A Happy Pink Story: The World Wants What It Wants

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In his essay “On Homecomings” for The Atlantic Ta-Nehisi Coates wrote was about his deep longing to move back to his old Brooklyn neighborhood and how his plans were thwarted by celebrity-chasers. About the mining of his privacy for a gossip rag, he wrote: “If the world wants a ‘writer moves to Brooklyn Brownstone,’ story, it’s going to have one no matter your thoughts.”

On the eve of Pinktober, this sentence struck me hard because I’ve had a similar experience with breast cancer.

The world likes a breast cancer survivor with good-as-new breasts, but that is not my story.

I chose not to reconstruct because I didn’t want to sacrifice a back muscle to create what the plastic surgeon referred to as “a breast-shaped mound.” Now, seven years later, I’m not arguing against reconstruction. I believe women need to be fully empowered to make any and all choices about their bodies. But a fully informed choice is predicated on having all the options.

A lot of women take comfort in the happy pink story “no matter your thoughts.” But I can’t help but wonder how many women don’t yearn for a story with an alternative ending. In the weeks after my breast cancer diagnosis, I saw four surgeons and not a one mentioned going flat was an option for me. Going flat isn’t every woman’s choice but it needs to be on the menu.

Like fairytales reimagined with strong girls who don’t need to be saved by a prince, I’m hoping my story about a breast cancer survivor who didn’t need to re-create her breasts to feel whole again, to feel like a woman again, will be a refreshing update to a stale ending.

Gene Tests & Chemotherapy’s “Gray Zone”

Human breast tumor.

Human breast tumor.

I’ll hazard a guess that all cancer patients would skip chemotherapy if they could. The hazy hours in the infusion suite, the body-numbing fatigue, the brain fog, the baldness. And that’s just the short-term effects. Chemo’s toxic legacy can lead to permanent nerve damage, heart failure, and even other cancers, such as leukemia.

So I was heartened to see this week’s headline in the New York Times “Gene Tests Identify Breast Cancer Patients Who Can Skip Chemotherapy, Study Says.”  The reporter, Denise Grady, told of a new study validating the usefulness of genomic tests, gene tests that measure markers of tumor activity and aggressiveness. “The so-called genomic test measures the activity of genes that control the growth and spread of cancer, and can identify women with a low risk of recurrence and therefore little to gain from chemo.”

But my optimism quickly faded. These weren’t new tests. Or a new breakthrough. Instead this was research done on existing genomic tests, the ones that doctors have been using for the past decade. The same type of test performed on both of my breast cancer tumors. While I applaud the much-needed research, I wish the headline felt more apropos.

I was diagnosed with breast cancer twice. First in 2009 at age 38 and again in 2010 at age 39. Because I was under 40, my insurance company covered genomic testing. (I was lucky.) Like the majority of breast cancer patients, my tumor was hormone sensitive and her2 negative, making me an excellent candidate for the tests. My doctors assured me the results of this high-tech gene test would clarify treatment decisions, especially in relation to chemotherapy. Do I or don’t I steep my body in a toxic chemical brew?

For two weeks, I pinned my hopes on this test. How could I not? The results could be a “get-out-of-jail-free card.” One test could save me months of suffering and god only knows what kind of long-term ill effects. Even if the test showed an aggressive tumor at least it would clarify my treatment plan. “Full attack!” Was easier to swallow than a wishy-washy “you may benefit, but you may not.”

My greatest fear, next to death, was making an ill-informed treatment decision I’d come to regret. I clung to my doctor’s promise that the genomic test would mitigate that risk.

And so, when my oncologist gave me the results, I didn’t know how to process his proclamation that my tumor was in the “gray area.” My cancer was neither the most aggressive nor the most innocuous. It was neither the straight-A student nor the drop out. My tumor was a solid C+. If my tumor woke up and decided to apply itself, it could kill me. But chances were good it might nod off in the back of the class.

I got this middle-of-the-road result not once but twice. The first time I skipped the chemo. The second time I signed on with equal parts gusto and terror. But, even with the gene tests, my decision came down to a coin toss.

Am I hopeful that these tests will save tens of thousands of women the pain and suffering that is chemo? Yes. More information is always better than less. Do I think a newspaper headline, even an article, can capture the emotional and scientific complexities of chemo’s risk/benefit analysis? No. With all things, even fancy genetic tests, your milage may vary and mistakes will be made.

3 Steps Before You Walk

Cause marketing is a $2 billion dollar business. That’s a lot of moola. Before you sign on to a charity walk it’s important to know whether your donation will pay for extra balloons at the finish line or something more meaningful.

“When you sponsor someone for a charity walk, you’re really writing three checks — one for the charity, one for the event-management company, and one for the benefits the walker receives, the T-shirt, the massages, and the meals,” said a spokesperson from the American Institute of Philanthropy, a charity watchdog group. “If it’s a very costly event, but you’re happy because you got some great perks, that’s fine. But, if you want to help the cause, you should find out how much will be left over.”

Last month Breast Cancer Action published 4 questions to ask before you walk for breast cancer.

