More than 21,000 Australian women are diagnosed with breast cancer each year, yet despite huge advances in treatment and survival prognosis, hidden costs continue to devastate lives.
Rhiannon Abshoff was 32 and on maternity leave with her one-year-old son when she was diagnosed with hormone positive breast cancer a few days before Christmas.
She had no family history of the disease and no warning signs other than discovering a lump.
What followed was an abundance of scans, appointments, fertility treatment, surgery, chemotherapy, medication and psychology sessions, most of which had associated out-of-pocket costs.
"In the first six months following the diagnosis it was about $30,000 for all the medications, scans, biopsies, mammograms," she told AAP.
"I'm a patient who had gold-tier private health cover after having a baby, had access to Medicare and still paid an exorbitant amount, it's just lucky that we had the savings to cover it but that's not a reality for everyone."
Almost 90 per cent of Australians diagnosed with breast cancer face significant out-of-pocket costs that accumulate rapidly, a report examining the hidden costs of early breast cancer sponsored by healthcare giant Novartis and launched at Parliament House on Thursday has found.
One in five people delay or skip treatment due to these cost pressures and the broader economic fallout is equally profound yet often overlooked.
Research by Monash University has found Australians diagnosed with breast cancer lose, on average, the equivalent of 1.5 years of full-time work.
Ms Abshoff had worked at the same company for eight years prior to her diagnosis, but her time off for treatment was not counted towards long-service leave.
"There's very little support for people in my age group whose decisions can be very different in terms of fertility and career considerations," she said.
"A cancer diagnosis like this is a huge blow to the way you are setting up your life in your thirties."
Business owner Jen, whose last name has been withheld for privacy reasons, had to put her work aside following her diagnosis with lobular breast cancer.
Her 19-year-old son, who had just completed his first year at the Australian National University, put his studies on hold to return home to support her and the family business while she underwent treatment.
"There are so many other side things you have to pay for that are unexpected costs including physio, scans, medications, psychology appointments," she said.
The report calls for meaningful change across the healthcare system and policies to improve access to innovative therapies, address growing financial burdens on patients by reforming funding models and strengthening psychosocial support.
It was clear the burden of the disease extends far beyond the clinical setting, Senator Wendy Askew said.
"The financial, emotional and social cost faced by Australians diagnosed with early breast cancer, but indeed any cancer diagnosis, are profound," she said.
