In her op-ed in the New York Times, Angelina Jolie describes her decision as simple. “Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much I could,” she wrote. “I made a decision to have a preventive double mastectomy.”
In her effort to spread awareness and encourage more women to seek out preventive treatment, Jolie paints a picture of her double mastectomy as relatively simple and pain-free. She includes some of the ugly details: of the “nipple delay” procedure, she described some pain and bruising, and of the major surgery, she wrote “it does feel like a scene out of a science-fiction film.”
But after that, she wrote, you’re back to “a normal life.” For her kids, she added, “they see nothing that makes them uncomfortable. … Everything else is just Mommy, the same as she always was.”
But was it really so easy? Others who have been through similar experiences suggest not.
In 2008, actress Christina Applegate, who, like Jolie, underwent a double mastectomy after testing positive for the BRCA1 gene mutation (which is linked to breast and ovarian cancer), told reporters at the time that the choice was “a tough one” to make.
“Sometimes, you know, I cry and sometimes I scream and I get really angry and I get really like, you know, into wallowing in self-pity sometimes,” she said.
Journalist Lizzie Stark wrote of the psychological effects of losing her real breasts – something Jolie only glosses over. “I am not just losing my breasts, I’m losing the way my breasts look in my favourite shirt, the organs that make me a sexual, curvy woman, and I’m losing them unjustly at an age when most of my friends are getting engaged, married or pregnant,” Stark wrote in 2010, just months before she was scheduled to have the procedure done.
And Guardian journalist Emma Gilbey Keller wrote of the toll the procedure had on her body afterward, including nausea, vertigo and an infection on one of her breasts. “None of it has been easy,” she wrote. “I’ve been on anti-anxiety medication since I heard the word ‘biopsy.’ ”
Like any surgery, there are risks to undergoing a mastectomy, including infection, fluid build-up at the surgical site, blood loss, blood clots and pain, according to FORCE, a non-profit dedicated to helping people cope with hereditary breast and ovarian cancer. And because even the best surgeon will never be able to remove all breast tissue, a small risk of developing breast cancer anyway will always remain.
On top of that, there’s the issue of access. Jolie wrote that, in the United States, the cost of genetic testing alone cost $3,000 (U.S.) – something which, she admits, “remains an obstacle for many women.” (Here in Canada, it’s less of an issue: In Ontario, for example, OHIP covers BRCA1 and 2 testing for women who are at risk for breast cancer).
All four women – Jolie, Keller, Stark and Applegate – say that, despite it all, they’re glad to have had the surgery. “Most, even those who had surgical complications or developed a more negative body image, say they’d elect to have it again because it brought them peace of mind,” a researcher at the Mayo Clinic Cancer Center told Shape Magazine.
But still, “I wish there had been another option, though,” Keller wrote. “I wish there was a way of eliminating these cells without taking out so much of my body.”