Northern Ireland amongst the first in the world to produce estimates of people living with metastatic breast cancer

A landmark new study funded by Cancer Focus Northern Ireland published on Friday (9 Jan 2025) in JAMA Network Open estimates there are around 250 patients diagnosed with secondary (metastatic) breast cancer annually in Northern Ireland, and almost 1,000 patients currently living with the disease.

Metastatic breast cancer is an incurable disease that occurs when a cancer has spread from the breast to other parts of the body, such as the liver, lungs, brain, or bones. Until now, the numbers of patients with secondary breast cancer was unknown as they are not routinely counted in Cancer Registries worldwide. Last year, the Lancet Breast Cancer Commission highlighted the urgent need for data on metastatic breast cancer patients worldwide as patients may not be receiving optimal care and access to clinical research, leaving them feeling 'overlooked and forgotten.'

Led by Dr Damien Bennett, Director of the Northern Ireland Cancer Registry (NICR), analysts Sinéad Hawkins and Helen Mitchell, and other NICR staff, this ground-breaking study provides new information which can help to shape care and support services for people living with the disease in Northern Ireland.

In response to the study being released, Dr Damien Bennett explains: “Although we have good data on first breast cancers, we do not have the same data on secondary breast cancers, which come back after the first diagnosis. This was a real gap in our knowledge which has implications for patients. Now, for the first time in the UK, Ireland, and indeed in most parts of the world, we have produced estimates of new and existing cases of metastatic breast cancer for a whole country using population-based cancer registry data.”  

Figures are still unknown for the rest of the UK however, and indeed worldwide. Progress is being made through the NAoMe audit - National Audit of Metastatic (secondary) Breast Cancer (NAoMe) - following years of campaigning from charities like Breast Cancer Now, and individuals. The audit will not only give accurate figures, for the first time, on the number of people living with a diagnosis of secondary breast cancer in England and Wales, but will show evidence of where patterns of care may vary and help to guide improvements in cancer detection, treatment access and outcomes for patients. 

Cheryl from Belfast lives with secondary breast cancer. “I went to see my GP fifteen years ago after finding a lump. After an examination I was told initially that it was extremely unlikely to be cancer as I was too young (I was 42). It was however triple negative breast cancer, and by 2020 had spread to my lungs and spine. I was diagnosed with secondary breast cancer (SBC) and told I would be on palliative treatment for the rest of my life. Throughout my journey, I have experienced inequitable services not only because I live in Northern Ireland, but because I am a patient with secondary and not primary breast cancer. The news that there is now clear data for Northern Ireland gives me reassurances that the correct resources and care can be allocated for people living with this disease.” 

In Scotland, the Scottish Government has made a commitment in its 2023 Cancer Action Plan to also improve data collection on secondary breast cancer. Glasgow-based Make 2nds Count Support & Patient Engagement Manager Claire O’Donnell who was diagnosed with secondary breast cancer in 2016, said that the charity is seeing more and more people access their support services. “Our support group has grown by 46% in the last 12 months and we hear stories from people daily who have been newly diagnosed. Not knowing how many people are actually living with the disease is incredibly frustrating when planning our support strategy and services for the future.”  

Richard Spratt, Chief Executive of Cancer Focus NI said: “This research represents a pivotal moment for metastatic breast cancer patients. We are immensely proud to have funded a study that recognises these overlooked patients and which directly addresses a critical gap in cancer data and intelligence. This is only the first step towards transforming care and support for metastatic breast cancer patients across Northern Ireland.”

Samantha Dixon, Chief Executive for Make 2nds Count says: “Whilst it is welcoming to see this data for patients in Northern Ireland, the lack of accurate figures across the UK for people living with metastatic breast cancer is unacceptable. The lack of this data means that this group of people are not counted and it makes it incredibly difficult to know the true level of support that is needed from charities like us nationally, as well as allowing health services to plan for demand. We eagerly await the findings from the NAoMe audit so that we can ensure that we are there for everyone who needs us.”

A special thanks is documented in the research paper to patients Ann McBrien and Julie Anne Lillis who campaigned for metastatic breast cancer patients in Northern Ireland to be counted, and a clinical audit of their care carried out.

Metastatic breast cancer patient Ann McBrien, who previously worked as an accountant in the NHS, explained: “I was diagnosed with primary breast cancer in 2013, but in 2019 my cancer came back in my lungs as metastatic breast cancer. I was shocked to find that cancer reoccurrences are not identified in the Cancer Registry’s statistics. This leaves patients feeling invisible and left behind. Knowing the importance of data to plan and allocate the correct resources to treatments and care, I wanted to do something to address this information gap. Julie and I approached Cancer Focus NI and I am extremely grateful that the charity responded to our campaign and funded this important work.

“After lobbying for the audit, and working with the NI Cancer Registry on the findings, publication of this research gives me a great sense of achievement – we are no longer invisible. However, the advocacy work goes on. Determining the data was just the first step, the real focus is using the data to drive optimal outcomes for metastatic breast cancer patients. I am now asking the Department of Health to apply this data and develop a metastatic breast cancer pathway, with appropriate support for patients across Northern Ireland. I also hope that this research, which focuses on breast cancer, will lead the way for improvements in data for all cancer patients with metastatic disease.’’

Read more about the Cancer Focus Northern Ireland study here and the NAoMe audit here.