Cholangiocarcinoma survival system

Who We Are:

A patient-led culture.
A living survival system in itself.
Built to outpace cancer.

We strip cancer of its complexity —
to unlock the power of the patient,
accelerate science,
and enhance survival.

Today. Not tomorrow.
That drives everything — that’s all that matters.

We Are You

We are you.
You fight to win — and so do we, with you.
That is our culture.

We lead from the battlefield —
shoulder to shoulder with patients and families.

That brings strategic clarity
to the frontline of this fight,
and to the boardrooms that support it.

Because we know this:
simplicity conquers cancer.

“Nature, to be commanded, must first be obeyed.”
— Francis Bacon

So it is with cholangiocarcinoma.
“To beat it, we as patients must first understand it.

Let’s break down this intimidating name:

• Chol → bile
• Angio → vessel or duct
• Carcinoma → cancer of the inner glandular lining cells

Cholangiocarcinoma = Cancer of the bile ducts.

Cholangiocarcinoma is often refered to as rare.
But its true definition is aggression, not rarity.

Incidence is climbing fast.
In the UK it has already surpassed liver cancer.
Soon, other regions will follow.

It begins in the liver’s biliary system.
Once established, it spreads quickly to other organs.

The primary locations

• Intrahepatic (iCCA): Inside the liver, within the smaller bile ducts.

• Perihilar / Hilar (pCCA):
  Where the right and left bile ducts join inside the liver to form the common hepatic duct.
  This “hilar region” extends downward until the cystic duct joins from the gallbladder — where it then becomes the common bile duct.

• Extrahepatic:

  • Distal (dCCA): In the common bile duct, closer to the pancreas and small intestine (often at or through the pancreatic head).

  • Cystic duct and gallbladder.

What’s been missing?
Clear systems. And a real understanding of this cancer’s impact.
– Prevention.
– Early detection.
– A survival model that patients can understand and act on.

Currently, the only system is for doctors to manage a patient’s decline.
Even after curative surgery — available to just 15% — decline is still the model.

Patients need more than care.
They need empowerment.
Empowerment built on simplicity, understanding, and clarity.
They need systems forged from lived expertise — experience turned into survival.

The way forward is to innovate our way out of this.

1. Upstream — prevention before tumours.
2. Downstream — survival with what we have now.
3. Post-diagnosis — identify and understand the underlying cause.

Ultimately, we are both responsible and accountable.
Never default resilience or critical thought to those not in our shoes.

Learn how you can get involved Light Australia Green initiative.

According to Cancer Australia, incidence of bile duct cancer is rising.