Draft for board review · not for circulation
World Neuroendocrine Cancer Day · 10 November 2026
Missed. Misdiagnosed. Misunderstood.
Neuroendocrine cancer is often mistaken for everyday conditions, and many people wait years for the right answer. An earlier diagnosis means earlier treatment, more options and more years lived well.
Executive summary
Every year, more than 400 people in New Zealand are diagnosed with neuroendocrine cancer – that’s more than ovarian, liver or oesophageal cancer and about the same number as diagnosed with brain cancer each year. Source to confirm
Research overseas shows people with symptoms visit their GP an average of eleven times before anyone puts the pieces together.2
Symptoms can mimic IBS, asthma, anxiety and menopause, so it’s easy to miss.
Plenty of people look well even with advanced disease, so their symptoms get brushed off.
Even when the cancer has spread, there are treatments that can improve symptoms and outlook.
Neuroendocrine cancer is an umbrella term for a group of individually rare cancers, but it’s likely more common than the official numbers suggest. Diagnoses have been climbing steadily, and they’re still heading up.
Getting diagnosed late is one of the biggest challenges. Research overseas shows people with neuroendocrine cancer symptoms visit their GP an average of eleven times before anyone puts the pieces together.2 The consequence of delayed diagnosis is that the cancer is often at an advanced stage (Stage 3 or 4), which limits treatment options and adds to the physical, emotional and clinical load.
At the heart of it is a lack of awareness. Neuroendocrine cancer is a complex, varied group of cancers that can look very different from person to person. Symptoms can mimic everyday conditions like IBS, asthma, anxiety and menopause, so it’s easy to miss.
For many people, it’s something to be managed long term, with symptoms that affect quality of life well beyond diagnosis. Effective treatments do exist, but long waits for a diagnosis and patchy referral pathways mean too many people never get to see a specialist.
It doesn’t help that the disease can be invisible. Plenty of people look well even with advanced disease, so their symptoms get brushed off or underestimated. That can be isolating and push treatment back even further. Access to therapies that could slow progression and ease symptoms can also be a hurdle, and some treatments are only funded for particular tumour sites.
This report sets out the challenges patients face, the urgent need for earlier diagnosis and improved access to specialist care and treatment options. It shines a light on the gaps in understanding, spells out what delays cost people, and backs the case for getting patients in front of specialists who really know this group of cancers.
Earlier diagnosis is a game-changer. Even when the cancer has spread, there are treatments that can improve symptoms and outlook. We hope this report brings some clarity and hope to anyone facing avoidable delays, limited options and a long wait for answers.
Foreword
Neuroendocrine cancer is still largely invisible. That’s why we need to bring this cancer out of the shadows, through earlier diagnosis and better understanding.
Since 2012, Neuroendocrine Cancer NZ has walked alongside people living with neuroendocrine cancer, and the whānau, friends and carers who support them. We’ve listened to their experiences, shared their stories, provided information they can trust, and pushed for change through advocacy, education and research.
We are grateful to the healthcare professionals with specialist knowledge in this field, who keep backing patients and championing better care. Thanks to our collective efforts, New Zealand has gone from no specialist scanner and no PRRT to some of the best access to scans and PRRT in the world – in under a decade. Real progress has been made, and it has made a real difference.
But neuroendocrine cancer is still not well recognised or understood, by the wider healthcare community or by the public. It’s complex, and that means it’s often misdiagnosed. Research shows it still takes more than four and a half years on average to get a correct diagnosis.1
Delays, misdiagnoses, and inconsistent care cause serious and lasting harm. Precious time is lost while the cancer keeps progressing, and people miss out on the treatment they need. Patients and whānau tell us they live with isolation and fear, and that they’re left without support just when they need it most. This is unacceptable and needs urgent attention.
Neuroendocrine cancer is still largely invisible. Late diagnosis and years of prolonged treatment take a toll on patients and their whānau, and on our health system too. That’s why we need to bring this cancer out of the shadows, through earlier diagnosis and better understanding.
This World Neuroendocrine Cancer Day, we’re proud to shine a light on raising awareness and getting people diagnosed sooner, so they can get timely treatment and support that can change their lives.
