Angelina Jolie and knowing our genetic risks

  • Article by: AMBER IWAN
  • Updated: May 21, 2013 - 9:13 PM

The cancer awareness raised by Jolie is helpful, but the answers aren't easy.

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Actress Angelina Jolie, left, and Brad Pitt at the 62 Berlin International Film Festival Berlinale in Berlin Monday, Feb. 13, 2012.

Photo: Andreas Rentz, Associated Press - Ap

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Last week, I decided I wanted a Reuben sandwich, and I was missing sauerkraut. For my Reubens, not just any sauerkraut will do. So I got in my car, strapped myself in, drove to the co-op that carries it and paid an ungodly amount for The Best Sauerkraut In The World. I got home, laid out my ingredients, and started drooling at the prospect of my delicious, most-craved Reuben.

And then I couldn’t open the jar.

Why am I telling you this story? Well, it’s simple, really. I couldn’t open the jar because decreased strength in one’s pectoral muscles is a side effect of breast reconstruction with expanders. Ten months ago, I couldn’t even have strapped myself into a car, or even have driven, for that matter. It’s little things like this that are the reality of life post-op — whether you’re me, or Angelina Jolie, or the thousands of other women who have opted for preventive mastectomy and reconstruction.

As a third-shifter, I am up at ungodly hours of the night, so imagine my surprise when a member of my online support group posted a commentary from the New York Times regarding medical choices when faced with a diagnosis of a BRCA genetic mutation, which elevates the risk of breast and ovarian cancers.

Imagine my further surprise when, halfway down the article, I read the phrase “my partner, Brad Pitt.” Like most of my sisters in my support group, I am simultaneously thrilled by the prospect of an A-list celebrity speaking up and lending awareness to hereditary cancer and dismayed by the public reception of said announcement. It wasn’t until I read subsequent headlines that I started getting really angry:

“I Have the Angie Gene.”

“I Had the Angelina Jolie Mastectomy.”

All this exposure is great. While breast cancer is definitely on the radar, ovarian cancer is sadly not as much, and hereditary exposure to either is lacking a lot of coverage. When I read headlines like these, I feel like my experience is trivialized. Yes, I was back to work within a couple of weeks, but that is not everyone’s story.

The truth is that mastectomy and reconstruction is not as easy as walking into a surgery center and walking out with a new set of breasts. In my personal journey, I’ve had to deal with: people questioning my decision; qualifying for medical leave; a two-night stay in hospital; and weeks worth of pain and discomfort, with lasting repercussions (see: jar of sauerkraut). This was all from a textbook-perfect procedure.

It’s not glamorous, it’s not A-list; the above is the nitty-gritty. The worst part is that the articles that offended me were actually well-thought-out and well-written. However, in a nation of people who read headlines and little else, I find myself wanting to take the time to remind people of a few things.

When you are BRCA-positive, you have a lot of very tough decisions to make. The decision to remove my breasts was easy for me, but it can be very hard for others. I still struggle with the idea of losing my ovaries and am desperately hoping that the studies on fallopian tube resection pan out.

Preventive mastectomy and oophorectomy are not the only options for prevention. Thousands of carriers of BRCA mutations, both female and male, have opted for surveillance options, including semiannual MRI and mammography, monitoring of the biomarker CA-125, and preventive Tamoxifen regimens. If you are not comfortable with the idea of removing your tissue, you do have options.

Because I chose to remove my breasts, I did not opt for self-mutilation, as one article accused. (I read this article and absolutely fumed!) Let me emphasize this: While clean eating and exercise are always a great idea, for carriers of BRCA mutations, no amount of juicing, raspberry ketones, homeopathic treatment or chemical avoidance will mitigate the fact that an integral biological pathway is broken.

I hope in days to come we’re able to keep the above in mind and spurn the sensational coverage we’re about to see. It’s not over yet!

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Amber Iwan, of Minneapolis, is a laboratory technician.

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