AMMF’s New Awareness Campaign:

Recognising cholangiocarcinoma (bile duct cancer) as a form of liver cancer is a simple but vital reference point for policymakers, health professionals and the wider public to unite around tackling the growing threat presented by this poorly known disease with one of the worst survival rates of any cancer.

AMMF’s Rethink Liver Cancer campaign is committed to highlighting that cholangiocarcinoma (CCA) is a primary liver cancer that – although almost equal in incidence to the far more widely recognised primary liver cancer, hepatocellular carcinoma (HCC) – is less well known, harder to diagnose and overwhelmingly diagnosed late.

AMMF believes it’s time to Rethink Liver Cancer – for a game-changing increase in awareness and understanding of cholangiocarcinoma.

The sooner there is more awareness and a better understanding of cholangiocarcinoma, especially amongst healthcare professionals, the earlier diagnosis can be made, and then patients will receive the treatments they desperately need in a more appropriate and timely way.

Look out for #RethinkLiverCancer campaign news and updates on this page and via AMMF’s social media.

“I had never heard of cholangiocarcinoma when I was diagnosed and didn’t realise that it is a type of liver cancer which is occurring increasingly frequently, including among younger people.

“AMMF’s Rethink Liver Cancer campaign is helping to support and educate everyone with the power to improve early detection, ensure more effective treatment and, ultimately, find a cure for this devastating disease.”

Dame Zandra Rhodes

It’s time to rethink liver cancer to ensure that CCA is not missed, misdiagnosed or managed too late, and to help create a more equal playing field for improving diagnosis, treatment and survival rates, in line with improvements for many other cancers.

AMMF’s Cholangiocarcinoma Data Project and White Paper

To support the call to Rethink Liver Cancer, AMMF has commissioned and funded a four-year, first of its kind 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, London, the new research findings underpin AMMF’s new white paper, which addresses some important misconceptions about cholangiocarcinoma and provides concrete evidence for why there is an urgent need to improve the way this cancer is diagnosed and treated, including:

• It is a growing, untargeted problem. New evidence demonstrates that CCA is no longer as rare as previously considered, with patient numbers almost doubling to rates that are similar to the other, more well-known type of liver cancer – hepatocellular carcinoma (HCC). For years, national estimates have been inaccurate, regularly describing incidence of CCA as involving fewer than half as many cases.
• More than half of those diagnosed with CCA 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 which part of the country they lived.
• There have been no improvements in CCA survival rates in decades and people from the most deprived backgrounds were found to be almost 40% less likely to survive after a CCA diagnosis compared to the least deprived.

AMMF’s White Paper

Backed by the findings of the CCA data project, AMMF’s white paper, ‘Rethink Liver Cancer’ calls for better understanding, diagnosis and treatment of the primary liver cancer, cholangiocarcinoma.  To download, click here

Cholangiocarcinoma, pronounced ‘kol-an-gee-oh-car-sin-oh-ma’, is:

• Rising sharply in incidence, with significant increases in the number of cases recorded in the UK, Europe and across the world.
• No longer a disease of the elderly. More and more cases are being diagnosed in adults of working age, and we don’t know why.
• A disease with one of the worst survival rates of any cancer. The 5-year survival rate of 6-9% for CCA in Europe drops to 2% for some types that are not caught early (across all cancers in England, 5-year survival is 54%).
• Potentially curable if caught early. Surgery (liver resection) is currently the only potentially curative treatment.
• Difficult to spot early due to signs and symptoms that can be vague and non-specific to CCA.
• Mostly diagnosed late and as an emergency via A&E. More needs to be done to help diagnose cholangiocarcinoma at a much earlier stage.
• Often missed, misdiagnosed and managed too late. That’s why AMMF is asking everyone with the power to create change to Rethink Liver Cancer.

What is Liver Cancer?

Did you know that there are two types of primary liver cancer?

• The type that starts in the liver tissue itself – its medical name is ‘hepatocellular carcinoma’ (HCC).
• The type that starts in the bile ducts (tubes) – within the liver or outside the liver – its medical name is ‘cholangiocarcinoma’ (CCA) and it is also referred to as ‘bile duct cancer’.

Most people, including doctors and other health professionals, frequently use the term ‘liver cancer’ to mean only the first type – HCC. This can be confusing as it omits the fact that cholangiocarcinoma is also a primary liver cancer. It is important that CCA is as clearly sign-posted as possible because, unlike HCC, it is a disease without a ‘standard’ patient.

9 out of 10 patients with HCC also have a history of cirrhosis (liver disease) and cancer screening is in place for this well-defined disease and cohort of patients. CCA often occurs in those who do not have a history of liver disease. It is also, increasingly, a disease of all ages, with few known risk factors, and it can present without any clearly identifiable symptoms at all until its advanced stages.

What is cholangiocarcinoma?

Cholangiocarcinoma is a complex and challenging cancer with increasing global incidence and death rates over the last decades.

It is a primary liver cancer and is the world’s second most common primary liver cancer after hepatocellular carcinoma (HCC).

The exact causes of cholangiocarcinoma in the Western world are unclear and it is likely that a combination of different risk factors contribute to the disease. To date, most cases in the Western world occur without a known cause or identifiable risk factor.

Click here to read: Fast Facts About Cholangiocarcinoma

What are the symptoms of cholangiocarcinoma?

9 out of 10 patients with HCC have a history of cirrhosis (liver disease) and a well-defined pattern of symptoms like jaundice (yellowing of the eyes and skin, although skin yellowing may be less obvious in people with darker skin types). People with cholangiocarcinoma (CCA) often do not have a history of liver disease, or any other clearly identifiable symptoms until its advanced stages.

In its early stages, there are few obvious CCA signs and symptoms and those that do occur (such as weight loss, general malaise, fatigue and only slightly abnormal liver function tests) can be non-specific to CCA and occur from other cancerous as well as non-cancerous causes in that area, such as gallstones and inflammation of the bile ducts.

In advanced CCA, as well as non-specific symptoms, jaundice is the most common symptom (yellowing of the eyes and skin – although skin yellowing may be less obvious in people with darker skin types), dark urine, pale stools, and sometimes itching due to the cancer blocking the flow of bile. Jaundice is the most obvious and visible symptom associated with liver disease, both cancerous and benign.