Lisa’s cancer was ‘forgotten in the sea of celebratory pink’. Now she has been counted

NSW researchers have uncovered the true magnitude of the most severe form of breast cancer in a world-first discovery that they believe will have life-changing ramifications for those who live with the incurable disease.

A staggering 7900 people – 7850 women and 50 men – are living with metastatic breast cancer in NSW, a complex data analysis by the Cancer Institute NSW found.

Metastatic breast cancer refers to when cancer has spread from the breast to other parts of the body.

Lisa Rankin discovered she had metastatic breast cancer after initially being diagnosed with breast cancer in 2019. Credit: Rhett Wyman

Globally, no one has tracked the number of people diagnosed with this form of the disease. Cancer registries only collect initial diagnoses, meaning the number of people living with this advanced form of the disease was unknown.

“The data we now have reveals a reality far greater than we ever anticipated,” said Breast Cancer Network Australia (BCNA) spokeswoman Vicki Durston.

The Cancer Institute NSW identified the number of diagnosed cases by linking Commonwealth incidence and mortality registries with data from NSW Health, Medicare, the Pharmaceutical Benefits Schedule and the National Death Index.

People with metastatic breast cancer need ongoing, often intensive treatment, and the lack of data meant these patients were invisible to health systems and policymakers, Durston said.

Treatment advancements have led the survival rate for metastatic breast cancer to double in the past 20 years, but to discover 7900 people were living with the disease was a shock even to veteran breast cancer specialists.

“That is an incredible number,” said Professor Fran Boyle, a leading medical oncologist specialising in breast cancer. “The oncology world guessed that, maybe, it was 5000.”

Boyle, who recently founded the Metastatic Breast Cancer Action Australia advocacy group, said these patients had been “forgotten in the sea of celebratory pink that focuses primarily on survivorship and recovery”.

“Many of those diagnosed with metastatic breast cancer desperately need support, both emotional and physical, and many are simply not getting this,” she said.

Metastatic breast cancer patient Lisa Rankin said demystifying the number of people with the disease meant that she was no longer invisible.

“I am counted,” said Rankin, who was diagnosed with breast cancer in 2019 at 46 years old.

Six months after multiple surgeries, chemotherapy and radiation treatment, an unrelated scan led to doctors discovering her cancer had metastasised to her spine.

“I had fully expected to be a survivor, but with metastatic disease, you just don’t know what’s around the corner,” said Rankin, a consumer representative with Breast Cancer Network Australia.

“In the future, there will be a lot more people living with metastatic breast cancer than people coming through with an early-stage diagnosis” – but Rankin said there was significantly more support for people in the early stages of the disease.

“I fully support prevention and early intervention … but if you are living with this disease, you deserve the best care and support just like anyone with an early-stage diagnosis,” she said.

NSW Chief Cancer Officer and Cancer Institute NSW CEO Professor Tracey O’Brien said the finding would help shape the future of cancer research and care.

“This is just the start,” O’Brien said. “We are really keen to share this methodology across the world, to every jurisdiction, to accurately define the magnitude of this problem.”

NSW Health Minister Ryan Park said Australia was “now one step closer to understanding just how many people are impacted by this aggressive form of breast cancer”.

The Morning Edition newsletter is our guide to the day’s most important and interesting stories, analysis and insights. Sign up here.