Sometimes you just have to write…

It could have been me


the letter to my aunt with her positive results for BRCA1

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.

  • She could afford the testing. I don’t know if any insurance company in the US would cover the cost, which is a few thousand dollars. (Readers from the US: could you enlighten me about this? Would your insurance cover this test?)
  • Then, when she tested positive for the BRCA1 mutation, she could get elective surgery. Again, I don’t know if any insurance company in the US would cover elective surgery, or if they wouldn’t cover it until cancer was detected. (Again, US readers, would your insurance let you do this?)
  • On top of that, she could get the reconstructive surgery. (Could you? And what would be the ramifications? Would you lose your insurance? Would your premiums go up?)

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.


4 comments on “It could have been me

  1. James
    May 17, 2013

    This was really interesting, Rachel. I had no idea that having the BRAC1 mutation meant an 80% chance of getting breast cancer! I definitely think it’s a good thing that individuals like Angelina Jolie are raising awareness about this as it is very serious. I did read that these mutations are fairly uncommon and account for only five to ten percent of all breast cancer cases in woman, so to an extent I can understand why testing might not be part of basic healthcare in the US. It would be more beneficial (in terms of numbers that is) to put your resources towards treating cancer and I would hope that the treatment of breast (or any) cancer is covered by basic health insurance in the US?

    I couldn’t help but relate what you’ve written to an earlier blog about baseball vs. soccer. The conclusion I came to after reading that blog-post was, “Bigger is better” which, from an outside perspective anyway, could be considered as the slogan for America. There is evidently a trade off between a mentality of “Bigger is better” and public services (like healthcare). Years of taxation and socialism in Europe has either removed that “Bigger” mentality or it is was never there to begin with and the compensation for our smaller stadiums (lifestyles) is free healthcare. It’s this trade off that makes me think that ObamaCare is like having your cake and eating it. You can’t have both. And the same applies for Europe, we cannot expect to have free healthcare, education etc. and still spend (borrow in the case of most European governments) like there’s no tomorrow. So either both Europe and the US are in transition (which I think is unikely) OR both are attempting to take the best aspects from both systems and trying to make them work. Here in the UK University fees have tripled and health care coverage (NHS) is shrinking, but we’re able to spend 8.2 billion on the Olympic games. Whereas measures like ObamaCare and US government intervention during the sub-prime crisis are somewhat Eurocentric. I realize that this was definitely not the point of your post, but I couldn’t help but make the comparison (and allow myself to procrastinate to avoid revision). 😛

  2. Margaret
    May 18, 2013

    Interesting, I just found out about Angelina yesterday, you are right she could of hid it for a while, but I think someone would of let the cat out of the bag, nothing is sacred with stars. It is sad that everyone does not have the choice to make. Living F.A.B.ulously on Purpose

  3. Delia @ Blog Formatting
    May 23, 2013

    Wow, thanks for sharing and bringing more awareness into the world, it is definitely needed.

  4. rachela
    May 26, 2013

    Wow, I never would have seen that connection between those two posts! But I suppose you’re right: often bigger is better in the US, but each person has to pay for their own “bigger” themselves. I think Obamacare is a good thing, but they’re going to have to give something up to pay for it, and Americans never want to do that. And they certainly don’t want any higher taxes, like we have here!
    You’re probably right; it would have gotten out eventually. But that just makes her that much smarter for controlling the information flow herself!
    Thanks back for reading my blog!

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This entry was posted on May 17, 2013 by in Current events, Family, Life in Holland and tagged , , .
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