I Didn’t Know Then What I Know Now

Lisa Valentine is a regular Pink Ribbon Blues reader and growing contributor to the blog. Earlier this year, Lisa wrote an essay called “What Lies Beneath,” which examined cultural expectations about women’s breasts and her decision about mastectomy and reconstruction. Today, Lisa shares how she transitioned from being an avid Komen supporter to a new kind of breast cancer advocate. I’m grateful for Lisa’s contribution to the public discussion about pink ribbon culture and industry, for her commitment to evidence-based knowledge in changing the conversation about this disease, and for her “shout out” to Pink Ribbon Blues.

Until April of 2004, when my sister was diagnosed with breast cancer, the pink ribbon disease existed only on the fringes of my life. In the eight years since, breast cancer has had a growing presence for me, and for my family.

I had heard of the Susan G. Komen Breast Cancer Foundation (now Susan G. Komen for the Cure), and after my sister’s diagnosis I wanted to get more involved in efforts to end the scourge of this disease. Komen seemed like the place to start; it was highly visible and all about raising awareness. I was also touched by the story of Nancy Brinker’s promise to her dying sister Suzy Komen, to end breast cancer forever. With breast cancer now in my own family, I was scared and felt a sense of urgency to help Brinker to keep that promise.

Lisa Valentine's Race T-Shirt, 2005

On Mother’s Day 2005, my husband and I participated in the Susan G. Komen Twin Cities Race for the Cure in Bloomington, Minnesota near the Mall of America. I pushed my then-three-year-old son in our jog stroller, swept along by the sheer size of the crowd and inspired by the energy directed at a worthy cause. It felt good to have contributed to such an effort. I called my sister as we walked back to our car, celebrating her year of survivorship and proud to tell her I had done the race in her honor. We talked about how fun it would be to get all of our sisters–eight of us–to do a Komen event together.

After the race event, I looked for little ways to support the breast cancer cause, and particularly Komen. If I saw a garage sale advertised as a fundraiser for a Komen 3-Day team, I made a stop and a donation. Komen seemed to be doing good work. If I could help out I wanted to do so. My desire to do something useful to support people with breast cancer and contribute to its cure, really ramped up when a second sister was diagnosed with the disease in 2006, followed by my own diagnosis in 2008. Having three of us diagnosed with breast cancer upped the ante for me.

Yoplait, one of the main sponsors of the race I attended back in 2005, had a campaign called “Save Lids to Save Lives.” Each year for a specified time in the fall, Yoplait produces yogurt containers with pink lids. When consumers send in the lids, Yoplait then donates ten cents for each one to Komen, up to a maximum of $2,000,000 annually. I had seen the pink yogurt containers previously and got serious about collecting them after my diagnosis. I put the word out to my colleagues that if they gave me their clean lids, I would collect them and mail them in. I was proud to have sent in over 400 lids that first winter, and collected more the next year too. Sure, it only added up to about a $40 donation, but each lid collected had been a thoughtful gesture by someone, and it was a reminder that I was taking action to help. It all adds up, right?

Following my diagnosis, I started reading a lot about breast cancer: medical opinions, memoirs, studies, blogs, history books, magazines. I found that I had more questions than answers about breast cancer, and about the pink ribbon cause. Why are so many people being diagnosed with this disease? Why aren’t we significantly reducing deaths each year? Where is the cure? Could it be that all of this awareness and pink stuff may actually be stalling the movement to end breast cancer once and for all? Why aren’t I, a “survivor” myself, comfortable with the public persona of survivorhood? I found my mind starting to shift. I was tiring of this “one size fits all” survivorship model pushed by Komen and others, and feeling like the true victims of breast cancer (the dying and the dead) were being ignored.

I was especially taken in the summer of 2011 by two books: Samantha King’s Pink Ribbons, Inc. and Gayle Sulik’s Pink Ribbon Blues. Researchers like King and Sulik were uncovering disturbing facts about breast cancer, the disease as well as the culture and the industry. I learned that many individuals and organizations were questioning the limited success of the breast cancer movement, the commercialization of the disease for profit, and the exploitation of the diagnosed. Organizations like Breast Cancer Action had been questioning cause marketing for years, and taking real action to bring change and justice. Komen, I found out, had partnerships with corporations that manufacture products with known carcinogens. The realities were unsettling, and my discomfort heightened as I tried to make sense of what I was learning about a cause and an organization I had once believed in, and actively supported.

