Isolated, unsupported and not even counted correctly, people with metastatic breast cancer know they will eventually die from the disease. or signup to continue reading But landmark research has highlighted the likely true extent of their ranks for the first time, pointing to dramatic underestimates in official figures. Almost 8000 people, mostly women, are now thought to be living with the incurable, advanced form of breast cancer in NSW alone, triggering calls for the new method of counting them be adopted nationwide.
Andrea Smith was blindsided when diagnosed with the condition in 2016 after the cancer had spread to her bones and liver. She was weeks away from submitting her PhD on tobacco control, but the diagnosis shifted her focus in a new direction. Dr Smith is now a researcher at the University of Sydney's Daffodil Centre, focusing on survivorship and supportive care in the absence of a cure.
"We will all eventually die from this disease once we run out of treatment options," she told AAP. Like one in 20 people diagnosed, she had no prior experience with breast cancer treatment before learning she had an advanced and incurable form of it. "I was quite surprised that I was being treated differently, like there were breast cancer nurses at my hospital, but they only supported people with early breast cancer," Dr Smith said.
Advocates launched the nation's first specific advocacy organisation, Metastatic Breast Cancer Action Australia, on Wednesday. The launch coincided .