Until we capture exhaustive data on treatments and outcomes, more than 10,500 Australians living with metastatic breast cancer will remain largely forgotten. Partnerships between researchers and consumers are critical to achieving improved cancer outcomes.
Delegates saw these principles in action in a plenary session on metastatic breast cancer co-Chaired by Dr Andrea Smith at the Clinical Oncology Society of Australia’s (COSA) 50th Annual Scientific Meeting (ASM) in Melbourne where four trained Consumer Representatives from Breast Cancer Network Australia (BCNA) presented and chaired sessions alongside clinicians and researchers.
Metastatic, or advanced, breast cancer is breast cancer that has spread beyond the breast and local lymph nodes to other parts of the body. While it is treatable, metastatic breast cancer is incurable and life-limiting.
Alongside co-chair Dr Belinda Yeo, Dr Smith’s session featured Dr Shom Goel, Dr Stephen Luen, A/Prof Steven David and Kerry Patford speaking on pipeline drugs, how new developments in genomics might change treatment, and the role of dedicated metastatic breast care nurses.
The need for improvements to Australia’s cancer data – and specifically the need to consistently capture staging and recurrence data for metastatic breast cancer in all our cancer registries – was a central theme at the Plenary: metastatic breast cancer.
“This current gap in cancer registry data has been recognised in Australia for many years. We urgently need staging and recurrence data to achieve better care and outcomes for people with metastatic breast cancer,” Dr Smith said.
That need was addressed by BCNA’s Director of Policy, Advocacy & Support Services, Vicki Durston at the COSA ASM on Wednesday. Her poster detailed preliminary outcomes from a National Roundtable it hosted in Canberra in August where key cancer and data experts gathered to make recommendations towards the routine capture of cancer stage and recurrence data by our registries.
“Without access to these data, we have no way of truly knowing how many people are living with metastatic disease in Australia,” says Ms Durston. “We cannot adequately plan or invest in services to meet the needs of this group.”
The roundtable was a key recommendation from a 2022 BCNA issues paper Making Metastatic Breast Cancer Count, which estimated there were at least 10,500 people living with metastatic breast cancer.
A subsequent study by Dr Smith and Dr Sally Lord, also presented at the COSA ASM this week, shows this to be a conservative estimate, using linked datasets to show that in 2016 there were over 5,000 people living with metastatic breast cancer in NSW alone.
“The roundtable showed the power of bringing the sector together, including peak bodies such as COSA, to work towards a solution to a problem. We are excited to be releasing a full report on these recommendations, that will be aligned to the Australian Cancer Plan, later this month.”