bile duct cancer in canada: stats, survival rate and impact
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ultrasound of upper abdomen showing flow in common bile duct after use of colour doppler.
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cholangiocarcinoma, otherwise known as bile duct cancer, is the second most common form of liver cancer. that being said, it is rare among canadians. it affects the cells in the bile ducts, a connective group of tubes that transfer bile to and from various organs, including the liver, gallbladder, and small intestine.
studies into the prevalence of cholangiocarcinoma are limited in canada, but it has been found that the rare disease affects roughly 16 out of every one million people per year. the incidence rate compared to the five-year survival rate makes cholangiocarcinoma one of the more deadly cancers, even with new medical technologies surrounding cancer treatment.
the rate at which people survive this form of cancer depends highly on various factors, including how aggressive it is, the stage it is at when found, and unique characteristics that affect the individual who was diagnosed with the disease.
what is bile duct cancer (cholangiocarcinoma)?
bile ducts are required for the digestive system to perform its tasks without issue. bile fluid breaks down fats during the digestive process so that they can be used for nutrients or excreted from the body. when the cells within the bile ducts become cancerous, tumours can form. if left for too long, the cells can spread to other areas of the body. when that happens, it is referred to as metastatic cancer.
cholangiocarcinoma starts in the bile duct cells, located on the inner lining of the duct, known as the epithelium. this lining helps protect the ducts so they can safely move bile freely through the body to organs that require it. this type of cancer represents “only three per cent of all gastrointestinal malignancies,” according to literature.
there are two main types of cholangiocarcinoma: intrahepatic and extrahepatic. intrahepatic starts in the bile ducts located within the liver, and extrahepatic begins in the ducts outside the liver. the majority of cholangiocarcinomas are considered extrahepatic, and according to the canadian cancer survivor network, roughly 10 per cent of all bile duct cancers are intrahepatic.
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when a person develops this type of cancer, they can remain asymptomatic for some time. because of that, the prognosis of this rare disease is typically poor. when symptoms do develop, they can include:
- yellowing of the skin or eyes, a condition known as jaundice
- dark-coloured urine
- stool that looks like clay
- abdominal pain
- fever
- itchy skin
- nausea and vomiting
- unintentional weight loss
like other types of cancers, these symptoms are highly non-specific and can be attributed to many diseases, disorders, or conditions, making them even more challenging to diagnose. specialists will use various diagnostic processes, such as:
- physical exam and health history collection
- liver function tests
- blood tests
- imaging exams, such as ultrasounds, ct or cat scans, magnetic resonance imaging (mri), and magnetic resonance cholangiopancreatography (mrcp)
- biopsies
there are several risk factors associated with the disease as well. a risk factor does not guarantee a person will develop cholangiocarcinoma but indicates a higher likelihood of developing the disease in their lifetime. some risk factors center around diseases affecting the bile ducts, such as primary sclerosing cholangitis, while others include:
- chronic ulcerative colitis
- bile duct cysts
- chinese liver fluke parasite infections
people who fall into the category of high-risk may want to explore screening options because early diagnosis is vital in the case of cholangiocarcinoma. that is due to the highly negative outcomes people can expect when being diagnosed at a later stage.
bile duct cancer survival rate and new treatments in canada
according to the canadian cancer society, the five-year survival rate, which is “the probability of surviving cancer in the absence of other causes of death in the five years following diagnosis,” changes drastically depending on when the cancer is found.
