In a crisis? Take notes, Nora Ephron advised, because “everything is copy.”
Diagnosed in 2014 with an aggressive breast cancer, Kate Pickert, then 35, took excellent notes. After all, she was a health-care journalist who had written about breast cancer in the past. And like any savvy journalist, she recognized a great story when she was thrust into it.
Pickert’s new book, “Radical: The Science, Culture, and History of Breast Cancer in America,” intermittently tells the story of her diagnosis and treatment, her gut-wrenching fears and uncertainties. But as the subtitle suggests, “Radical” is much more - a remarkably unflinching and clear-eyed examination of scientific and cultural progress and failure centered on a disease once only whispered about, now ballyhooed in marches and merchandise.
How unflinching? Pickert sat in an operating room and observed a bilateral mastectomy a scant few years after she had the same surgery. Twenty-four years after my own surgery, I almost keeled over reading her vivid account. For example: “The smell of burning flesh was unmistakable as the knife hissed and small whiffs of smoke floated upward into the operating room’s air-conditioning system. Soon, Chang had her hands deep inside the patient’s left breast skin pocket, pulling out more and more flesh as she worked.”
“Radical” tracks breast cancer treatment beginning with the first brutal mastectomies before anesthesia and the origins of chemotherapy drugs on World War I battlefields. Today, treatments are targeted and refined, “with effective smaller surgeries, less toxic treatments and reliable drugs that blunt side effects and pain,” Pickert writes. Her own cancer, which was treated by a new drug, would probably have been fatal had it been diagnosed a decade earlier.
Those advances, in addition to promising genetic research and dropping mortality rates for breast cancer, are some of the good news. At the same time, more than 40,000 American women still die of breast cancer every year. Even a third of women whose cancer is detected early will face recurrence or metastasis - and metastatic disease remains incurable. Annually, more than $1 billion is spent on breast cancer research, but scientists haven’t yet pinpointed the cause of most breast cancers, learned how to prevent them or discovered how to reliably identify the most lethal tumors.
Pickert’s chronicle of the cultural history of breast cancer and the juggernaut of pink ribbons, marches and branding is equally riveting. How did breast cancer, of all diseases, become such a cultural phenomenon that even pro football players sport pink in October? And what should we make of the Susan G. Komen foundation, the group that spearheaded breast cancer awareness, spawned pink-ribboned Races for the Cure around the globe, and lobbied businesses and government for funding for breast cancer research?
After these early breakthroughs, Komen’s phenomenally successful messaging about early detection and annual mammograms for all women over 40 turned out to vastly underestimate the complexity of breast cancer. When new research showed that most women in their 40s don’t benefit from annual mammograms - which are mostly effective for women over 50 - there was a backlash of outrage. An epidemiologist with a federal task force that suggested a change in mammography recommendations even received death threats. “Mammography had become something of a religion,” as Pickert dryly puts it.
Komen was also criticized for its employee salaries, emphasis on survivorship instead of metastatic disease and spending that allotted only 23% for research. The foundation never quite recovered from temporarily entering the abortion debate by cutting off funding to Planned Parenthood for breast cancer screenings in 2012. Even after a quick reversal in response to a public outcry, the foundation’s fundraising and reputation have diminished.
I first took notice of the Komen foundation in 1995, when I was diagnosed with Stage IIB breast cancer. A neighbor brought me a book by Nancy Brinker, who had founded Komen to honor her sister Susan, who died of the disease; later, Brinker herself was diagnosed with it. “You know what Nancy Brinker suggests?” asked my neighbor, who turned out to work for Komen. “She said you have to be proactive in your own treatment. You need to seek out the best doctors and treatments available.”
I don’t think I’d ever heard that term, “proactive,” before, and I didn’t especially like it. But lots of people were turning up at my front door, giving me advice, bringing me casseroles and calling me brave after my diagnosis.
It was a strange time - and I wasn’t exactly sane myself. When you’re told you have cancer, it’s like a bomb has exploded in your head. Your body has betrayed you, and you’re gutted with fear. You have entered “into what Susan Sontag called the kingdom of the sick,” as Pickert notes - a parallel universe of medical specialists, ominous tests and the specter of barbaric treatments.
Months later, after a bilateral mastectomy, chemotherapy and radiation, I staggered back into a world that assumed I was healed and whole. I wasn’t. I was a wreck. Every cough or ache felt ominous. According to the latest research, I had a 40% chance of surviving 10 years.
Looking back, I know how fortunate I was to have good medical care, health insurance, a strong family and lots of friends. I was also lucky to live in a 1990s world where breast cancer could be openly talked and written about, where survivor support groups were widely available. Medical treatment may have saved my life, but camaraderie with other survivors helped put me back together. To this day, I can’t see a woman whose hair is growing out after chemo without speaking to her, letting her know I understand. Whatever their missteps and failures have been, Brinker and the Komen foundation helped make this world possible.
Although Pickert notes Komen’s early accomplishments, she reminds us that most of the women interviewed for her book, whether breast cancer survivors or not, still “know very little about breast cancer itself, that it comes in different varieties, that a significant share of women diagnosed with invasive breast cancer will eventually see their cancer recur, that treatment has gotten far better and easier to endure, that mammogram screening is deeply flawed. It’s as if public understanding of breast cancer was frozen in time in the 1990s.”
Pickert has written and researched an invaluable book for the 300,000 American women who were diagnosed with breast cancer in 2019 and who face a bewildering maze of information and misinformation about screening, risk assessment and treatment options - even after billions of dollars spent on research and awareness. Readers who don’t come armed with Pickert’s expertise as a health journalist and her research skills will find this book to be a remarkable, up-to-the-minute resource - even if the information isn’t always comforting.
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“Breast cancer is a more formidable foe than the races, ribbons and culture around it would have us believe,” Pickert writes.
Last year, I lost my only sister to breast cancer. I can only hope Pickert has a long and productive life that chronicles the end of this terrible disease.