Redefining Pink

Since the end of September everything you see — from buses to billboards to Monday Night football to the grocery store — shimmers in pink. You can “support breast cancer research” (so it is said) by purchasing everything imaginable and a multitude of the unimaginable as well. Every year it gets worse. Google Breast Cancer Awareness Products. You could spend the rest of your life reading the lisings, about 37,000,000 results. Without any inkling of the true realities of breast cancer October, for me,  feels like a new form of hazing.

haze verb (used with object), hazed, haz·ing -to subject (freshmen, newcomers, etc.) to abusive or humiliating tricks and ridicule.

There are 37,000,000 listings for breast cancer awareness products. Don’t buy it.

The year I was diagnosed I spent the first day of October beginning my second course of chemotherapy, and I was celebrating. The new drug I was on, Taxotere, was much easier to deal with than chemical cocktail I had been getting–FAC (FluorouracilAdriamycin, and Cytoxan). To give you a sense of its effects, Adriamycin is commonly referred to as the “Red Devil.” But instead of a three-day infusion on a pump, I could now have a one-hour drip. By comparison that felt like vacation.

I was also celebrating because after six months I was half way through chemotherapy. I was celebrating because after four surgeries and a life-threatening infection, I finally had enough energy to drive myself to my cancer center and no longer looked like a walking skeleton. I was celebrating because my hair had grown out and it looked cool, even though it was about to fall out again. My celebration was not about survivorship or pink. My celebration was about getting through cancer treatment one day at a time. I was celebrating because that’s the way I roll. I was not celebrating the pink ribbon.

Aunt Jody and Tyler McCready, who turned 18 October 5.

But celebrating feeling better or subtle uplifts during cancer treatment does not mean I’m not deeply critical of pink consumerism masquerading as research, of flawed studies, of misinformation about breast cancer whenever and wherever I find it.

Plus as a patient among many, the pink hoopla was embarrassing. There were thousands with cancer my cancer center who were NOT having parades in their honor. Those with blood and lymph cancers, colon, ovarian, uterine or lung carcinomas. Myelomas, sarcomas, glioblastomas. Women with those cancers had treatments as grueling as mine and some had significantly higher mortality. But they did not have a pink machine around them. As a breast cancer survivor, I think we need to ditch the machine, redefine and be realistic about pink.

A few thoughts to get us started:

  • Relating to the Ribbon.  Each woman’s perception of the pink ribbon is part of her story. There are 2.5 million breast cancer survivors and 2.5 million stories. Listen to them. Even the ones that are different from your own.
  • Awareness vs. Education: Many people are aware of and affected by breast cancer, from cab drivers to elementary school children. What they understand about the disease may be something else entirely. That’s our job as breast cancer advocates, to know the facts and pass them on. The National Breast Cancer Coalition has an excellent series on facts and myths about breast cancer that are clear, evidence-based, and easy to pass along.
  • It’s not just about white, educated professional women. African American and Hispanic women are characterized by late diagnosis. African Americana women often have more aggressive disease than do white women and cancer itself has now overtaken heart disease as the leading cause of death in the Hispanic population. Find out what is happening in underserved communities where basic outreach still is essential. This point is missing in many awareness discussions. There are cases where lives actually DO depend on women mammograms. That doesn’t mean we stop working for better detection or fail to acknowledge the limitations of screening as a diagnostic tool.
  • Early detection isn’t everything. Some 30 percent of all breast cancer cases will metastasize. Initial staging is one factor of many impacting breast cancer survivorship. Genomic science must continue to burrow into cancer biology — triple negative and inflammatory breast cancer, reasons why some cancers are aggressive and others aren’t. As a survivor this means I have a plan that I review yearly with my internist. My health and life depend on this. I grasp that cancer can outwit our best efforts and adherence to recommended guidelines. But instead of living like there’s no tomorrow, I live as if today is the best thing that’s ever happened. Because it is.
  • Stop racing for a cure. Let’s start thinking about them, instead. There isn’t a cure for breast cancer. Eventually there may be genomic analysis of your particular tumor and an individualized plan developed to eradicate it. While the oncologist’s toolkit is expanding, today’s kit will look rudimentary within another generation. The biology of breast cancer, and the mutations giving rise to cancer is, in some ways, in its infancy. Every layer of science explained reveals another layer of complexity. We cannot, must not, fritter away research dollars. One in two men and one in three women will be diagnosed with cancer over the course of their lifetime. Make your voice heard in your congressional representative’s office, and make it known repeatedly that you support the current level of funding at the National Cancer Institute.
  • The power of mutual respect. My cup of tea might be your cup of coffee. You might support an organization I do not, but that doesn’t mean we don’t share a mutual goal or support each other’s experience. My feelings about pink are just that: feelings. Many writers besides me have been willing to “take on pink.” Just look at the writers of the Breast Cancer Consortium and the work of my #BCSM co-moderator Alicia Staley. Their critiques of the pink industry are vital for moving breast cancer advocacy forward. And why not join one of our Monday night tweet chats to gain additional insights from Deanna J. Attai, MD, FACS and the other medical oncologists, radiologists and surgeons who routinely join our discussions? There is so much to learn from each other in a respectful social space.
  • Global Awareness.  At the World Health Organization’s Initiative for Noncommunicable Diseases presented at the 2011 meeting of the American Society of Clinical Oncology, Benjamin O. Anderson, MD explained that in 2010 more than 50 percent of the world’s deaths from breast cancer occurred in developing, not high-income nations. For many of these countries awareness is not about mammography, which may not even be practical, but what kind of interventions will make the greatest and most immediate impact in decreasing mortality. In redefining pink, we need to expand our global breast cancer conversation in ways that take international contexts into real account.

As the first week of Breast Cancer Awareness ends, it reminds me of how Christmas has been commercialized – it starts early, is in your face, and makes myth of the experience itself. Likewise, the pink machine can trivialize a serious disease, divert discussion and dollars. But if we continue to act fearlessly – as friends, survivors, advocates and activists –  in bringing our intellectual collective to bear, we can change the breast cancer landscape for our daughters. Breast cancer advocacy must move forward in a coordinated way: targeted outreach, targeted research, targeted education built on a foundation of mutual support and respect. We must redefine pink.

 

Breast Cancer Consortium member Jody Schoger has more than 25 years of experience in public relations and communications in health care, science, education and the arts. Following her own diagnosis with a locally advanced breast cancer in l998, she has since devoted her energy to helping other survivors. She is the author of the “Anchored Activism” column in Oncology Times, the respected WomenWithCancer blog, and the creator of Breast Cancer Social Media (#BCSM), a popular tweetchat for breast cancer survivors. Her writing has been featured in Cure Magazine as well as Cure’s blog. She has served as a grant reviewer for the Lance Armstrong Foundation, is a member of the Breast Health Collaborative of Texas, the National Breast Cancer Coalition, and serves on the American Breast Surgeons Board of Advocates. She recently spoke on survivorship on a #Med2 panel at Standord and will do so again at Life Beyond Cancer Center’s survivorship retreat and the fifth annual Digital Pharma East conference in Philadelphia. A frequent guest on SIRIUS radio’s “Doctor Radio,” she also has been quoted several times in USA Today and other publications.

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