Dr Michelle Sullivan Chief Executive, Neuroendocrine Cancer New Zealand
New Zealand has gone from no specialist scanner and no PRRT to some of the best access to scans and PRRT in the world – in under a decade.
Dr Michelle Sullivan, foreword
What New Zealand has going for it
MDM is a multidisciplinary meeting: specialists from different fields reviewing a patient’s case together and agreeing the best plan.
Any patient anywhere in the country can have their case referred to the NET MDM by their specialist or their GP.
New Zealand’s national neuroendocrine tumour (NET) multidisciplinary meeting (MDM) is a regular collaborative forum where leading specialists from diverse fields such as pathology, radiology, oncology, endocrinology, surgery and nuclear medicine review complex patient cases to design individualised treatment strategies. Getting access to this level of expertise makes a real difference to patient outcomes and ensures the best care reaches people in the most remote corners of the country.
New Zealand has gone from no specialist scanner and no PRRT to some of the best access to scans and PRRT in the world.
Our GP education module, accredited by the Royal New Zealand College of GPs. Find out more
Some treatments are only funded for particular tumour sites, and patchy referral pathways mean too many people never get to see a specialist.
The basics
All neuroendocrine cancers begin in neuroendocrine cells, which are found all over the body. These cells release hormones that help regulate lots of bodily functions. When they turn cancerous, their growth and normal function get disrupted.
The most common neuroendocrine cancers start in the gut, pancreas or lungs. Most happen sporadically, meaning there’s no known genetic link. However, there are a few rare inherited conditions that can raise someone’s risk of developing a neuroendocrine cancer.
The most common symptoms include unexplained weight loss, growing tiredness, pain, diarrhoea, bloating, wind, heartburn, asthma-like symptoms, flushing and a cough that won’t go away.
There are two main subtypes and getting the classification right really matters, because it shapes both prognosis and treatment.
Usually grow more slowly than NECs and many other cancers. Symptoms can come and go at first, then build gradually. For many people, a NET means living with a chronic, incurable condition, with regular check-ups and monitoring.
Less common but more aggressive. Symptoms tend to show up suddenly and stick around. Someone with a NEC may go through a more typical cancer journey, which can be less certain and harder to survive.
Approximately 70% of patients have NETs
Just under 30% have NECs
Treatment
It depends on the tumour type, location, stage, growth rate, hormone activity and whether it has spread or is functioning i.e. producing excess hormones or chemicals. Treatment is tailored to each patient and can include surgery for early-stage tumours and systemic treatments like somatostatin analogues, chemotherapy, targeted therapies and radiotherapy.
Platinum-based chemotherapy is the standard first-line treatment and clinical trials are encouraged. Surgery is only considered in early stage cases where the tumour can be fully removed.
The aim of any treatment is to carefully balance effectiveness with potential side effects and long-term consequences.
Data spotlight
On average it takes 4.7 years to be diagnosed from the first symptom (4.5 years globally).1
For 15% of patients, it takes ten years or more to get a correct diagnosis.1
More than 400 New Zealanders are diagnosed every year with neuroendocrine cancer. Source to confirm
An estimated 4,000 Kiwis are living with neuroendocrine cancer in New Zealand at any one time. Source to confirm
On average patients visit their GPs 11 times before a correct diagnosis.2
of all patients are diagnosed after the cancer has spread around the body.3
of people experience their first neuroendocrine cancer symptom before the age of 50.4
Common misdiagnoses include irritable bowel syndrome, gastritis, anxiety, allergies, asthma and menopause.
Patients and whānau tell us they live with isolation and fear, and that they’re left without support just when they need it most.
Dr Michelle Sullivan, foreword
Consequences of misdiagnosis
Every missed or delayed diagnosis carries consequences. For patients and families it means months or years of symptoms and uncertainty. For our healthcare system it means mounting costs of repeat appointments, tests and referrals.
International research suggests that by the time a diagnosis is reached, more than half of patients already have cancer that has spread to other parts of the body.3 This can mean fewer treatment options, the need for more invasive treatment, and a higher financial burden on our health system.
