Member of the Northern Ireland Cancer Research Consumer Forum
Ann’s story is available on Cancer Focus Northern Ireland website.
Click here: Policy & Advocacy | Cancer Focus NI
From early diagnosis into a life-changing reality.
Ann McBrien was diagnosed with early-stage breast cancer in 2013 at the age of fifty through the breast screening programme. The tumour was extremely small. She underwent breast-conserving surgery, radiotherapy, and endocrine treatment. Five years on from the original diagnosis Ann was discharged and considered cured. However, just two months later, after an MRI for shoulder pain, she was diagnosed with metastatic breast cancer. “It was an incredibly traumatic time,” she recalls. “My world was turned upside down as I tried to understand what it meant to have a terminal illness.”
Like many patients, Ann began searching for information to help make sense of her diagnosis and find some hope for the future. Instead, she discovered something startling. People who have a cancer recurrence are not counted in cancer statistics or registries. “In today’s world we count everything, from money to calories to the steps we take every day,” she says. “So, it was hard to believe that people like me simply weren’t counted.” As a former Health Trust accountant, Ann immediately understood the implications. “If you’re not counted, you’re not recognised. And if you’re not recognised, services, support
and research aren’t properly resourced.”
Turning advocacy into research
Determined to change that, Ann began campaigning alongside fellow patient advocate Julie Lillis. Their message was clear: data could change lives. The breakthrough came when they met with Cancer Focus Northern Ireland. The charity’s CEO,
Richard Spratt, listened carefully to their concerns and recognised the significance of the issue. The charity helped provide a platform for their voices and, crucially, secured funding for the research to address the data gap. The study was carried out by the Northern Ireland Cancer Registry and involved analysing thousands of records to estimate the number of people living with metastatic breast cancer and those newly diagnosed each year. For Ann, being involved in the research team was deeply meaningful. “It meant the patient voice was at the centre of the work,” she says. Researchers worked tirelessly, manually reviewing records to produce the data. “They understood how important this research was, not just for me, but for every patient living with metastatic breast cancer.” The results were published in JAMA Network Open – a leading international medical journal, placing Northern Ireland among the first countries in the world to produce estimates of the number of people living with metastatic breast cancer. But the most important outcome was not the publication. It was the platform for change
that the research created.