People living with metastatic breast cancer call to be counted

Not many people know that people living with metastatic breast cancer in Australia are not consistently counted on our cancer registries.

If you are not counted you are not seen, which means you are ‘invisible’ when health service providers and policymakers plan cancer services and support.

More than 100 people living with metastatic breast cancer – which is treatable, not curable – took this call to be counted to Canberra.

Breast Cancer Network Australia (BCNA) and Parliamentary Friends of Women's Health held a panel discussion, Making Metastatic Breast Cancer Count, at Parliament House, Canberra, on Thursday 3 August – which was also streamed live.

The panel, co-hosted by MPs Peta Murphy and Bridget Archer, also heard from BCNA Consumer Representative Lisa Tobin from Perth who has been living with breast cancer for 23 years, and metastatic breast cancer for the past 11 years.

BCNA kicked off this advocacy campaign in October last year with an issues paper Making Metastatic Breast Cancer Count.

Ms Tobin told the gathering of politicians, health professionals and policy makers that people with metastatic cancer feel invisible and want to be counted.

'If data registries were tracking metastatic breast cancer when I was first diagnosed in 2012 it would have made a big difference to me,' Lisa says.

'If we can’t be counted, how can we be looked after properly?'

BCNA Director of Policy, Advocacy and Support Services Vicki Durston said it is not well known that people living with metastatic breast cancer in Australia are not counted on our cancer registries.

‘In a modern health system, they have a right to be,’ Ms Durston says.  

'We must have this visibility in order to plan for and invest in this growing population with complex and unmet needs.'

Peta Murphy MP, who is also living with metastatic breast cancer, is a strong supporter of BCNA's advocacy campaign to have people living with metastatic breast cancer counted and made visible.

'If we don't know how many people are living with metastatic breast cancer, how can we be sure that they are receiving the support and treatment they need? BCNA has been pushing for years for them to be counted, I'm determined to be part of making that happen,’ Peta Murphy MP.

The panel discussion follows a National Roundtable on metastatic breast cancer – hosted by BCNA – held in Canberra the previous day. The Roundtable was made up of key policy makers, cancer sector experts and people with breast cancer. Recommendations from the National Roundtable will be released later this year.

Read BCNA’s Making Metastatic Breast Cancer Count Issues Paper.

Peta Murphy MP died in December 2023; she was happy for us to continue to share this content and her story.