I didn't want to play this cancer lottery anymore

The banging and clanging of the MRI machine is deafening, despite the headphones I’m wearing to drown out the sonic boom. I lie face down in the tube-shaped MRI apparatus as it looks for early signs of breast cancer, searching for secret manifestations in all my little cells. Nobody wants the MRI to find anything suspicious, making it nerve-racking and stressful—pretty much the complete opposite of lying leisurely on a massage table.

According to the Canadian Breast Cancer Foundation, one in nine women in this country (or 11 percent) will develop breast cancer in her lifetime. It estimates that in 2015, 25,000 women and 220 men will receive a breast cancer diagnosis, and 60 men and 5,000 women will die from breast cancer. That’s devastating. But the situation is improving. Breast cancer deaths have decreased by 44 percent since their peak in 1986, mostly thanks to earlier detection through regular mammography screening, advances in screening technology and improved treatments.

Suddenly, the blue contrast dye the MRI technician warned me about shoots up a vein in my arm like a tickling caterpillar, and I almost flinch—almost. But if I move, I have to start all over again. I meditate to stay still like a frog. This magical dye helps detect faulty cells and makes abnormalities appear more clearly.

I had breast MRIs and mammograms for two years before actually being tested for BRCA gene mutations. Mutations on the BRCA1 and BRCA2 genes can significantly increase your risk for breast and ovarian cancer because tumour suppressor proteins have been altered and DNA damage isn’t being properly repaired. The MRI takes about 30 minutes. It feels like three days.

But let’s backtrack a little. It was 2011. My son, Noah, was five, and I was 38. He’s my best little buddy, my love, my heart. I became a single mom shortly after his birth, and we do everything together. He was in senior kindergarten, and I had just gone back to university for a second degree. Everything felt under control. I had a plan to meet an awesome guy and have more children—at least one sibling for Noah, who had been begging for a brother or sister. I wanted four kids. But life doesn’t always go according to plan.

In October of that year, my mom was diagnosed with breast cancer. It was a rapid whirlwind of fear, sadness and a million questions my whole family was trying to answer. There were endless Google searches and conversations with friends whose moms, aunts and sisters had received similar diagnoses. Names of doctors, surgeons and genetics counsellors whizzed by. I experienced the kind of panic that starts in your heart and slips through your veins like cold blue contrast dye. I lay awake at night worrying about everything. My first concern was obviously for my mother, since she actually had cancer, but I couldn’t help but fear I would be next. I immediately thought of my little guy. What would happen to Noah if I died? Why did I procrastinate and not redo my will? Who would adopt my pets? My thoughts raced out of control.

Fortunately, my mom was one of the lucky ones. She will be four years cancer-free this October. My grandmother, who lived to 95, also survived breast cancer—twice. Two of my grandmother’s sisters on my mother’s side had breast cancer, too. After my mom was diagnosed, our family was told there could be a genetic mutation. Any child with a parent who carries the harmful BRCA1 or BRCA2 gene mutation has a 50 percent chance of inheriting it.

By early 2012, my mother was tested for the BRCA gene mutation, and we waited anxiously for a month for the results. Finally, I got her excited phone call. “I don’t have the mutation!” she shouted joyfully through happy tears. “So you don’t either!”

What a huge relief. I was beyond grateful. By that point, my mother was doing much better, the scary thoughts had gradually stopped creeping into my head late at night, and my life was back on track.

Had my BRCA journey ended there, that would have been pretty cool. But it turns out that men can also inherit and silently pass on the mutated gene. So to be safe, my father got tested, too. He had the BRCA2 gene mutation. I was in complete shock. How could this happen? I thought I was in the clear, yet here we go again—back to the 50/50 lottery game. After much consideration, I decided not to be tested for the mutated gene until I was prepared to undergo drastic surgery—or surgeries—to reduce my risk. The clinic, however, now treated me as if I was BRCA2 positive and signed me up for annual breast MRIs, mammograms and appointments with a breast specialist. But it’s like anything in life. Eventually it starts to feel normal. And my new normal was that I may have the gene—or I may not.

A bilateral salpingo-oophorectomy (BSO) involves the removal of a woman’s ovaries and Fallopian tubes, reducing her risk of developing ovarian cancer by up to 90 percent and breast cancer by up to 50 percent. It also puts her into forced menopause. No more periods. No more children. This would be my fate if I carried the mutated gene and chose this surgery over the possibility of getting ovarian cancer. So if I wanted to have more kids, it had to be soon. I upped the ante. I tried a few more dating websites. I went on more blind dates. But I kept meeting crazies. Should I sign myself up as a mail-order bride? Not to be dramatic, but time was running out.

I saw a fertility specialist and considered egg freezing last year. But it wasn’t for me—partly because it cost more than a down payment on the condo I couldn’t even afford, and my chances of having a baby from my frozen eggs were slim. But I learned a lot: about myself, about what’s important in life, and all about this lovely BRCA gene mutation and the misery it can bring. As time went by, the answer became clear. I had to find out if I carried it.

I met with a genetic counsellor to talk about how I could manage my breast and ovarian cancer risk if the test came back positive. With breast cancer, I could continue to undergo screening for early detection, take chemopreventive agents like Tamoxifen (a daily anti-estrogen pill that, if taken for five years, may prevent high-risk women from getting breast cancer) or have a preventative double mastectomy. I weighed the odds and decided not to go that route yet if my test was positive. I was being monitored closely for breast cancer, and the survival rate is very good with early detection.

