Neuroendocrine Cancer Patients Face Years of Diagnostic Delays, Charity Warns
Patients suffering from what has been termed an "invisible" cancer are experiencing significant delays in diagnosis, with many being repeatedly turned away by medical professionals before receiving answers, according to a leading charity. Neuroendocrine Cancer UK (NCUK) has issued an urgent warning about the need to accelerate diagnostic processes for this complex condition, which affects more than 6,000 individuals annually in England alone.
Understanding Neuroendocrine Cancer
Neuroendocrine cancer represents a group of malignancies that originate in the nerve and gland cells responsible for producing and releasing hormones. The disease manifests in two primary forms: neuroendocrine tumours (NETs) and the more aggressive neuroendocrine carcinomas (NECs), which exhibit faster growth patterns. These cancers can develop in various parts of the body, including the stomach, bowel, pancreas, and lungs, presenting a diverse range of symptoms that often complicate diagnosis.
Alarming Diagnostic Statistics
Analysis conducted by NCUK reveals particularly concerning trends. Between 1995 and 2018, incidence rates of neuroendocrine cancer surged by an astonishing 371%, dramatically outpacing the 116% increase observed for other cancers during the same period, excluding non-melanoma skin cancer. The charity reports that diagnosis typically takes an average of four-and-a-half years, with nearly half of all patients failing to receive a correct diagnosis at their initial referral.
Even more troubling is that 16% of patients require more than ten medical consultations before obtaining definitive answers about their condition. This prolonged diagnostic journey has serious consequences, with over half of neuroendocrine cancer cases being identified only at an advanced stage, significantly limiting treatment options and potentially affecting outcomes.
The Challenge of Recognition and Misdiagnosis
Lisa Walker, chief executive of NCUK, emphasised the unique challenges presented by neuroendocrine cancer. "A key part of the challenge is that it doesn't align with the common cancer narrative many expect," she explained. "It doesn't act or look like more known cancers and unlike others, it isn't always about recovery or decline—it often requires people to live with it for many years. That is why we need a conversation that reflects the reality of the condition."
The disease presents with symptoms that are frequently mistaken for other common conditions. Patients may experience unexplained weight loss, persistent fatigue, various types of pain, diarrhoea, bloating, excessive wind, heartburn, asthma-like respiratory issues, a distinctive flushing rash, or a chronic cough. These manifestations commonly lead to misdiagnoses such as irritable bowel syndrome, asthma, or menopausal symptoms, according to medical experts.
Patient Experiences and Medical Perspectives
Craig Spiers, a 46-year-old from Glasgow, represents a typical diagnostic journey. It took five years of repeated GP appointments before he received a neuroendocrine cancer diagnosis in 2013. The father-of-two, who has cancer of the small bowel that has spread to his liver and caused cardiac complications, recalled: "These visits didn't get me anywhere and I was even told there was nothing wrong with me and that I had to go home and calm down as it was a result of stress from work. My cancer was invisible to the doctor."
Even medical professionals themselves are not immune to diagnostic challenges. Gordon Brown, a 62-year-old GP from Ashby De-La-Zouch, admitted to "missing" his own cancer diagnosis. "I had been experiencing many seemingly benign symptoms but I never thought they were a result of neuroendocrine cancer," he confessed. "I did go to the hospital a couple of times complaining about the abdominal pain and diarrhoea but no one did a scan. I'd ask my GP colleagues for advice but everyone, including myself, felt that the symptoms were not significant enough."
Expert Medical Commentary
Professor Raj Srirajaskanthan, a consultant gastroenterologist at King's College Hospital with extensive experience treating neuroendocrine cancer patients, offered a poignant perspective. "In my years as a NET clinician, I have sat across from thousands of patients, and while every story is unique, they often share a hauntingly similar prologue," he observed. "A large number have undergone a long and circuitous journey to their diagnosis, commonly being misdiagnosed with irritable bowel syndrome, asthma, or menopause. This period of 'not knowing' is often marked by a sense of being unheard, as patients struggle to reconcile their debilitating symptoms with 'normal' test results."
Professor Srirajaskanthan emphasised that managing neuroendocrine tumours represents "often a marathon, not a sprint," noting that many of his patients have been undergoing treatment for over a decade.
The Impact of Diagnostic Delays
Martyn Caplin, Professor of Gastroenterology and Neuroendocrine Cancer at the Royal Free Hospital, highlighted the critical importance of timely diagnosis. "Faster diagnosis can lead to more treatment options for patients, even if the disease cannot be removed surgically," he explained. "Smaller volumes of neuroendocrine cancer are generally easier to manage than a more advanced disease, and larger tumours are more likely to cause significant symptoms, regardless of where they are in the body. Delays increase both the physical and emotional toll on patients and limit clinical options."
Lisa Walker of NCUK summarised the urgent need for improvement: "Delays to diagnosis and inconsistent care cause serious and lasting harm. Precious time is lost, allowing the cancer to progress before people receive the treatment they need. Patients and families describe these experiences as isolating and frightening, leaving them without support when they need it most. This is unacceptable and requires urgent attention."
