How Dr Andrea Smith is changing the future for people with metastatic breast cancer

Nearly a decade ago, Dr Andrea Smith was diagnosed with stage 4 metastatic breast cancer.

At the time, she noticed that many cancer support services were not designed with people like her in mind.

“I tried to approach several cancer supportive care services, and I found that many of them didn’t really understand what my needs were,” Dr Smith says. “Services weren’t appropriate for me, or else I was actually told I wasn’t eligible for them.”

That experience still drives her work today. Now a Senior Research Fellow at the Daffodil Centre, a joint venture between Cancer Council NSW and the University of Sydney, Dr Smith is leading research focused on metastatic survivorship.

This field is dedicated to improving the quality of life for people living long term with an incurable cancer diagnosis.

“Supportive care services haven’t always caught up with the fact that people with metastatic cancer are living longer. But they still often don’t get the support they need,” she says. “That’s the gap my research is trying to fill.”

New data, new hope

Dr Smith is the lead author of a groundbreaking new study published in the Asia-Pacific Journal of Clinical Oncology. It provides the first Australian estimates of how many women are living with metastatic breast cancer using linked health records.

Until now, there has been no clear picture of how many people in Australia are living with metastatic breast cancer. This lack of data has made it difficult to plan and fund services.

The study estimated that 5,009 women were living with metastatic breast cancer in New South Wales as of 1 January 2016.

Of these, 32% were diagnosed at stage 4 (referred to as de novo), and 68% were women whose cancer had returned after an earlier-stage diagnosis. This distinction is critical.

“Our research highlights the importance of identifying people with recurrent metastatic breast cancer, not just those diagnosed at stage 4, so they can access the care and support they need,” Dr Smith explains. “That hasn’t always been factored into service planning.”

The study also shows that it is possible to use linked health records to fill this important data gap. This methodology could be scaled nationally to help improve policy, funding decisions and patient care.

A movement for recognition, care and change

Dr Smith’s research is already having a broader impact. It has contributed to work by the Cancer Institute NSW and is helping to inform ongoing discussions about national cancer planning. But her efforts go beyond research alone.

In 2024, Dr Smith co-founded Metastatic Breast Cancer Action Australia, a national initiative that advocates for better services, improved data and greater recognition of people living with metastatic disease.

“Back in the 2000s, life expectancy for metastatic breast cancer was between 18 and 24 months. Today, it is around five years. That is a huge shift,” Dr Smith says. “But the system has not fully adjusted to support people to live well during that time.”

Through her Daffodil Fellowship, Dr Smith has built a dedicated program of work focused on metastatic survivorship. This includes estimating prevalence, improving access to peer support, finding gaps in current care models and setting national standards for supportive care.

She hopes this momentum will lead to real change in how the health system recognises and supports people with metastatic cancer.

“We need supportive care that meets people where they are, not services that leave them behind,” Dr Smith says. “We need better data, better access to services, and stronger community understanding of what it means to live with metastatic cancer.”

She also recognises that this work is not possible without strong partnerships.

“Cancer Council cannot do this work on their own. Partnerships and donors are critical,” she says. “I am incredibly grateful for the support I received. Together, we can ensure that people with metastatic breast cancer are not just counted but truly supported.”

To find out more, visit www.cancercouncil.com.au

If you need to talk about cancer, call Cancer Council on 13 11 20