Warning over frightening 4 year battle for cancer diagnosis | UK | News

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.

Every year, more than 6,000 people in England are diagnosed with neuroendocrine cancer – that’s one person every 90 minutes. But it takes an average of 4.5 years to be diagnosed. The charity says delayed diagnosis remains one of the most significant challenges, with 16% of sufferers having more than 10 medical appointments before they get the correct diagnosis.

And more than half are diagnosed when their cancer has reached stage three or four, limiting treatment options and increasing the physical, emotional and clinical burden of the disease.

To highlight this shocking state of affairs and to call for greater recognition and understanding of neuroendocrine cancer, NCUK has launched its The Invisible Cancer report on World Cancer Day (February 4).

Speaking exclusively to the Daily Express, NCUK chief executive Lisa Walker said: “Most healthcare professionals don’t have any training on neuroendocrine cancer, so it’s not even on their radar.

“When they are seeing a patient, it’s not even at the back of their head. It’s not even a consideration. So it feels like the first step is very much about neuroendocrine cancer being recognised as the cancer and as a complex cancer that we want people and healthcare professionals to be aware of, so they can learn more about it and recognise that it is a complex cancer.”

Symptoms of neuroendocrine cancer can vary and mimic other common conditions such as IBS, asthma, anxiety and menopause. This means it is often essentially invisible until it reaches a late stage.

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.