Hollywood celebrity Angelina Jolie was hailed last week for her bravery in revealing that she has had a preventative double mastectomy. The New York Times published her explanation as a scoop on its op-ed page:
"For any woman reading this, I hope it helps you to know you have options. I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices."
Susceptibility to breast and ovarian cancer runs in Jolie's family. Her mother died at 56 of breast cancer and she carries the BRCA1 gene. Doctors told her that she had an 87 percent chance of contracting breast cancer. After the operation, she said, the risk is only 5 percent.
Media reaction was overwhelming supportive. The star of Lara Croft Tomb Raider, Girl, Interrupted and A Mighty Heart had moved from being a mere mortal to "an archetypal goddess" in the gaseous burbling of a Huffington Post columnist. "Her decision to go public about it will save countless women's lives," wrote a columnist for The [Melbourne] Age, Wendy Squires.
But will this publicity help really help breast cancer sufferers?
Daily Mail columnist Amanda Platell criticised Jolie for making the difficult and exhausting surgery seem too easy. Her doctor at the Pink Lotus Breast Center in Beverly Hills posted the whole procedure on her blog. It was staged over three months and it takes many weeks to recover. However, the doctor said that Jolie was filled with "bountiful energy", worked hard on directing another film and took time out to visit the Congo to highlight violence against women.
"To imply, as she has done, that it is possible to bounce back in a few days places an unfair burden on those women who struggle physically and mentally in the aftermath of such major and life-changing surgery."
There was a political edge to her essay as well. Jolie made an urgent plea for making genetic tests widely available: "It has got to be a priority to ensure that more women can access gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live. The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women."
Was this an attempt to influence a case before the US Supreme Court about whether Myriad Genetics can legitimately hold a patent on the BRCA 1 and 2 genes? These have given Myriad a monopoly on genetic tests for them. The company's share rose after the publication of Jolie's op-ed.
Media coverage, though, hardly scratched the surface of the complex ethical issues involved in Jolie's decision to remove both breasts even though were no signs of cancer. Removing body parts is a pretty barbaric treatment for a disease which you don't have.
A positive test result for a harmful BRCA1 or BRCA2 mutation is not a death sentence. It is only an index of the risk of developing cancer and it does not indicate whether a woman will actually develop cancer or at what age.
An American woman born today has about a 1 in 8 chance of being diagnosed with breast cancer at some time during her life according to the US government's National Cancer Institute (NCI). The BRCA1 and BRCA2 mutations are estimated to account for only 5 to 10 percent of these cancers among white women in the US. Furthermore, although Jolie says her risk of developing breast cancer was 87 percent, the NCI says that the lifetime risk for women with these mutations is only about 60 percent. It is quite possible that other factors may have increased the risk in her case. But this suggests that the take-home lesson from Angelina Jolie's example is very limited. It is not going to save countless women's lives.
According to the NCI, "preventive mastectomy should be considered in the context of each woman's unique risk factors and her level of concern." In other words, worry itself is a factor. Many women with the BRCA gene fret so much about their future that they come to think that a mastectomy is the only solution.
In fact, one study from the University of Michigan has shown that nearly three-quarters of women with cancer who decided to have both breasts removed were actually at very little risk of developing cancer in the healthy breast. They were driven more by fear than by sound medical reasons. Another study from the University of Minnesota found that the rate had more than doubled between 1998 and 2003.
"We are confronting almost an epidemic of prophylactic mastectomy," Dr Isabelle Bedrosian, a surgical oncologist at M. D. Anderson Cancer Center in Houston, told the New York Times. "I think the medical community has taken notice. We don't have data that say oncologically this is a necessity, so why are women making this choice?"
Jolie has had a very difficult personal history with a number of partners, including a lesbian relationship, estrangement from her father, the early death of her mother, adopting as a single parent, global fame as the world's most beautiful woman, and intense scrutiny of her personal life by the media. Her background is obviously unique and her decision may be driven more by fear than by evidence. She is brave, intelligent and determined but women should no more imitate her preventative double mastectomy than her 14 celebrity tattoos.