The 6 signs of ‘hard to spot’ bile duct cancer that kills majority of patients within a year
FOR the 6,000 people in the UK who are newly diagnosed with bile duct cancer every year, the prognosis is uniquely grim.
According to data from Cancer Research UK, up to 70 per cent of all these patients will die within just 12 months.
This is quite a stark figure, especially when all cancers are considered, the one-year survival rate is now over 70 per cent.
This is partially due to the fact bile duct cancer is notoriously tricky to spot, which is why it’s called a ‘silent cancer’.
Game of Thrones actor Ian Delder passed away at the age of 74 in 2024, after a five-month battle with the disease.
Bile duct cancer, or cholangiocarcinoma, is a rare cancer that develops in the bile ducts, which connect the liver and gall bladder.
These small tubes are essential for the digestive system, helping transport bile to break down fats.
The disease often hides until it’s advanced by which point it’s often inoperable – and therefore terminal.
But it does have symptoms – they are just very subtle at first and there isn’t much awareness around them.
While we know to look for obvious symptoms like lumps, there are lesser-known signs that could point to this deadly cancer.
Symptoms can include:
- Unusual tiredness
- Pain under ribs
- Stomach pain
- Loss of appetite
- Fever or vomiting
- Weight loss
Jaundice (yellowing of the skin/eyes), which can trigger itchy skin, pale stools and dark urine, usually developed once the disease has reached a more advanced stage.
If you have symptoms of bile duct cancer that don’t improve, ask your GP to run a liver-function test.
NEW TREATMENT
Doctors in the UK are hoping to transform the lives of people with deadly bile duct cancer.
A new study – which has shown promising early results – matches the patient’s tumour to one or more of seven key medicines to drive the disease back.
Some people on the drugs have seen their cancer go into remission, while others have had previously inoperable cancer become suitable for surgery.
Doctors say the study will lead to a set of new standards for treating the disease, which currently kills the majority of patients in around a year.
The UK arm of the international work is being run by University College London Hospitals (UCLH) and University College London (UCL), where around 40 people have so far received treatment.
Who’s at risk of bile duct cancer?
Anyone can develop bile duct cancer, but some people are at higher risk.
This includes:
- Older adults: Bile duct cancer is more common in people over 65
- Chronic liver disease patients: Conditions like cirrhosis or hepatitis B and C increase the risk
- People with primary sclerosing cholangitis (PSC): This is a rare liver disease that affects the bile ducts
- Smokers: Smoking is linked to a higher risk of bile duct cancer
- Those with a history of bile duct stones: Long-term inflammation from bile duct stones can raise the risk
- Family history: A family history of bile duct cancer or other cancers can increase your risk
- Those with diabetes: People with diabetes (type 1 or type 2) have been found to have a higher risk of bile duct cancer.
- Alcohol: People who drink alcohol are more likely to get intrahepatic bile duct cancer. The risk is higher in those who have liver problems from drinking alcohol
Having a risk factor, or even many risk factors, does not mean that a person will get the disease.
And many people who get the disease have few or no known risk factors
Source: American Cancer Society
Overall, the study aims to recruit 800 people from all over the world.
In the new study, patients diagnosed with the three main types of bile duct cancer (intrahepatic, perihilar or distal cholangiocarcinoma) or with cancer of the gallbladder could be eligible to take part in the SAFIR-ABC10 trial.
They will have their tumours genetically profiled and will then be offered one or more of seven different anti-cancer therapies best matched to their tumour.
UCLH consultant medical oncologist and UCL Cancer Institute clinical researcher Professor John Bridgewater said: “With the current standard of care, patients typically only live for one year after treatment begins.
“It has become increasingly more urgent for us to try to identify more innovative and effective alternative treatment options.
“This is the first precision medicine study for patients with cancer in the biliary tract and the first time this patient group will be offered these anti-cancer therapies.
“Genomic profiling of patients has been possible for some time but, in the past, there was little we could do with the results of this profiling.
“The SAFIR ABC10 study resolves this problem by providing seven different therapies which we can match up with the specific ‘targets’ found in each patient’s tumour.”
Prof Bridgewater said the outlook for bile duct cancer patients can be poor and people are often “extremely unwell” at the point their cancer is discovered.
He said that data suggests up to 50 per cent of patients “get absolutely no treatment”.
However, he said that for “some of the patients that we will be able to identify as part of this study, the outlook can be incredibly good – several years, if not more, of extremely good quality of life survival, even if your cancer is incurable.
“That’s the goal for at least some of our patients and that’s what we’re aiming towards.”
Prof Bridgewater said he hopes the new study will show medics and patients that a lot can be done for this type of cancer.
While the drugs may extend lives, some of them have been shown in preliminary work to “offer long-term remission of five years or more, which, by Cancer Research UK guidelines is a cure,” he said.
“The outcomes can be extremely good, even if not a cure,” he added.
“We know because we’ve done it in preliminary studies that, because some of these new treatments work so well, at least some of these patients are converted from being inoperable to operable.”
The new trial will build on earlier research to introduce the drugs at the point treatment starts.
At least two of the drugs have passed medical approval and the hope is the study will strengthen the case for more to be used in the NHS.
Prof Bridgewater said a key part of the study is genetic profiling before treatment begins, adding that the current NHS genetic profiling of tumours is “lamentable”.
PEOPLE CAN LIVE LONGER
The new trial will involve giving people chemotherapy and the drug durvalumab.
One or more of the following drugs will also be offered depending on the genetic profile of the tumour: futibatinib, ivosidenib, zanidatamab, trastuzumab, neratinib, encorafenib and binimetinib.
Dr Tayyaba Jiwani, science engagement manager at Cancer Research UK, which is backing the study, said: “The outlook for people with biliary tract cancers is often poor, because they are typically diagnosed late, with few treatment options other than chemotherapy.
“There is a pressing need for new treatment avenues and, through SAFIR ABC-10, we’re proud to support one of the first precision medicine trials for biliary tract cancers.
“With trials like this, we’re accelerating the development of more personalised, genetically targeted treatments that are more likely to be effective against cancer, so that more people can live longer, better lives free from the fear of this disease.”
Around 5,000 to 6,000 people every year are diagnosed with bile duct cancer but medics suspect the true figure is higher.
The number of deaths each year is roughly the same.
Ronald Glover, 76, from Chislehurst, south-east London, began treatment on the trial in July under the care of Prof Bridgewater.
He said he suffered “no side-effects at all”, with his first scan showing the treatment had cut his tumour in size by 36 per cent.
The second phase of treatment involved 20 weeks of the drug ivosidenib.
“After about six weeks, I had another CT scan which found that my tumour had shrunk down to 30mm, now almost 50 per cent down from the initial measurement,” Mr Glover said.
“I am now eight months down the line, fit and well, and have another scan at the end of this month”.