My options for managing my ovarian cancer risk included regular screening for early detection; taking the birth control pill for several years, which may reduce the risk of developing ovarian cancer; or having the BSO surgery.

But the screening for ovarian cancer—an ultrasound and a CA-125 blood test—isn’t always reliable in identifying the cancer at an early enough stage to treat it. I know a mom my age who found out she carried the mutation and died from ovarian cancer, leaving behind a young daughter.

I was tested at the end of 2014. While I waited for the results, I thought of every worst- and best-case scenario—it was one of the longest months of my life. In the end, I tested positive for BRCA2. As soon as my genetics counsellor gave me the results, the room started spinning and I felt sick. Then I immediately asked her for the next available appointment for BSO surgery. I didn’t want to play this lottery anymore. Noah needed me to be his mom for a long time, and I wasn’t going to risk missing our life together for one more second.

I left and sat on the hospital steps, staring numbly at the trees and gloomy grey buildings. I had picked up bagels from my favourite café nearby, but didn’t feel like eating. I was scared of the surgery but more scared of getting ovarian cancer. I texted a few close friends the news, called my mother and went to pick up Noah from school.

On the night of my 42nd birthday, I was cuddling my little guy (who, at eight, wasn’t so little anymore) for our nightly routine. He snuggled up to me and said, “Mommy, you will always be my best friend.” I looked at him and said it out loud for the first time: “I’m not having any more kids. You will be my one and only.” I had finally accepted it. I would rather be alive with Noah than risk ovarian cancer by clinging to the hope of more biological children. “I know, Mommy,” Noah responded. “That’s OK. I like being your only one.” As I left his bedroom, he shouted, “Since I won’t have a brother or sister, can we adopt a dog instead?”

A month later, it was the day of my surgery. I felt strangely calm. Ironically, days earlier Angelina Jolie had gone public about her own surgery to remove her ovaries and Fallopian tubes because she carries the BRCA1 gene mutation. Like me, she wanted to ensure she didn’t get ovarian cancer so she could be there for her kids.

I had told Noah I was going to have something fixed on my insides to make me healthier. I compared it to his friends having their tonsils or adenoids removed. A good friend met me at the hospital that morning. I walked into the operating room in my blue hospital gown holding a photo of Noah. The nurse let me keep it next to me on the operating table. That’s the last thing I remember. When I woke up, the photo was still there.

In the days right afterwards, my dominant emotion was relief. I had no regrets at all. Two weeks later, with only four little scars to prove it had happened and a tiny bottle of purple hormone-replacement pills in my purse, I sat in my surgeon’s office telling jokes. He reviewed my pathology report from the cells and tissue that are routinely tested for cancer after surgery: totally normal. It seems I won the lottery after all.

I left the hospital—I might have been dancing—and picked up bagels from the same café. I sat on the same steps. I texted the same friends the good news, called my mother and went to pick up Noah from school.

Cancer facts: Ovarian

• Many ovarian cancers are diagnosed at an advanced stage, contributing to this form of cancer being the fifth leading cause of cancer-related deaths for women in North America.
• Many women don’t have symptoms until the cancer has already spread to other organs.

Breast

• Breast cancer remains the most common cancer in women.
• Approximately five to 10 percent of all breast cancers are hereditary.
• Breast cancer risk increases with age.
• Risk factors include having the BRCA1 or BRCA2 gene mutation, a strong family history of breast cancer and a personal history of breast cancer.
• Men can also get breast cancer, although the risk is quite low.

Numbers game:

• The statistics fluctuate because more information is constantly becoming available, but here’s the latest from the National Cancer Institute:
• 55-65% of women who inherit a harmful brca1 mutation will develop breast cancer by age 70.
• Around 45% of women who inherit a harmful brca2 mutation will develop breast cancer by age 70.
• 39% of women who inherit a harmful brca1 mutation will develop ovarian cancer by age 70.
• 17% of women who inherit a harmful brca2 mutation will develop ovarian cancer by age 70.

Genetic Testing 101:

• In Canada, genetic testing is done through hereditary familial cancer programs. You must be at least 18 to be tested.
• It takes about a month to get the test results.
• In addition to Ashkenazi Jews, the U.S National Cancer Institute also mentions other ethnic populations that are at a higher risk, including Norwegian, Dutch and Icelandic peoples.
• BRCA1 and BRCA2 gene mutations may increase the risk of other cancers, like Fallopian tube, pancreatic and, for men, prostate cancer.
• Being tested for the BRCA1 and BRCA2 genes involves giving a blood or saliva sample.
• In Canada, a healthcare professional (usually a genetic counsellor) determines if you’re eligible for BRCA1 and BRCA2 testing funded by your provincial healthcare, based on criteria like ethnic background and a family history of breast or ovarian cancer.

A family history to suggest high risk will include at least one of the following:

• You or a family member diagnosed with breast cancer before the age of 50 or ovarian cancer at any age.
• Two or more relatives on the same side of your family diagnosed with either breast or ovarian cancer.
• You or a family member diagnosed with breast and ovarian cancer or breast cancer in both breasts.
• A male relative diagnosed with breast cancer.
• Ashkenazi Jewish heritage (Jews of eastern European descent) with one or more relatives diagnosed with breast or ovarian cancer.
• A family member with a known gene mutation in BRCA1 or BRCA2

Source: Willow: breast & hereditary cancer support

A version of this article appeared in our October 2015 issue with the headline, “Cancer Countdown”, p. 30.

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