Shocking Pink: A Bereaved Brain Tumor Parent’s Perspective on Breast Cancer ‘Overawareness’

By Suzanne Leigh

Breast cancer advocacy is a thorny issue among those of us who are parents of children with malignant brain tumors. Our children are diagnosed when they are young – most commonly before the age of 8. Overall approximately 50 percent of pediatric brain tumor patients die, usually in childhood or early adulthood. Most breast cancer patients survive but when they do die, it is rare that they are younger than 35. The median age of a patient diagnosed with breast cancer is 61; the median age of death is 68.

The National Cancer Institute dedicates more of its funding to breast cancer than any other cancer (almost twice as much as lung cancer, the most common cause of cancer death in women). Like the government, many of us feel good about directing our charity dollars to breast cancer. Consider this interesting tidbit reported by the American Institute of Philanthropy: two-thirds as many women die of colorectal cancer as those that die of breast cancer. But for every nonprofit serving people with colorectal cancer, there are 20 serving women with breast cancer.

In a provocative article published in the New York Times Magazine, Peggy Orenstein notes that Susan G. Komen, the nation’s largest breast cancer nonprofit, which made the pink ribbon ubiquitous, raised $472 million in 2011. That’s a fantastic figure compared to the $5.4 million raised in 2011 by the Pediatric Brain Tumor Foundation, self-described as the “world’s largest non-governmental source of funding for childhood brain tumor research.”

Epidemic of overawareness, overdiagnosis

But just 16 percent, or $75 million, of Komen’s revenue is directed to research, and an extraordinary $231 million is relegated to screening and education. Screening and education are not saving lives, says Orenstein, a breast cancer patient herself. They are causing “overawareness,” overdiagnosis and in many cases women are undergoing potentially life-threatening treatments unnecessarily. That’s because many “breast cancer survivors” have been diagnosed following mammograms with ductal carcinoma in situ, a stage zero cancer, described by Dr. Laura Esserman of the Carol Franc Buck Breast Care Center at UCSF, as not cancer — but a risk factor. Treating DCIS with a double mastectomy or lumpectomy and radiation is the equivalent of performing heart surgery on someone with high cholesterol, says Esserman.

Orenstein says that money that could be on spent on research aimed at helping those patients with the worst prognoses is being squandered on creating overawareness, resulting in a sea of pink merchandise and campaigns for annual mammograms, including in women younger than 50.  She cites a survey of randomized clinical trials involving 600,000 women, that found for every 2,000 screened annually for 10 years, one life is prolonged but 10 healthy women are given breast cancer diagnoses and are treated unnecessarily.

Some smaller breast cancer nonprofits urge girls to perform monthly self-exams as soon as they start puberty. “The chance of a 20-year-old woman getting breast cancer in the next 10 years is about 0.06 percent,” says Orenstein, “roughly the same as for a man in his seventies. And nobody is telling him to ‘check your boobies.’”

As the parent of a 12-year-old who died from a brain tumor, I’m aghast. What if that $231 million, raised in 2011 alone, that was spent on screening and education and might have harmed more than it helped, would have been rerouted to the development of a treatment for children like Natasha? There isn’t a single FDA-approved drug for children with malignant brain tumors, except for a handful of  “slash-and-burn”-style chemotherapies that have been around since the 1950s and 1960s and are indicated for a range of cancers, including some pediatric ones. After Natasha’s last relapse when surgery and radiation were no longer options, she was prescribed a drug approved to treat breast cancer – a drug that failed to decelerate her disease, not surprisingly.

Overlooked by the pink ribbon campaign

And as someone who has known, admired and loved people who have lost their lives to adult cancers, I’m disappointed that organizations like Komen are not using more of their substantial revenue to research better therapies for women with advanced metastatic breast cancer. Those patients whose futures are bleak and limited are noticeably absent from the pink-ribbon campaigns.

I learned about one of them recently. I didn’t expect to be moved. She died at age 40. How I wish that my child had lived to be 40 … or 30, or 20 — or even 13.

Jennifer Merendino was diagnosed with stage 3B breast cancer at 36. After recovering from treatment, her cancer was found to have metastasized to her bones and liver. She died shortly after it had spread to her brain. Her husband, New York photographer Angelino Merendino, documented her four-year odyssey with a stark black-and-white photo essay ( Something about her reminded me of Natasha: the round, knowing eyes, the delicate face, the palpable vulnerability. The photos are astonishing; they are beautiful and haunting and agonizing and they made this bereaved parent cry not only for the 12-year-old daughter I have lost, but for a stranger with soulful eyes called Jennifer.

Are you listening, Susan G. Komen?


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