There have been incredible advances in breast cancer diagnosis and treatment in recent years. And stories about celebrities who have “beaten” breast cancer continue to be a source of inspiration for many people.

However, this emphasis on fighting, beating and surviving cancer shuts out the voices of those who will not survive. That is, the many people diagnosed with incurable, life-limiting metastatic breast cancer, which kills nine Australians every day or nearly 3,300 people a year.

People with metastatic cancer are often excluded from survivorship research studies. If they are not included in the research then the findings cannot be used to design and deliver appropriate services and care.

Australia’s cancer registries do not systematically collect or report recurrence. The same applies for stage at diagnosis. Consequently, the number of Australians living with metastatic breast cancer is unknown. This is a fundamental problem. Without information to quantify this group of people we cannot adequately plan or deliver services.

This study estimates that a large number of individuals are living with metastatic breast cancer in Australia. It demonstrates the importance of identifying individuals with recurrent metastatic breast cancer, in addition to people diagnosed with de novo metastatic breast cancer. This information will help to inform funding and delivery of appropriate clinical and supportive care services for people with metastatic breast cancer.

Metastatic breast care nurses are increasing in number, but not everyone has access to them.

What is it that people value about having access to a metastatic breast care nurse?

Support groups are effective means of helping some people with metastatic cancer develop coping skills and support while finding acceptance of their diagnosis.

What do people with metastatic breast cancer think about support groups?

The complexity of metastatic breast cancer, its rapidly evolving treatment, and the changing trajectory toward long-term survivorship create unique challenges for the provision of supportive care.

People's experiences with metastatic breast cancer have received little research attention. This research reports on adverse consequences of the diagnosis, patients' satisfaction with health care providers, and their strategies for living.

People with advanced or metastatic cancer and their caregivers may have different care goals and face unique challenges compared to those with early-stage disease or those nearing the end-of-life. These MASCC-ASCO standards and practice recommendations seek to establish consistent provision of quality survivorship care for people affected by advanced or metastatic cancer.

The Advanced Breast Cancer Global Alliance guidelines provide a useful tool for the management of metastatic breast cancer in clinical practice.

Key gaps included patients' knowledge about diagnosis and treatment; the need for meaningful relationships between patients and health care professionals; the need for coordinated, multidisciplinary care; access to clinical trials; and support for families and caregivers.