Getting angry, my voice got stronger, my pen more direct. I felt cheated and a bit like a fool for having been sucked into, as Gayle Sulik puts it, the Komen juggernaut. The many millions of dollars being raised by the organization were certainly doing some good, but with barely a fifth of their funds going to research, how did Nancy Brinker think she would be able to keep that promise she made to her sister, to bring an end to breast cancer? And “Early Detection Saves Lives”? There needs to be an asterisk attached to that ubiquitous Komen ad campaign. It should say, “*Only if you have the right kind of cancer, and only if it doesn’t decide to metastasize, as any cancer can.” Based on the bulk of the science about screening, Komen should stop pushing this early detection misnomer. I believe it only serves to make breast cancer patients feel guilty if their cancer wasn’t caught “early enough” to keep them from dying.

Then I learned that Yoplait, of the feel-good pink yogurt lids, had been using rBGH in their dairy products. There is a link between elevated levels of this hormone and an increased risk of breast cancer. The same year I was going through my own breast cancer surgeries and treatment and collecting over 400 pink lids, Breast Cancer Action and other groups were successful in getting General Mills, maker of Yoplait, to remove rBGH from their yogurt. All Komen did was keep collecting Yoplait’s donation. They didn’t seem to care whether the product was contributing to breast cancer risk or not. End breast cancer forever? Not while you’re helping to increase the risk in the first place!

Many organizations, researchers, and bloggers have done much to bring to light how the breast cancer movement has lost its way and seek more accountability from charities like Komen. I especially admire the late Rachel Cheetham Moro, who wrote the blog The Cancer Culture Chronicles. Moro worked hard to expose the disconnect between Komen’s purported mission and their actual spending. She pointed out the gap between Komen’s claim that 25 percent of their budget goes to research when in reality it is closer to 19 percent in 2010, a difference of nearly $30 million. In 2011, the research allocation was even lower (15 percent) while over a third of Komen’s budget (up to 41 percent in 2009) typically goes to “education.” With a focus on awareness and early detection, those education efforts are misleading and often duplicated, while not getting us any closer to a cure.

It is emotionally safer and, dare I say, more profitable for groups like Komen to focus on awareness and early detection. But those who die from breast cancer, like Moro, succumb to metastatic disease. Doesn’t it make more sense to turn the juggernaut on what’s killing people? METAvivor Research and Support, Inc., one of a handful of groups committed to late-stage breast cancer argues that 30 percent of women diagnosed with breast cancer go on to get advanced (metastatic) disease, but only about 2 percent of research funds go toward metastatic disease. METAvivor, in its “30% for 30%” campaign, argues that if 30 percent of the diagnosed are likely to face metastasis, then at least 30 percent of research dollars should be spent on metastatic disease. METAvivor uses all of its donations to fund researchers who study advanced disease.

As the disconcerting knowledge became clearer to me, I looked for ways to do small things for the right causes. Breast Cancer Action began their “Think Before You Pink” campaign ten years ago. It is helping me become a more careful consumer of products with pink ribbons gracing them. Dr. Susan Love created a way to help researchers find study subjects faster to pick up the pace of research that would have been slowed or halted otherwise (see www.armyofwomen.org.) I joined Dr. Love’s Army of Women for free and have already taken part in two studies, both of which only required completion of online surveys.

My husband and I were doing some shopping at our local grocery store recently. The store allows community groups to bag groceries and collect donations and tips for their cause. This week, the group collecting tips was a local team for Komen’s 3-Day walk. As we got in line for checkout, I saw the signs and felt the pull. Here’s my chance to say no, openly and publicly, to Komen. A year ago I would have let them bag my groceries, given my tip, and maybe said a few words. I didn’t know then what I know now.

Lisa Valentine and her Spouse; Running, but not for Komen

As a team member approached me and asked “We are raising money for breast cancer, would you like your groceries bagged?” I simply said, “No thanks, we’ll pass this time.” I felt empowered on the one hand, but real sadness on the other. Sadness for the team members working so hard for an organization that has lost sight of the ultimate goal to end breast cancer, and that has gotten too powerful at the same time. Sadness that they don’t know what you and I know. Now, I walk and run for my health, but I won’t be doing any more Races for the Cure. My money and support will go to causes that will help move us forward more quickly, and with more integrity, than Komen has been able to do.

