World Neuroendocrine Cancer Day · 10 November 2026
Misdiagnosed. Misunderstood. Managed too late.
How New Zealand can do better for the thousands of Kiwis living with neuroendocrine cancer. An earlier diagnosis means earlier treatment, more options and more years lived well.
The full report
Twenty pages, A4 landscape, to print or share. The symptoms checklist also prints on its own.
Executive summary
Every year, more than 550 people in New Zealand are diagnosed with neuroendocrine cancer5 – that’s more than the number diagnosed with ovarian, liver, brain or stomach cancer each year.
All over New Zealand, Kiwis with neuroendocrine cancer symptoms are visiting a doctor an average of nearly twelve times before anyone puts the pieces together.2
Neuroendocrine cancer is often mistaken for everyday conditions, and many people wait years for the right answer.
Plenty of people look well even with advanced cancer, so their symptoms get brushed off or underestimated.
Even when the cancer has spread, there are treatments that can improve symptoms and extend life.
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. All over New Zealand, Kiwis with neuroendocrine cancer symptoms are visiting a doctor an average of nearly twelve 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 irritable bowel syndrome, asthma, anxiety and menopause. It’s easy to miss.
Neuroendocrine cancer is often mistaken for everyday conditions, and many people wait years for the right answer.
It doesn’t help that the disease can be invisible. Plenty of people look well even with advanced cancer, 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, with many treatments not publicly funded in New Zealand.
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 every patient 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 extend life. We hope this report brings some clarity and hope to anyone facing multiple misdiagnoses, cancer that has already spread, and limited treatment options.
Foreword
It doesn’t have to be this way. Neuroendocrine cancer doesn’t have to be invisible.
Since 2012 Neuroendocrine Cancer New Zealand (NECNZ) has walked alongside people living with neuroendocrine cancer, and the whānau, friends and carers who support them. We listen to their experiences, share their stories, and provide information they can trust. We also push for change to get better diagnostics, new treatments and locally-led research. We are grateful to the healthcare professionals with specialist knowledge of neuroendocrine cancers, who are behind us every step of the way. 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 nearly five years on average to get a correct diagnosis.1
Delays, misdiagnoses, and inconsistent care cause serious and lasting harm. Precious time is lost while people live with crippling symptoms and the cancer keeps progressing when they should be getting the diagnosis and 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. It doesn’t have to be this way. Neuroendocrine cancer doesn’t have to be invisible.
Late diagnosis means advanced disease and more complex treatments. This takes a toll on patients and their whānau, and on our health system too. That’s why we need to make neuroendocrine cancer more visible. Better understanding leads to earlier diagnosis, more chance of a cure, and more time with loved ones.
This World Neuroendocrine Cancer Day, we’re raising awareness so New Zealanders can be diagnosed sooner, get timely treatment and the support they desperately need. Let’s make this invisible cancer visible.
Dr Michelle Sullivan Chief Executive, Neuroendocrine Cancer New Zealand
A clinician’s foreword
Dr Veronica BoyleEndocrinologist at Waikato & Auckland City hospitalsCo-Chair, National Neuroendocrine Cancer Multidisciplinary Meeting (NET-MDM)Medical Advisor and Board member, Neuroendocrine Cancer New Zealand
As an endocrinologist my work is focused on the body’s chemical messengers: hormones. There are many different hormones doing many different roles to keep the body running smoothly. In a patient with neuroendocrine cancer, that system can be thrown into chaos.
Many of my patients tell me they’ve spent years feeling unwell while looking perfectly fine.
Neuroendocrine cancers arise from hormone-producing cells, and many of them release hormones in excess. The result can be flushing, diarrhoea, palpitations, wheezing, and overwhelming fatigue, symptoms that can be relentless and life-limiting. Yet from the outside, so much of this is invisible. Symptoms that come and go are easily mistaken for more common conditions. Commonly requested blood tests can look unremarkable, and special tests are usually needed to make the diagnosis. Many of my patients tell me they’ve spent years feeling unwell while looking perfectly fine. These hormonal signals are subtle, and it often takes a multidisciplinary approach to decipher what’s happening in the body.
Through my research I’m looking for ways to better understand what these tumours are doing and why, so we can recognise the earliest hormonal clues, treat symptoms more effectively, and give patients answers sooner. But this is an uncommon cancer so we often miss out on the big research funding that goes to more familiar ones. In that sense, they’re hidden in another way: overlooked by the very systems that could help us understand them better.
Our patients live with a cancer that is invisible to the people around them, producing symptoms that are invisible to the naked eye, and too often invisible to the funding that could change things. That’s why I keep pushing to shine a spotlight on neuroendocrine cancers – so that what is hidden today can be seen, understood and treated much sooner.
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.
The right diagnosis changes everything. New Zealand has a world-leading national NET MDM to help clinical teams all over the country answer the question of what’s next for treatment, care plans, and on-going support.
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.
With the help of NECNZ advocacy, 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
Earlier diagnosis is a major challenge and access to therapies that could slow progression and ease symptoms can also be a hurdle, with many treatments not publicly funded in New Zealand.
Any patient anywhere in the country can have their case referred to the NET MDM by their specialist or their GP.
The basics
Neuroendocrine cancers begin in neuroendocrine cells, which are found all over the body. These cells release hormones that help regulate many bodily functions. Cancer can occur if these cells are damaged so that they grow, divide and multiply without restraint.
Most neuroendocrine cancers start from accumulated cell damage rather than being passed down from parents. However, there are a few rare inherited conditions that can raise someone’s risk of developing a neuroendocrine cancer. The most common place for neuroendocrine cancers to start is in the gut, pancreas or lungs.
There are many different symptoms. The most common are unexplained weight loss, 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
For neuroendocrine tumours, 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.
