Understanding Cholangiocarcinoma: A Rare Cancer – World Cancer Day 2025

 Understanding Cholangiocarcinoma: A Rare Cancer – World Cancer Day 2025

Dr Esra Hassan – Research Fellow in Cancer

4th Feb 2025

It is World Cancer Day—a global initiative to raise awareness, improve education, and drive action on cancer. But this day also falls within Cholangiocarcinoma Awareness Month, a time dedicated to increasing recognition of bile duct cancer, one of the rarest and most aggressive cancers. Despite its severity, it remains under-recognised, often diagnosed too late for curative treatment.

Let’s take a moment to understand cholangiocarcinoma, recognise its symptoms, and explore why early detection and research are critical. Awareness can save lives.

What is Cholangiocarcinoma?

Cholangiocarcinoma is a malignant tumour originating in the bile ducts, the small tubes that carry bile from the liver and gallbladder to the intestines. It accounts for approximately 3% of all gastrointestinal cancers and has an incidence rate of 1-2 cases per 100,000 people annually. In 2019, cholangiocarcinoma was the cause of 2,754 deaths in England alone.

While bile duct cancer, is considered rare, worldwide it is the second most common primary liver cancer.  It is difficult to diagnose accurately and early, so by the time of diagnosis it is often too advanced for surgery – which is currently the only potential cure. Although most cases occur in people over 60 years of age, this disease appears to be increasing across all age groups including younger people. The cause of this ongoing rise is currently unknown.

The cancer is categorised by its location into three main types based on where it starts:

Intrahepatic – inside the liver (accounts for 10-20% of cases)

Perihilar (hilar) – where the bile ducts exit the liver (accounts for 50-60% of cases)

Distal – near the pancreas and small intestine (accounts for 20-30% of cases)


Stages of Cholangiocarcinoma

Most cases are diagnosed at later stages because symptoms like jaundice, weight loss, and abdominal pain often appear only when the cancer has progressed.

Cholangiocarcinoma is staged using the TNM staging system (Tumour, Node, Metastasis). Early-stage cancers (Stages I and II) are localised, while advanced stages (III and IV) involve lymph node spread or distant metastases. Unfortunately, more than 70% of cases are diagnosed at Stage III or IV, significantly limiting treatment options.

Why Does Early Detection Matter?

Like many cancers, early diagnosis means better survival. But cholangiocarcinoma is often diagnosed at an advanced stage, when surgery—the only potential cure—is no longer possible.

📊 If caught early (Stage 1), up to 30% of patients survive 5 years after surgery.

📊 For advanced stages, survival is often less than 1 year.

Who is at Risk?

Risk factors for cholangiocarcinoma include Chronic bile duct inflammation (e.g., primary sclerosing cholangitis), have certain medical conditions, such as abnormal bile ducts, and ulcerative colitis. However, many patients present with no known risk factors, making universal screening unfeasible. Instead, improving awareness of symptoms could help patients seek care sooner.

Symptoms to Look Out For

Early symptoms can be vague, but being aware of them could help people seek medical advice sooner. If you or someone you know experiences these symptoms persistently, it’s worth seeing a doctor.


Most people don’t experience symptoms until the cancer is quite advanced, but here are key warning signs:

⚠️ Jaundice – Yellowing of the skin and eyes (a sign that bile flow is blocked).

⚠️ Unexplained weight loss – Losing weight without trying.

⚠️ Abdominal pain – Especially in the upper right side.

⚠️ Dark urine and pale stools – Due to bile duct blockage.

⚠️ Itchy skin – Caused by bile build-up in the bloodstream.

Tests for bile duct cancer

🩸 Blood tests – These check liver function and look for signs of bile duct blockage or tumour markers.

🖥 Scans – Imaging tests like ultrasound, CT scans, or MRI scans help doctors visualise the bile ducts and surrounding organs. Sometimes, an endoscopic ultrasound (EUS) is used, where a small camera is passed into the body via the digestive tract.

🧪 Biopsy – A small sample of cells from the bile ducts is collected and examined under a microscope to check for cancer. This can be done during an ERCP or through a needle biopsy guided by imaging scans.

📡Endoscopic Retrograde Cholangio-Pancreatography (ERCP) – This specialised test uses an endoscope (a thin, flexible tube with a camera) to examine the bile ducts.

📷 Percutaneous Transhepatic Cholangiography (PTC) – A special type of X-ray where a fine needle is inserted through the skin into the liver to inject contrast dye, making the bile ducts visible on X-ray images. This helps detect narrowing or blockages caused by cancer.

A combination of these tests is usually needed to confirm a diagnosis and determine the best treatment approach.

Current Treatment Landscape

Treatment options for cholangiocarcinoma depend on the stage of diagnosis:

💊 Surgery – Surgical resection offers the best chance of a cure but is possible for fewer than 30% of patients, as most are diagnosed too late. Procedures include Liver resection for intrahepatic tumours and Whipple procedure for distal tumours.

💊 Chemotherapy – For advanced or unresectable cancers, standard treatment for advanced cases to help slow progression is chemotherapy. Gemcitabine and cisplatin are the standard first-line treatments, offering a median survival of 11.7 months.

💊 Targeted therapies – New drugs designed for tumours with specific genetic mutations (e.g., FGFR2 inhibitors). Drugs include pemigatinib and infigratinib for tumours with specific genetic mutations.

💊 Immunotherapy – An emerging area of research showing promise. Trials of checkpoint inhibitors like pembrolizumab have shown promise.

💊Photodynamic therapy (PDT): This uses light-activated drugs to kill cancer cells and relieve symptoms.

Advances in Research and Early Detection

Research is moving toward personalised medicine, where treatments are tailored to the genetic and molecular profile of a patient’s tumour. For example, testing for mutations in IDH1, BRAF, or FGFR2 helps identify candidates for targeted therapies. However, we are not there yet. Early detection remains the biggest challenge. Blood biomarkers like CA 19-9 and CEA are commonly used but lack specificity. Novel biomarkers and imaging techniques, like contrast-enhanced MRIs, are being developed to improve diagnostic accuracy.

🚀 More research funding is needed to improve early detection and treatment.

🩺 Greater awareness among both doctors and the public can lead to faster diagnosis.

❤️ Better support for patients and families facing this rare cancer is crucial.

Raising awareness is the first step toward change. Here’s how you can help:

Share the symptoms – Someone might recognise symptoms earlier.

Encourage screening – People with risk factors (e.g., liver disease) should speak to their GP.

Advocate for policy changes: Push for more funding into early detection and innovative treatments.

#WorldCancerDay #BileDuctCancer #CholangiocarcinomaAwareness #CholangiocarcinomaAwarenessMonth - Written with the assistance of AI

In memory of Helena West

The Cholangiocarcinoma Charity - https://ammf.org.uk/ 

Comments

Popular posts from this blog

What is Cancer? A Public Science Explainer Series

The Integration of artistic modalities for advancing Health care and Ageing