and hard hitting. It conveys how all of us with MBC feel about the whole “pink thing”. My concern is that all these wonderful words that are being written are not being read by those who can make a difference. We need to get the message out to those who have power to make the changes. Any thoughts on how we can do this??? How do we turn the tide??? I think the biggest tragedy is not on how they collect the funds ( which borders on immoral) BUT that so little actually goes towards finding a cure. IT is criminal that so much has been spent on prevention and yet so little has been achieved with reducing the death rate.
    Ho do we get that message across??? Something like a class action????
    Thank you for being there for us!!!!!

"women urged to get screened because it might save their lives. But that’s only 1 possible outcome, and it’s the least likely one" @cragcrest cutt.ly/jei8WJr

“Pink Ribbon Blues”

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"Seeing clearly through the pink haze" Toronto Sun

*Sad face*: Being happy does not help you live longer" New Scientist

How should we address breast cancer when norms continually change? The Guardian

Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

Breast Cancer to Rise 50 Percent by 2030? Hey, Not So Fast! Health News Review

Breast Cancer: The Flaws in the Cause iafrica.com

How to Make the Biggest Impact With Your Breast Cancer Donations Money

The Very Pink, Very Controversial Business of Breast Cancer Awareness Racked

NFL, Pink Ribbons Not Enough to Win over Women CNN

3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

A Year After Bombings, Some Say 'Boston Strong' Has Gone Overboard NPR, All Things Considered

Canadian Mammogram Study KCRW, NPR Affiliate

Time to Debunk the Mammography Myth CNN

Breast Cancer: Awareness, Activism & Pinkwashing NPR Charlotte

Buying Pink Al Jazeera's The Stream Watch »

The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

The Story Behind the Pink Ribbon Campaign Sisters Talk Radio

WISH Interview Women's International Summit for Health

Making Cancer About The Patient, Not The Body Part CBS Pittsburgh

Sexy breast cancer campaigns anger many patients USA Today

The perils of pink The Daily

Komen pink campaign creates breast-cancer blues for some Dallas Morning News

A yellow flag for the NFL's pink New York Daily

Gayle Sulik named #7 in SharecareNow’s Top 10 Online Influencers in Breast Cancer

Breast cancer cancer causes so easily derailed Philly Inquirer

Komen Charity Under Microscope for Funding, Science Reuters

The Fight Against Cancer - And Abortion? Salon.com

Susan G. Komen For the Cure defunds Planned Parenthood. In Deep with Angie Coiro

Amid Breast Cancer Month, Is there Pink Fatigue? NPR's All Things Considered

How is Breast Cancer Culture Undermining Women's Health? America’s Radio News Network

Pink Ribbon Culture and Breast Cancer The Kojo Nnamdi Show

The Big Business of Breast Cancer
Marie Claire

Does Breast Cancer Awareness Month Crowd Out Other Diseases? Slate

Pink Inc. Has Many Starting to See Red The Sacramento Bee

Get Your Pink Off Ottawa Citizen

Komen Pink Ribbons Raise Green and Questions USA Today