New data reveals significant increase in highly lethal type of liver cancer, with over half of NHS patients not given any of the treatments currently available
At the start of this year’s Liver Cancer Awareness Month, senior doctors in the NHS are joining cancer patients and their families in supporting a call to Rethink Liver Cancer in response to research findings published in a new White Paper by UK charity, AMMF - The Cholangiocarcinoma Charity .
British fashion designer Dame Zandra Rhodes is among the patients lending AMMF their support, having been diagnosed herself with cholangiocarcinoma (also referred to as bile duct cancer or CCA) - a little-known primary liver cancer with an increasing incidence and one of the worst prognoses of any cancer.
The new research findings are the result of a four-year study of NHS data on circa 50,000 patients . Commissioned and funded by AMMF - the only charity in the UK solely dedicated to supporting people with CCA - The Cholangiocarcinoma Data Project was carried out by teams at NHS England and Health Data Insight CIC, in collaboration with partners at Imperial College, London. It is the first study of its kind in England, offering previously unavailable insights into the experiences and outcomes of NHS CCA patients.
AMMF’s ‘Rethink Liver Cancer’ White Paper addresses some important misconceptions about cholangiocarcinoma – a cancer that is frequently missed and misunderstood - and provides concrete evidence for why there is an urgent need to improve the way this often lethal cancer is diagnosed and treated, including:
Cholangiocarcinoma is a growing, untargeted problem. New evidence demonstrates that incidence is rising significantly, with patient numbers increasing to rates that are similar to the other, more well-known type of primary liver cancer - hepatocellular carcinoma (HCC). Figures recently published by the NHS  show the number of CCA cases diagnosed in 2020 in England (2,706) were almost the same as HCC (2,792).
Incidence is rising - the number of cases has more than doubled. There has been an increase in the number of cases diagnosed per year in England from 1,165 in 2001 to 2,635 in 2019 . For years, prior to AMMF’s research, national estimates were inaccurate, regularly describing the incidence of CCA cases as involving fewer than half as many cases.
It is affecting more younger people. Contrary to the commonly held misconception that CCA is a disease of the elderly, the data project found that over 20% of patients were under 65 years old when diagnosed – reflecting what AMMF sees every day as the charity supports increasing numbers of CCA patients in their 20s, 30s, 40s and 50s whose lives are being cut short by this devastating disease.
It has an appalling survival rate, with no improvement in mortality in decades. The survival rate for ‘liver cancer’ generally (13%) is already one of the worst for cancers, but the five-year survival rate for CCA in Europe is even worse (6-9%) and drops further still (2%) for some types that are not caught early. Between 2001 and 2018, 78.1% (31,411) of deaths due to biliary tract cancers (which include gallbladder cancer, ampullary cancer and CCA) in England were due to CCA, with the number of deaths doubling over the same period. Increasing mortality, in parallel with incidence, shows that mortality rates have not improved over time, unlike other cancers, emphasising the urgent case for improving diagnosis and treatment options for growing numbers of people with CCA.
Worryingly, more than half of the patients studied (50.5%) were given none of the treatments currently available for CCA (including surgery, chemotherapy and stent insertion). And only 21% of people with a recorded stage of cancer at diagnosis during 2014-17 were found to have been diagnosed with an early-stage tumour (stage 1 or 2) - a figure far short of the 54% that applies generally across other cancers diagnosed early at stage 1 or 2 in England; and way below the 75% target the UK Government has committed to for diagnosing all cancers at stage 1 and stage 2 by 2028 .
Shahid Khan, Professor of Hepatology at Imperial College London and Imperial College NHS Trust, who worked with AMMF on the four-year deep dive of NHS data, said:
“AMMF’s Data Project has confirmed what specialists like me have known for some time: incidence of cholangiocarcinoma is much higher than previously thought by most people; and those with the disease are often diagnosed too late for effective treatment.
“Early signs can be vague and appear non-urgent, so will only trigger a rapid referral if GPs and other health professionals have raised awareness of this type of liver cancer and have access to knowledge that supports its earlier diagnosis and management. That’s why the Rethink Liver Cancer message is so important - because a missed early diagnosis significantly reduces the chances of potentially life-saving surgery, which is currently the only potential cure for CCA.
“It’s also crucial that hospital teams have the right guidance to refer patients with a CCA diagnosis on to see a specialist. AMMF has had many patients relate that they were told ‘nothing can be done’, without being offered the option of a second opinion via referral to a specialist with expert knowledge and experience of CCA. Even when surgery is not an option, there are several other types of CCA-specific treatment which can help to control symptoms and delay progression of the cancer – and in some cases, may help to make surgery a possibility further down the line.”
