Using the Cancer Institute NSW’s unique linked data sets, a methodology which will soon be shared nationally and internationally, it has been determined that 7,850 women and 50 men in NSW are living with metastatic breast cancer.

Understanding the number of people living with this disease will help overcome the feeling of invisibility described by so many and ensure that NSW is prepared to support the growing number of people living with and surviving cancer, thanks to medical advancements in treatment and care.

It will also ensure health professionals and researchers better understand the impact of diagnostics and treatment on breast cancer recurrence and survival, and work to make life-changing improvements in cancer research, care and policy reform.

Metastatic breast cancer is an invasive form of breast cancer which has spread from the breast to other parts of the body. While the number of people initially diagnosed with breast cancer is available through each state and territories cancer registries, the exact number of people who go on to develop metastatic breast cancer, following an initial breast cancer diagnosis, is unknown in Australia and around the world.

Breast Cancer Network Australia (BCNA) has led Australian advocacy efforts to develop a clearer picture of the number of people living with metastatic breast cancer, holding a roundtable last year with key government, non-government and community agencies.

Following the roundtable, the Cancer Institute NSW set to work to identify the number of people living with metastatic breast cancer, using well established and robust data assets.

By linking cancer incidence and mortality data with NSW clinical datasets, Commonwealth Medicare Benefits Schedule, Pharmaceutical Benefits Schedule and National Death Index data, the Institute was able to determine the number of people living with metastatic breast cancer in NSW.

The Cancer Institute NSW will soon share its robust data methodology to help support national and international efforts in understanding and treating metastatic breast cancer

Today, Minister for Health Ryan Park also opened a new BreastScreen NSW clinic at the Royal Hospital for Women in Randwick. For eligible women, a breast screen every two years can help detect breast cancer in its earliest stages when it is easier to treat. For more information on breast cancer and breast cancer screening visit www.breastscreen.nsw.gov.au.

Quotes attributable to Minister for Health Ryan Park:

“As NSW Health Minister, I am incredibly proud NSW clinicians and researchers have made this remarkable discovery.

“NSW is proud to lead global efforts to understand how many people are living with metastatic breast cancer and lift the veil of uncertainty and invisibility experienced by thousands of people in our community.

“Australia is now one step closer to understanding just how many people are impacted by this aggressive form of breast cancer, and in an important next step, understanding how many other people in our community are living with other forms of metastatic cancer.”

Quotes attributable to Federal Minister for Health and Aged Care Mark Butler:

“This is an important step forward for people with metastatic breast cancer in New South Wales and I applaud the world-leading efforts of Cancer Institute NSW.

“Knowledge is power and this information will help drive a new era of research to improve the lives of thousands of people, not just in NSW but across the country.”

Quotes attributable to Minister for Women Jodie Harrison:

“I congratulate the Cancer Institute NSW on this incredible research.

“With breast cancer being the second most commonly diagnosed cancer in Australia, discoveries like this helps us get ahead and ensure that NSW is prepared to support the growing number of people living with and surviving cancer.”

Quotes attributable to Member for Coogee Marjorie O’Neill:

“Breast Cancer Awareness Month is the perfect time for women to make an appointment for your next mammogram. It’s quick, it’s easy and it’s free.

“The refurbished and expanded BreastScreen NSW clinic here at The Royal Hospital for Women will make such a difference for local women, and as a result between 3 – 5 thousand additional women will be able to get a potentially life-saving mammogram each year.”

Quotes attributable to NSW Chief Cancer Officer and CEO Cancer Institute NSW Professor Tracey O’Brien AM:

“While our global understanding of cancer has improved significantly, cancer rates are projected to triple in the coming decades with more people currently living with cancer than are being newly diagnosed.

“Pinpointing how many people have metastatic breast cancer is more than just knowing a number. It’s about giving a voice, options and hope to people living with and beyond cancer and letting them know we see them and are here for them.

“Although a cure for metastatic breast cancer remains the ultimate goal, our immediate focus must be on helping those living longer with the disease to live well. It’s not just about treating the cancer – it’s about treating the whole person, improving their quality of life and addressing their physical, emotional, financial and practical needs.”

Quotes attributable to Director Policy, Advocacy & Support Services Breast Cancer Network Australia Vicki Durston:

“NSW is setting a benchmark as the first state to establish a method for reporting on the number of people living with metastatic breast cancer.

“The data we now have reveals a reality far greater than we ever anticipated. BCNA stands for every individual whose life remains invisible in cancer data registries—not just here in Australia, but globally.”

Quotes attributable to Breast Cancer Network Australia Consumer Representative Lisa Rankin:

“As someone living with metastatic breast cancer, I am incredibly excited that it is now possible to recognise those living with the disease. Until now we have been hidden in plain sight and vastly underestimated in numbers.

“I want to thank the NSW Government and BCNA’s advocacy for their achievement. I look forward to the positive change which will result from being recognised, improving the lives of those living with the disease, their families and others important to them.”