Brief Biography:

Diagnosed with breast cancer in May 2008, two of Lisa Valentine’s seven sisters have also had breast cancer. She is an active member of the Hastings, MN Breast Cancer Support Group, which created the DVD “Voices of Hope” in early 2010 for newly diagnosed women. Over 5,000 copies have been distributed (see www.hastingsbreastcancer.com). Opting not to have reconstruction, Lisa appreciates the words of mastectomy-as-reality writers Audre Lorde and Tania Katan. With a B.A. in Social Science and a M.S. in Guidance and Counseling, she currently works as a school counselor. An avid runner, Lisa has completed nine marathons, four post-cancer. A lifelong writer and poet, her recent publishing credits include opinion essays in the Minneapolis Star Tribune and The Des Moines Register. Lisa blogs about gratitude at http://habitualgratitude.blogspot.com.

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10 comments to I Didn’t Know Then What I Know Now

  • Lisa,
    Fabulous piece, Lisa. It seems you and I have learned some of the same things along this path we are on. Last year my niece asked me to join in that exact walk you speak of at the Mall of America. I could not as I had just had my latest breast cancer related surgery, but even so, I remember feeling guilty about turning her down. My eyes have since been opened (widely) too. I’m grateful to my friend Rachel of the Cancer Culture Chronicles for being one of the main people who awakened me to the truth. Thank you for speaking your truth. Keep speaking it.

  • I love how gracious you were with the fundraisers at the grocery checkout. As activists we are militants, and we might even be pushy, but we don’t have to be cruel to hapless Komen racers.
    You are a classy lady, Lisa!
    Rock on, walk on, but no more race on!
    Jamie
    @ibeatcancrtwice

  • Well done. I also didn’t know any better about SGK until I was diagnosed and did some research. I’ve done exactly one Race for the Cure, and will do no more. Instead, I follow Dr Susan Love and happily participate in any Army of Women studies I can. Many thanks for lending your voice to the message that Komen ain’t all it’s cracked up to be.

  • Thank you Lisa, for enlightening me on this topic.

  • Helen Zbornik

    Thanks for your honesty and willingness to share and all the time you have taken to research and write. Sometimes all ones effort seems futile but people are listening but not as qualified as you are to speak out on such an important issue. Keep writing and voicing your opinion. It is important to speak out! So proud of you for keeping “Running” in your busy schedule!

    I love you, Aunt Helen

  • Mary

    Lisa, thank you for the wonderful insights. My eyes were opened shortly after mastectomy in 2006. I was appalled at the lack of education as to what to expect regarding the consequences of treatment, the brutality of it all, the “slash, burn and poison”. I refused over $100,000 worth of adjuvant therapy because of the toxicity involved with the theoretical cure. My question is this, how many succumb because of the treatment itself? I feel as you do regarding the glorified pink Komen movement. May your voice and honesty about the “pink movement” continue to be heard loud and clear!
    Gratefully,
    Mary

  • Faith

    Lisa: You dig out the truth and do the right thing and you even find a way to do it “politely”. How many people can say they are TRULY making a difference. Nice job my friend! Very proud of you and thank you for helping me and others by more aware and educated on this. Every woman needs to be on the watch and prepared. Keep up the great work and turning this journey into something so positive!!!!

  • Ruth

    Lisa: Thank you for sharing your knowledge with all of us. I respect the work, research and heart that you put in your writing. Proud to call you my sister! Ruth

  • Good for you, Lisa. You should be running for your own health. It seems we can’t trust many of these “causes” anymore. And I also tire of the grocery clerk who asks about contributing to a “pink” cause. I’m empowered more and more to tell them the reason I don’t participate. xxx

  • Brenda Coffee

    Lisa,
    It is disillusioning for all of us when we discover the realities of the “pink movement,” but there are other ways we can contribute and make our voices heard. I applaud Gayle Sulik and Breast Cancer Action for giving us the truth of what’s actually behind pink marketing. Personally, I’ve decided to support Dr. Susan Love’s team that’s looking for the cure and prevention of breast cancer. While that doesn’t help all of those who have, or may have metastatic disease, wouldn’t it be wonderful if our daughters and granddaughters and their daughters never got breast cancer? The vaccine for cervical cancer gives us hope that the cause and prevention could be a reality, so I encourage every woman, whether she’s had breast cancer or not, to join Dr. Love’s Army of Women. Many of their studies only require that we answer some questions so researchers can begin to correlate cause and effect.

To speak her truth, she needed to give her words and identity away, to a trusted poet and friend @stevedavenport breastcancerconsortium.net/ov…

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* GAYLE IN THE MEDIA *

"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

** MORE MEDIA LINKS **
** MORE RADIO INTERVIEWS **