Sometimes you just have to write…
It makes sense. It’s just what I would have done.
This was my first thought on hearing that Angelina Jolie has had a preventive double mastectomy followed by reconstructive surgery.
Because it is literally what I would have done. You see, my family also has the BRCA1 mutation. Both of my father’s sisters who lived to adulthood had breast cancer. Only one of them had a daughter, and she died in her 40’s of breast cancer. In addition, my mother had breast cancer, though that is, of course, unrelated to the breast cancer on my father’s side, and as far as I know she was the only one in her family to have it.
Long before the gene was identified, when I was in high school in the early 80’s, I decided that I would get preventive mastectomies when I was older. Breast cancer was clearly endemic in my family, and I didn’t like the odds. My plan was to have a child first, if possible before I turned 30, then, after breastfeeding the child, get the surgery. At that time I didn’t know anything about reconstructive surgery: my mother had a prosthesis held in place by her bra, and I assumed that’s what I would do.
I remember telling various friends that that was what I planned to do. The usual reaction was a knee-jerk “I’d never do that.” I have to admit to not understanding why women feel like their breasts are so important. I assumed that it was their fear of never attracting a man again. But I also figured that if I never attracted a man again, that was better than being dead!
It’s been a few days since I heard about Jolie, and I’ve been thinking about it a lot. I admire her for “coming out.” She could have hidden this forever, since she’s had reconstructive surgery and presumably her breasts inside clothes won’t look any different than before. Her announcement breaks a silence: if she discusses it, we can. Celebrities serve an important role model function in this way, like when Betty Ford discussed her alcoholism or when Princess Di hugged people with HIV.
After the admiration, though, comes anger. Angelina Jolie had the option of doing this surgery. She is tremendously fortunate. Many, perhaps most, don’t have this option. And that makes me angry.
I’ve been fortunate too. I moved to the Netherlands. I had both my children and breastfed them by the time I was 37. The BRCA1 and BRCA2 genes had been discovered by then. And, in Holland, you can’t be denied health insurance, no matter what your preexisting condition is.
So I went to my GP and told him about my family history of breast cancer, and he referred me to a geneticist (All medical care goes through the GP first here – they’re a sort of gatekeeper, which keeps costs down.)
The geneticist listened to my story and agreed that, on my father’s side, there was probably a mutation. If I had the mutation, I would have about an 80% chance of getting breast cancer, he estimated, and a somewhat lower chance of ovarian cancer.
While we waited for my one surviving aunt to send a blood sample for testing from the US, I had a couple more sessions with the geneticist, which were more therapy than medical: how would I feel if the test was positive? What would I do with that information? And so on. I was pleased that preventive surgery and reconstructive surgery were offered as options, and neither would cost me a cent.
It turned out that my aunt did indeed have the mutation, but, when I was tested, it turned out that I didn’t.
This came as a huge relief, of course. My odds of getting breast cancer were average, rather than extraordinarily high.
But what about all those women in places with poor or non-existent health care? What about women who, like Angelina Jolie, are American, but who don’t have her money? She says she’s encouraging people to get tested, but who will pay for it? In her own words:
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.
Angelina Jolie made two courageous decisions. She chose major surgery for the sake of her children: to be able to continue being their mother as they grow up. And, second, she chose to reveal it to the world. I admire her tremendously, and her partner, Brad Pitt, too, for behaving like a real man and supporting her.
I just wish everyone else with this gene mutation could do the same thing.