Cancer patients face an “isolating and frightening” battle for diagnosis that takes years, and then treatment often comes too late to save their lives, a charity is warning today. Apple co-founder Steve Jobs died of neuroendocrine cancer in 2011, and it killed snooker champion Paul Hunter back in 2006. And Neuroendocrine Cancer UK (NCUK) says it’s unacceptable that in the 20 years since the death of the snooker player, who was nicknamed the Beckham of the Baize, there have not been advances towards faster diagnosis.

Cancer patients often endure a long and daunting journey to diagnosis, with treatment frequently arriving too late to be life-saving, warns a charity today. Notable figures such as Apple co-founder Steve Jobs and snooker champion Paul Hunter, who was often dubbed the “Beckham of the Baize,” succumbed to neuroendocrine cancer in 2011 and 2006, respectively. Neuroendocrine Cancer UK (NCUK) highlights that despite the two decades since Hunter’s passing, significant progress in expediting diagnosis remains absent.

In England alone, over 6,000 individuals are diagnosed with neuroendocrine cancer annually, which equates to one diagnosis every hour and a half. Disturbingly, the average time to reach a diagnosis is 4.5 years. The charity emphasizes that delayed diagnosis is a major hurdle, with 16% of patients enduring over ten medical consultations before receiving an accurate diagnosis.

More than half of these cases are identified only when the cancer has advanced to stage three or four, severely restricting treatment possibilities and exacerbating the disease’s physical, emotional, and clinical toll.

In response to this alarming scenario, NCUK has introduced its report, “The Invisible Cancer,” on World Cancer Day (February 4), aiming to spotlight the need for better awareness and understanding of neuroendocrine cancer.

In an exclusive with the Daily Express, NCUK chief executive Lisa Walker remarked, “Most healthcare professionals lack training on neuroendocrine cancer, so it doesn’t even cross their minds.

“When assessing a patient, it’s not even a remote consideration. Recognizing neuroendocrine cancer as a serious and complex cancer is crucial, and both the public and healthcare professionals need to become more informed about it to understand its complexity and importance,” she added.

Ms Walker added: “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.”

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.

The most common symptoms of neuroendocrine cancer to be aware of include unintentional weight loss, increasing fatigue, pain, diarrhoea, bloating, wind, heartburn, asthma-like symptoms, flushing and a persistent cough. 

Professor Raj Srirajaskanthan, Consultant Gastroenterologist, King’s College Hospital (European Centre of Excellence) said: “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.

“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.

“The turning point occurs when they are finally referred to a specialist NET Centre. The relief is palpable. 

“Managing NETs is often a marathon, not a sprint. Many of my patients have been undergoing treatment for over a decade. This longevity brings its own challenges, like the “scanxiety” of regular check-ups. Because they often “look well,” my patients frequently battle the isolation of a hidden illness. Yet, witnessing their resilience as they navigate life is wonderful to observe.”

A Department of Health and Social Care spokesperson said: “This week we launched the National Cancer Plan which will look to improve outcomes for all patients including for those with rare cancers. This includes a commitment for 75% of patients to be cancer-free or living well after five years from 2035.

“We will supercharge care from diagnosis to treatment, from trials to state-of-the art technology and by making sure no matter where in the country you live or what cancer you have, everyone receives the best care possible.”