Spot the difference : recognizing risks for cancer in the experiences of normal aging

Background: Endometrial cancer (EC) is the most diagnosed gynecologic malignancy in the developed world, with 417,367 new cases and 97,370 deaths in 2020. If detected while still confined to the uterus, patients with EC can expect an excellent 5-year survival rate of 96%. Conversely, only 20% of patients survive an advanced stage diagnosis. This emphasizes the need for early detection of EC, beginning with recognition of early signs and symptoms, especially among those at elevated risk for EC or who experience disparities in care and diagnosis. Objective: To conduct a multipronged investigation of knowledge and awareness of EC, specifically recognition of associated symptoms and risk factors, and compare and contrast findings from a provincial study to the literature. Methods: A scoping review was conducted to identify and synthesize literature related to symptom and risk factor recognition for EC. Socio-demographic characteristics were taken into consideration to identify trends or characteristics that may influence recognition and knowledge. Next, a series of semi-structured qualitative interviews were undertaken to evaluate the experiences of a diverse group of women in British Columbia going through reproductive aging or who have faced an EC diagnosis to identify gaps in their ability to distinguish between normal aging and potential causes for concern. Participants were invited to a virtual workshop, where we further discussed and ranked strategies for improving awareness of EC. Results: Participants demonstrated poor awareness and knowledge of EC, specifically associated risk factors and symptoms. This trend was also observed in the literature. Awareness of abnormal uterine bleeding, which is often the first presenting symptom of EC, was also poor in both methodologies. Misconceptions about abnormal bleeding and reproductive health can be linked back to limited understanding of perimenopause, menopause, and menstruation. Furthermore, women often confuse risk factors of other gynecologic cancers, particularly those related to sexual behaviors, as risk factors for EC. Poor awareness of perimenopause and EC played a role in delaying the medical investigation of symptoms. Conclusion: Capturing and understanding knowledge gaps and experiences leading to delays in diagnosis is needed to inform future knowledge interventions to improve awareness of EC.