The international group of experts, including Professor John Bridgewater (UCL Cancer Institute), is calling for rapid improvements in diagnosis, treatment and research for cholangiocarcinoma, also known as bile duct cancer.
Bile duct cancer is a rare but aggressive disease that starts in the small tubes that carry digestive fluid from your liver to intestines. These tumours usually develop and progress silently, meaning most people are diagnosed at a late stage when treatment options are limited.
The call for action was made via the publication of a consensus statement in Nature Reviews Gastroenterology & Hepatology. It was led by researchers from the European Network for the Study of Cholangiocarcinoma (ENSCCA), a multidisciplinary network of biliary tract cancer experts.
Around 3,000 people die from bile duct cancer in England each year, making it one of the deadliest cancers despite its relative rarity. Up to 90% of patients are diagnosed too late for surgery, which is currently the only potential cure.
The disease has around a one in four survival rate one year after diagnosis. Incidence has been steadily rising, including among younger adults, placing growing pressure on NHS cancer services.
The international panel identified four central priorities for improving outcomes:
- Earlier diagnosis, through greater awareness of symptoms and faster referral pathways
- Wider access to specialist surgery and cancer centres
- Routine molecular (genetic) testing to match patients with targeted treatments
- Increased research funding and clinical trials
The authors emphasised that molecular testing is critical because some newer targeted drugs and immunotherapies can help patients live longer - but they can only be used if doctors know the cancer's specific genetic makeup.
Professor John Bridgewater, professor of medical oncology at the UCL Cancer Institute and consultant medical oncologist at UCLH, said: "Bile duct cancer remains one of the hardest cancers to treat. Earlier diagnosis, better access to specialist care, and routine molecular testing could dramatically improve survival. Too many UK patients are diagnosed when it is already too late. Faster diagnosis and fair access to advanced testing and treatments must become national priorities."
Cholangiocarcinoma has one of the lowest survival rates of any cancer yet remains under-recognised. Symptoms can include jaundice, abdominal pain, weight loss, pale stools and itching, but are often mistaken for less serious conditions.
The expert recommendations were formulated through a Delphi consensus process, involving 147 international opinion leaders from 35 countries across Europe, North America, Latin America, Asia, Africa and Oceania.
Professor Bridgewater is also supported by the National Institute for Health and Care Research (NIHR) UCLH Biomedical Research Centre. He added: "Behind the statistics are real people and families facing devastating news. We urgently need more research, awareness and NHS investment to change outcomes."
