Publications and reports

This report is designed to give the sector insight into the challenges, enablers and a path forward to routine collection of stage and recurrence Australian breast cancer data.

Findings are drawn from a national roundtable attended by key cancer sector stakeholders, population based cancer registry representatives, clinical professional bodies and policymakers in August 2023.

All quotes contained in this report are attributed to attendees of the roundtable.

 
Read the full report: 

Time to Count People with Metastatic Breast Cancer - A Way Forward (2023)

Our inaugural ‘issues paper,’ released in October 2022, shines a spotlight on those living with treatable but not curable metastatic breast cancer. In Australia, our state and territory cancer registries do not routinely collect and report cancer stage and recurrence data. This means we do not truly know how many people are living with metastatic breast cancer.

Using modelling available to us, in 2020 we estimate there were at least 10,553 people living with metastatic breast cancer in Australia.

We call for national leadership and accountability to ensure those living with metastatic breast cancer are counted and made visible. We must have this visibility to plan for and invest in this growing population with complex and often unmet needs.Read the full report:Making Metastatic Breast Cancer Count (2022)

Despite recognised benefits, breast reconstruction rates for Australian women with breast cancer managed by mastectomy are less than half those in found in comparable countries like England and the United States. Through the 2018 State of the Nation report, BCNA highlighted the need to ‘Improve access to breast reconstruction surgery for all women who choose mastectomy’. 

As part of our work to meet this aim, BCNA undertook a members’ survey to develop a better understanding of women’s experiences regarding breast reconstruction, particularly waiting times, costs and the influence residential location has on these experiences. This report details findings from this survey.   Read the full report:
Breast Reconstruction in Australia (2021)

In response to the rapid and ongoing rise in the number of people contracting the novel Coronavirus (COVID-19) across the world, the World Health Organization officially declared a pandemic on 11 March 2020.

To control the spread of the virus in Australia, from March 2020 state and federal governments enacted a wide number of restrictions to limit social interactions and reduce the demands on the health system by for instance, cancelling elective/non-urgent medical procedures, moving to telehealth (video or telephone-based consultations) and restricting numbers attending hospitals. People affected by cancer are at increased risk from the virus, especially those with active cancer. Much of the research into the impact of COVID-19 on cancer care has come from outside Australia.

This study addresses this situation and aims to understand the experiences of people affected by breast cancer in relation to: health care service changes/delays, telehealth, information access and anxiety and concerns regarding COVID-19 and breast cancer.Read the full report:
COVID-19 Report (2020)

The State of the Nation report was borne out of a desire to map where progress has been made, what the emerging issues are and where more work needs to be focused.

In what is the biggest study of its kind, the State of the Nation report is informed by a survey of over 10,300 of our members and our Financial Impact of Breast Cancer survey that explored the out-of-pocket costs of 2,000 people. Over the past 18 months, we have also met with more than 3,500 women and men to hear about the issues Australians diagnosed with breast cancer are facing. Their stories and experiences are reflected in this report.

The report highlights what it means to receive the best possible care. But not everyone gets best possible care, and a concerning disparity of care exists across the country. From women who have been waiting more than five years for a breast reconstruction, people who are suffering from lymphoedema to those who have never seen a breast care nurse, or people who have not had access to counsellors to deal with the emotional impact of their disease.

Too many people are also paying high out-of-pocket costs for their treatment in the private health care system.

While there have been significant advancements in breast cancer detection and treatment, it has become clear through the State of the Nation report that there is still much to be done. The report makes recommendations to make sure that no-one falls through the cracks in the system when they hear the words ‘you have breast cancer’. Read the full report:
State of the Nation (2018)

A diagnosis of breast cancer should not mean financial hardship but for many Australians this is unfortunately the case.

For nearly 25 years BCNA has heard from our network about the financial impact of their breast cancer diagnosis on them and their families. They have told us their out-of-pocket costs are sometimes significant, particularly for women who choose to have their treatment in the private health system using private health insurance.

To explore this issue BCNA commissioned Deloitte Access Economics to survey its members about the out-of-pocket costs of their breast cancer treatment and care, and other associated costs. The survey aimed to quantify the out-of-pocket costs faced by a woman in the first five years after a breast cancer diagnosis. Almost 2,000 survey responses were received.

Our report shows that there is a large disparity across the country in the out-of-pocket costs women face following a breast cancer diagnosis. While some women (12 per cent) reported no out-of-pocket costs, one quarter (25 per cent) of all women who completed our survey reported costs of more than $17,200. 

Total costs for women with private health insurance are higher than for women without. One quarter of privately insured women reported out-of-pocket costs greater than $21,000. 

These figures do not reflect any loss of income that a woman may have if she has to reduce work hours, or give up work altogether, during treatment and beyond. If lost income had been included these figures would have been higher. 

We know breast cancer can push women, and their families, to the financial brink, leaving them reliant on financial assistance from family, friends and their communities. By shining a light on the financial impact of breast cancer this report shows us some practical ways that we can make a difference. BCNA will use this report to start conversations with governments, private health insurance companies, health professionals and other cancer organisations about ways we can work together to help reduce the financial impact of breast cancer. 

Read the full report: 
The Financial Impact of Breast Cancer (2017)

In 2017, Breast Cancer Network Australia (BCNA) commissioned the Social Research Centre to conduct a large-scale online survey of members. The purpose of the survey was to provide BCNA with a measure of the recent information and support needs of members and the extent to which these needs were being met.

The research revealed gaps in current service delivery and identify priorities for action to assist BCNA to meet the needs of people with breast cancer. Results were then used to inform the development of the Breast Cancer State of the Nation Report 2018.

Read the full report: 

BCNA Member Survey (2017)