Groundbreaking research funded by Cancer Focus Northern Ireland, presenting the first estimates of people living with metastatic breast cancer in Northern Ireland, was unveiled today at Stormont to policymakers, charity representatives, and health officials, including Health Minister Mike Nesbitt. Organised by Cancer Focus NI, the event convened key stakeholders from the healthcare sector, patient advocacy groups, and government to explore strategies for addressing gaps in metastatic breast cancer care.
Welcoming over 40 people at the event, Richard Spratt, Chief Executive at Cancer Focus NI, expressed the charity’s pride at having funded the research and highlighted that the work has only just started, with more funding, research, and service provision needed to understand and meet the needs of local people living with metastatic breast cancer.
The event highlighted the urgent need for enhanced patient support and services, including the development of a dedicated Metastatic Breast Cancer (MBC) Pathway, including a Secondary Breast Cancer Nurse for all, and support for prospective recording of all metastatic cancers by the Northern Ireland Cancer Registry (NICR). Advocates also emphasised the importance of using this research as a model to improve data collection and services for other metastatic cancer patients.
Metastatic breast cancer is an incurable condition that develops when breast cancer spreads to other parts of the body, such as the liver, lungs, brain, or bones. On average, patients with metastatic breast cancer survive for two to three years. However, these patients are often overlooked, as they are not routinely recorded in Cancer Registries worldwide, leaving them feeling invisible and forgotten.
The study estimates that approximately 1,000 people are currently living with metastatic breast cancer in Northern Ireland, with around 250 new cases diagnosed annually. These findings provide a key new evidence-base to inform healthcare policy and service planning. Northern Ireland Cancer Registry (NICR) Director Dr. Damien Bennett, alongside his analyst colleagues Sinéad Hawkins and Helen Mitchell, presented the findings of the study to a packed audience at Parliament Buildings. Joined by patient advocate Ann McBrien and Breast Oncologist Dr. Kyle Crawford, the discussion underscored the need for action to ensure that patients receive the specialist care and support they need.
Dr. Bennett emphasised the significance of these findings, stating:
“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 linked with hospital data and detailed death record information.
“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.
“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. However, while producing these estimates based on past records is a great step forward, what is really needed is prospective recording and collection of cancer recurrences by cancer registries, which will require resources.”
Health Minister Mike Nesbitt attended the event:
“As Health Minister I continue to meet and listen to patients living with metastatic breast cancer. Advances in treatment mean many are now living longer and I welcome this research for providing valuable insight into the number of people affected in Northern Ireland.
"In the coming months, a new regional waiting list for breast cancer assessment will be introduced, ensuring women across NI can access the earliest available appointment. Additionally, the review of breast cancer services will focus on developing an optimal care pathway to improve equitable access for those with metastatic breast cancer.
"I remain committed to securing better outcomes for patients and their families by improving access to timely care, enhancing treatment pathways and ensuring every patient receives the support they need at every stage of their journey.”
A special thanks was 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 for an audit of their care to be carried out. Speaking at the event, Ann McBrien set out her cancer journey from being diagnosed with early-stage breast cancer in 2013, to having a recurrence in 2019 when the cancer came back and spread to her lungs, known as metastatic breast cancer.
Ann McBrien explained:
“I was shocked to find that cancer recurrences are not included in Cancer Registry statistics. This has implications for cancer research and cancer care, and it also leaves patients feeling invisible and left behind. As a former NHS accountant and knowing the importance of data to plan and allocate the right resources to treatments and care, I wanted to do something to address this crucial gap. My friend and fellow-patient, Julie Lillis and I organised a campaign which lobbied to have this issue both recognised and addressed. I am extremely grateful to Cancer Focus NI for responding to our request and funding this important audit research.
“Since funding approval in 2023, I have been heavily involved in the research as the patient representative on the research team and co-author of the final publication. From the initial campaign through to the actual research work, I truly believe patients can add value and bring forward real improvements in cancer care.
"The advocacy work goes on, with the focus now on using the data to drive optimal outcomes for metastatic breast cancer patients across Northern Ireland. I am now asking the Department of Health to develop and implement a metastatic breast cancer pathway, with appropriate supports for patients across Northern Ireland, particularly dedicated nursing support. Ultimately my wish is that this research, which focuses on breast cancer, will lead the way to improvements for all cancer patients with metastatic disease.’’
Dr. Kyle Crawford, a Breast Oncologist with the Belfast Trust, provided a clinical reflection on the research and said:
"This study represents a significant step forward in our understanding of metastatic breast cancer in Northern Ireland. For too long, these patients have been underrepresented in data collection, making it difficult to fully assess their needs and provide optimal care. By establishing accurate estimates of those living with metastatic breast cancer, we can better allocate resources, enhance patient support, and improve treatment pathways.
"Importantly, the findings indicate an increase in the number of people living with metastatic breast cancer over time, which likely reflects advances in treatment. However, this also reinforces the need for dedicated services, including specialist nursing support and structured care pathways, to ensure these patients receive the best possible care."