What It's Really Like ... to Make the Decision to Have Your Ovaries Removed and a Double Mastectomy
The 41-year-old mom of four took a similar path as Angelina Jolie
Two years after undergoing a double mastectomy, following the news that she carries the BRCA1 gene mutation that elevates the risk of cancer, Angelina Jolie revealed in a New York Times op-ed that she had her ovaries and fallopian tubes removed. Jolie’s story is very similar to that of Caroline Presho from Hertfordshire, England. She’s also a mother (of four) who carries the gene mutation and elected to have a double mastectomy and an oophorectomy. She shares her personal journey with PEOPLE.
There are a lot of things I wish I had in common with Angelina Jolie, but unfortunately the one trait I do share with her is that we both carry the BRCA1 gene mutation. That means we both have a greater risk of breast cancer, we both have a greater risk of ovarian cancer and we both have a greater risk of a number of other cancers. So, when Angelina published an op-ed in the Times about making the decision to have her ovaries removed, two years after having a preventative double mastectomy, the story was familiar to me. Because I went through those two surgeries, too.
I had my ovaries removed in 2013, 11 months after my fourth child was born and four years after having a bilateral mastectomy with immediate reconstruction, just as Angelina had. “It is not easy to make these decisions,” she wrote in her piece – and she’s right. It was difficult and I worried surgery would change me as a person. But it was something I felt I had to do.
I agree with Angelina that “there is more than one way to deal with any health issue.” That “the most important thing is to learn about the options and choose what is right for you personally.” And for me, personally, the decision wasn’t made from one day to the next. Actually, it was a decision that was years in the making.
A decade ago, I had never even heard of the BRCA gene mutations. Then my aunt tested positive for the mutation following an ovarian cancer diagnosis in 2006 and she started bugging my sister and me about also getting tested. We ignored her advice at first, but my aunt didn’t give up. She’d write, she’d phone, she’d do anything to encourage us to go get checked out. So eventually, I brought it up with my general practitioner. His response? That I should go home and stop worrying about because he didn’t think I had the mutation.
I followed his advice. I focused on my aunt’s health and hoped she would get better, but I didn’t think about my risk or the mutation.
But then in 2007, she lost her battle with ovarian cancer. And shortly after her death, something else happened: My father passed away and a few days following his funeral, the phone rang in my family home. It was a genetic consultant, saying that my father had recently undergone testing for a BRCA mutation (men can be carriers). My dad had tested positive and when the consultant found out my dad had children, he wanted to let us know.
That’s when my thinking changed. My sister and I (I was 33 and she was 29 at the time) decided to finally get tested. It sounds strange, but we went into it just hoping we had the same result. I felt like we could get through anything together, but I knew I wouldn’t be able to cope if one of us had the gene and the other one didn’t.
When we got the news we had both tested positive, it was painful, but there was also a sense of relief that we were in the same boat. I remember us both saying “Yes!” when we got the diagnosis. The doctor looked at us like we were lunatics. We’re probably the only people to ever cheer when they discovered they have a gene mutation. I imagine it’s hard for anyone who hasn’t been in that situation to understand those feelings, but it’s the truth.
But even with the knowledge of the mutation, we couldn’t do much. In the U.K. at that time, you couldn’t get a mammogram until you were 35. So we were basically told to go away and come back in a few years. So that’s what we did.
The day I hit 35, I had my first mammogram, which found shadows on my breasts so I was scheduled for an ultrasound. It ended up being nothing, but the week waiting for the results was the longest of my life. I knew right then there was absolutely no way I could live like that. So in 2009, just two years after receiving my BRCA diagnosis, I had a bilateral mastectomy with immediate reconstruction, which is what Angelina also decided to do.
Eleven months later, after I had my fourth child, I had my ovaries removed. It was really difficult. I was so worried. I thought, My ovaries are my hormones. They regulate who I am. Was I going to become a fat, sweaty, grumpy, menopausal crazy woman?
Angelina’s op-ed was so wonderful to read because it was clear that she still felt feminine and beautiful. I would have loved to read something like this before my surgery. She put into words just how I felt about balancing that fear against the fear of getting cancer.
And while I stand by my decision, I strongly believe that people need to make the choice for themselves. For example, my sister hasn’t had either surgery; she prefers to use surveillance. I worry, but I have to respect her choice.
My decision to have a double mastectomy, and especially to have my ovaries removed was painful and hard, but it was also easy in some ways. I knew it was worth it. The procedure went smoothly and I had a quick recovery. I feel like a feminine woman. And I feel confident in what I’ve done. And like Angelina wrote, “I know my children will never have to say, ‘Mom died of ovarian cancer.'”
If you or someone you love is affected by the BRCA1 gene, visit Presho’s BRCA Umbrella, a support site for women with BRCA gene mutations.