Life after Primary Gynecological Cancer Treatment: A Guide for Survivors and Caregivers

Collaborators

Josee-Lyne Ethier

Debora Stark

Julie Francis

Kardi Kennedy

Study Co-investigators

Janet Giroux

Janet Jull

Christine Maheu

Stuart Peacock

What? While the end of treatment is often viewed as a celebratory milestone, many survivors describe this period as one of the most difficult. The structured support found during treatment often falls away, leaving survivors and their caregivers to navigate complex and ongoing challenges on their own. These may include physical changes, emotional distress, fear of cancer recurrence, shifts in identity and relationships, body image concerns, and uncertainty about how to resume everyday life.

Why? Recognizing these unmet needs, the research team developed a comprehensive, survivor-informed guide to help gynecological cancer survivors and their care partners understand what to expect, find supportive resources, and feel less alone as they move forward.

How? The project was co-led by a clinician-researcher and a gynecological cancer survivor, bringing together clinical expertise and lived experience from the outset. The research team gathered personal accounts from survivors and caregivers, alongside evidence and best practices, to understand the most pressing challenges faced during survivorship. Drawing from this input, they developed an initial draft of a post-treatment guide and then worked closely with survivors and caregivers to review and refine it. This collaborative process ensured that the content, tone, and recommendations were relevant, realistic, and sensitive to survivors’ needs.

Results: The final guide addresses a range of common concerns, including changes in physical and emotional health, intimacy and sexual well-being, body image, returning to work, and how to access additional support.

Impact of findings: The guide has been adopted and promoted by Ontario Health’s Cancer Care Ontario and is now used by clinicians and survivors across the province. By centering survivor voices and co-design principles, this work helps improve the quality of survivorship care and empowers survivors and caregivers to navigate life after cancer with greater confidence and support.

Funded By

CIHR Catalyst Grant: Patient-Oriented Research