Ovarian Cancer Canada and our network of researchers across Canada have built a national research engine that has led to new discoveries that help people with the disease live longer and better.
But we can’t stop now. The momentum we’ve created for ovarian cancer research is unlocking new insights that have the capability to change the face of this disease and give Canada recognition as a leader in pioneering transformative research and discoveries.
Maximizing our impact
Ovarian Cancer Canada’s research initiative began as the result of dedicated and collective advocacy efforts from people living with the disease, family members, researchers and advocates. From across the country, we successfully culminated in a historic $10 million investment in ovarian cancer research by the Government of Canada in 2019. This five-year funding has since grown with additional investments from provincial governments across the country, private sector partners, and dedicated donors.
Tremendous progress has been made in understanding this disease which has been under-researched for so many years. We have built a pipeline of discovery to address thousands of research questions with shortened timelines for new treatments.
We need to continue building on our momentum, taking a sustainable approach that supports long-term research investments to improve treatment options for those living with the disease.
We are ready to rise to the challenge. Real change is needed and there’s an urgency that underpins all our work and demands attention. We’ve come too far to stop or even slow down.
Research informs advocacy
Everyone deserves to live life to the fullest. This work provides evidence for points of advocacy to ensure that all people with ovarian cancer receive the best care, regardless of where they live in Canada.
Ovarian Cancer Canada’s The Every Woman Study™: Canadian Edition, is the most comprehensive study to date on the impact of ovarian cancer across the country. In the Fall of 2020, hundreds of participants shared their lived experience to help ensure that people with ovarian cancer across the country can benefit from the best available care, regardless of where they live.
The Every Woman Study™: Canada Edition, comprises a formal account of the experience of ovarian cancer in Canada, from the path to diagnosis to treatment and supportive care. These hard facts will be used to sharpen points of advocacy as we continue to press for equitable care.
- Read the manuscript: Understanding the experience of Canadians living with ovarian cancer through the Every Woman Study™ is published and now available online.
- Hear about the findings: Watch a recording of Ovarian Cancer Canada Speaker Series: An account of ovarian cancer in Canada, as told by Canadians.
Led by Ovarian Cancer Canada, the State of the Nation Clinical Audit, is a comprehensive evaluation of ovarian cancer care that collects information on incidence, prevalence, staging and survival. Data will be collected from five provinces to help identify gaps and opportunities in the system and key priorities in healthcare.
“We know there are differences in outcomes across our country that are not due to differences in biology or stage at diagnosis. The State of the Nation represents a tremendous opportunity to start to understand what is happening around diagnosis and treatment, and whether there are gaps we need to address to make sure all women get the care they need in the most timely way possible. Using our findings, we will be able to point to specific areas where we can intervene to improve care and ultimately outcomes for women in Canada.”
Dr. Robin Urquhart, Associate Professor, Department of Community Health and Epidemiology, Dalhousie University.
Stopping the disease before it starts
While everyone who is born with ovaries has some risk for ovarian cancer, identifying those at high risk and offering them preventive or risk-reducing options will have the greatest impact on saving lives.
Ovarian Cancer Canada’s vital work and laser sharp focus includes stopping the disease before it starts. An estimated one in five cases of ovarian cancer can be linked to genetic mutations. But knowledge of a mutation can inform steps towards preventive action, to stop ovarian cancer before it starts.
Ovarian Cancer Canada has conducted a cross-Canada survey of genetics counselors, gynecologic surgeons who perform risk-reducing surgeries, and women who have received genetic counseling and surgery. One-on-one interviews uncovered more about their unique experiences. Findings indicated major regional differences in the areas of testing, counseling, and surgery wait times. As well, the following gaps in the system were uncovered:
- Lack of discussion on family history of cancer with family doctors
- Patients either not accessing or receiving limited counseling
- Not enough specialized surgical clinics or information on specialized surgeons
- Women undergoing surgery past the recommended age
To address these gaps and improve care for those at higher risk of ovarian cancer, we established a task force. Composed of clinical experts and members of the Ovarian Cancer Canada staff team, the task force is focused on exploring surgical practices across Canada, and understanding the experiences of those who have received specialized care. The task force is collaborating to establish a community of practice where gynecologists and family doctors can develop expertise in the area of genetic mutations and risk-reducing gynecologic surgery.
- We are convening and partnering with clinicians and specialists to ensure that people at high risk of ovarian cancer can access preventive opportunities and follow-up care
- We are informing key audiences on prevention and risk reduction methods so they can consider their personal options
- We are providing resources to support self-advocacy and shining a light on important considerations related to genetic testing
- We are helping those at high risk for the disease weigh their options in determining what’s best for them
- We are identifying advocacy priorities as we continue to push for change
People like Sheree are speaking out
Six years ago, Sheree Yusishen was told that her family history of cancer – which includes ovarian and breast cancer – did not warrant genetic testing. But in Spring 2019, she learned she has a BRCA1 gene mutation, which carries increased risk for ovarian and breast cancers. This discovery came only after Sheree herself was diagnosed with breast cancer. Years later, she still hasn’t undergone risk-reducing surgery for ovarian cancer due most recently to scheduling delays caused by the pandemic. Sheree says she feels “like a ticking time bomb,” and she is still waiting. “I’m frustrated that I didn’t get genetic testing sooner. I would have moved forward with risk-reducing surgeries and maybe never would have gotten cancer.”
Help save lives
Ovarian Cancer Canada is leaving no stones left unturned as we search for improved treatments and advancements in research. The path ahead calls for added bench strength. We urgently need to press on, taking a sustainable approach that supports long-term research investments that improve treatment options for those living with the disease.
It will take hard work, but Ovarian Cancer Canada and our community is ready to rise to the challenge. Real change is needed and there’s an urgency that underpins all our work and demands attention that cannot be ignored. We’ve come too far to stop or even slow down.