Metastatic breast cancer is no longer hidden in plain sight: Making it count

Currently, over 10,000 Australians live with metastatic breast cancer, according to Breast Cancer Network Australia (BCNA).

Currently, Australia’s cancer registries are only required to report the number of people diagnosed with cancer (incidence) and the number of people who die from cancer (mortality), so this figure is only an estimate. Because of this, people living with metastatic breast cancer are not counted at the moment.

According to Vicki Durston, BCNA’s Director of Policy, Advocacy, and Support Services, breast cancer recurrence, and stage at diagnosis are not consistently reported across states and territories.

Using models at our disposal, we estimate that there will be 10,553 people living with metastatic breast cancer in Australia by 2020. This is a conservative estimate, and the figure is likely to be much higher. Ms. Durston estimates that this number will rise to 12,840 by 2025.

As well as advocating for improved services for this population, BCNA has long called for improvements in metastatic data collection and reporting.

There are significant healthcare needs for people with metastatic breast cancer. It is the most severe form of breast cancer and requires ongoing and often intensive treatments. In the past twenty years, the survival rate for metastatic breast cancer has doubled thanks to new therapies. While healthcare goals should include ways to define and live a quality life with metastatic cancer, they must go beyond prolonging life.

There is a lack of care for people with metastatic breast cancer in Australia, according to BCNA’s 2017 Member Survey Report. In addition to the fact that people with metastatic breast cancer have significantly higher supportive care needs than those with non-metastatic breast cancer, our health and supportive care services are less likely to meet these needs, which is problematic from an equity perspective.

Some of the complex, chronic, and often unpredictable needs that impact the quality of life of cancer patients, including fear and anxiety, financial pressures, palliative care services, pain and symptom management, and assistance with daily living, are listed below.

According to Dr. Andrea Smith, a BCNA Consumer Representative living with metastatic breast cancer and a researcher at the Daffodil Centre in New South Wales, the model needed to estimate the number of people living with metastatic breast cancer will increase visibility for this group.

Despite acknowledging the incredible progress made in breast cancer treatment and care, celebrating improved breast cancer survival effectively shuts out the voices of those who will not survive, namely those with metastatic cancer. Ms. Smith says we are ‘hidden in plain sight.

As a result of incomplete data, those living with metastatic breast cancer are also invisible to our health systems and policymakers. Without this figure, we cannot advocate, plan or invest to meet their health needs.

Based on our work to date, we know that cancer patients need proper care and support. The lifelong nature of the treatment, complex care, and anxiety associated with an uncertain prognosis and disease trajectory can pose physical and emotional challenges to people with metastatic breast cancer, says Ms. Durston.

The current gap in cancer registry data has been recognized in Australia for many years, but no solution has been implemented, and accountability remains unclear.

In the United Kingdom and the United States, some progress has been made in strengthening the visibility of metastatic breast cancer by other breast cancer consumer groups. International breast cancer organizations have already supported BCNA’s initiative, hoping it will serve as an incentive for many other countries.

For policymakers and health providers to accurately predict Australia’s future health service utilization, workforce needs, and health care costs, it is necessary to capture and report cancer stage and recurrence data.

To ensure those living with metastatic breast cancer are counted and made visible, BCNA calls for national leadership, investment, accountability, and legislative change. To plan and invest in this complex population, we need visibility.

Visit for BCNA’s issue paper Making metastatic breast cancer count