The first text came from my niece, who’d had a bilateral mastectomy last spring, to be followed by more prophylactic surgeries earlier this year.
“Oh my god! Angelina Jolie keeps stealing my thunder. She had a hysterectomy last week.”
To which my sister, having elected a hysterectomy/oophorectomy combo platter in 2000 and a bilateral mastectomy in 2012, responded: “Actually just ovaries and Fallopian tubes. Sissy!”
That sounds flip, and probably pretty cold. But it’s really just the honest, darkly humorous reaction of a mother and daughter who, like Jolie, have chosen to undergo operations to reduce the risk of cancers linked to a BRCA gene mutation. They belong to a tribe of hollowed-out women let down by their DNA, and just as much by ridiculously inadequate screeners for highly lethal gynecologic diseases. They get to make jokes if they want.
And judging by the thousands of Jolie-related comments all over social media in recent days, they aren’t the only ones with a pointed opinion on the matter.
Jolie first made her BRCA1 mutation public in a 2013 New York Times op-ed piece that detailed her path to a bilateral mastectomy after learning the mutation carries an 87 percent risk for developing breast cancer and a 50 percent risk of ovarian cancer. Last week she announced she’d had a laparoscopic bilateral salpingo-oophorectomy, sparing her uterus because her family history does not include that cancer. Once again the media treated her disclosure as though they’d never heard of such a thing. (What? Women are having prophylactic surgeries? Who else besides Brad Pitt knows about this?) The actress-filmmaker-humanitarian’s personal saga was back on front pages around the world.
That makes sense, of course. She’s a major Hollywood celebrity and what happens to her is news, whether it’s a cancer scare or a wardrobe malfunction. But let’s put this in perspective. In the United States, hundreds of thousands of women annually have bilateral oophorectomies before reaching natural menopause. Though overall the rate is dropping as studies point to serious health consequences, including increased mortality from cardiovascular disease, doctors still endorse prophylactic oophorectomy for the relatively small percentage of women with strong inherited disposition toward ovarian cancer, because it reduces their risk by 80-90 percent.
Assume that every one of the millions of surgeries to date has involved physical and emotional pain. Many probably also involved financial burden and fights with an insurance company. You didn’t get a Twitter alert for every genetic mutant who chose a prophylactic defense, but plenty has been said about this topic over the years, for anyone paying attention.
Jolie seems to understand how fortunate she is to be spared the majority of regular-people concerns. And most of us don’t begrudge her access to instant high-level medical care, or a megastar husband who jets home from Paris to be at her hospital bedside. Really, we don’t.
We appreciate that she’s been an articulate, compassionate ambassador for an impressive variety of causes — so many that it’s perhaps unfair to ask her to carry yet another flag. And yet, that’s exactly what’s needed. The fact is, every time Jolie speaks out and shares another piece of this personal and deeply moving story, more potentially at-risk women seek out information and contemplate their options. After her 2013 essay, the dramatic increase in demand for genetic testing was dubbed “The Angelina Jolie Effect.”
Of course, extreme preventive measures aren’t for everyone, nor should they be. There are as many arguments against as for surgical solutions, and no irrefutable proof that removal of female parts keeps killer cancers permanently at bay. Some people would rather not know their genetic road map; others worry about handing over that map to employers and insurance providers.
But being diagnosed with a mutation has its upsides in terms of health coverage. In my own family, where a BRCA2 mutation has claimed numerous lives and sent more than half a dozen women under the prophylactic scalpel, I’m comforted by heightened attention and increased access that gives my loved ones the option of chemoprevention drugs, such as tamoxifen and raloxifene, and regular transvaginal ultrasound and CA-125 blood tests that can sometimes indicate cancerous activity.
Jolie could be a powerful advocate for access to technologies and treatments that give more women a fair shot at detecting gynecologic cancers early enough to be disarmed — someday, maybe even early enough to make risk-reducing surgeries unnecessary. Or even, dare we hope, stepped-up research that results in stopping these cancers before they start.
Already, she’s inspiring determination and good humor in the face of some very scary genetic odds.
“I was told that I will look more like her after having this next surgery,” my niece texted recently.
Ah, but would her husband then “look more like Brad,” I texted her back? Because that would be news.
Janice Page is the Globe’s deputy managing editor for features. Follow her on Twitter @GlobeJPage.