Neuroendocrine cancer is the seventh most common cancer in Australia this year after breast, prostate, melanoma, colorectal, lung and non-Hodgkin's lymphoma.
But someone will be diagnosed in Australia with it every one or two hours.
Neuroendocrine cancers are complex, misunderstood and misdiagnosed.
They're also often slow growing, regularly dismissed and diagnosed late, according to Simone Leyden, CEO of NeuroEndocrine Cancer Australia (NECA), who lost her own sister to neuroendocrine cancer.
Many people living with undiagnosed neuroendocrine cancer often present to hospital emergency departments with a range of related symptoms before receiving a cancer diagnosis.
Ms Leyden said due to the lack of awareness and the nature of this cancer to mimic other diseases, most neuroendocrine cancers present as late stage cancer once it has spread to other parts the body, beyond the primary disease site.
Professor Rodney Hicks, Professor of Medicine at the University of Melbourne, pioneered specialised neuroendocrine cancer treatments 25 years ago.
"At the moment, 60 per cent of people with neuroendocrine cancer have an advanced stage four cancer, meaning they already have secondary growths at the time of diagnosis," he said.
"Early diagnosis will not only help patients, but it will also alleviate the burden on the Australian healthcare system, one which is already under considerable strain."
To address this cancer inequity, NeuroEndocrine Cancer Australia on Wednesday launched a five year Action Plan which identifies critical areas of need.
These include priorities relating to education and awareness, clinical management, patient care, data and research.
The launch of the action plan coincides with World NET Cancer Awareness Day on Wednesday 10 November 2021.
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