05 October 2011

Waesuck Wednesday: Breast Cancer Edition

October is Breast Cancer Awareness Month. That's great. Breast cancer sucks, and it is prevalent. According to the National Cancer Institute, "based on current rates, 12.2 percent of women born in the United States today will develop breast cancer at some time in their lives." The American Cancer Institute says, "Breast cancer is the most common cancer among women in the United States, other than skin cancer. It is the second leading cause of cancer death in women, after lung cancer."

Read that again—second leading cause. Do you have a clue when lung cancer awareness month is? Do you know what color ribbon to wear? "Lung cancer is one of the most common cancers. In 2007, lung cancer will account for approximately 15% of all cancer diagnoses and 28% of all cancer deaths. It is the second most diagnosed cancer in men and women (after prostate and breast, respectively), but it is the number one cause of death from cancer each year in both men and women," according to lungcancer.org, a program of CancerCare. The problem is that lung cancer has not had the marketing forces behind it to make awareness of it a global phenomenon. It's not as sexy. It's not pink. A recent USA Today/Gallup Poll revealed that "84% of all Americans including 95% of those ages 18 to 29 now 'shop for the cure,' buying pink products with a breast cancer tie-in." However, some of the pink pushers are coming under fire for how little of the proceeds from pink products actually go toward research—and how much goes toward overhead. This month Marie Claire published a pointed article examining the trend of pink washing and the ugly trend of "charity organizations" and pro-pink items not really supporting the cause. "The fact is, thousands of people earn a handsome living extending their proverbial pink tin cups, baiting their benefactors with the promise of a cure, as if one were realistically in sight," the article reads. More over, the author recommends the following: "Skip the pink-ribbon merchandise. Because no one really owns the rights to what has become the universal symbol of breast cancer (though Susan G. Komen for the Cure trademarked its own version), peddling the logo has become a massive racket, overrun by slick profiteers exploiting the public's naive assumption that all pink purchases help the cause."

Some breast cancer patients have become extremely aware of the effect that pink washing is having on research for the disease—capital gains vs. finding a cure—and the looming presence of breast cancer in the overall cancer picture. The USA Today/Gallup Poll showed that "one in three adults, and nearly half of women under 50, say the intense focus on breast cancer overshadows other worthy causes." Women who are part of the breast cancer social media movement on Twitter loudly echoed this sentiment during a TweetChat on Monday night. Gayle Sulik, a medical sociologist under the Twitter handle @pinkribbonblues and author of a book and blog by the same name, led much of the discussion about the role of pink in breast cancer awareness. "Saw the White House swathed in pink light tonight on Nightly News. Doubt it will be (purple?) for pancreatic cancer," she tweeted. Of the a handful of men participating in the chat—including the well known advocate Dave deBronkart a.k.a. @ePatientDave, registered nurse Andrew Lopez a.k.a @nursefriendly, and an IT/tech guy named John and tweeting as @joltdude—John was the first man to speak out in regard to other cancers, "Nothing 4 nothing, w/ all ths pink, other cancers seem 2 B left out of equation.. including us guys... we get cancer 2... All cancers need to be treated, resolved to the best of our ability. and by only focusing on one, we really do neglect everyone else." To further complicate the issue, awareness doesn't equate action, chat participants said. "People are aware, but many now think all BC is diagnosed early & curable," wrote Dr. Deanna Attai, a breast surgeon in L.A. Awareness of the disease has not made it any easier for those suffering from it. "I am sick of being told I got the good cancer. People are not aware. Not really," wrote blog author and patient Nancy Stordahl. "Sad thing is it's all about the marketing. That's why metastatic is invisible. What kind of lipstick goes with thrush?" asked Jackie Fox, breast cancer survivor and author of From Zero to Mastectomy: What I Learned & You Need to Know About Stage 0 Breast Cancer.

With all the organizations and all the pink and all the awareness, it has felt to me that breast cancer, among other prevalent diseases, gets more than its fair share of attention. For better or worse, we as a culture are fascinated with breasts and what they represent and slogans like "Save the Ta-Tas" is fun and catchy. "One must admit, 'Save the walnuts' doesn't have the same cachet," Dave deBronkard pointed out during the chat. Previously I blogged about having disease envy and particularly called out breast cancer patients for monopolizing pink; however, I found Monday's chat eye-opening and refreshing in its honesty. It had never occurred to me that those in the pink might be tired of all the pink and that the quantity of attention does not make up for the lack of quality attention to the subject. The chat served as one of what I'm sure will be many calls to action for improving and altogether evolving pink's message to one of overall breast health and cancer awareness as a whole. One idea for this is to lend pink to other diseases. Use the pre-established breast cancer networks—which due to the sheer number of those effected are a true community force—to call attention to other diseases by letting them go pink. The goal isn't to necessarily keep straight what pink represents each month or each week but to get people talking about their health. While pink may have well accomplished its goal of awareness of breast cancer, people are not as aware of so many other serious diseases such as my own disease—intimal fibromuscular dysplasia. In exchange, those of us who want to support those with breast cancer will do something real to help. We will push for research, but we will also be there to do with the stuff that no pretty color or twisted ribbon can really do—we'll listen, we'll let you talk about something else altogether, we'll hug, we'll let you be angry, we'll let you cry, we'll help you celebrate, we'll let you be tired, we'll drive to doctor appointments, we'll make something other than another damned casserole. No matter what the disease, no matter what the outcome, the experience is exquisitely human, which is what we all are.

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"We are what we think. All that we are arises with our thoughts. With our thoughts, we make the world." — Buddha