The Rethink Liver Cancer White Paper

AMMF commissioned and funded a study, using data from over 50,000 biliary tract cancer patients within the NHS in England.

Carried out by NHS England and Health Data Insight CIC (HDI) in collaboration with partners at Imperial College, the research findings provide concrete evidence supporting the urgent need to improve how cholangiocarcinoma is diagnosed and treated.

These findings include:

• Cholangiocarcinoma is a growing, untargeted problem. New evidence demonstrates that this cancer is no longer as rare as previously considered, with patient numbers almost doubling to rates similar to the other, better-known type of liver cancer – hepatocellular carcinoma (HCC). For years, national estimates have been inaccurate, regularly describing the incidence of cholangiocarcinoma as involving fewer than half as many cases.

• More than half of those diagnosed with cholangiocarcinoma were given no cancer treatment at all. The numbers of patients who were given treatment, and the types of treatment they received, varied significantly according to where in the country they lived.

• There have been no improvements in cholangiocarcinoma survival rates in decades and people from the most deprived backgrounds were found to be almost 40% less likely to survive after diagnosis compared to the least deprived.