New data captures true numbers for metastatic breast cancer

In a world first, people with metastatic breast cancer are now being counted – at least in New South Wales. And work by the Cancer Institute New South Wales shows numbers have been wildly underestimated.

Previously, the national estimate was of 10,553 people living with the disease. This new, verified data shows 7,900 people (7,850 women and 50 men) with metastatic breast cancer in NSW alone.

For more than 25 years, Breast Cancer Network Australia has advocated for this outcome. We call on the National Cancer Data Alliance to help other states and territories adopt the NSW methodology and make metastatic count.

This work can be a national and international blueprint that enable other cancers to be counted as well.

This milestone reflects the power of advocacy driven by the voices of people living with metastatic breast cancer. Our Consumer Representatives have played a pivotal role in shaping this outcome.

Vicki Durston, BCNA Director of Policy, Advocacy & Support Services

Why it’s essential to ‘make metastatic count’

Metastatic breast cancer is treatable but not curable. As people live longer with metastatic breast cancer, it’s vital we know how to support them.

This data will help us understand:

how well they are living
how well treatments are working
how long they are living.

It will also guide future research.

As a medical oncologist in NSW, Dr Belinda Kiely understands the benefits of knowing how many people are living with metastatic breast cancer.

“The announcement today is vitally important for government, breast cancer clinicians and researchers, and patients, who finally feel recognised,” she said.

“I know my colleagues around Australia and globally would also benefit from access to information like this, so I hope the methods NSW have developed are rolled out nationally and globally.