An international group of experts, including Professor John Bridgewater from UCL Cancer Institute, has issued a call for rapid improvements in the diagnosis, treatment, and research of cholangiocarcinoma, also known as bile duct cancer.
About Bile Duct Cancer
Bile duct cancer is a rare but serious disease originating in the tubes that transport digestive fluid from the liver to the intestines. These tumors often develop without symptoms, leading to late-stage diagnosis when treatment options are limited.
Approximately 3,000 individuals die from bile duct cancer in England each year. Up to 90% of patients are diagnosed too late for surgery, which is currently the only potential curative treatment. The disease has a one-year survival rate of approximately 25%. Incidence rates have been increasing, including among younger adults.
Bile duct cancer is a rare but serious disease, often developing without symptoms and leading to late-stage diagnosis, with up to 90% of patients diagnosed too late for surgery.
Call for Action and Priorities
The call for action was made through the publication of a consensus statement in Nature Reviews Gastroenterology & Hepatology. This initiative was led by researchers from the European Network for the Study of Cholangiocarcinoma (ENSCCA).
The international panel identified four central priorities to improve patient outcomes:
- Earlier diagnosis, achieved through increased symptom awareness and expedited referral pathways.
- Broader access to specialist surgery and dedicated cancer centers.
- Routine molecular (genetic) testing to facilitate matching patients with targeted treatments.
- Increased funding for research and clinical trials.
Molecular Testing and Recognition
The authors emphasized the importance of molecular testing, as certain newer targeted drugs and immunotherapies can extend patient life, but require knowledge of the cancer's specific genetic makeup.
Professor John Bridgewater stated that earlier diagnosis, improved access to specialist care, and routine molecular testing could significantly enhance survival. He noted that many patients in the UK receive diagnoses at advanced stages, stressing that faster diagnosis and equitable access to advanced testing and treatments should become national priorities.
Cholangiocarcinoma currently has one of the lowest survival rates among cancers. Symptoms can include jaundice, abdominal pain, weight loss, pale stools, and itching, which are often initially mistaken for less severe conditions.
These expert recommendations were developed through a Delphi consensus process, involving 147 international opinion leaders from 35 countries across various continents.