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if treated during stage i, the localized stage where the cancer has yet to spread to any other areas, the five-year survival rate sits at 30 per cent. the regional stage, where the cancer has spread to nearby tissues and organs, drops the five-year survival rate to 24 per cent. if the cancer has spread to distant parts of the body, that rate drops to an alarming two per cent.
while new treatments in the cancer space continue to be found, treating cholangiocarcinoma can be futile for many diagnosed with the disease. currently, targeted therapies are being used the most to help improve outcomes for people with cholangiocarcinoma.
these therapies pick out the mutation in the cancerous cells and attack it in an attempt to kill the cells. one such drug is pemigatinib, which was approved by health canada in 2021 for a specific mutation of cholangiocarcinoma, but is only publicly reimbursed in quebec.
the u.s. food and drug administration have approved other treatments, such as ivosidenib, because of their efficacy against bile duct cancers, giving hope to the small population of bile duct cancer patients. this treatment is currently undergoing health canada review.
unfortunately, because of the progression of cholangiocarcinoma and its often late-stage discovery, people with cholangiocarcinoma that cannot be removed through surgery are likely to survive less than or equal to only 6-12 months after being diagnosed.
current bile duct cancer statistics in canada
current research surrounding the incidence rate of cholangiocarcinoma in canada has found that 0.35 persons per 100,000 are diagnosed with the cancer each year. with the canadian population sitting at roughly 38.25 million at the time of writing, that number comes out to 133.8 canadians per year being diagnosed with the disease. while that number is low, it doesn’t change the impact the cancer has on those affected and their loved ones.
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according to research regarding the global impact of cholangiocarcinoma, the incidence of this type of cancer is rising, as are death rates. statistics break up the death rates of cholangiocarcinoma in canada by type of cancer (extra- vs intrahepatic) and sex (male vs. female).
the research examined the mortality rates in canada from 2008 to 2018 and found that canada has seen increases in deaths caused by cholangiocarcinoma over the course of the decade in both sexes affected by intrahepatic cholangiocarcinoma. extrahepatic statistics have more of a back-and-forth, rising and falling throughout the years for both sexes. the last increase noted in the research happened between 2014 and 2016 for men and from 2016 to 2018 for women.
the age group most affected by cholangiocarcinoma is those over the age of 65, with two-thirds being diagnosed at that age or older. typically, people are diagnosed with extrahepatic at age 72 and intrahepatic at age 70. both sexes are affected, but it is “slightly more common in men than women.”
impact of bile duct cancer on canadian society
the lack of treatment options and high mortality rate associated with cholangiocarcinoma make it a difficult cancer to cope with. diagnosed canadians have very few options to turn to, and in all cases, what they do have access to means the difference between life and death. according to the canadian cancer society, “there is an urgent need for new and innovative treatments for people with btc (bile tract cancers), and immunotherapy has shown promising results.”
while new therapies do provide some hope, a lack of research and—up until recently—funding for rare diseases such as cholangiocarcinoma make it challenging to pinpoint how canada is affected overall. people know how this type of cancer is affecting them individually, but because the numbers are so low, the impact on society is also unremarkable.
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the government pledged $1.5 billion in funding toward the rare disease space in canada last year. still, any movement in the right direction has yet to occur regarding solidified plans medical decision-makers are implementing to make fundamental changes in the lives of canadians affected by cholangiocarcinoma.
the future of bile duct cancer in canada
in the spring of 2023, it was announced that a $7.4 million grant from the canadian cancer society and the canadian institutes of health would bring cellular immunotherapy to people with cholangiocarcinoma. this grant was designed to support an initiative known as the canadian cholangiocarcinoma collaborative, an approach intended to “provide equitable access to new treatment options” for bile duct cancers.
to test the new therapy, the initiative helped start a new clinical trial at the ottawa hospital and centre hospitalier de l’université de montreal. according to surgical oncologist dr. rebecca auer, “cellular immunotherapy such as car t-cell therapy has been a game-changer for people with blood cancer, and solid tumours are the next frontier.”
this clinical trial could change how people recover from cholangiocarcinoma if the results are promising enough. as of writing, there is no news as to when the trial will finish or whether or not the results can provide hope to canadians diagnosed with cholangiocarcinoma in their lifetimes.
given the high mortality rate and the rapid increase in research, the hope of those involved in the fight against cholangiocarcinoma is that new treatments, more funding, and higher levels of research can give people diagnosed with the cancer a better and more positive outcome.
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