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Just Diagnosed With Bile Duct Cancer, Also Known As Cholangiocarcinoma?
Follow The Process ➤ Earlier understanding ➤ Avoid Common Mistakes ➤ Keep Options Open ➤ Improve Survival.
Cholangiocarcinoma Foundation Australia delivers a patient-led response and prevention system for bile duct cancer.
It helps patients and caregivers understand earlier, navigate more effectively, and preserve or potentially expand treatment options while they still exist.
But it does not end with today’s patient. We work back to the cause, so patients and their families can better understand what may have allowed this disease to form and help prevent tomorrow’s patients.
The Patient Survival System
Diagnosis ➤ Orientation ➤ Earlier Understanding ➤ Response ➤ Survival
Treatment is critical, but it is only one part of a cholangiocarcinoma response.
After diagnosis, patients need immediate orientation, clearer understanding, and faster action to keep options open.
CFA’s Patient Survival System helps patients and families move from diagnosis to Earlier Understanding, then from Earlier Understanding to effective survival response.
It works across two priorities:
➤ Improve today’s patient survival now
➤ Prevent tomorrow’s diagnosis
Understand
The Biliary System
Understanding → Effective Response
Many patients understand where their tumour is located. Few understand the biological conditions and failures that made it possible.
Yet it is within those conditions and failures that the disease begins, progresses, and shapes what happens next.
Most patients eventually ask three questions:
- Why did I get this cancer?
- Are my family at risk?
- What can I do to help beat this?
Understanding the conditions that made cancer possible provides advantages.
Why
This Foundation Exists
From our own experience with bile duct cancer, Claire and I came to recognise two silent gaps driving this cancer and its poor outcomes.
The first gap is between diagnosis and understanding how to respond.
The second gap is between cause and diagnosis.
The common failure point is the same.
Late or no understanding.
The Hero In The Hole
Picture this.
A hero is in a hole. They need a guide with a ladder.
Their family needs a bridge, so they do not fall into the same hole.
In this story
- The hero is the patient.
- The hole is the diagnosis.
- The guide is lived experience.
- The ladder is the process born of lived experience.
- The bridge is what prevents those who follow from falling in.
Today’s newly diagnosed patient needs a ladder to climb out.
Tomorrow’s patient needs a bridge, so the hole is seen earlier and avoided.
Both the ladder and the bridge are built from Earlier Understanding.
Earning Lived Experience
I lost my younger brother Graeme to cholangiocarcinoma in 2014. Then two years later, I fell into the same hole.
After 25 hours of life-threatening surgery that was considered successful, I quickly progressed to stage 4 disease, with large tumours across my liver, under my ribcage, and covering both lungs, leaving me with only weeks to live.
Genomic profiling was very new at the time, but it identified a mutation in my tumour that matched me to a new clinical trial, KEYNOTE-158.
When I was diagnosed just six months earlier, that opportunity did not exist.
That match, and our decision to act on it immediately, led to a complete response from a very late-stage setting.
That experience exposed the power of Earlier Understanding and effective action.
It also exposed how easily survival options can be missed before they are ever known.
Earlier Understanding
Earlier Understanding became the difference between options seen and options lost.
Claire and I could not walk away from what we had learned, or from the unexpected responsibility now in front of us.
So, after defeating cholangiocarcinoma, we began again.
Another difficult challenge.
We began building a foundation to help today’s patients do the same.
Building A Foundation
We built a patient-led foundation with two clear objectives:
- Help today’s patient survive now, not tomorrow.
- Help families understand cause earlier, so they do not become tomorrow’s newly diagnosed patients.
Our foundational model would be built on survival execution, not advocacy.
That was a very tough line in the sand for a patient and caregiver to draw.
But it was what was missing in this fight.
So we decided to be absolute about it.
Today’s survival and tomorrow’s prevention are what we execute.
That is why we focus and fund execution over advocacy.
Claire and I have a responsibility to execute what works now, today, so patients, families, supporters, and communities have a survival pathway to rally behind.
Steve Holmes
Why This Foundation Exists
From our own experience with bile duct cancer, Claire and I came to recognise two silent gaps driving this cancer and its poor outcomes.
The first gap is between diagnosis and understanding how to respond.
The second gap is between cause and diagnosis.
The common failure point is the same.
Late or no understanding.
The Hero In The Hole
Picture this.
A hero is in a hole. They need a guide with a ladder.
Their family needs a bridge, so they do not fall into the same hole.
In this story
- The hero is the patient.
- The hole is the diagnosis.
- The guide is lived experience.
- The ladder is the process born of lived experience.
- The bridge is what prevents those who follow from falling in.
Today’s newly diagnosed patient needs a ladder to climb out.
Tomorrow’s patient needs a bridge, so the hole is seen earlier and avoided.
Both the ladder and the bridge are built from Earlier Understanding.
Earning Lived Experience
I lost my younger brother Graeme to cholangiocarcinoma in 2014. Then two years later, I fell into the same hole.
After 25 hours of life-threatening surgery that was considered successful, I quickly progressed to stage 4 disease, with large tumours across my liver, under my ribcage, and covering both lungs, leaving me with only weeks to live.
Genomic profiling was very new at the time, but it identified a mutation in my tumour that matched me to a new clinical trial, KEYNOTE-158.
When I was diagnosed just six months earlier, that opportunity did not exist.
That match, and our decision to act on it immediately, led to a complete response from a very late-stage setting.
That experience exposed the power of Earlier Understanding and effective action.
It also exposed how easily survival options can be missed before they are ever known.
Earlier Understanding
Earlier Understanding became the difference between options seen and options lost.
Claire and I could not walk away from what we had learned, or from the unexpected responsibility now in front of us.
So, after defeating cholangiocarcinoma, we began again.
Another difficult challenge.
We began building a foundation to help today’s patients do the same.
Building A Foundation
We built a patient-led foundation with two clear objectives:
- Help today’s patient survive now, not tomorrow.
- Help families understand cause earlier, so they do not become tomorrow’s newly diagnosed patients.
Our foundational model would be built on survival execution, not advocacy.
That was a very tough line in the sand for a patient and caregiver to draw.
But it was what was missing in this fight.
So we decided to be absolute about it.
Today’s survival and tomorrow’s prevention are what we execute.
That is why we focus and fund execution over advocacy.
Claire and I have a responsibility to execute what works now, today, so patients, families, supporters, and communities have a survival pathway to rally behind.
Steve Holmes
