- 2 years ago
10 November 2021
A patient group has launched a five-year Action Plan to address what it describes as “cancer inequity” in Australia, saying the ability of thousands of Australians diagnosed with more complex cancers to access timely treatment and support services is “out of step” with higher profile, better funded cancers.
Having recently held a National Theranostics Roundtable, NeuroEndocrine Cancer Australia (NECA) will today launch a five-year Action Plan, ‘Preventing Australians from slipping through the NET’, to identify critical areas of need and priorities for patients 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 today, with NECA CEO Simone Leyden saying thousands of Australian cancer patients are scrambling to access the care and support they need.
“The number of Australians diagnosed with neuroendocrine tumours (NETs) has increased by 20 per cent over the past five years. More than 5,000 Australians – or 1 every 2 hours – will be diagnosed with neuroendocrine cancer this year,” the patient group said.
“Neuroendocrine cancers are complex, misunderstood and misdiagnosed. They’re also often slow-growing, regularly dismissed and diagnosed late.”
NECA CEO Simone Leyden, who lost her sister Kate to NETs in 2009 and started the patient group as a legacy to her sister, has spent the past 12 years working to raise awareness of NETs and to increase access to treatments. Kate’s physician, Professor Rod Hicks, has spent 30 years treating NETs patients and works with Leyden (see MedTwos story running today).
“These patients need individual treatment pathways, but their stories are all too common – they present regularly to hospital emergency with intense pain, nausea, vomiting and coughing blood, often being misdiagnosed with gastro, irritable bowel syndrome, anxiety or asthma,” Leyden said.
“Many then undergo a barrage of tests, treatment and surgery that have no impact on their survival outcomes.”
She said due to the lack of awareness and the nature of this cancer to mimic other diseases, the majority of neuroendocrine cancers are only diagnosed once they have spread to other parts of the body.
“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,” Professor Hicks said.
Calling for “a detailed national response” to the management of neuroendocrine cancer, Leyden says a specialist cancer nurse “is critical to streamline patient care once this diagnosis is received, but funding is currently inadequate to meet current and growing patient needs”.
Neuroendocrine cancer is the seventh most common cancer diagnosis in Australia after breast, prostate, melanoma, colorectal, lung and non-Hodgkin’s lymphoma.