Family,  Health

World Cholangiocarcinoma awareness day 2019

I’ll pretty much guarantee that 95% of you haven’t heard of cholangiocarcinoma or realised that it had its own awareness day. I wish I had never heard of it, beyond all my hopes, wishes and dreams as cholangiocarcinoma took my Dad away from me and my family, March 26th 2018. How I wish the name wouldn’t feel synonymous and almost part of my Dad, but now I hear that word I know what it does and what it did to us.

As today is world cholangiocarcinoma awareness day, I felt it important to share the signs and symptoms of this horrible, relentless diseases that took my dad.

What is it?

Cholangiocarcinoma is a primary cancer in the bile duct and impacts on the bilary system as it can be located in the small vessels of the liver, the n vessel inside the liver or on the outside where the bile drains. The liver is one of the most important and complex organs in the body and bile helps with digestion. This cancer is usually diagnosed following problems with weight loss, digestion and jaundice due to the build of of bile in the body.

What are the symptoms

Sadly, like many agreessive and hard to treat cancers, the symptoms often appear long after the tumour is unable to be treated on or has metastasised (spread) around the body. This makes prognosis extremely poor.

Symptoms that can be present are –

  • yellowing of the skin and whites of the eyes – this is jaundice
  • reducex appetite and weight loss
  • pale stools and dark urine 
  • Very itchy skin due to increased bile salts
  • Constant tiredness and feeling unwell 
  • tummy (abdominal) pain and swelling (this can dramatically increase in later stages)
  • a dull ache in the upper right hand side of their tummy 
  • Chills, shivering or a high temperature
  • Reflux and trapped wind


Treatment is often very limited due to the cancer not being found before it advances to far within its stages.

It is normally incurable.

Surgery is only suitable for a small about of people as the cancer is squally too advanced or the patient is too ill. This is the only way to completely remove the cancer, however there is a high recurrence rate.

A stent can be inserted to help bile drain and stop the duct being blocked, which can receive the jaundice and swelling.

Chemotherapy and radiotherapy can relieve symptoms and reduce the tumour growing but this is only suitable for patients who are well enough – usually due to weight loss and other complications from the cancer this isn’t an option for many.

This cancer is rare and very little is known. Awareness is still very little so it’s important to me to get the word out there and also spread the symptoms, being caught sooner increases the success of treatments.

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