A bad habit of mine is surfing the net on my iPhone in bed right before going to sleep. Despite reading studies about how horrible this is, I do it anyway. In fact, I’m such a rebel that I read those exact studies late at night, on my phone, in bed. Last Tuesday night was no exception, but suddenly something on my Twitter feed from The New York Times made me sit up wide-awake. “Angelina Jolie Pitt: Diary of a Surgery” flashed on my little screen.
I’m sure by now many, if not all, of you have read Angelina’s inspiring story about her recent decision to surgically remove her ovaries and fallopian tubes. The article has been shared over and over again, and variations of it have appeared across media outlets worldwide. But that night I felt her article was directed right to me. Angelina was writing about “my” surgery—which is happening tomorrow. My surgery. Her surgery. Our surgery. Except I was hush-hush about mine, while she told the world.
In fact, only a handful of close friends even knew I carry the BRCA2 gene mutation. (Angelina has BRCA1, which carries slightly different risk factors than mine.) I’m a private person and it just wasn’t right for my Facebook status. But all around me were signs that if I spoke out too I could possibly help other women make informed decisions. This was Angelina’s second article; her first appeared in May 2013 when she wrote about breast cancer prevention.
A bit about me: I’m a 42-year-old single mom and I love my nine-year-old son, Noah. I’ve never had surgery and my only hospital stay was when I gave birth. My Grey’s Anatomy view of hospitals is probably inaccurate, as I doubt there will be a “McDreamy” in my operating room, although one can always hope.
But seriously, here’s what I know for sure: I’m more scared of getting ovarian cancer because of my BRCA gene mutation than the surgery I’m about to have to prevent it.
Last year, I met with the director of the Familial Breast Cancer Research Unit and senior scientist Dr. Steven Narod at Women’s College Hospital in Toronto. He’s world-renowned in the field of hereditary breast and ovarian cancer genetics. In fact, he’s the scientist who was instrumental in the discovery of the two gene mutations—BRCA1 and BRCA2. His team is responsible for discovering these mutations in the Ashkenazi-Jewish, French-Canadian and Bahamian populations. I fall into the first category; Angelina falls into the second.
I don’t like numbers and I hate statistics, but here are mine based on my particular mutation and history: If I do nothing, I have an estimated risk of developing breast cancer in the range of 30 to 40 percent, and my risk of developing ovarian/fallopian tube cancer is in the range of 20 percent. I learned from my genetics counsellor that there are multiple ways to manage breast cancer risk, such as screening for early detection, taking chemopreventive agents or preventive surgery. For ovarian cancer, my management options include screening for early detection, taking the pill or preventative surgery. But the screening for ovarian cancer, an ultrasound and a CA-125 blood test, hasn’t been proven to detect the cancer early enough.
To quote Angelina: “There is more than one way to deal with any health issue. The most important thing is to learn about the options and choose what is right for you personally.”
I also firmly believe in living a healthy lifestyle—I’m vegan, I don’t smoke and I exercise regularly. But I’m considered high-risk because there is a strong history of breast cancer in my family with four members affected and I’m an Ashkenazi Jew. High risk varies per individual as multiple factors are considered, such as the type of breast cancer the family member got, the age of the person at the time, and their relationship to you. There is a comprehensive checklist to go through to determine if a potential patient is high risk. Based on my personal family history I was, and I was admitted into the clinic.
As family members were tested for the gene mutation I found out there was a 50 percent chance I had the mutation too, but I waited another two years to be tested. I was already in the high-risk breast clinic and being monitored by expert doctors, including yearly breast MRIs and mammograms. I wasn’t ready to commit to surgery, so I waited to be tested. I didn’t want to know if I was a carrier if I wasn’t prepared to do something drastic about it.
When I finally got the test last October and it was positive, it didn’t come as much of a surprise. I had fully prepared myself for either scenario. Of course it wasn’t the result I hoped for, but I knew I would deal with it head on. I had done so much research by that point, considered so many different options, spoken to so many doctors and friends that I was ready to move forward. The day my genetics counselor told me I had the gene mutation I said I was ready to book the surgery to have my ovaries and tubes removed. Throughout the two years in the clinic and deciding if I should be tested for the gene or not, my amazing breast specialist was a huge support and instrumental in helping me make a decision I can live with, including this surgery.
Entering the high-risk clinic and eventually finding out I carry the gene mutation could have potentially saved my life. It’s a personal choice to decide to be tested for BRCA and should not be taken lightly. Other moms I know with potential BRCA risk chose to be tested immediately. I chose to wait until I was ready to do something major about it. Other women may choose to never be tested and remain in a high-risk screening program and take chemopreventive agents or alternative medicines. I believe it’s better to do something than nothing at all. In Angelina’s words, “Knowledge is power.”
I’ve decided against having a preventative double mastectomy for now. My surgery is going to reduce my risk of developing breast cancer by 50 percent and ovarian cancer by 90 percent or more. The downside to this surgery is it will put me into forced menopause and I won’t be able to have any more children.
A close friend of mine, Sarah Zitsow, is another mom who chose to spread awareness about BRCA gene mutations. Like Angelina, she has BRCA1. She has been my sounding board and go-to person for years, and she patiently answers my endless questions. I honestly don’t know if I would have been able to find out if I was a carrier and schedule my surgery if it wasn’t for her and what she successfully endured. In 2012 she had a preventative double mastectomy, and in 2011 she had her ovaries and tubes removed for preventative reasons as well. She shared her story on CTV News.
The third woman that was my inspiration to write this article, another mom, was an acquaintance. Elana Waldman and I only met a few times, but I followed her battle against ovarian cancer through social media and our mutual friends. Elana, also a carrier of the BRCA gene mutation, became a spokesperson and lead fundraisers to raise money for ovarian cancer research. I watched her inspiring video blogs for Chatelaine long before I knew I had the gene myself —her honesty and bravery often brought me to tears.
Sadly, Elana’s journey ended in 2013. Elana saved countless lives by speaking out and now her family, including her 11-year-old daughter Sydney, are continuing to raise awareness and research funds in her memory at Dance To Conquer Cancer and Elana’s Voice, an initiative with the Princess Margaret Cancer Foundation.
So why am I having my ovaries and tubes removed tomorrow? Because my little guy needs me to be his mom for a long time to come and it’s a role I will continuously fight for. We have hockey to play, animals to rescue, bikes to ride, stories to read, trips to take, music to dance to, laughing to do, memories to create and birthdays to celebrate, and I don’t want to miss a second of our lives together. He’s my best friend, my love, my soul. I so badly wanted him to have a brother or sister, especially when he was younger and begged me for a sibling. But I have dreams that one day I may adopt a child into our family. Anything is possible and nobody knows what the future brings. What I do know is we all have the power to surround ourselves with life-saving information. I will no longer remain silent about BRCA when strong, brave mothers like Angelina, Sarah and Elana have spoken up. I feel blessed I am able to write this.
Miriam Porter is a freelance writer and journalist. She writes about social justice, children’s rights, parenting, travel and veganism for newspapers, magazines and websites across North America. She can be found at miriamporter.ca and on Twitter: @MiriamRiverP.