It's been almost four years since I heard the words, "You have ovarian cancer."

As lucky as I have been with my treatment for ovarian cancer, I still worry about the possibility of recurrence. As another cancer survivor expressed so aptly, once you've had cancer, every ache, pain and unusual occurrence in your body is a possible sign of the return of cancer or the emergence of a new cancer. Many days, I'd rather not think or talk about ovarian cancer.

But today, on World Ovarian Cancer Day, I feel an obligation to talk about it.

The fact is that 1-2% of people with ovaries will develop ovarian cancer. While that may not sound like a lot, it adds up to about 3,000 new cases every year in Canada. More than half the people diagnosed in 2020—my "cohort"—won't be here in a year. That is frightening and sad. We can do better. We need to do better.

If I happen to find myself on the positive side of the statistics—one of the 3,000 diagnosed in 2020 who lives to see 2025 and beyond—it will be because of science. Research done decades ago to identify gene mutations in the breast cancer (BRCA) gene and to develop a maintenance drug specifically designed for people with a BRCA mutation is keeping my ovarian cancer at bay. That wasn't the case 25 years ago when, for example, Martin Short's wife, Nancy, had breast cancer. In 1997, when Nancy was diagnosed with and treated for early-stage breast cancer, "they hadn't yet developed what is known as the BRCA gene test, in which a patient's blood is analyzed for mutations in her BRCA1 and BRCA2 genes, which naturally suppress tumors," wrote Short in his autobiography, I Must Say. Had the test existed then, Short added, Nancy might have opted for surgery to reduce her risk of ovarian cancer. But she didn't know. Instead, she was diagnosed with ovarian cancer in 2007 and, sadly, died from the disease in 2010. And had the maintenance drug I've taken every day for the past three years been available in 2007 (it was approved for sale in the United States in 2014 and in Canada in 2016), Nancy might have been able to access an additional line of treatment.

What I learned from my own BRCA positive status and stories like that of Nancy is that when we are offered the chance to get genetic testing—either because we have been diagnosed with cancer ourselves or a first-degree blood relative has been found to carry a gene mutation that is known to cause cancer—we should take the opportunity to be tested. There is no screening test for ovarian cancer—as there is for other cancers, such as breast, cervical and colorectal—and the symptoms of ovarian cancer are so easily associated with other, less serious illnesses as to be overlooked. As a result, most cases of ovarian cancer are detected at late stages of the disease (my cancer was at Stage 3C), when it's harder to treat and more fatal. So, genetic testing is important for people who have that option.

Another area of science that shows promise as a means of preventing the most common form of ovarian cancer is something called an opportunistic salpingectomy. As I explained in my post Elective removal of fallopian tubes, based on a CBC story, reporter Stephanie Dubois stated that "Early research has shown an opportunistic salpingectomy—the removal of the fallopian tubes as an elective procedure—can help reduce the risk of ovarian cancer." Quoting Dr. Gillian Hanley, an assistant professor in the University of British Columbia's obstetrics and gynecology department, Dubois noted that the most common type of ovarian cancer is high-grade serous carcinoma (which is what I had), representing 70% of ovarian cancer cases and 90% of ovarian cancer deaths. Dubois added that this type of cancer originates primarily in the fallopian tubes (which is where my cancer started) and not on the surface of the ovaries. Hanley told Dubois that the procedure adds only about 10 minutes to a surgery when done as part of another gynecological operation (such as a C-section or surgery for endometriosis), which is currently the only way to access the surgery in Canada. Speaking before the House of Commons Standing Committee on Health two months ago, Dr. Hanley presented evidence that removing fallopian tubes significantly reduces the risk for ovarian cancer. In the approximately 26,000 people who had had an opportunistic salpingectomy between 2008 and 2017, they saw 0 cases of high-grade serous cancers. "This was statistically significantly lower than the number that we would have expected to see," Hanley noted.

But research is not enough. Increased awareness is also essential to reducing the risk of the disease. As Ovarian Cancer Canada noted in its recent news release about the creation of an Ovarian Cancer Prevention Task Force, "The most effective way to save lives from ovarian cancer is through prevention." It went on to say that an OCC study found that "68% of patients with a family history of ovarian cancer in a first degree relative received genetic testing after diagnosis. And 13% were not offered genetic testing at all. These are missed opportunities." OCC concludes that ''By maximizing the identification of people at increased genetic risk and maximizing the uptake of risk-reducing surgery, hundreds of lives could be saved every year."

Today, I listened to an Instagram Live chat between Aspira Women's Health CEO Nicole Sandford and World Ovarian Cancer Coalition CEO Clara MacKay in honour of World Ovarian Cancer Day. What struck me most were two statements by Clara. The first was that, when it comes to ovarian cancer, every country has something to learn and something to teach. The same could be said of individuals: we all have something to learn and something to teach. Like the majority of women (69%) who participated in WOCC's 2018 Every Woman Study, I had little to no knowledge of ovarian cancer before my diagnosis. I have learned a lot about ovarian cancer since 2020, and I am happy to add my voice to the many voices working to increase awareness of the disease, including as a member of the Board of Directors of Ovarian Cancer Canada.

One such voice is that of Diana Austin, who was diagnosed with Stage 4 ovarian cancer last June. Today, in recognition of World Ovarian Cancer Day, Diana spoke to Jeanne Armstrong of CBC's Information Morning Fredericton. She reiterated that "There is no screening test for ovarian cancer. It is almost always caught by accident. And, if it's caught by accident, that's why it's almost always caught at Stage 3 or Stage 4. It's frequently caught by emergency room doctors." This hit home for me, having been diagnosed with ovarian cancer by an emergency room doctor after going to the hospital with what was likely a gallbladder issue. Diana also spoke passionately about the value of opportunistic salpingectomy.

The other statement that Clara Mackay made today that I would highlight is an invitation to "join the movement." In particular, she encouraged people to sign a petition calling on the World Health Organization and other health leaders around the world to identify ovarian cancer as an urgent health priority. As I shared in World Cancer Day: spotlight on cervical cancer, in 2020, the World Health Organization approved a strategy to eliminate cervical cancer within this century. If the WHO can identify cervical cancer as a priority, why not ovarian cancer too?

Beyond availing yourself of genetic testing if offered, talking to your doctor about an opportunistic salpingectomy if you're having abdominal surgery and being aware of the symptoms of ovarian cancer, you can amplify messages about ovarian cancer (such as liking or sharing posts in social media), support efforts to draw attention to the disease (such as commenting on posts in social media), and contribute financially or in kind to initiatives that will enable more research to cure people who develop ovarian cancer and to prevent others from ever getting the disease.