From terminal to treatable – new report urges rethink of advanced breast cancer in Aotearoa New Zealand

New research published today by Breast Cancer Foundation NZ on World Cancer Day shows that despite gains in survival and treatment for Kiwis with advanced breast cancer (ABC), serious gaps in care remain. Among the key findings is the lack of a standardised, nationwide approach to detection and diagnosis, leaving too many patients with fewer treatment options and a poorer quality of life.

The report, titled Rethinking Advanced Breast Cancer: Evidence, experience and opportunities in Aotearoa New Zealand, finds that more than half (51%) of ABC diagnoses occur only after people start experiencing symptoms. This means early detection heavily relies on individuals recognising symptoms and the health system acting quickly when people seek help.

Inconsistent follow-up care after early breast cancer treatment is leading to delays in ABC diagnosis, increasing the chances of cancer already being too widespread by the time it’s found. One participant in the research spoke of how their cancer was so advanced when they finally got their diagnosis, they were at risk of being confined to a wheelchair.

One of the most concerning findings is that 18% of people with ABC had no record of receiving treatment. This suggests nearly one in five patients may have missed an opportunity to extend their lives. While reasons vary, the report suggests late diagnosis may play a role, with some people diagnosed when treatment is less likely to be effective.

Another participant described feeling that people with ABC are often written off by the system: “You are waiting to die in most medical people’s eyes, so why bother doing more for you?”

“Advanced breast cancer doesn’t have to be an immediately terminal diagnosis”, says Mehdi Shahbazpour, Breast Cancer Foundation NZ’s head of research & strategic programmes.

“While it can’t usually be cured, earlier diagnosis, timely access to care, and treatment breakthroughs mean more people could live for years with ABC as a manageable, chronic condition. But there’s much more our health system needs to do to make this possible.”

Breast Cancer Foundation NZ is urging health decision-makers to introduce a nationally consistent detection pathway for ABC and to move to personalised, risk-based follow-up care after early breast cancer treatment. These changes, the report emphasises, are critical to identifying ABC earlier and expanding treatment options to give patients a better chance of keeping the disease under control.

“Medical advances are changing the trajectory of ABC, but they must be matched by a shift in mindset – our health system needs to recognise ABC as a condition that requires long-term, proactive care. This is about giving people hope not just to survive, but to live well, with the right care at the right time,” Mehdi adds.

More than 350 people are diagnosed with ABC in New Zealand every year. Also known as metastatic, stage 4 or secondary breast cancer, ABC is where breast cancer has spread to other parts of the body such as the liver, lungs or brain. Most ABC cases happen when early breast cancer comes back. Even after initial treatment, some cancer cells can stay hidden and later spread, which is why careful follow-up is so important. Although it can’t typically be cured, innovative new treatments can help people with ABC live for many years after their diagnosis.