Moving that dial towards better recognition for CCA …

Despite all the work AMMF has done over the years to raise the awareness of cholangiocarcinoma (CCA) – this disease with an increasing incidence and one of the worst prognoses out there – there remains a lack of awareness and little interest with those who have the power to move that dial and fully acknowledge CCA for what it is, and to improve the future for all diagnosed who remain under-represented and who lack access to the treatments and the care they deserve.

CCA is a primary liver cancer and is of no less importance than hepatocellular carcinoma (HCC), which is also a primary liver cancer but is most commonly being referred to when the term ‘liver cancer’ is used by the NHS and other organisations.

Why this lack of awareness and so little interest in CCA?  AMMF believes the answer lies with the lack of robust data – because what we see is considered just anecdote and opinion and that has no power to bring about change …

So back in 2018 AMMF decided, if the data isn’t there, we would get it ourselves and began the process of commissioning our own data project from Public Health England (now NHS England), and latterly with Health Data Insight. Then we would, at last, have that cold, hard data to use as ammunition in our work for CCA patients.

Regional variation in routes to CCA Diagnosis

Professor Shahid Khan and Professor Mireille Toledano, both of Imperial College London, have given major input to this work.   It taken a long time and much hard work, but this project has made some significant findings and resulted in three papers, the first of which, Regional variation in routes to diagnosis of cholangiocarcinoma in England from 2006 to 2017” was published in the World Journal of Gastroenterology1 on 28 June, 2023.  

This paper highlights that that almost half of those with CCA are diagnosed via emergency presentation, and there is significant regional variation.

Two other papers will follow shortly, “Cholangiocarcinoma Across England: a national study examining temporal changes in incidence and survival, and variation by region and deprivation” and “Geographical variation in Cholangiocarcinoma Treatment in England”.

This work now gives the cold hard data that cannot be ignored, and heralds a new AMMF campaign beginning soon for the better recognition of all those with CCA, to ask for improved diagnostic pathways and reduced variation, so that all with this most challenging cancer can receive the best advice and treatments in the most timely manner possible, which is absolutely what they deserve.

1World J Gastroenterol 2023; 29(24): 3825-3842 [DOI: 10.3748/wjg.v29.i24.3825]
To download a pdf of the paper, go to:

To read the paper in full:

Overview of AMMF’s CCA Data Project
To see Dr Sophie Jose giving an overview of AMMF’s CCA data project and its findings during her presentation at AMMF’s Conference 2023, click here

Further comment:
Interestingly, recent data appearing on the NHS Get Data Out website (01 June 2023) show the incidence of HCC in 2020 to be 2,796, with the incidence of CCA that same year to be 2,706 – yet CCA continues to be overlooked …

June 2023