25,550+ Australians and counting: The growing need for neuroendocrine cancer care

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With over 25,550 Australians living with this type of cancer and one Australian being diagnosed every 90 minutes, neuroendocrine cancer (NETs) should be a well known disease. Aretha Franklin and Steve Jobs died of neuroendocrine cancer, but chances are, you've never heard of it.

Due to a lack of awareness amongst the general public and medical practitioners, neuroendocrine cancer is often misdiagnosed and can go undetected for many, many years. Over half of patients are initially misdiagnosed because NET symptoms can mimic more common conditions such as Irritable Bowel Syndrome (IBS), asthma, or menopause.

Although the number of people diagnosed with NETs exceeds both ovarian and brain cancer, government funding to provide support to Australians living with this disease is almost non-existent and patient needs are often overlooked. Thankfully, NeuroEndocrine Cancer Australia, a non-profit organisation dedicated to supporting individuals battling this less common and complex disease, is at the forefront of providing support and care to Australians living with NETs.

With the staggering number of Australians currently battling the challenges of Neuroendocrine Tumours (NETs) within our nation, the profound impact of cancer on not only the patients but also their families is undeniable.

"These sobering statistics underscore an urgent call for heightened awareness, rigorous research, and specialised care dedicated to our NET community," says Meredith Cummins, CEO of NeuroEndocrine Cancer Australia.

Neuroendocrine cancers may not be as widely recognised as other forms of cancer, but they are by no means less devastating. These cancers originate in the neuroendocrine system, a complex network of cells that regulate essential bodily functions such as hormone production, digestion, and blood sugar control.

What makes these cancers particularly challenging is their ability to mimic various other conditions like IBS, menopause, and asthma. NETs can present mild symptoms like flushing, wheezing, heart palpitations, diarrhoea, fatigue, and rashes, often delaying diagnosis and treatment.

The ignorance about NETs adds to the complexity of the disease. With over 5,550 new cases diagnosed each year in Australia, the patient community remains relatively small compared to more common cancer types. Nevertheless, NETs are more common than cervical and brain cancer, yet they receive very minimal funding in comparison.

This substantial yet unknown prevalence often results in a lack of public awareness and funding for NETs, leaving patients and their families to grapple with feelings of isolation and uncertainty. With more than 25,550+ NET patients living in Australia, the need for support has never been greater.

NETs can remain asymptomatic for years, only revealing themselves once they have reached advanced stages. Sadly, for many patients the cancer has metastasised by the time a diagnosis is received. The complex nature of the disease demands a multi-disciplinary approach, involving experts from various medical fields to provide specialist care.

As the tumour cells originate from neuroendocrine cells anywhere throughout the body, NETs can quickly spread and manifest in different organs, leading to a range of symptoms, many of which go unnoticed. Patients frequently face misdiagnosis and unnecessary treatments before receiving the correct diagnosis, adding to the emotional and physical burden of their journey.

To combat the challenges posed by neuroendocrine cancers, it is imperative to provide specialised care that caters to the unique needs of patients. NeuroEndocrine Cancer Australia tirelessly advocates for increased awareness, better screening, and improved support for patients and their families dealing with NETs.

NeuroEndocrine Cancer Australia has also been advocating for improved education for healthcare professionals, with the overall goal of improving Optimal Care Pathways for patients. With this improvement there come a series of support options needed for patients, including most importantly the support which specialist NET nurses can provide.

Research into NETs also finds itself at a critical juncture. Advancements in understanding the disease and developing more effective treatments are essential to improving patient outcomes but aren't readily funded. Increased funding for neuroendocrine cancer research can pave the way for breakthroughs in diagnostics and therapies, giving hope to those currently fighting this battle.

Within the diverse tapestry of Australia, there exists a community of individuals who embody unwavering courage and resilience in their fight against neuroendocrine cancers. These patients, along with their caregivers, form a tight-knit family united by their shared experiences. NeuroEndocrine Cancer Australia aims to assist and empower this community, providing them with a voice and advocating for their unique needs.

As we surpass 25,550 Australians affected by NETs, we must recognise the urgent need for action. NeuroEndocrine Cancer Australia invites all Australians to join its mission to raise awareness, promote early detection, and improve the lives of those living with these enigmatic cancers. Together, we can provide hope, support, and a brighter future for those facing the challenges of neuroendocrine cancers. Let us come together as a nation to ensure no one battling neuroendocrine cancers walks this journey alone.

For more information head to: neuroendocrine.org.au