TOMORROW marks Metastatic Breast Cancer Awareness Day and the start of a week of fundraising, advocacy and awareness-raising activities for an often overlooked and incurable form of breast cancer.
Metastatic breast cancer – also known as stage IV, advanced or secondary breast cancer – occurs when cancer spreads beyond the breast or nearby lymph nodes to other parts of the body such as the bones, liver, lungs or brain.
While it is not curable, it is treatable, and people with metastatic breast cancer can live for many years with the right care and support.
Sufferer Brigitte Phillips said a metastatic breast cancer diagnosis can feel very isolating.
“The work that MBCAA does to create a voice for people living with metastatic breast cancer impacts at so many levels,” Ms Phillips said.
“The strength and passion of the women behind the organisation is inspiring, creating hope and community that is often difficult to find in the metastatic breast cancer space.”
A year after its launch, Metastatic Breast Cancer Action Australia has made significant progress in raising awareness of this treatable but not curable disease.
Now, MBCAA is calling for urgent action following new research that reveals a much larger number of Australians are living with metastatic breast cancer than previously understood.
Chair of MBCAA and Senior Research Fellow, Daffodil Centre, Dr Andrea Smith said this highlights the critical need to address gaps and inequities in support services, so that health systems and cancer organisations can better meet the needs of people living with metastatic breast cancer.
“For too long, people living with metastatic breast cancer have been invisible in our health data. Without knowing how many of us there are, it’s impossible to plan the services and support we need,” Dr Smith said.
“That’s why I’ve spent years advocating for people with metastatic breast cancer to be counted – because every number represents a person, a family, a story. We deserve to be seen, heard, and supported.”
MBCAA supports the call for accurate data on the number of people living with metastatic breast cancer – a long-standing gap in Australia’s cancer data systems.
“We can’t improve what we don’t measure,” Dr Smith said.
“For years, people with MBC weren’t counted. Through research and advocacy, that is changing, and it’s a critical step towards better care for people with metastatic breast cancer.”
MBCAA director Jen Byles said the Cancer Institute NSW estimates that around 24,000 Australians are living with metastatic breast cancer – far more than previously thought.
“That’s thousands of individuals and families navigating ongoing treatment, uncertainty and invisible challenges every day,” she said.
Tomorrow, October 13, MBCAA launches its first fundraising campaign: Plant Hope.
This initiative invites Australians to plant seeds of awareness and support for people living with MBC.
“Hope is about to bloom and it’s not pink: it’s purple,” Ms Byles said.
“Plant Hope is about turning something simple into something powerful. It’s a way for all of us to come together and do something meaningful – to connect, to care, and to keep hope alive.”
The campaign centres around MBCAA’s symbolic gardening gloves, which supporters can purchase or use to host a Plant Hope fundraising event.
Funds raised will support MBCAA’s work to improve care, connection, and outcomes for people with metastatic breast cancer.
MBCAA has also been engaging with the breast cancer community, government, cancer organisations, researchers and key stakeholders to improve awareness of the unique needs of those with metastatic breast cancer.
MBCAA director and medical oncologist, Frances Boyle, said that while survival remains low, it has improved thanks to advances in treatment.
“People with metastatic breast cancer are living longer, but they do so from the shadows, rarely visible and barely heard,” she said.
MBCAA is the country’s first and only advocacy charity devoted to improving the lives and outcomes of people living with metastatic breast cancer.
Led by people with lived experience, MBCAA uses its collective voices to advocate for better policies, services, and supports that reflect the specific needs of communities.
“In just one year, MBCAA has created a national voice for people living with metastatic breast cancer,” Dr Smith said.
“We’ve brought together researchers, clinicians, and people with lived experience to push for real change, from better data to better care.
“But this is just the beginning. We’re planting seeds of hope now, so that in the future, no-one with metastatic breast cancer feels alone or overlooked,” she said.
Donations to MBCAA can be made at MBC Action Australia.