Here are 3 more steps you can take to find out where your donation will go.

Rate of Growth of Cause Marketing from CauseGood

Rate of Growth of Cause Marketing from CauseGood

  1. Find out how much of your contribution will benefit the charity directly. According to the Better Business Bureau’s Wise Giving Alliance, “at least 50 percent should be spent on programs and activities directly related to the organization’s purposes.”
  2. Ask yourself if the charity’s goals are clear? What tangible results have they achieved in the past year, the more specifics the better. Is the charity’s mission specific, like providing wigs to women receiving chemotherapy, or vague, such as eradicating breast cancer.
  3. Ask how successful is the charity in meeting its goals? If a charity spokesperson can’t tell you what they’ve done to forward the cause lately, choose a charity that can.

Cause Marketing and Breast Cancer

Companies, such as Avon and Yoplait, are poised to pour 2 billion dollars into cause marketing in 2016. Consumers need to remember that cause marketing is a profit strategy, not a philanthropy.

  • 90% of consumers say cause marketing leads them to trust a company more
  • 90% of consumers feel more loyal to a company that engages in cause marketing
  • 43% of women prefer to buy a brand that makes a donation with every purchase*

*Source: ForMomentum

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What Barbara Brenner Taught Me About Charity Walks

Thirteen years ago, in the spring of 2003, I interviewed Barbara Brenner, then executive director of Breast Cancer Action (BCA). The interview never ran.

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I was an optimistic, young journalist excited about her first investigative assignment. The topic was cause-marketing. The news hook was a brewing controversy surrounding Avon’s 3-day breast cancer events.

I’d pitched and sold the idea to a national women’s magazine. My editor loved it. The magazine slated the article for the October issue — Breast Cancer Awareness Month.

I spent six weeks researching, interviewing, and writing the 3,000-word feature. Brenner was front and center. Her message stressed the importance of women taking back their power from corporate America. I couldn’t believe such a bold, feminist message was poised to reach 1.4 million readers.

Then, a month before publication, my editor called to tell me the magazine killed my story. Avon was a new advertiser and the marketing team didn’t want to tarnish the new relationship. My interview with Barbara sank to the bottom of my hard drive. Until now.

I was reminded of the long-lost interview when, in April, BCA redoubled its efforts to get women to ask 4 questions before walking for charity. Then I found out the University of Minnesota Press was set to publish a collection of Barbara’s writings. Finally, last week, Karuna Jaggar, BCA’s new executive director, penned an op-ed for the Washington Post “breast cancer walks are a terrible way to fight breast cancer.”

So it only seems fitting that, for the first time and with the permission of the kind folks at BCA and Barbara Brenner’s family, I’m posting my long-ago interview with Barbara.* She won a life-long supporter in that 20-minute phone call. And, after all these years, her words ring just as true:

Q: Describe, in a nutshell, your chief complaint with cause marketing.

Brenner: One is the exploitation of a devastating illness by companies. The second is that while we really want people to do something about breast cancer, we want people to do something real. Many of these campaigns give people the illusion that they’re doing something real when they’re not.

Q: What do companies gain?

Brenner: They gain profits. They do this to improve their bottom line. That’s what companies do. They gain a reputation for caring deeply about something other people care deeply about.

Q: How do you respond to those who might say, “who cares if companies make money, at least they’re giving back.”

Brenner: I would say that while I appreciate that point of view, we shouldn’t let companies off the hook. People need to think about whether or not companies using breast cancer to improve their bottom line is really helpful.

Q: What makes breast cancer such an easy target for cause marketing?

Brenner: Breast cancer is a great cause-marketing tool because it’s an issue women care about and women have a lot of purchase power. Plus, it’s about breasts. Breast cancer is relatable in a way, for instance, AIDS never was because AIDS was loaded with sex and sexual orientation. Breast cancer is just the opposite. Yes, it’s loaded because it’s about breasts and America loves that.

Q: Can you speak to what raising money for breast cancer through the sale of lipstick, yogurt, and vacuum cleaners says about how women are perceived by these companies? Is it valid or a conditioned response?

Brenner: It’s valid in that it works. These campaigns communicate that what women can do about breast cancer is to buy things. It’s a disservice to women.

Q: If a woman wants to contribute to breast cancer research, how would you advise her to go about it?

Brenner: Look at what kind of research you want to fund then look at who’s doing that and who doesn’t already have enormous access to money. If you don’t know who’s doing it, contact a breast cancer organization in your area and ask.

Also, think about whether or not the organization is getting any results for the money that is going to them. What can they tell you about how successful their programs are about getting to the bottom of this problem?

Q: Any last thoughts?

Brenner: Research is a big universe. What makes signing up for a walk or sending in yogurt lids appealing is that somebody else is making decisions for us about where to put the money. But as long as we leave those decisions in the hands of those who are not directly affected by breast cancer we will continue to throw money down a black hole. Remember: Activism works by multiplying the affects of a single action. It is the power of individuals to create change.

*Note: The interview has been edited for length.