Many people carry a lot of emotional distress due to delayed diagnosis, misdiagnosis, and the unpredictable nature of their illness. They commonly report feeling dismissed or not believed by doctors, and start doubting themselves.
All patients live in fear of symptoms getting worse, ‘scanxiety’ (anxiety about scans), the possibility of the cancer worsening, and deep loneliness – feeling like nobody understands what they are going through.
Some have to wait until their disease has worsened before treatment can be started, which only adds to the uncertainty.
Many patients look well. They don’t fit the picture of a typical cancer patient and may not have chemotherapy. This can lead to misunderstanding or dismissal, because others don’t realise how serious the disease is.
Limited awareness and lingering misconceptions can also make it harder to get physical and mental health support.
A delayed diagnosis can mean more severe symptoms and side effects, and ongoing treatment that is more complex. Many people are then faced with a life of regular surveillance, with frequent hospital visits and scans.
Fatigue, hormone-related symptoms, pain, and other complications can chip away at independence and quality of life. Some people can no longer work, while others struggle with everyday tasks like showering, cooking or leaving the house.
In their own words
Removing the tumours didn’t just save my life, it gave me back a sense of myself that I didn’t realise I had lost.
In March, Lou was tramping one of NZ’s toughest Great Walks. By April, twelve steps to her front door were a struggle. The cause: a 15 cm pancreatic NET, a second tumour on her kidney, and symptoms she’d spent years putting down to menopause.
I am not defined by cancer.
Suzanne was told she had small cell carcinoma. Months later, a second look at her biopsies revealed something far rarer: atypical pulmonary neuroendocrine carcinoma.
A clinician’s perspective
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A first-person piece from a New Zealand NET clinician, ideally someone who sits on the national NET MDM. This page is for what specialists see: the long road many patients take to a diagnosis, the relief of reaching a team that knows the disease, and living with a cancer that others cannot see.
Pull quote from the clinician perspective
Name · role · hospital or service
Symptoms checklist
Neuroendocrine cancer is often called ‘invisible cancer’ because symptoms are non-specific, affect multiple body systems, and are frequently misdiagnosed.
Look for patterns, not just individual symptoms.
Ongoing symptoms from more than one group? Ask your GP if neuroendocrine cancer has been considered.
Look beyond the Usual Suspects and consider neuroendocrine cancer in patients with unexplained, multi-system or treatment-resistant symptoms, particularly with repeat presentations.
Neuroendocrine Cancer New Zealand offers a medical education module “Not Your Usual Suspects” that is accredited by the Royal New Zealand College of GPs. neuroendocrinecancer.org.nz/knowledge-hub/gp-education
Who we are
Founded by a patient, to bring families and healthcare professionals together.
The leading voice for neuroendocrine cancer in New Zealand.
Donor funded by the generosity of our community.
Help us make the invisible visible
By raising awareness together, we can support earlier diagnosis and longer, better lives for patients all over New Zealand.
Earlier recognition means better outcomes for everyone, as well as our healthcare system.
The right diagnosis changes the question to what’s next: treatment, plans, life and ongoing support.
Share this report and symptoms checklist on social media, in GP practices, community centres, local services and workplaces.
Download the reportLearn the symptoms, print the checklist and share it with your GP practice, whānau and workplace.
See the symptomsDonate to support our work. We don’t receive any government grants or other funding and rely entirely on the generosity of our community to sustain and grow our services.
DonateSupporting people affected by neuroendocrine cancer is at the heart of everything we do. Visit our website today to find out more.
Visit our websiteQuestions, or want to know more? Get in touch with our team.
Sources
New Zealand incidence numbers. More than 400 diagnoses a year, around 4,000 people living with neuroendocrine cancer, and the comparison with ovarian, liver, oesophageal and brain cancer are awaiting a confirmed New Zealand source.
This report is a New Zealand adaptation of The invisible cancer, published by Neuroendocrine Cancer UK in 2026. With thanks to our colleagues there.
The full report as a landscape A4 PDF you can print or share.