I have always told them not to worry, but the truth is I carry a “faulty” gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer.
My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman.
Only a fraction of breast cancers result from an inherited gene mutation. Those with a defect in BRCA1 have a 65 percent risk of getting it, on average.
Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much I could. I made a decision to have a preventive double mastectomy.
Angelina Jolie is BRCA-1 positive.
I’ve been adjacent to this world for a couple of years now. My father tested positive for the gene mutation, and told my sister and I we needed to be tested. I was negative. But Dana tested positive.
She elected to have the surgeries. They were long and torturous but she’s come through the other side. She now does a lot of work with the advocacy group FORCE. My father also does work with them, fundraising and about genealogical research.
The thing you need to know, that is of the essence, is that last month the Supreme Court heard a case about the right of the lab that developed the test for the BRCA-1 mutation to hold a patent on the gene and charge whatever they want. The test can cost anywhere from $300 to $3000.
When Dana first found out, we all did a lot of research and reading. These were the ones I found most helpful:
Angelina Jolie’s op-ed will reach a lot of people and I’m very thankful for that, because it will make the choices so many women and men will have to face much less alien — but no less expensive.