Since last September, I have known that I carry the BRCA1 gene mutation. Since May 14, I have referred to it as the “Jolie gene.”
There’s nothing glamorous about this. But when The New York Times published Angelina Jolie’s op-ed about her preventative double mastectomy – her choice to play offence against the mutation – my obscure health issue suddenly became a trending topic.
And just like that, I knew I could no longer dismiss it as something I would figure out later.
It’s not to say I’ve been complacent. I’ve done the necessary early screening – a mammogram and two MRIs – and met with a doctor who specializes in familial breast cancer. Jolie was upfront about a prophylactic mastectomy and her indecision over the oophorectomy (removal of the ovaries). I wasn’t yet prepared to confront the prospect of surgery.
Like Jolie, I am considered high-risk (my mutation descends from my Ashkenazi Jewish ancestry). Medical journals typically put my risk of developing breast cancer somewhere between 56 and 85 per cent; the genetic counsellor in the Familial Breast Cancer Research Unit at Women’s College Hospital in Toronto narrowed my range to 60 to 70 per cent. I have a 20 to 40 per cent likelihood of ovarian cancer before age 70.
I know better than to reduce my reality to a bunch of numbers. Lightning could strike (the odds of that happening is one in 3,000) before an MRI detects a hint of a hypothetical lesion. Still, things don’t bode well.
I have been living in Paris where there are more than enough pleasurable distractions. Last August, within an hour of arriving home to Toronto for a visit, my parents said we needed to talk. I sensed this wasn’t going to be about restaurant reservations. There was something disconcerting about the way my father spoke: confident with a detectable quiver. He had experienced a minor health scare a few months earlier; I worried he was about to reveal an unfortunate follow-up. I was relieved to hear this wasn’t the case – and stunned to realize the focus was on me. I hadn’t heard of the BRCA gene mutation, never mind that it existed in my family. Once they got through with all the details, I knew I wanted the test. This was a crystal-ball opportunity; for better or worse, it would give me a decisive yes or no. After that, any decision would be mine to make.
I arrived at the Familial Breast Cancer Research Unit of Women’s College Hospital for the consultation and BRACAnalysis blood test on Aug. 14. Dr. Steven Narod, among the world’s foremost researchers on the BRCA1 and BRCA2 gene mutations (different genes, same functions) came in and stared at the chart with my family history. He squinted, then exclaimed, “There’s cancer everywhere here!”
Unlike Jolie, whose mother and aunt had “the faulty gene,” in my family it is my father who carries the mutation, as did his father. (Men don’t realize that this is an issue that can affect them as well, although their risk of developing male breast cancer is significantly lower). Both my aunts – his sisters – have had breast and other cancers and learned they carried the mutation. Various female members of my extended family have dealt with or died from breast or ovarian cancer. Given my family history, I qualified for the test under the Ministry of Health criteria. On the upside, this meant I wasn’t required to pay the actual cost, which can range anywhere between $400 and $4,000, depending on the extent of genetic testing. This was the only upside.
I had just returned from London Fashion Week when I received the e-mail from Narod’s genetic counsellor saying she could share the results with me via phone. She gave me one last chance to decline the information. Then she paused and proceeded with, “I’m sorry…”
It is no exaggeration to say my life changed at that moment. But rather than the blunt fear that comes with being diagnosed with cancer, I live with a gnawing concern.
I do not have children and this discovery has forced me to think about that, too. There’s a 50 per cent chance that any or all of my children could be born with the gene mutation. If I get my ovaries removed, I dramatically alter my options as far as being a parent is concerned.
Right now, I have parents and a sister whose unconditional love and support are exactly what I need as I get closer to – and ultimately face – this succession of decisions. Incidentally, my sister has a different father, so none of this is an issue for her. My father has expressed his regret that I inherited the faulty gene from him. I’m just thankful he’s come this far without an issue. Me, I don’t smoke, I exercise (most of the time) and I enjoy eating broccoli (mainly to offset the cake). With hereditary cancer, however, a healthy lifestyle might not be enough.
Here’s the critical question: If a mastectomy/oophorectomy appears to be my best chance for avoiding cancer, wouldn’t I rather endure it without the additional trauma of chemo and radiation? Narod told me this route was a “no-brainer.” But from what I’ve read, a mastectomy and the subsequent reconstruction is not nearly as simple as tissue-out, implants-in. Aesthetics aside, other complications – infections, restricted mobility, persistent pain, impaired sensation – are somewhat common. An oophorectomy would put me into menopause right away.
And yet I wonder whether the wait-and-see approach that I’ve been taking is too passive. Certainly it was for Jolie, plus all the other high profile women – Christina Appelgate, Sharon Osborne, Kathy Bates and Wanda Sykes – who have taken similar steps to substantially reduce their risks. The link between the gene and cancer was first discovered in the mid-1990s. Myriad Genetics, which holds a patent on the test, states on its website that one million people have “benefited” from the BRACAnalysis test. “Benefit” is a loaded word.
Narod estimates that 25 per cent of women who test positive for BRCA1 or BRCA2 opt for a preventative mastectomy and 75 per cent will have their ovaries removed. Of those, some will have surgery without delay; others will follow the monthly self exams and annual screening protocol.
I have not made up my mind. There is no easy way out. Once I figure out which choice affords me maximum self-preservation, I will be ready to move forward.
I’m an optimistic person and I am refusing to let the mutation take aim at my morale. I have my moments, though. I’ve noticed that I often drift into deliberation in the shower. There, I am most aware of my breasts – still healthy and unharmed. It’s where I can cry and not feel the tears.