People with inherited mutations in genes like BRCA1 and BRCA2 have a higher risk of ovarian cancer (called “previvors”). Since there is no effective screening for this cancer, so doctors suggest the preventive removal of the ovaries and fallopian tubes, usually between the ages of 35 and 45. This surgery lowers ovarian cancer risk, but – in people who are not already in menopause – this surgery will cause early menopause. This can lead to serious health challenges. Many women face sudden menopause symptoms like hot flashes, mood changes, memory problems, and sexual difficulties. Early menopause also raises the risk of heart and bone disease. Fortunately, hormone replacement therapy (HRT) can help prevent these diseases, reduce symptoms, and improve life quality.

Sadly, many patients lack the support and information to make informed decisions about their preventive surgeries and post-operative care. There are significant care disparities in care across Canada. These are driven by differences in access to specialized services and provider practices. For example, the use of HRT is inconsistent. Despite strong evidence of its safety and benefits, many providers hesitate to prescribe it. Some patients are wrongly told that HRT is unsafe, causing unnecessary suffering and long-term health problems.

This project aims to improve care for those at high hereditary risk of ovarian cancer, both before and after surgery. The first goal is to create a comprehensive educational resource to help patients manage early menopause’s physical and emotional effects. This resource will cover six key areas: surgical preparation, menopause management, heart and bone health, exercise and lifestyle, mental health, and sexual wellness.

Additionally, the research team will provide targeted provider education across Canada. In each province, a team of at least one patient partner and one health care professional will deliver educational sessions at local hospitals, outlining the latest recommendations on prevention, surgery, and menopause care for hereditary ovarian cancer carriers. Importantly, patients will co-present these sessions to ensure providers understand what truly matters to those affected. This effort will create a national network of informed providers and empowered patients, helping to close care gaps and ensure consistent, compassionate support for previvors across the country.

Led by medical experts and patient partners, this project will help previvors make informed choices and improve their long-term health and quality of life. By addressing critical gaps in patient education and provider knowledge, this project will transform hereditary ovarian cancer prevention and survivorship care across Canada. All patients, regardless of where they live, will receive the information, support, and care they need to thrive.