* The author’s name has been changed
Flash back to almost three years ago, when I was 35 and read in the paper about a study by the Women’s College Research Institute in Toronto. It said people who inherit a harmful BRCA gene are at a much higher risk of developing cancer.
What caught my eye was that women like me’Jewish women of Ashkenazi descent’are at high risk for inheriting the gene. (Most of Canada’s Jews are of Ashkenazi’eastern European’descent: some 327,000 out of 370,000.) In the general population, I learned, the risk of developing breast cancer is 12 percent, according to the U.S. National Cancer Institute. Those with the BRCA gene are five times as likely to get cancer.
A friend I’ll call Lisa persuaded me to try to get into the study. She’s 44, a mom of two and also an Ashkenazi Jew. She had decided to be in the study. ‘Why wouldn’t you want to know?’ she said. I agreed.
Testing for BRCA
About two months later, I was asked to come in to have my blood drawn. Study participants were told the results would take a few months and that we’d get a letter if we were negative. Months passed and I didn’t think about it until Lisa dropped the bomb: She was positive. She decided to book an oophorectomy (ovarian removal) and hysterectomy (uterus removal) to remove these cancer-causing parts.
A few days after visiting Lisa as she recovered from surgery, and about four months after my own blood test, I got a call from the genetic counsellor. ‘We have the results,’ she told me. My test was positive.
I was in complete shock. I got the call three days into a new job. I couldn’t scream, cry or even confide in anyone’too scared that I’d be discriminated against, or labelled as ‘crazy’ for undergoing the test. I cannot remember ever feeling so alone.
The genetic counsellor set up a meeting for the next day. I remember calling my husband from my cellphone in the bathroom at work, tears flowing, heart racing, to share the news. While he was incredibly supportive, the reaction of my siblings, parents and friends was mixed. Not everyone understood what this meant, and why I would even want to know this kind of information. My close girlfriends supported me via phone calls, offers to babysit my kids and bring food, and so much more. I needed time to digest the news and decide on next steps. Would I go for surgery as Lisa had?
Should I get a mastectomy?
The negative stigma of being BRCA positive is a challenge. I didn’t want to use my name for this article, to protect my relatives who have chosen (and not chosen) to be tested, and for my kids, so they don’t worry about these cancers until they are grown.
Here’s what my genetic counsellor told me: I had a 60 to 70 percent chance of developing breast cancer by age 70, and a 20 to 40 percent chance of developing ovarian cancer. And because of my relatively young age, my probability of developing either cancer was significantly higher. Having an oophorectomy and a hysterectomy as Lisa had, I’d reduce my breast-cancer risk significantly, even with hormone replacement therapy. On top of that, I could also have a double mastectomy.
I decided I’d have the oophorectomy and hysterectomy, comforting myself by remembering I’d had awful pregnancies. Besides, my youngest was about to turn five and I couldn’t imagine going back to baby days’neither could my husband. But I held off on deciding whether to also go for the double mastectomy.
"I knew my decision was the right one"
As my surgical appointment approached with the specialist, I began to have pain that turned out to be a small tumour on my left ovary. The doctor assured me it was benign, but the finding cemented my choice. I began to stand taller, knowing I was being proactive.
But the upcoming surgery was still a scary prospect, and I wasn’t sleeping well. I joined online discussion groups, and met with my family doctor to ask more questions. Still, I knew my decision was the right one. Those close to me kept telling me I was ‘brave’ or ‘heroic’ to do this for my children and my future. I felt anything but brave.
A week before the surgery, my father surprised me when he said he was getting tested for BRCA. Only one parent needs to have the gene mutation to pass it to their child (and there’s a 50 percent chance of passing it along). My dad getting tested helped validate my need to know if I had the BRCA mutation, and gave me more strength.
I woke from surgery feeling pretty good; the pain was quite tolerable. Once I was settled in my room, I was given compression stockings to help prevent blood clots, and was topped up with pain meds. I slept and felt at peace for the first time in over a year. Those parts were gone! If I could have danced, I would have.
The week after I came home, the papers were full of stories about the study I’d been in. It turns out that of the approximately 2,000 women who were tested, 22 of us were BRCA positive. A young woman with the gene was quoted and I contacted her through Facebook, since we had so much in common. We exchanged messages and agreed to meet. The support of my friends and family continued; I think we were all relieved that I’d had the surgery.
Life after surgery
Five weeks later, I returned to work’sore and tired, but happy to be back. And at my post-op appointment, I learned my ovarian tumour was indeed benign and that all tissue removed was cancer-free. No further treatment would be required. Yippee!
As for my father, he, too, is BRCA positive. (He calls himself ‘The Mutant.’) He has elevated risks for melanoma as well as testicular, breast, pancreatic, stomach and prostate cancer. He is working hard to convince my siblings to get tested and has already had a colonoscopy; he is going to try harder to maintain a healthy lifestyle.
Life is pretty much back to normal now, and I wear my small scars with pride. I’ll be on estrogen replacement therapy until I’m in my mid to late 40s.
Even though I’ve connected with my new BRCA friend in person and see Lisa often, I’m no longer on the message boards, and I feel I’ve closed a chapter on a challenging part of my life. I am glad I had a chance to influence my future. I’ve pretty much decided I’ll get the double mastectomy in about a year, and meantime will be vigilant about getting my breasts checked.
I’m grateful for the study, as my dad and I have benefited from the knowledge we carry. I look forward to celebrating each day doing what I love with those who are special in my life. I hope by the time my kids are old enough to be tested, there’ll be a cure for cancer, and that they will never have to go through what I did.
Who is at risk for the BRCA Gene?
Besides Ashkenazi Jews, other ethnic and geographic populations around the world, such as Norwegians, Dutch and Icelanders, also have higher frequencies of specific BRCA mutations.
If you wish to be tested for the BRCA mutant gene, consult your healthcare provider for a referral to a local genetics clinic. Many provinces have specialized genetics clinics for familial breast and ovarian cancer. Criteria for testing vary by province. If you meet your province’s criteria, then the testing is covered by your provincial medicare plan. If you don’t, but would still like to be tested, you must pay for it yourself. For information about genetic testing clinics, consult the Canadian Association of Genetic Counsellors (CAGC) at cagc-accg.ca.
This article was originally titled "My Odds Weren’t Good," in the September 2010 issue of Best Health. Subscribe today to get the full Best Health experience’and never miss an issue!’and make sure to check out what’s new in the latest issue of Best Health.