A new study is setting out to understand and address health inequalities and better support people with incurable metastatic breast cancer in Northern Ireland, thanks to funding from Breast Cancer Now.
The charity has awarded £383,600 to researchers at Queen’s University Belfast to deepen the understanding of inequalities people living with the incurable disease in Northern Ireland experience at different stages - from diagnosis through to treatment, care, and accessing support services.
Metastatic breast cancer, also known as secondary or stage 4 breast cancer, happens when breast cancer spreads to another part of the body. While it’s treatable, it can’t currently be cured.
The researchers will use data from the Northern Ireland Cancer Registry and interview people about their experiences and needs.
Thanks to earlier ground-breaking research, we know that approximately a thousand people are living with the disease in Northern Ireland. Northern Ireland was amongst one of the first countries in the world to produce estimated counts of all metastatic breast cancer patients, as cancer registries don’t routinely record these data.
The team at Queen’s University Belfast will use this unique dataset to look at how factors like education, income, disabilities and mental health impact the diagnosis, treatment and care of people with metastatic breast cancer. Then, working together with people living with the disease, their caregivers, healthcare professionals and patient advocacy groups, the team plan to develop a resource to address unmet needs and lessen the impact of health inequalities.
While this project is focused on data and people’s experiences in Northern Ireland, Breast Cancer Now hopes that learnings from the research can be applied to improve and tailor support for people living with metastatic breast cancer across the UK. The charity has been campaigning for better care and support for everyone living with metastatic breast cancer, as well as improvements to how data is collected, to ensure everyone can access services and support that best meet their needs.
Dr Charlene McShane, from Queen’s University Belfast, said: “We know so little about the health inequalities that surround metastatic breast cancer, whether people are diagnosed later or treated differently because of their age, gender, ethnicity, income or education. All of these factors, and more, will impact their breast cancer experience and outcomes. So we need to learn more to better support people with metastatic breast cancer.”
Dr Damien Bennett, Director of the Northern Ireland Cancer Registry, said: “This important research will help us better understand people with metastatic breast cancer - how they were diagnosed, how their cancer progressed and what challenges they face. Crucially, we will also link this information to other health and social data in Northern Ireland — such as mental health prescribing data, travel distance to healthcare and hospitals, income levels, educational levels and disabilities. We’ll explore whether certain groups experience differences in how they were diagnosed, treated and their outcomes. We’re excited to be using the data we have to help people with metastatic breast cancer, who often feel overlooked.”
Ann McBrien, patient advocate and co-researcher on this study said: “As a patient living with metastatic breast cancer, I am grateful to Breast Cancer Now for funding this research. It builds on the world-leading study by the Northern Ireland Cancer Registry published in early 2025 which reported estimates of the number of patients diagnosed with metastatic breast cancer annually, and total numbers living with the disease. This funding allows us to delve deeper into the existing dataset, pinpoint areas of inequality, look to how these inequalities can be addressed and survival outcomes improved.”
Dr Simon Vincent, chief scientific officer at Breast Cancer Now, said:
“We still need to answer many crucial research questions about metastatic breast cancer, and we’ve made it a top priority to build our understanding of the disease and make sure everyone affected by it receives the best care and support. This vital research will help to paint a picture of people’s experiences and needs in Northern Ireland, and explore how we can remove barriers to good quality care. We hope that what we learn from this project can be applied in other parts of the UK too, making a real difference for even more people living with metastatic breast cancer.”
Aoife McGuire, 31, from Newry, was diagnosed with de novo metastatic breast cancer (meaning the cancer had already spread by the time of diagnosis) in September 2024, just days after her daughter Éala’s first birthday. Aoife, who works as a financial consultant, had found a lump in her right breast at the beginning of August, and unfortunately tests revealed that the cancer had spread to her lymph nodes, as well as a small lesion in her liver.
Aoife says: “My beautiful daughter had just turned 1 year old, and suddenly it felt like our whole world had come crashing down. I had no family history, and have no genetic mutations. Receiving a secondary diagnosis while looking after a small child was a huge shock for me and my family.”
Aoife started chemotherapy, targeted therapy and endocrine therapy, and a year on her most recent scan has shown no evidence of active disease, meaning that while the cancer is still present it is responding to treatment and cancer cells are either dormant or undetectable on scans. She has been keeping active, spending time with family, and recently raised an amazing £18,900 through a coffee morning for Breast Cancer Now.
Aoife says: “Some days, or weeks are extremely tough when trying to navigate all of the emotions behind a secondary diagnosis, but I also have never been more grateful for the life I have and having time with my loved ones. I had good access to financial support, that helped me get through the winter and Christmas following my diagnosis, but I know that not everyone will get the support they need and deserve.
“I wouldn’t be here today, or feeling so healthy if it wasn’t for the amazing research that has been done. The treatments available for the type that I have, HER2-positive, have come a really long way. I am so passionate about supporting research because it’s what gives me hope, and hope is what drives me every single day.”
Breast Cancer Now is the research and support charity here for anyone affected by breast cancer. Call their free, confidential helpline on 0808 800 6000 to speak to their expert nurses, or find out more and donate at breastcancernow.org.