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  (Curtis Lantinga)

 

(Curtis Lantinga)

MARGARET WENTE

Jolie’s choice: When to cut off a body part? Add to ...

A lot of celebrities have used their profiles to raise public awareness of their personal afflictions. But Angelina Jolie is different. She’s probably the most famous actress in the world. She has built her movie image on being hot and tough and wild – and, on top of that, she has a giant brood of kids. She oozes both fecundity and sexuality. Billions of people are intimately familiar with her amazing body and its luscious curves.

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That’s why her revelation that she’d had her breasts removed came as such a shock. To the public, her breasts are part of what defines her. It’s scarcely possible to imagine her without them. New reconstructive techniques, she says, can get “beautiful” results. Nonetheless, the decision to amputate your breasts is brutal. As Susan Love, the well-known breast surgeon, told The New York Times, “When you have to cut off normal body parts to prevent a disease, that’s really pretty barbaric when you think about it.”

Ms. Jolie has a rare genetic mutation of the BRCA1 gene that put her at extremely high risk for both breast and ovarian cancer. Her disclosure, in a New York Times op-ed, was dignified and upbeat. (For famous people, non-disclosure is not an option; the only option is how you try to control the message.) She has been widely praised for empowering other women who might be at risk to be tested, and make their own decisions with resolve.

Women who have their breasts removed typically report an overwhelming sense of psychological relief. But preventive breast removal is far tougher, both physically and emotionally, than Ms. Jolie makes it sound. As Lizzie Stark, now a 31-year-old journalist, wrote online in 2009 shortly before having her breasts amputated, “I am not just losing my breasts, I’m losing the way my breasts look in my favorite shirt, the organs that make me a sexual, curvy woman.” The surgery causes significant loss of sensation in the breast, and reconstructive surgery can be prolonged and complicated. Ms. Jolie also plans to have her ovaries removed, according to People magazine. Losing your ovaries has serious long-term consequences that can’t always be corrected by hormone therapy.

These drastic measures are clearly better than an early death from cancer. But those aren’t always the only options. Another choice is close surveillance, so that any cancer can be detected and treated early. Some doctors are also concerned that Ms. Jolie’s celebrity status might set off a stampede for expensive, unnecessary testing and even prophylactic mastectomies – in much the same way her famously plump lips triggered a craze for collagen injections. In the U.S., surgeons say the number of prophylactic mastectomies has soared – even among women who don’t carry the BRCA1 gene. In other words, women are cutting off their breasts for no good reason.

“One of the downsides of breast cancer awareness is that there is a situation of hyperawareness,” Todd Tuttle, chief of surgical oncology at the University of Minnesota, told NBC News. “Women … are just assuming they are going to get breast cancer.” Yet, for most of us, the risk is much smaller than we think – about one in eight – and survival rates are much higher, especially for those whose cancer is detected at an early age.

For all the good they’ve done, breast awareness campaigns – along with the growth in pre-Stage 1 detection – have induced a sort of hysteria. I have friends who were convinced that their pre-cancerous (and probably benign) growths were a death sentence. I also have friends who’ve made Angelina’s choice, and I admire their guts.

For better or worse, these decisions will present themselves to us more and more often. Would you want to know if you carry the gene for Huntington’s disease, a brain disorder that combines mental and physical decline? Would you want to know if your kids will get it? (In fact, you probably wouldn’t. The vast majority of people at risk for Huntington’s choose not to be tested, because there’s no treatment.) Or how about early onset Alzheimer’s?

The new world of genetic testing is a double-edged sword, sometimes a blessing and sometimes a curse. Increasingly, the kind of choice Angelina Jolie had to make will be ours, too.

 

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