The Chatter About Jolie

My bloggy friends have really hit some important notes about Angelina Jolie’s prophylactic bilateral mastectomies, a decision she made public in a recent editorial in the New York Times.

Jackie called out those who were judging her decision.

Marie wrote a good explainer about the BRCA gene and why its presence might lead to such a choice.

Nancy took up the issue of gene patenting and how the prohibitive cost of the BRCA test limits women’s choices.

Philippa reminded us of the stark global inequities in breast cancer care, telling some stories from Sri Lanka and Timor.

What could I possibly have to add?

angelina_jolie_13

Photo Source: http://new-hdwallpaperz.blogspot.com/2013/02/angelina-jolie-wallpapers.html

Like my friends, I was asked by many to offer my opinion about Jolie’s choice. (I fully support it.) But since I have been hanging back on blogging, I was delighted to know so many smart and articulate people who cover the big issues when these Cultural Moments in Cancer happen.

Something struck me, though, amidst the media frenzy that has been less central to the ensuing conversation.

Women’s self-hating chatter about a radical surgery.

First there was a BRCA positive celebrity on an entertainment news program who talked about anticipating her prophylactic mastectomies. She told the interviewer laughingly:

It’s like a deluxe boob job!

Here is another exchange from a Facebook thread. Both women are educated –– Woman A is a doctor –– but the attitude is the same:

Woman A: I was tested!
Woman B: Were you really? It’s a little bit of a game changer once you realize you’re in any sort of high risk group, isn’t it?
Woman A: It was for me. I’m not willing to let a modifiable risk end my life. And, I’d have gotten new tatas…

Each time, my stomach dropped. This trivializes a body-altering operation.

I had a preventive mastectomy. A tumor presented in one breast, but I had to decide about whether to remove the healthy one as well. After genetic counseling, I was tested for the BRCA genes as well as a known mutation prevalent among Ashkenazi Jews. My genetic tests revealed no known genes, but the multifocal presentation of the tumor in my breast, my young age, and my ethnicity led four clinical oncologists to suspect some unknown genetic origin. Although I did not get a definitive risk like Jolie –– 87% is pretty clear cut in the medical world –– all these doctors recommended a prophylactic mastectomy.

I went ahead with the surgery. I got reconstruction, although mine was more complicated than Jolie’s because of the radiation I received as part of my treatment.

I have the new tatas that the women seem to joke about.

And you know what?

I really miss my old ones. We had a history together. I nursed three children with them. They fit my middle aged body. They felt much more than the ones I have now.

As I tend to do when something in CancerLand raises my ire, I posted the following on my Facebook page:

Just-stop-300x123

As you can see, this got a lot of “likes.”

On that thread, somebody generously shared the following:

Immediately prior to formal diagnosis (i.e., after the lump was discovered but before the second biopsy), I found the idea of a “deluxe boob job” (and tummy tuck, woo hoo!) to be very comforting. When talking to friends, that’s how I framed it, because breast cancer was much easier to talk about in those terms.

I really appreciated this honesty. It gave me insight into this “boob job” framing.

And here is what it reveals about our culture and breast cancer: It is more socially acceptable for us to dislike our bodies to the point of wanting to surgically alter them than it is to grieve the loss of identity and sensation that mastectomies require.

I notice that folks are not chatting as playfully about the oopherectomy (ovary removal) that Jolie plans to undergo. There is no soft-pedaling that operation. An oopherectomy means a sudden, surgical menopause. Friends of mine have described it, and it is not pretty. There is no femininity-preserving (or, to hear some women describe it, femininity-improving) reconstruction.

So my question is: When women with ambiguous cancer risks undergo preventive mastectomies, how much does their own culturally acceptable body-loathing play into that “choice”? Can we call it a choice when there are obviously such strong messages that downplay the loss and pain and overplay the body improvement aspect of this surgery?

For information on genetic risks and breast and ovarian cancer, please visit FORCE: Facing Our Risk of Cancer Empowered.


Brief Biography:

Breast Cancer Consortium member Ilana (“Lani”) Horn is an Associate Professor of mathematics Education at Vanderbilt University’s Peabody College. Her scholarship focuses on everyday learning and developing theoretical frameworks that account for social and emotional as well as psychological dimensions of human cognition. When she became a breast cancer patient in 2009, two years after losing her stepbrother to cancer, she became interested in documenting and analyzing the social and emotional aspects of cancer, treatment, and survivorship. On her blog, chemobabe.com, she writes about issues including caregiving, end of life issues, doctor-patient communication, cultural expectations of patients, with particular interests in implications for young adults and parents with cancer. She hopes to merge her scholarship and advocacy through studies of cancer patients’ learning in the future.

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