I was diagnosed with primary breast cancer in May 2019 and then in October 2020, I was diagnosed with metastatic (secondary/advanced/Stage IV) breast cancer (MBC). I had started to experience back pain and fatigue. When I was diagnosed with primary breast cancer, and having worked in the field, my knowledge really helped to accept and understand it quite quickly.
However, metastatic cancer was completely different and it forced changes to my life. I had to medically retire after 31 years of working in medicines research and development, due to symptoms of the disease, and the fact that metastatic breast cancer is a disease that is life limiting. I volunteer on several cancer research committees and am also planning a few trips and making memories with family and friends. Most Stage IV cancers are incurable, although thanks to science and research we are now living longer and the challenge has moved to focus on quality of life aspects. I felt that a survey, with patient input from Irish Stage IV cancer patients was needed.
This MBC survey was launched via Cancer Trials Ireland in July 2023 and in less than 3 months 246 Irish MBC patients fully completed the online survey. The results of the survey have been published via 2 ESMO and 2 ASCO posters and a full journal publication in “The Breast Journal”. The MBC survey project was also recently awarded the Irish Cancer Society PPI project of 2025.
We have now set up an advanced cancer patients committee to capitalise on the survey results and to campaign for changes in Irish advanced cancer care. We are asking for a much-needed focus on advanced cancer in the next Irish Cancer Strategy, a commitment to collecting cancer recurrence data and a programme to develop National clinical guidelines for all metastatic cancers. We as Irish Advanced cancer patients are currently invisible with limited data to guide our care, through the results of the patient-led survey we have for the first time outlined priorities for our care and are simply asking for those to be implemented in the health care system across the island of Ireland.