Urgent call to improve survival for bile duct cancer patients

Leading international experts, among them UCLH and UCL’s Professor John Bridgewater, are calling for urgent action to improve outcomes for people with bile duct cancer.

The experts have warned that outcomes for people with bile duct cancer, also known as cholangiocarcinoma, remain poor, and call for urgent improvements in diagnosis, treatment and research.

The call was made with the publication of a consensus statement in Nature Reviews Gastroenterology & Hepatology ahead of World Cholangiocarcinoma Day today.

It was led by researchers from the European Network for the Study of Cholangiocarcinoma (ENSCCA), an internationally recognised, multidisciplinary, and collaborative network in the field of biliary tract cancers.

Bile duct cancer, also known as cholangiocarcinoma, is a rare but aggressive disease that is increasing in the UK. Because symptoms are often vague or mistaken for other conditions, most people are diagnosed at a late stage, when treatment options are limited.

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.

Only around one in four people survive for a year after diagnosis, far worse than for most other cancers. Incidence has been steadily rising, including among younger adults, placing growing pressure on NHS cancer services.

The international expert panel identified major 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 stressed that molecular testing is critical, as new targeted drugs and immunotherapies can significantly extend survival for some patients — but only if their cancer’s genetic profile is known.

Professor Bridgewater, a consultant medical oncologist at UCLH and professor of medical oncology at the UCL Cancer Institute 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.”

“Behind the statistics are real people and families facing devastating news. We urgently need more research, awareness and NHS investment to change outcomes,” said Prof Bridgewater, who is also supported by the National Institute for Health and Care Research (NIHR) UCLH Biomedical Research Centre.

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, underscoring the global relevance and broad scientific consensus achieved.