EDMONTON – The women in Mary McDonald’s family are beautiful, bright and successful. But they’re also “cursed,” they say, with risky genes.
Mary’s mother died of ovarian cancer at age 55. Then Mary was diagnosed with breast cancer at age 40. Her doctor suggested genetic testing. That’s when she found out she’s a carrier for the BRCA1 gene mutation.
What you should know about Angelina Jolie’s BRCA-1 gene and ovarian cancer
Double mastectomy could save the lives of women with BRCA gene: study
Angelina Jolie reveals ovaries, fallopian tubes removed to prevent cancer
READ MORE: Double mastectomy could save lives of women with BRCA gene: study
“So that meant that it was a family affair,” said Mary. “Which to me was far more devastating than my breast cancer diagnosis.”
Mary had two daughters; Janine, who was 15 at the time, and Lianne, 27. Both were eventually tested, and both had the same mutation. Knowing they all had a much higher-than-average risk of breast or ovarian cancer, Mary had her remaining breast removed, a hysterectomy and oophorectomy. And she urged her daughters to have the same.
Both sisters delayed the preventative surgeries. Lianne got married, and wanted to wait until after her first baby, Abigail.
“But then she fell so in love with her little girl, she decided she wanted another (baby) before she went through all the surgeries,” said Mary. “Unfortunately that’s when she was diagnosed.”
Lianne died of breast cancer, at age 34. Abigail was three years old.
Janine says her big sister faced her final years courageously. Lianne spoke at conferences on hereditary cancer, and tried to raise awareness of genetic testing.
“(Lianne) was brave, she was bad ass,” said Janine. “She was my hero.”
“She made it very clear to me that all she wanted was for me to not get sick like she had.”
One of Lianne’s dying wishes was for Janine to have the surgeries, before it was too late. So, at age 24, Janine had a double mastectomy. And, following in her sister’s footsteps, the now-26-year-old is trying to educate other young people. She hosts fundraising events geared toward people her age for the HBOC Society, and is one of the faces of the Risky Genes campaign.
“What we want to do is get the message out so (young people) can take preventative measures, rather than get sick and have to deal with it after.”
WATCH: What you should know about Angelina Jolie’s BRCA1 gene and ovarian cancer
Genetic counsellor Cynthia Handford says about 10 per cent of cancers (including prostate) are hereditary, and most people don’t know if they’re a carrier or not. Knowing your family history is critical.
“(We look for) people who have a lot of family members with the same type of cancer on the same side of the family,” says Cynthia, “people who’ve got family members with cancer at a younger age than you would expect to see.”
Watch below: Local family brings attention to hereditary cancers
For example, according to the HBOC Society, nearly half of breast cancer patients under age 40 are hereditary cases. Having risky genes also means a higher chance of more than one cancer diagnosis. Cynthia feels genetic testing can be proactive; knowing your risk before the disease develops allows time for early screening, or even preventative surgeries. It can also tell women – and men – if their kids are at risk.
“I always tell people, ‘You can’t control what genes you inherited from your parents or what you passed on,’” said Cynthia.
“All you control is what you do with the information.”
If you want to see a genetic counsellor, you need a referral from your doctor. And if you want genetic testing, you will likely need a cancer survivor from your family to participate with you.
Mary knows most young people don’t want to hear about their risk for cancer. Her daughters didn’t. But she and Janine want to reach out, to prevent others from experiencing painful loss.
“I remember one conference,” said Mary.
“One woman stood up and said no woman in her family had ever lived past 40.”