Delays limit treatment options for neuroendocrine cancer, warns Charity
This World Neuroendocrine Cancer Day 2026, the charity Neuroendocrine Cancer UK has launched a new report, highlighting that on average people in the UK wait almost half a decade (4.7 years) to be diagnosed with neuroendocrine cancer.
The report, ‘Seen Too Late’, features the findings from the latest Support, Care and Needs (SCAN) survey – an international survey led by the International Neuroendocrine Cancer Alliance (INCA) – which found that more than half of people (51.9%1) in the UK were initially told they had something else. For one in three, this happened more than once and only one in four (24%) received the right diagnosis the first time. Six years on from the previous survey, there has been little progress in diagnosis times as the average wait has increased by three months, further limiting people’s treatment options.
Delayed diagnosis remains one of the most significant challenges for this ‘invisible cancer’. Six years on, neuroendocrine cancer is still too often missed, misdiagnosed and misunderstood and people are waiting longer. Patients visit their GP an average of 11 times before receiving a neuroendocrine cancer diagnosis. Over half are diagnosed at an advanced stage (Stages 3 & 4), limiting treatment options and increasing the physical, emotional and clinical burden of the disease.
Rachel Wood, 55 from Shropshire, has neuroendocrine cancer in her small bowel that has spread to her liver and bones, says: “My metastasised liver tumour was found incidentally during an ultrasound. For me, invisibility of the disease meant that in the eighteen months it took to reach a diagnosis, neuroendocrine cancer was never considered, because none of the clinicians responsible for me had heard of it. Countless blood tests, two MRIs, a CT scan and two PET scans all failed to identify it, because my consultant didn’t know which specialist diagnostics to use. With no awareness of the disease, time and resources were wasted, and my peace of mind and outcomes suffered. An unrecognised cancer requires the patient to navigate their own way through a system that cannot see what is wrong.”
This is not about blaming individual healthcare professionals. Neuroendocrine cancer can be difficult to recognise. Symptoms can vary and mimic other common conditions such as IBS, asthma, anxiety and menopause, making it harder for patients to be heard and for clinicians to reach a timely diagnosis. But clinicians need guidance, support and access to specialist expertise to help them recognise when a diagnosis needs to be reconsidered and further investigation may be needed.
While effective treatments exist, prolonged diagnostic delays and inconsistent referral pathways mean too many patients are unable to access specialist care. Reflecting this, the majority of UK respondents (72%) identified better understanding of neuroendocrine cancer among healthcare professionals as a way to improve their experience.
Martyn Caplin, Professor of Gastroenterology and Neuroendocrine Cancer, Royal Free Hospital (European Centre of Excellence), says: “Delayed diagnosis is not simply a matter of waiting longer for answers. The sooner a patient is diagnosed, the more treatment options are available, even if the cancer cannot be removed surgically. Neuroendocrine cancer can be challenging to recognise, and no clinician can be expected to know everything. But when symptoms persist, or the explanation does not fit, we must remain open to other possibilities and ensure that specialist advice and appropriate diagnostic investigations are accessible.
Six years on, these findings should prompt us to reflect on why meaningful progress remains so elusive. Patients shouldn’t have to become experts in their own cancer to be heard. Sometimes, the most important question is simply: what else could this be? Patients deserve answers sooner. We must do better.”
Every year, more than 6,000 people in England are diagnosed with neuroendocrine cancer – that’s one person every 90 minutes. Although neuroendocrine cancer is an umbrella term for a group of individually rare cancers, it is less rare than official data suggests.
There are two main subtypes of neuroendocrine cancers: neuroendocrine tumours (NETs) and neuroendocrine carcinomas (NECs). Survival rates vary depending on which subtype a patient has with NETs having higher rates of survival. Approximately 70% of patients have NETs and 30% have NECs. In a recent study2, it was found that for small intestine NETs, five-year survival was 86% when diagnosed at stage 1, compared with 43% at stage 4. For pancreatic NETs, it was 87% at stage 1 compared with 26% at stage 4.
Lisa Walker, CEO of Neuroendocrine Cancer UK, says: “Six years on people with neuroendocrine cancer are still waiting, on average, almost five years for the correct diagnosis. That is far too long. Patients should not have to wait years for their cancer to be recognised, navigate disconnected services or repeatedly explain their history to different professionals.
Our Seen Too Late report highlights the need to make neuroendocrine cancer more visible. That means recognising it sooner, ensuring timely access to specialist expertise and making sure care is joined up around the person, wherever they are in the system.”
Encouragingly, the report also highlights that specialist expertise already exists across the UK, with dedicated healthcare professionals and services working to improve care for people affected by neuroendocrine cancer. More than six in ten people in the UK who took part in the survey had seen a neuroendocrine tumour (NET) clinical nurse specialist in the previous 12 months, more than twice the global figure. The challenge is to make neuroendocrine cancer easier to recognise, make specialist knowledge more accessible and ensure that care is better connected. The charity has a Symptoms Checklist which can be found here.
