I stood under grey skies outside Vancouver General Hospital last Thursday, watching Brenda Leipsic’s face as she described the day her doctor told her she was cancer-free. Five years after her diagnosis with late-stage ovarian cancer, what should have been purely celebratory instead left her with lingering questions about what comes next.
“I felt abandoned,” she told me, adjusting her blue scarf against the coastal wind. “My oncologist basically said ‘congratulations’ and ‘goodbye.’ There was no roadmap for survivorship.”
Leipsic’s experience mirrors that of nearly one million Canadians currently living as cancer survivors. While our healthcare system has protocols for diagnosis and treatment, the aftermath often leaves survivors navigating complex health challenges alone. This gap in care has inspired Leipsic to create something unprecedented in Canada: the Canadian Cancer Survivor Registry.
Launched this month, the registry aims to track long-term health outcomes of cancer survivors across the country. The initiative represents the first national attempt to systematically document and address the unique health needs that emerge after cancer treatment ends.
“Cancer isn’t just something you have and then it’s over,” Leipsic explained as we walked through the hospital garden where she spent countless hours during her treatment. “The physical and emotional aftereffects can last decades. Some survivors develop heart problems from chemotherapy. Others struggle with cognitive issues we call ‘chemo brain.’ Many face anxiety about recurrence that never fully disappears.”
The registry will collect data on these survivorship issues through voluntary enrollment, asking participants to complete regular health questionnaires and, when possible, participate in research studies aimed at improving survivor care.
Dr. Karen Gelmon, medical oncologist at BC Cancer and supporter of the registry initiative, believes this data collection is long overdue. “We’ve made remarkable progress in cancer treatments, resulting in more survivors than ever before,” she told me during a phone interview. “But our healthcare system hasn’t adequately evolved to address survivorship needs. This registry will help us understand patterns of late effects and develop evidence-based protocols for follow-up care.”
The concept gained traction after researchers at Princess Margaret Cancer Centre in Toronto published findings showing that 65% of Canadian cancer survivors report at least one unmet healthcare need after completing treatment. According to their study in the Canadian Medical Association Journal, these needs range from physical rehabilitation to mental health support and financial counseling.
When I visited the registry’s modest office space in downtown Vancouver, I found Leipsic working alongside three volunteers—all cancer survivors themselves—entering data from their first hundred participants. The walls were covered with handwritten notes from survivors sharing their post-cancer challenges.
One note from a breast cancer survivor read: “Six years cancer-free but dealing with lymphedema, early menopause, and bone density loss from treatments. My family doctor doesn’t know how to help me with these issues.”
This knowledge gap among primary care physicians presents another challenge the registry hopes to address. By collecting and analyzing survivor data, Leipsic’s team plans to develop educational resources for healthcare providers.
“Most family doctors receive minimal training on cancer survivorship issues,” explained Dr. Samantha Taylor, a family physician who serves on the registry’s advisory board. “When a cancer survivor comes to me with symptoms that might be related to their past treatment, I often have to research on the spot or refer them back to oncology, which isn’t always necessary or efficient.”
The registry arrives at a critical moment. Statistics Canada projects the number of cancer survivors will increase by approximately 40% over the next decade as treatments continue to improve. Without structured survivorship care, our healthcare system risks being overwhelmed by complex cases it isn’t designed to handle.
Walking through Stanley Park later that afternoon, Leipsic pointed toward the mountains across the harbor. “I never thought I’d see another spring,” she said quietly. “Now I’m planning for a future I didn’t think I’d have. But that future should include proper medical support for all of us who’ve been through cancer.”
The initiative has secured initial funding through a combination of private donations and a grant from the Canadian Cancer Society, but sustainable funding remains a challenge. Leipsic hopes provincial health authorities will eventually recognize the registry’s value and provide operational support.
Beyond data collection, the registry has already created an informal community among participants. Monthly virtual meetups allow survivors to share resources and strategies for navigating post-cancer life.
“After treatment, many of us feel dropped from a system that previously monitored us intensively,” said Michael Weymouth, a colorectal cancer survivor who joined the registry’s first cohort. “Suddenly you’re on your own, wondering if that new pain is normal aging or something more sinister. Being part of this registry helps me feel less isolated in those moments of worry.”
As Canada’s healthcare system continues to face resource constraints, innovations like Leipsic’s registry represent a grassroots approach to filling critical gaps in care. By harnessing the lived experiences of survivors themselves, the initiative brings patient voices directly into research and policy development.
Standing at the seawall as the evening light softened over English Bay, Leipsic shared her vision for the registry’s future: “In five years, I hope every Canadian cancer patient receives a survivorship care plan at the end of their treatment, with clear guidelines for monitoring and managing long-term effects. No one should feel abandoned after surviving cancer.”
For those interested in participating in the registry or learning more about cancer survivorship resources, information is available through provincial cancer agencies or the Canadian Cancer Society’s support services.
In the meantime, Leipsic continues collecting stories and data—building the foundation for better survivorship care one survivor at a time.
