Almost 1,000 patients living with metastatic breast cancer in Northern Ireland

A new study funded by Cancer Focus Northern Ireland estimates there are around 250 patients diagnosed with metastatic breast cancer annually here.

Metastatic breast cancer is incurable and occurs when breast cancer spreads to another part of the body such as the liver, lungs, brain, or bones. The average survival is two to three years for metastatic breast cancer patients.

We're hearing almost 1,000 patients are currently living with the disease here.

Crucially, patients with secondary breast cancer are not routinely counted in Cancer Registries worldwide, leaving this group of patients feeling overlooked and forgotten.

The research aligns with the international Lancet Breast Cancer Commission’s Call for Action to improve data on metastatic breast cancer patients. The Commission highlighted that because the number of people living with metastatic breast cancer is unknown, patients may not receive optimal care and access to clinical research.

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 on people living with the disease in Northern Ireland.

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.”

"We linked cancer registry data with hospital data and reviewed detailed information recorded on death records to identify cases. We estimate an average of 250 new metastatic breast cancer cases each year and just below 1,000 people living with the disease at the end of 2021. Importantly, we estimate the numbers of people living with metastatic breast cancer has increased over time, from 587 in 2009 to 911 in 2020, suggesting metastatic breast cancer patients are living longer, which may be related to new targeted treatments. However, while it is a great step forward to produce these estimates based on past records, there is no substitute for prospective recording and collection of cancer recurrences by cancer registries, which will require resources.”

Metastatic breast cancer patient Ann McBrien, who previously worked as an accountant in the NHS, said this study provides hope.

She said: ““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 supports 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.’’

You can hear more about this story at the top of the hour in our hourly bulletins: https://hellorayo.co.uk/cool-fm/