Sitting alone on the exam table, in a paper gown and feeling naked in more ways than one, I stared down at the number on the card in my hand. It was for a geneticist so I could be tested for the BRCA gene, a known marker for breast cancer. “It’s time, Charlotte,” my doctor had said to me just moments earlier as she left the room.
I have, as they say, a risky family history. It was a very personal moment. But then, that’s the thing about breast cancer: You can’t talk about it without it being personal. If it isn’t you, then you have a mother, sister, friend, or daughter in the crosshairs. And no one knows that better than Peggy Orenstein, the best-selling author who penned the recent New York Times Magazine spread, “Our Feel-Good War on Breast Cancer.”
Orenstein is a breast cancer survivor herself. Twice. Yet she doesn’t like calling herself one, something she let me know mere seconds into our conversation. “Who am I? I know that ‘survivor’ is meant to replace ‘victim,’ but that leads to the problem of making people with cancers into winners— ‘survivors’—or losers—which are...‘die-ers?’ So I’ve grown uncomfortable with that term.” She paused and then added, “‘Veteran?’ Maybe. I don’t know what to call myself anymore.”
The terminology isn’t the only thing making Orenstein uncomfortable these days. Her article, which reads part exposé and part personal essay, takes on the Pink Ribbon machine as we’ve all come to know it. “Every year I get this mass of mostly useless press releases [about breast cancer awareness campaigns] and it makes me angry. I can't stand by and watch this anymore. I have literal skin in the game! This is my life!" She points out that breast cancer awareness has almost become a parody of itself with everything from t-shirts to yogurt lids to garbage cans painted in that singular shade of petal pink. It’s become cool. It’s become sexy. But the one thing it hasn’t become is cured.
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While the technology for treating cancer is advancing—and saving lives—the technology for screening for it may be overrated. Especially when it comes to the much-touted mammograms. Orenstein writes, “If screening’s benefits have been overstated, its potential harms are little discussed. According to a survey of randomized clinical trials involving 600,000 women around the world, for every 2,000 women screened annually over 10 years, one life is prolonged but 10 healthy women are given diagnoses of breast cancer and unnecessarily treated, often with therapies that themselves have life-threatening side effects.”
But even if mammography and self-exams aren’t the panaceas we’ve been taught, so what? “If we were making progress, I wouldn't care if people were dancing topless on tables or whatever [for breast cancer], but we're not. Not enough, anyways, and not because of those campaigns,” Orenstein says. “If 'care' isn't translating into something that is effective, what's the point? It's not enough to care."
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Part of Orenstein’s worries stem from the fact that breast cancer treatment does not come without consequences, both physically and mentally. “Our culture of fear leads to over-treatment.” And, she explains, pushing women into treatments they may not want or even need is not only harmful but manipulative. "There are many good breast cancer advocacy groups, ones that I support, but I'm concerned that there is a part of it that is going off the rails and harming women by overselling mammography, pushing self-exams on little girls." Referencing the younger sisters among us, she cites a recent survey of 2,500 girls ages 8 to18 that found 30 percent believe they might currently have breast cancer despite the fact that breast cancer at that age is extremely rare.
It’s this type of fear-based thinking that drove her to spend months researching and writing the article in spite of the personal toll it took on her. “It was very hard and emotional for me,” she explains. “But I also feel a sense of responsibility and some anxiety. A front-page spread in The New York Times is a huge platform. It can change the national conversation."
And according to Ornestein, it needs to. She recalls a conversation with Robert Aronowitz, a medical historian, who told her, “When you’ve oversold both the fear of cancer and the effectiveness of our prevention and treatment, even people harmed by the system will uphold it, saying, ‘It’s the only ritual we have, the only thing we can do to prevent ourselves from getting cancer.’”
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So what do we do, then? My question to her was, of course, as much personal as professional. “I didn't do testing until I knew for sure what I was going to do if it came back positive,” she told me of her own BRCA test. But hers came back negative and, demonstrating again the fickle nature of screening procedures, she got breast cancer anyhow. “Look,” she said matter-of-factly, “Even if you remove your breasts, the risk is not zero. In life your risk is not zero. I'm driving over the fault line right now. And talking on my phone, by the way, which is also a risky maneuver! We need to understand reality and not react out of fear."
But what about when reality and fear collide? She listened as I blurted out the story of my own spotted genetic history, my impulsive choice get the BRCA test done, and my anxious waiting, then she answered kindly, “There is no good choice. All you can do is make the best decision you can with the information you have. And then don't look back."
Her advice quelled the butterflies in my stomach because in the end it’s all about giving women back the control over their own health, removing the onus of guilt and fear, and giving them choices. I chose to take the test because I’m a girl who needs to know things. My sister, who shares my same genetic history, chose not to. It’s personal.