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What are the main symptoms of and outlook (prognosis) for cholangiocarcinoma (CCA)?

What are the main symptoms of and outlook (prognosis) for cholangiocarcinoma (CCA)?
The symptoms of CCA can be hard to recognise and are sometimes mistaken for other conditions. For this reason, it is difficult for doctors to diagnose CCA early. This often leads to late diagnosis, when the disease is already at an advanced stage1,2
What are the main symptoms of CCA?
The type of CCA you have may also affect the types of symptoms you experience1–3
Percentage 9 out of 10

Approximately 9 in 10 people (90%) with perihilar or distal CCA have painless jaundice (no abdominal pain), where the skin and/or the whites of the eyes become a yellowish or greenish colour

Percentage 1 out of 10
With intrahepatic CCA, only approximately 1 in 10 (10–15%) people have jaundice

Percentage 3 out of 10

Approximately 3 in 10 people (20–40%) have non-specific symptoms that lead to their CCA being diagnosed in the course of unrelated tests

Non-specific symptoms of CCA may include:1,2,4,5
abdominal pain
Abdominal pain (pain in the area between the chest and pelvis)
night sweats
Feeling unusually hot or sweating during the night (night sweats)
Feeling of extreme tiredness and lack of energy (fatigue)
Feeling of discomfort associated with an urge to vomit (nausea)
Feeling of physical weakness and lack of energy(asthenia)
Difficulty in maintaining weight (anorexia)
General feeling of discomfort or illness (malaise)
weight loss
Unintentional/unexplained weight loss
Increase in body temperature (fever)
What is the outlook (prognosis) for people living with CCA?
The prognosis for CCA depends on multiple factors. How these factors can impact life expectancy will be different for each person. Factors that affect prognosis may include:1,2,4,6,7
Your doctor will request a scan, such as CT (computerised tomography) or MRI (magnetic resonance imaging). This will help to show the location of the cancer
Your doctor/healthcare team will assess whether surgery is an option to remove the cancer from your body. However, approximately 7 in 10 people with CCA have advanced disease at diagnosis and are not eligible for surgery
Your doctor will assess:
  • Your performance status. This is a standardised way to measure how a condition is impacting a person’s functioning, such as their ability to care for themself, perform daily activities and do physical exercise
  • Your medical history and other conditions you may currently have
  • How well your liver is working using blood tests. These can help diagnose and monitor liver disease or damage (if present)
The CT or MRI imaging scan(s) will help to determine the size of the tumour(s) and if they have spread to nearby or distant body parts. Staging is defined by the TNM (tumour, lymph node, metastases) system, which is a standardised method for defining the extent of spread of cancer. The TNM system is specific for each type of CCA
Your doctor may request a small sample of the cancer (biopsy) to look for specific gene changes. This is because people who have CCA and specific gene changes may be able to receive certain treatments that target these changes
A healthy lifestyle, including eating a balanced diet and being physically active, may also affect your outlook. Your overall health may allow you to cope better with your cancer and treatment
New treatments are being developed to try and improve prognosis for people with CCA. These potential treatments are being assessed in clinical trials
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