Miriam Porter of Toronto has always considered herself a private person. But the night before she had preventive surgery to remove her fallopian tubes and ovaries, she decided it was time to share her story. Inspired by a host of friends who have chosen to “go public” to raise awareness of ovarian cancer, she wrote about her love for her son and her desire to be with him as he grows up.
Over the past few years, Porter learned that ovarian cancer is often hereditary and that she had a high risk for both breast and ovarian cancer. Four relatives had breast cancer and she is also an Ashkenazi Jew, a group with a higher than usual proportion of carriers.
Research has proven that there is a strong link between BRCA1 and BRCA2 genetic mutations and ovarian cancer. There are likely other genetic elements as researchers probe the human genome further. If a first-degree relative – a mother, sister, daughter – has been diagnosed with ovarian cancer, the risk of developing cancer is much higher than for the general public. The statistics are clear. Carriers of a BRCA1/2 genetic mutation have up to a 40 per cent chance of developing cancer compared to only two per cent for the general population.
Historically, only about 23 per cent of women with ovarian cancer went for genetic testing. But as Dr. Marcus Bernardini, gynecologic oncologist at Princess Margaret Cancer Centre, says, “That is far too low. We believe there are between 10 and 15,000 families in Ontario who may be at risk and not know it.”
So Dr. Bernardini and his team of researchers and genetic counsellors have developed the Prevent Ovarian Cancer program to identify more women with a BRCA1/2 mutation and provide them with the counselling they need to make decisions about preventing ovarian cancer.
The Prevent Ovarian Cancer program is looking for women 18 years or older living in Ontario who have a first-degree relative (mother, daughter, sister) diagnosed with high grade serous cancer.
Researchers on the Prevent Ovarian Cancer program will be collecting some of this new information for research purposes. Using the www.preventovariancancer.ca website, participants will be asked to:
- Give permission to access the pathology report for the first-degree relative with ovarian cancer;
- Fill in a family history questionnaire;
- Provide a blood sample for genetic testing;
- Complete five psychosocial questionnaires;
- And undertake pre/post-genetic counselling.
The good news is that women can participate wherever they live. Blood samples can be provided at any Life Labs facility and genetic counselling is available by phone or face-to-face in most areas of the province. Because the program is in its very early stages, there is funding for 500 participants. If you know someone whose mother, sister or daughter has been diagnosed with ovarian cancer, don’t delay. Tell them about www.preventovariancancer.ca to see if they may be eligible to participate in the Prevent Ovarian Cancer program.For women like Miriam Porter, Angelina Jolie and many, many more, having the knowledge of their genetic status is powerful. Porter says, “I believe it is better to do something than nothing at all…What I do know is that we all have the power to surround ourselves with life-saving information. I will no longer remain silent.” For more information on the Prevent Ovarian Cancer program, visit www.preventovariancancer.ca or contact the program’s voice messaging system at 1-866-330-0180 or email firstname.lastname@example.org