For neuroendocrine carcinomas, 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 symptoms.1
For 15% of patients, it takes more than ten years to get a correct diagnosis.1
More than 550 New Zealanders are diagnosed every year with neuroendocrine cancer.5
An estimated 3,000 Kiwis are living with neuroendocrine cancer in New Zealand at any one time.6
On average patients make 11.8 doctor visits 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.
Consequences of misdiagnosis
Every missed or delayed diagnosis carries consequences. For patients and families it means months or years of unmanaged symptoms and uncertainty. For our healthcare system it means mounting costs of repeat appointments, scans and referrals.
Clinical impact
By the time a diagnosis is reached, more than half of patients will 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 higher costs for our public health system. UK research tells us that the cost of treating a patient at Stages 3 & 4 is approximately £200,000 – £300,000 higher than treatment at Stages 1 & 2.7 Earlier diagnosis reduces the toll on patients and the 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 refuse to allow this cancer to dominate my life though some days it is difficult… 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
Dr Jane ReeveRadiologist, Allevia Radiology & Te Toka Tumai Auckland HospitalMember of the National NET MDMBoard member, Neuroendocrine Cancer New Zealand
Radiologists play a key role in diagnosis, figuring out what is going on with a patient based on a combination of their presenting symptoms and our imaging findings. To correctly diagnose a patient, we need to first spot an abnormality and then combine the constellation of findings to reach a most likely diagnosis.
If we can continue to increase awareness amongst all doctors, including GPs and radiologists, I really believe we can improve the outcomes for patients with NET.
The challenge of neuroendocrine tumours is that the symptoms are often vague and non-specific, and the imaging findings also can be subtle and extremely varied. Neuroendocrine tumours can arise in many different parts of the body, and their appearance will differ depending on both where they arise and their grade, which dictates their rate of growth and degree of aggressiveness. Low grade tumours will often grow extremely slowly or show no visible growth between scans, an imaging finding which in medicine usually indicates a benign, non-cancerous process. High grade tumours, conversely, will often show rapid, aggressive growth, which can look indistinguishable from other types of cancer. So, while there are some “typical” appearances for neuroendocrine tumours, compared to many other cancers, the range of possible imaging findings is varied and broad.
Sometimes when a patient is diagnosed with a NET, we can look back at earlier scans and, knowing where to look, we can see signs that a NET was present. At the time, those scans were read carefully and appropriately, and that change simply wasn’t distinguishable from normal. This isn’t about anyone missing something. It’s about the limits of what our current imaging technology can show us.
Technology will continue to improve but one of the key factors in speeding up diagnosis is awareness. As a radiologist with a particular interest in NET imaging, I see a lot more of these scans than other radiologists, and so the patterns of NET disease are more familiar and recognisable to me. It’s really satisfying when I get to report an initial scan for a patient with an undiagnosed NET and can make the right diagnosis straight away, putting them on the path to appropriate and timely treatment. Over the 12 years I have been involved with the NET MDM, I have seen a huge increase in radiologists’ awareness of NETs, which has led to the diagnosis being suggested more quickly and more often than previously. If we can continue to increase awareness amongst all doctors, including GPs and radiologists, I really believe we can improve the outcomes for patients with NET.
Diagnoses in New Zealand
Our work is more essential than ever.
252 registrations in 2013
553 registrations in 2023
Counts are registrations, one for each registered tumour, not unique people. All ages. Death-certificate-only registrations are excluded.
| Year | Registrations |
|---|---|
| 2004 | 125 |
| 2005 | 126 |
| 2006 | 122 |
| 2007 | 135 |
| 2008 | 145 |
| 2009 | 147 |
| 2010 | 189 |
| 2011 | 203 |
| 2012 | 206 |
| 2013 | 252 |
| 2014 | 309 |
| 2015 | 316 |
| 2016 | 365 |
| 2017 | 377 |
| 2018 | 386 |
| 2019 | 422 |
| 2020 | 462 |
| 2021 | 451 |
| 2022 | 483 |
| 2023 | 553 |
Source: Te Aho o te Kahu Cancer Control Agency, New Zealand Cancer Registry data using the QPI codes for neuroendocrine cancers (analysis published November 2026).5
Symptoms checklist
Neuroendocrine cancer is often called an ‘invisible cancer’ because symptoms are non-specific, affect multiple body systems, and are frequently misdiagnosed.
Look for patterns, not just individual symptoms.
If you have ongoing symptoms from more than one group, ask your GP if neuroendocrine cancer has been considered.
Consider if a neuroendocrine cancer diagnosis might fit unresolved or unexplained symptoms. Think beyond the Usual Suspects.
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
The national charity dedicated to helping people with neuroendocrine cancer
Founded by a patient, to bring families and healthcare professionals together.
A voice for everyone living with neuroendocrine cancer in New Zealand.
Donor funded by the generosity of our community.
With greater awareness, we can achieve faster diagnosis, improve outcomes and make better use of New Zealand’s healthcare resources. This report represents an important step towards better outcomes for everyone affected.
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.
If you have ongoing symptoms from more than one group, ask your GP if neuroendocrine cancer has been considered.
An earlier diagnosis means earlier treatment, more options and more years lived well
Earlier recognition means better outcomes for everyone, as well as our healthcare system.
Share this report and symptoms checklist on social media, in GP surgeries, 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.
DonateContact us to learn more about how supporting 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 comparison. The comparison with ovarian, liver, brain and stomach cancer is from Health New Zealand’s Cancer Web Tool. Accessed November 2026. www.healthnz.govt.nz/about-us/health-data/data-sets-and-collections/cancer-data-and-statistics/cancer-web-tool and tewhatuora.shinyapps.io/cancer-web-tool/
Some images are illustrative. 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.