The number of neuroendocrine cancers diagnosed in the United Kingdom is rising sharply, yet the condition remains largely “invisible” due to significant diagnostic delays, according to patient advocacy groups and recent reports.
Neuroendocrine cancers (NECs) are rare tumors that develop from cells releasing hormones, appearing most often in the digestive system, lungs, and pancreas. You’ll see two main types: neuroendocrine tumors (NETs), which typically grow slowly, and neuroendocrine carcinomas (NECs), which are more aggressive. Approximately 6,000 people in the UK receive a diagnosis of neuroendocrine cancer each year, according to Neuroendocrine Cancer UK (NCUK).
However, diagnoses are often significantly delayed. An article published by The Independent on February 4, 2026, reported that it takes, on average, four and a half years to receive a diagnosis. Nearly half of patients are not diagnosed during their initial consultation with a doctor, and 16% require ten or more visits to obtain a definitive diagnosis.
This delay is attributed to the varied and often non-specific symptoms associated with NECs, which can mimic more common conditions. Patients frequently experience fatigue, pain, skin flushing, persistent cough, bloating, diarrhea, and unexplained weight loss. Symptoms can too be mistaken for asthma, irritable bowel syndrome, or menopause, leading to misdiagnosis.
The increasing incidence of NECs is also a concern. Between 1995 and 2018, cases rose by 371%, significantly higher than the average increase of 118% seen in other cancers – excluding non-melanoma skin cancer. Despite this surge, diagnostic progress has not kept pace.
Lisa Walker, Chief Executive of NCUK, emphasized the unique challenges posed by these cancers. “Neuroendocrine cancers don’t behave like other, more well-known cancers, and they don’t even resemble them,” she stated. Unlike some other cancers, NECs often require long-term management rather than a definitive cure, meaning patients frequently live with the disease for years.
The diagnostic delays not only cause distress for patients navigating ambiguous symptoms and medical results, but also allow the cancer to progress, potentially limiting treatment options and worsening outcomes. NCUK is urgently calling for accelerated diagnostic pathways for neuroendocrine cancer, given the increasing number of cases.
Cancer Research UK notes that tests are used to determine the type of neuroendocrine cancer and how far it has grown, aiding in treatment planning. Initial tests often involve blood tests and a physical examination conducted by a general practitioner, potentially followed by more specialized tests at a hospital.
