People who develop neuroendocrine tumours (NETs) often face a complicated path to diagnosis, with most requiring several referrals before they are eventually diagnosed with cancer, new research has shown.

According to the findings, 60% of those affected require many referrals before being diagnosed and 23% will have waited more than five years to have their condition properly diagnosed. A further 18% will have waited for between one and five years.

NETs is the collective term for a group of uncommon or ‘quiet’ cancers that affect the neuroendocrine cells of the body. It is often slow to develop - symptoms arise over time and are often attributed to more common medical problems, such as irritable bowel syndrome (IBS), Crohn’s disease and gastritis.

There are currently around 2,400 patients living with NETs in Ireland and it is estimated that approximately 140 patients are newly diagnosed every year. However, due to the non-specific nature of symptoms, misdiagnosis is common and 90% of NETs patients had never heard of the condition before being diagnosed themselves.

Last year, 39% of NETs patients in Ireland were initially misdiagnosed at least once with other conditions, while 41% of those diagnosed had already progressed to stage IV cancer.

Unfortunately, the cause of NETs is not yet fully understood, so early diagnosis is key.

The research, which was undertaken by Ipsen Ireland, was conducted in October 2021 among the NET patient network database of patients living with NETs in Ireland.

The chair of the NET Patient Network, Mark McDonnell, expressed concern about the “significant delay in confirmation of NETs diagnosis for many patients in Ireland”.

“Sadly this means that a significant volume of patients are being diagnosed at quite a late stage in the disease development.

“Once diagnosed with NETs, 78% of patients are reassured by the course of action and care provided by healthcare professionals, but we have a hurdle to overcome to reach that stage in terms of improving our national rate and pace of diagnosis,” he commented.

He said that every NETs patient “should have their case reviewed or have an input into their care by a NETs specialist clinician”.

The research found that patients would like to have a more efficient diagnosis pathway and access to a NETs centre of excellence. They would also like to see increased availability of more innovative treatments and clinical trials in this area.

The research was conducted to coincide with World NET Cancer Day (November 10).