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My Cancer Story, My Genes, My Information

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We all have cancer narratives. They change us. They shape how we view health, disease, life, death, relationships, and in my case, strip us of our innocence and childhood. Susan Sontag called illness "the nightside of life." I had been living in that nightside country long before I received the official passport.

I measure the calendar of life in cancer years. I was 13 when my mom was diagnosed with ovarian cancer (the same year as Gilda Radner); I was 21 when I learned my grandmother had been pulling her seafoam-green nightgown away from her chest to hide the chasm left behind by a disfiguring radical mastectomy; I was 27 when I discovered I carried a harmful BRCA1 mutation and was headed for a similar fate; I was 37 and pregnant when I received the death certificate in the mail confirming that my great aunt had died of carcinoma of both ovaries when she was the same age. And I was 38 when I was diagnosed with Stage II breast cancer.

My younger daughter, Greta, was three months old and my oldest, Eloise, was not even 2 when I felt a lump while breastfeeding. And so the cancer narrative begins for my own daughters.

Throughout my career as a filmmaker, I've been helping others tell their cancer stories for years. So now, I can't stop myself from playing out my daughters' stories.

I hear Greta as a teenager, "You weren't around for my entire first year of life. You couldn't nurse me, change me or pick me up in the night when I was crying." Although everyone tries to reassure me that she won't remember any of that first year, somewhere inside she will know what she missed -- and I'll know, too.

My worst nightmare -- the unplayable part of the tape -- is that I may have passed along the mutation to my girls -- and knowingly! I can't look in the mirror and accept that I've given them a legacy in which removing breasts and ovaries, at a time when they should be enjoying them, is the only option for preventing terrible cancers.

This is why, on June 13, 2013, I took action to change their cancer narratives -- and the narratives of young women just like them -- forever. June 13 was an auspicious day for me: a month after a double mastectomy, a prophylactic oophorectomy and a declaration by my oncologist that I was cancer free, I was celebrating my 39th birthday. On that same day, the Supreme Court ruled that the BRCA genes could no longer be patented -- meaning that they could not longer hold a monopoly on our genes, allowing for more affordable testing, second opinions and breast and ovarian cancer gene panels. Best birthday present ever.

Then I realized that an enormous injustice remained: Myriad Genetics, the company that held the patents on the BRCA genes, still controls a huge proprietary database of the sequence information from everyone it tested. And they are not sharing that potentially life-saving information. Instead, they're treating my DNA like a trade secret and getting in the way of scientists finding ways to prevent hereditary breast and ovarian cancer.

So on June 13, 2013, I joined a grassroots coalition to Free the Data! -- a consortium of policy makers, advocacy organizations, academic centers, industry and individuals who are working to fill the shameful information gap caused by the hoarding of crucial data about the mutations that can cause hereditary breast and ovarian cancer.

All of us have cancer narratives that shape our lives, and we have little choice about how those narratives begin. I know that -- and sadly, my daughters will know it, too. But we do have a choice about how we respond to those narratives. We can control our own information, and we can make it public and accessible to everyone who is working towards a better future for us and our children. This is my information. It's your information, or the information of someone dear to you. And it should be free.

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