Patients with neuroendocrine cancer are waiting almost five years to be correctly diagnosed, according to a report published by Neuroendocrine Cancer UK. The delay means that by the time the disease is identified, it has often spread to several parts of the body, making treatment more difficult.
The charity's Seen Too Late report found that more than half of people in the UK with neuroendocrine cancer were initially told they had a different condition. For one in three, this happened more than once, and only one in four (24%) received the right diagnosis the first time.
Repeated GP visits and late diagnosis
Patients visit their GP an average of 11 times before receiving a neuroendocrine cancer diagnosis. Over half are diagnosed at an advanced stage (stages three and four), which limits treatment options and increases the physical, emotional and clinical burden of the disease.
Compared with a previous survey by the International Neuroendocrine Cancer Alliance (INCA) six years ago, there has been little progress in diagnosis times, with the average wait increasing by three months.
Calls for greater visibility
Lisa Walker, chief executive of Neuroendocrine Cancer UK, said: "Six years on people with neuroendocrine cancer are still waiting, on average, almost five years for the correct diagnosis."
She added: "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."
A major issue facing healthcare professionals is that 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. Neuroendocrine Cancer UK says clinicians need guidance, support and access to specialist expertise to help them recognise when a diagnosis needs to be reconsidered.
What is neuroendocrine cancer?
Neuroendocrine cancer begins in neuroendocrine cells, which are found throughout the body and can release hormones that regulate many body functions. When these cells become cancerous, they can grow in almost any organ. Symptoms vary greatly between people, making the disease hard to detect. Most neuroendocrine cancers tend to be slow-growing, but some forms can be aggressive and grow rapidly. The most common types originate from the gastrointestinal tract, pancreas or lung.
Most neuroendocrine cancers occur sporadically, meaning there is no known genetic link. However, a number of rare inherited genetic conditions may increase a person's risk of developing the disease.
Martyn Caplin, Professor of Gastroenterology and Neuroendocrine Cancer at the Royal Free Hospital (European Centre of Excellence), said: "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."
He added: "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, which is one person every 90 minutes. Although it is an umbrella term for a group of individually rare cancers, it is less rare than official data suggests.
There are two main subtypes: neuroendocrine tumours (NETs) and neuroendocrine carcinomas (NECs). Survival rates vary depending on the subtype, with NETs having higher survival rates. Approximately 70% of patients have NETs and 30% have NECs. A recent study 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.
A spokesperson for the Department of Health and Social Care said: "Neuroendocrine cancers have historically relied on multiple tests to identify the source of the disease, and that is one of the reasons why we have expanded our network of community diagnostic centres and rolled out special diagnosis pathways across England for patients with non-specific symptoms, to ensure we can accurately identify neuroendocrine and other cancers as early as possible."
The spokesperson added: "Through our National Cancer Plan, we will help every cancer patient get diagnosed earlier, start treatment faster and receive better support throughout their journey. That includes improving outcomes for people with rare cancers, with a dedicated chapter in the plan for rarer forms of the disease like neuroendocrine cancer."
