From SHARE: Self-help for Women with Breast or Ovarian Cancer:

Angelina Jolie Is Bringing Attention To An Important Issue

By Christine Benjamin – May 15, 2013

Like everyone, I was riveted by Angelina Jolie’s admission yesterday that she had a prophylactic mastectomy after learning she was positive for BRCA1. As a breast cancer survivor with a BRCA1 mutation, I applaud her for bringing attention to this issue.

Breast and ovarian cancer have wreaked havoc on my family for three generations, leading to the deaths of many female relatives, whose children were left without mothers. Every woman in my family who was diagnosed with pre-menopausal breast or ovarian cancer died, except for me. That calculus didn’t begin to change until my family got genetic testing and started to have prophylactic mastectomies and oopherectomies.

Several of my family members were tested at my urging in 2000, when I was diagnosed with pre-menopausal breast cancer and decided to get tested myself. Like me, several tested positive for BRCA1, including my cousin Danielle. She planned to have a prophylactic mastectomy and oopherectomy but couldn’t manage to have the surgeries before she became pregnant with her third child. She was diagnosed with Stage IV breast cancer and didn’t survive the year.

I believe that she would probably be with us today if she had had those surgeries.

Certainly, I would prefer it if prophylactic mastectomies and oopherectomies were not the main options available for women at high risk of getting these diseases. I would like women to have more and better options; of course, I want to see an end to breast and ovarian cancer entirely. But for now, I’m happy that they are an option, at least for some, and my concern is that they be made more widely available for women who choose them, regardless of their economic status.

Not everyone can go to the Pink Lotus Center to get treated, as Jolie did. And as Jolie pointed out in her New York Times Op-Ed piece, a lot of women can’t even afford the genetic test. It costs over $3,000 and may not always be covered by insurance. And coverage for prophylactic mastectomies isn’t guaranteed by federal law; it varies from state to state.

In 2010, my twenty-six-year-old cousin tested positive for BRCA1. In the last couple of years, she had a prophylactic mastectomy and breast reconstruction. Her decision was based on the same goal as Jolie’s: to be around for her (future) children. She believed that given our family history, this was the best option for her, and she was very systematic about how she made it happen.

My cousin has a lot of knowledge garnered from family experience, but she also has resources, including a stable job and great health insurance. With Angelina Jolie’s story in the news, hopefully more people will have knowledge about this option as well. But I’d also like to see them have the same access as my cousin, and Angelina, to genetic information and counseling about their risk for these diseases, as well as prophylactic treatments, if that is the avenue they choose. Hopefully the decisions made will enable Angelina to be around a long time to care for her six children and my cousin to be around for the child she is expecting in September. Shouldn’t all women at high risk at least have the option to make such a decision?


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