Dame Zandra Rhodes credits a rapid referral by her doctor and speedy access to treatment for her survival past the initial six-month prognosis she was given back in 2020:
“Getting the right advice and access to treatment early is so important for people with cholangiocarcinoma. I was lucky in that my doctor referred me for a scan and I was able to start chemotherapy and immunotherapy quickly. To hear that over half of people with a cholangiocarcinoma diagnosis are not given any treatment at all for their cancer is worrying.”
AMMF’s research found that the numbers of patients who were given access to surgery and chemotherapy varied significantly between NHS England’s 21 Cancer Alliances and decreased sharply with increases in a patient’s age and deprivation status. Mortality rates were found to be almost 40% higher for the most deprived patients compared to the least deprived; and significant geographical variation in CCA incidence exists, with northern Cancer Alliances showing the highest rates and London Alliances among the lowest.
By far the most common route to diagnosis across England (50%) was people having their CCA discovered as an emergency, usually with severe symptoms or complications associated with a late diagnosis, rather than through the more managed system of earlier detection via their GP and the Two Week Wait urgent referral system for cancers. This emphasises the very poor rate of early diagnosis and late presentation of symptoms that the overwhelming majority of people with CCA experience.
AMMF’s Chief Executive, Helen Morement, hopes that the recommendations put forward in AMMF’s White Paper will help policy planners and NHS services to prioritise change:
“A key barrier to securing greater institutional support has been the lack of robust data to back up what we have been witnessing – that numbers of new cases of cholangiocarcinoma are rising, including among younger people; that there’s significant variation in the way this primary liver cancer is diagnosed and treated; and that early diagnosis and survival rates are not improving, in fact they are considerably worse than for other cancers.
“Without that robust data, what we are seeing every day is just considered anecdote and opinion, and cholangiocarcinoma as a primary liver cancer has been overlooked. That’s why AMMF funded this research - to provide strong, credible data to confirm what we are seeing and to provide the ammunition to ask for change. We believe it’s now time to rethink liver cancer to ensure that cholangiocarcinoma is not missed, misdiagnosed or managed too late, and to help create a more equal playing field for better health outcomes for people with cholangiocarcinoma across the UK.”
To find out more about AMMF’s Rethink Liver Cancer campaign and download the charity’s White Paper visit www.ammf.org.uk/rethink-liver-cancer
Notes to Editors
 ‘Rethink Liver Cancer - For better understanding, diagnosis and treatment of the primary liver cancer, cholangiocarcinoma’, AMMF, October 2023. Press copies available on request.
 'Cholangiocarcinoma in England - a national study examining temporal and regional variation in incidence, diagnostic routes, treatment and survival' Shahid A Khan, Daniela Tataru, Helen Morement, Sophie Jose, Amy Zalin-Miller, Lizz Paley, Craig Knott, Mireille B Toledano, Tracey Genus.
 NHS data published in June 2023
 Data provided by the National Cancer Registration and Analysis Service, NHS England
 NHS 2023/24 priorities and operational planning guidance, January 2023
Press contact: Martha Robinson E: firstname.lastname@example.org M: 0330 133 1229
Patient case study and AMMF spokesperson interviewees: available on request
When AMMF www.ammf.org.uk was set up in 2002 by Helen Morement as the Alan Morement Memorial Fund, it was the world’s first charity dedicated solely to cholangiocarcinoma. Today, the charity is officially ‘AMMF - The Cholangiocarcinoma Charity’, a registered Charitable Incorporated Organisation, and works across the UK, Europe and globally with medical and scientific experts and patient groups.
Historically, the term ‘liver cancer’ has been mostly used and understood by the public and in our health services to mean only one type of the disease - hepatocellular carcinoma (HCC) - when there are, in fact, two quite different forms of primary liver cancer.
Cholangiocarcinoma (bile duct cancer or CCA) is less well known, harder to diagnose, has significantly worse survival rates and receives less focus and investment. Unlike HCC, where 9 out of 10 patients also have a history of cirrhosis and the cancer can be screened for, many people with CCA do not have a history of liver disease at all, or any other obvious cause of disease, and their cancer often presents without any clearly identifiable symptoms until its advanced.
That’s why AMMF is asking the public and health professionals across the UK to ‘rethink liver cancer’ so that it is no longer a term that only applies to HCC. Thinking CCA will help more people to spot and diagnose cases of CCA earlier, more of the time.
Signs and symptoms of cholangiocarcinoma:
• In its early stages, there are few obvious CCA signs and symptoms and those that do occur (malaise, fatigue and weight loss, pale stools, dark urine and itching) are non-specific to CCA and can 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 (yellowing of the skin and eyes, dark urine, pale stools, and sometimes itching) due to the cancer blocking the flow of bile, is the commonest symptom. Jaundice is the most obvious and visible symptom associated with liver disease, both cancerous and benign.
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