As You Like It: ChoicesBy Joan Florek Schottenfeld
Last week the media was full of Angelina Jolie’s decision to undergo a double mastectomy. Jolie had lost her mother to breast cancer and so she decided to be tested to see if she carried the genetic mutation BRCA, which indicates a 60 percent risk of getting breast and possibly ovarian cancer. When she found out that she did indeed carry the mutation, she chose to undergo surgery. Jolie has six children and rightfully worries about what would happen to them without a mother. Her decision was, I’m sure, painful and achieved only after much thought, but I can’t help wishing that it had also been private.
It’s not that I don’t commend her bravery and her willingness to be so open about her decision, and I do understand that by going public she is serving as a role model. But she’s just too out of most of our leagues. She has been lauded as one of the most beautiful women in the world; she has more money than God and is married to a loyal partner who feels that she can do no wrong. She has choices that many of us cannot even contemplate. She can afford the $3,000 test that gives her those choices.
She has no worries about whether or not she can afford any of the operations or reconstructions. She will have the very best that money can buy. She has the leisure to spend months recuperating in luxurious settings. She already has six children and no worries about who will care for them when she is not feeling well. And even if Brad decides that it is too much for him and leaves, she will have the space and leisure to mend her spirit.
She does not live close to the line, counting every penny, with little support and no one to care for her or her children during months of painful procedures and possible life-threatening complications. She is not a young woman who has not had the chance to have children yet. She is not a middle-aged woman whose partner decides that he cannot live with a woman with no breasts. She is not a working class woman who can barely make it through the day even when everything is going right. Call me a curmudgeon, but Angelina Jolie is not someone who I can follow as a role model — I might as well follow the stars.
I am a middle-aged woman who is faced with Angelina’s questions, though. I’m wondering if I should get tested for the BRCA mutation. According to cancer.gov’s list of family history to consider, women who are of Ashkenazi Jewish descent and have a first degree relative who was diagnosed with breast cancer should consider getting tested. According to cancer.gov, I should be getting myself to a testing facility with all haste. The problem is I don’t have $3,000 sitting around for the fee. And in fact, Myriad, the company that holds the sole patent on BRCA testing, has just raised the fee another $1,000. Perhaps I can mortgage a slightly used dog? I know, I’m being flippant, but what else can I be when faced with my mortality?
According to Dr. Jennifer Ashton, who writes a blog for Good Morning America/Yahoo News, the number of women who test positive for the BRCA mutation is actually low:
In all, between 0.125 and 0.25 percent of women will test positive for the BRCA mutation, and it varies by ethnicity.
And though Jolie’s decision for radical surgery was on the front page, there are other routes back to health:
If you do test positive for BRCA, you have options, and you don’t necessarily have to go the Jolie route. Some women choose not to have surgery. Instead, they increase cancer surveillance with imaging tests. These include regular mammograms to test for breast cancer, and regular pelvic sonograms and blood-tests to watch for ovarian cancer … Other options include chemo-prevention, or taking certain medications to reduce cancer risk. For example, some women take a drug called tamoxifen to prevent breast cancer and others take birth-control pills to prevent ovarian cancer.
I’ve been doing a lot of thinking lately about how we find ourselves involved in yet another catch-up game when it comes to technology versus reality. We discover something wondrous but fail to think about the consequences. We have found a gene mutation that can cause breast cancer but have not figured out a way to “fix” the cancer short of slicing off breasts or carving out ovaries. There is something profoundly disturbing about that. What is the use of finding out that you are genetically predisposed to a disease if there isn’t a cure waiting for you at the end? We answer one question only to realize that it is merely the tip of the iceberg and it is the iceberg that sinks us.
It is good that breast cancer is something that we can discuss on the front lines of our media today. Jolie’s story is one chip in the wall of shame and silence that used to surround mastectomies and other “women’s problems.” But the next challenge is figuring out how the 99 percent of women in this world can benefit — the women on the front lines of life. We need to know that we can make choices about our health and not have them made for us, when it’s already too late.
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