Patients with an 'invisible' form of cancer are being turned away by doctors and waiting years for a diagnosis, experts have warned. Neuroendocrine Cancer UK (NCUK) said there is an urgent need to speed up diagnosis of the disease, which affects more than 6,000 people a year in England.
Analysis by the charity found that rates of neuroendocrine cancer rose by 371 per cent between 1995 and 2018, compared to 116 per cent for other cancers excluding non-melanoma skin cancer. Diagnosis takes an average of four-and-a-half years, with nearly half of patients not diagnosed at first referral and 16 per cent returning more than 10 times before receiving answers.
Symptoms include unexplained weight loss, tiredness, pain, diarrhoea, bloating, wind, heartburn, asthma-like symptoms, a flushing rash, and a persistent cough. Common misdiagnoses include irritable bowel syndrome, asthma, or menopause, according to NCUK.
Lisa Walker, chief executive of NCUK, said: 'A key part of the challenge of neuroendocrine cancer is that it doesn’t align with the common cancer narrative many expect. 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.'
Professor Raj Srirajaskanthan, a consultant gastroenterologist at King’s College Hospital, noted that many patients undergo a 'long and circuitous journey' to diagnosis, often being misdiagnosed. He added that managing neuroendocrine tumours is 'often a marathon, not a sprint', with many patients undergoing treatment for over a decade.
Craig Spiers, 46, from Glasgow, said it took five years of GP appointments before he was diagnosed in 2013. He was told 'there was nothing wrong' and that it was stress from work. Gordon Brown, a GP from Ashby De-La-Zouch, said he 'missed' his own cancer due to seemingly benign symptoms. Professor Martyn Caplin of the Royal Free Hospital emphasised that faster diagnosis leads to more treatment options, even if the disease cannot be surgically removed.
