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Tuesday, May 14, 2013

Thoughts on Angelina’s Decision

By Heather Millar

angelina jolie

Both my Twitter feed and my Facebook feed are crackling with discussion of a remarkable op-ed by Angelina Jolie published in the May 14 edition of The New York Times. In her essay, Jolie reveals that after 10 years of fighting, her mother died of ovarian cancer at age 56, that both she and her mother have a gene mutation that predisposes women to breast and ovarian cancer, that her doctors gave her an 87%  chance of developing breast cancer and a 50% chance of developing ovarian cancer. Jolie had a preventive double mastectomy earlier this year, and reconstructive surgery. She implies that she is also planning to have her ovaries removed.

Let’s unpack all this. First, here are the things to admire about Jolie’s actions and her opinion piece:

• Jolie has proved once again that she is not your average movie star-director. She’s thoughtful and intelligent; she seems to have written this op-ed herself. She seems committed to making the world a better place. She doesn’t shy away from the hard choices.

• For all her smarts, Jolie is a sex symbol. Now, she’s a sex symbol who’s had her breasts cut off and reconstructed. Apparently, society is still willing to consider her a beautiful woman. That’s awesome. Truly.

• Jolie did not let this become a tabloid circus. She broke the news herself in what is arguably the nation’s newspaper. Bravo.

• She’s got people talking about breast cancer. My husband tells me I live in a bubble, that not everyone is comfortable talking about breasts or cancer, let alone those two things together. OK, I’ll allow that that’s probably true. There’s still a lot of fear and ignorance out there, so thanks Ms. Jolie for starting this discussion.

I am not criticizing Jolie’s choice. Each person must face cancer in his or her own particular way. I would never presume to tell another patient what they should do. But here are the things that trouble me about this story, and about how Jolie’s actions might be interpreted.

• Jolie’s medical situation is as rare as her personal situation: How many of us have looks that compare with Jolie’s? Could we all emerge still gorgeous after something like this? Likewise, how many of us have her resources to seek out the absolutely best doctors available, whatever the cost? Only 2% of breast cancer patients have the BRCA-1 or BRCA-2 gene mutation, that figure rises to 10% for patients under 40.

You can find an excellent, but somewhat technical, overview of the BRCA mutations on the National Cancer Institute website, here and a shorter, simpler explanation on the WebMD website, here. Here’s the main take-away in my opinion: Jolie’s medical situation cannot be compared to 98% of breast cancer patients, perhaps even 99% because each woman with a BRCA mutation has a slightly different risk.

Jolie acknowledges this in her piece. She encourages women with a family history of breast or ovarian cancer to seek medical advice for their particular situation. I just hope that women do that, and don’t assume that Jolie’s situation is the same as theirs. Every cancer is different, people!

• It’s expensive to be tested for the BRCA mutations. I know. I am adopted, and know only the bare bones of my genetic heritage, so I was tested for the BRCA mutations not long after diagnosis. One company, Myriad Genetics, owns the patent on these genes and the test; people rightly question this, and the Supreme Court recently heard arguments about whether Myriad should be able to do this. Even though I have one of those “gold-plated” insurance polices through my husband’s employer, not all of the testing was covered. I ended up paying $800, the total cost was several thousand. Will Jolie’s revelation send hundreds of thousands to Myriad, seeking the test? I don’t know, but I’m not sure I could defend a run on such testing.

• A generation ago, the breast cancer treatment mantra was “a chance to cut is a chance to cure.” Radical, disfiguring mastectomies were the norm. Then, it turned out that removing women’s chest muscles and even their ribs didn’t necessarily lead to better outcomes. So now, women with small, localized cancers may have breast-conserving surgery. The term “lumpectomy” was originally coined by critics hoping to discredit the procedure. Will Jolie’s choice mean that many who might have had lumpectomies, choose mastectomy instead? I hope not. Cutting off breasts may absolutely save Jolie’s life, but it won’t necessarily save yours.

• Jolie rightly points to the progress that’s been made in reconstructive techniques. Today, it really is possible to have nipple-sparing surgery and reconstruction that looks almost as good as the real thing. But here’s a reality check: The “chest expanders” that make space for the implants hurt. (Think braces for your chest.) It doesn’t always work. I can’t count the number of times I’ve heard stories about infections around the expanders, or second, third and fourth surgeries to correct problems with the expanders or the implants. One cancer acquaintance, after three hospitalizations related to her reconstruction, just gave up. So we’ve made progress, but it’s not perfect.

• And here’s my main beef with Jolie’s piece: The idea of “taking control” of breast cancer. Her op-ed ends this way, “Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.”

This may have been true in Jolie’s case, that she could take control of her risk of breast cancer. That idea of  “taking control” is so appealing, especially to Americans. If only it were the dominant reality.

Here’s where I’m going to risk sounding like an angry breast cancer survivor: We are so, so far from “taking control” of breast cancer. If we had control of this disease, then Jolie would not have had to cut off her breasts.

After decades of research, and billions of dollars spent, and jillions of pink-ribboned marchers, we still don’t understand breast cancer, or any other cancer. We’re not exactly sure how to prevent it, and we certainly don’t know how to cure it consistently. Each year, some 458,000 women and men around the world die of breast cancer. The situation is similar for many other cancers.

It’s great if you can “take control” of your cancer. Alas, my experience of cancer, and that of most patients and survivors that I know, is that having your cells and genes go haywire is an object lesson in lack of control. Our understanding of cancer is still tragically incomplete. Our treatments are still, frankly, rather barbaric. And the outcomes of treatment are still rather random.

So, bravo Angelina Jolie for being so brave and so open about your situation. I hope that someday the rest of us will be able to take control like you did. But that day has yet to come.

Posted by: Heather Millar at 4:21 pm

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