Ms Siobhan Gaynor
Patient Consultants Committee, Cancer Trials Ireland
Enhancing support and services for metastatic breast cancer patients begins with a simple, yet crucial, step: listening to their self-expressed needs.
According to the National Cancer Registry Ireland, in 2017–2019, approximately 3,507 women were diagnosed with invasive breast cancer annually in Ireland. Around 7% of these patients present with metastatic disease. Thanks to treatment advances, patients are living longer, but their needs are poorly understood. I experienced this firsthand when I was diagnosed with secondary breast cancer in 2020.
Patient-led metastatic breast cancer research
As a former research scientist, I used my experience as a patient to lead the Metastatic Breast Cancer survey — Ireland’s first-ever patient-led research to undergo rigorous ethics and scientific approval — with support from Cancer Trials Ireland.
I developed the study with a group of patients with the same disease alongside an interdisciplinary steering committee including medical and radiation oncologists, psychologists, palliative care professionals and trainee doctors.
Addressing a knowledge gap
Traditionally, resources for patients with breast cancer have focused on those newly diagnosed and, therefore, have potentially curable instances of the disease. In comparison, metastatic breast cancer is a challenging condition that is currently incurable.
The needs of people with metastatic breast cancer have not been adequately explored, creating a knowledge gap in services and supports. Additionally, in my experience, there are many aspects of care where broad assumptions of our needs are made, and many assumptions are simply untrue.
The survey explores many
aspects of patients’ journeys.
Giving patients a voice
Central to my research is a desire to understand what women with metastatic breast cancer want from the medical system and to hear, in their words, what unmet needs they experience. The survey explores many aspects of patients’ journeys — including discussions with medical teams, fertility issues, financial stresses, mental health, conversations with family and engaging with palliative care.
Improved support and services
My ambition is for the study findings to help oncologists, treatment teams and policymakers better understand the impact metastatic breast cancer has on patients’ lives in Ireland, leading to evidence-based changes in services, in line with our self-expressed needs. I would like to see the results utilised to guide the implementation of new health and social care resources to enhance care, with emphasis on psychosocial and palliative care needs.
International interest
Based on the findings, my co-investigator Professor Seamus O’Reilly and I, alongside other steering group members, submitted four abstracts to prestigious international cancer conferences. Two will be presented at ESMO and two at ASCO. This inclusion in two major conferences indicates a growing interest in the needs of metastatic breast cancer patients.
