In 2023, Siobhan Gaynor, a former research scientist and metastatic breast cancer (MBC) patient, initiated the first patient-led research project focused on MBC.
Driven by her own experience, Siobhan launched this initiative to highlight the significant gaps in services for MBC patients and to gain a deeper understanding of their specific needs. Her goal was to stress the importance of a specialised approach, with tailored support for metastatic breast cancer patients, as current care is largely centred on early-stage breast cancer, leaving many needs unmet.
With nearly 30% of early-stage breast cancer cases advancing to metastatic disease, the lack of focus on MBC is alarming. There is a pressing need for standardised medical care, specialised nurses trained in metastatic care, and greater attention to metastatic and advanced cancer in the National Cancer Strategy.
The survey results reveal that the needs of Irish MBC patients are vastly different from the services presently offered by the healthcare system. Approximately 1,700 people in Ireland are living with MBC, and these patients urgently need improved support and resources.
Internationally recognised research
The research has gained international recognition, with posters presented at major conferences, including ESMO Breast in Barcelona and ASCO in Chicago in 2024. This reflects the growing global interest in addressing the needs of this patient group.
Research findings presented at ASCO
Research findings presented at ESMO
Further information about the study:
This study was developed by a patient with metastatic breast cancer in conjunction with a cohort of patients with the same disease and an interdisciplinary steering committee comprised of medical and radiation oncologists, allied health professionals, palliative care staff and doctors in training. The co Chief – Investigators of this study are Ms. Siobhan Gaynor (Patient Consultant Committee, Cancer Trials Ireland) and Prof. Seamus O’Reilly (Medical Oncologist, Cork University Hospital and Vice-Clinical lead Cancer Trials Ireland).
Go here for a detailed description of the study’s design and evolution.
This study was conducted with Cancer Trials Ireland (http://www.cancertrials.ie) as part of their public patient involvement (PPI) initiative in cancer clinical research.
If you have any questions please feel free to contact the researchers Ms Siobhan Gaynor or Prof. Seamus O’Reilly via: mbcsurvey@cancertrials.ie
This study has obtained ethical approval from the RCSI Research Ethics Committee.
