Listen: 14:55 Minutes:
The Deep Dive Podcast, with hosts Rivi and Todd, summarised our story
Steve Holmes
My Stage IV Cholangiocarcinoma Story
The Survival That Started The Work
My survival became the beginning of the work, not the end of the story.
I survived an exceptionally aggressive cholangiocarcinoma diagnosis involving major multi-organ surgery, a near-fatal rupture of my main hepatic artery, approximately 25 hours of life-threatening surgery, widespread metastatic recurrence across my liver and lungs, and a late-stage decline measured in weeks, if not days.
Then, when every option had run out, a new opportunity appeared through the recently approved KEYNOTE-158 clinical trial.
Three days after my first infusion, the severe tumour-related pain suddenly disappeared. The laboured, painful breath-by-breath struggle was over. I could sit up on my own again. I stood up and could move freely. In fact, I walked outside into the sunshine.
It was a moment where the experience exceeded my words for it.
Something dramatic had changed, extraordinarily quickly.
Weeks later, the scans confirmed a full and complete response.
That alone makes this an unusual story. But the real significance is what happened next, because my survival did not simply give Claire and me our life back. It changed the direction of it.
My younger brother Graeme had faced the same cancer only a two years earlier.
Graeme died. I had survived.
I have spent the years since trying to understand that difference and put everything we have learned from it to work.
From Person To Patient
I have been married to Claire since 1989 and we have two children. We are both from Waikanae, a small seaside town on New Zealand’s North Island, and later moved our family to Main Beach on the Gold Coast in Queensland.
I was fit, active and a committed road cyclist. Then, in late October 2016, I was on a normal Saturday morning coffee ride between Main Beach and Burleigh when, about a kilometre into the ride, a sudden wave of weakness came over me. It felt like the onset of a bad flu, but I knew something was not right, so I pulled out of the ride and went straight home.
By the next day, my eyes had begun to yellow. My hands were itchy and yellow, my stools had become pale and clay-coloured, and my urine was dark.
Claire turned to Google and said, “There must be something wrong with your liver.”
She booked me in with our local doctor first thing Monday morning.
Blood tests showed elevated liver enzymes. An ultrasound followed, then a CT scan immediately after, which identified a blockage in my bile duct. An ERCP was arranged and a small brushing was taken from inside the duct.
The brushing confirmed it.
I had bile duct cancer. Cholangiocarcinoma.
The gravity of it did not really land until Claire and I sat in the surgeon’s consult room. She began explaining a major operation called a Whipple and talking through what was going to happen. At some point she realised Claire and I were not following the conversation in the way she expected.
She stopped.
“Has no one explained to you that you have cancer?”
I replied nervously, “No.”
Claire and I looked at one another. Our eyes welled up.
She explained that I had extrahepatic distal cholangiocarcinoma in the lower bile duct, where it passes through the head of the pancreas. Without surgery I had less than six months to live.
And this was the same cancer that had taken my younger brother Graeme.
That night one thought flashed through my mind:
“Just yesterday, I was a person. Today I am a patient. I must become the best patient I can be, so that I can become that person again.”
I am still not sure why that thought came to me, but I wrote it down. Looking back, writing it down gave it life.
That was the point where I shifted from reacting to responding.
Claire shifted with me. She became my caregiver, although neither of us yet understood what that role would require.
When Graeme had been diagnosed, cholangiocarcinoma was unfamiliar to all of us. There was no practical guidance around him, no experienced patient network showing us how to respond, and no real understanding of such a rare and aggressive cancer.
He trusted the system available to him.
He died.
When the same diagnosis came for me, I knew one thing immediately:
I could not remain passive inside a system that had no answer.
The Whipple, Then Seconds From Death
On 8 December 2016 I underwent the Whipple.
It was enormous surgery. Major parts of my biliary and digestive system were removed and reconstructed, including my bile duct, gallbladder, duodenum, eighty percent of my stomach, the head of my pancreas and surrounding structures and lymph nodes.
I went into hospital with cholangiocarcinoma and came out physically changed.
The surgery achieved clear margins. That was the result we needed, but the operation had taken just about everything my body had to give.
For Claire, it was a different ordeal. I was under anaesthetic. She was awake through all of it, waiting, receiving updates and carrying the fear from the outside.
We thought the Whipple was the crisis.
It was only the first one.
About a month later I was at home in bed when I suddenly began vomiting large amounts of blood and lost consciousness. An aneurysm had ruptured in my main hepatic artery and my abdomen was filling with blood.
Claire was suddenly managing another life-threatening emergency, keeping me going until an ambulance could get me to hospital.
As luck would have it, interventional radiologist Dr Tom Snow was in the hospital car park preparing to leave when the call came through. He returned, and with moments to spare he and his team found the source of the bleeding, sealed it and terminated the damaged artery.
I had survived another major emergency by seconds.
By then, across the Whipple and the emergency operations that followed, I had undergone approximately 25 hours of life-threatening surgery.
The Cancer Came Back
Recovery was difficult. I was weak, badly underweight, and trying to rebuild enough strength to continue treatment. I entered adjuvant chemotherapy through a clinical trial and tolerated it very badly.
For six out of every seven days I felt pinned to the floor. It was often only on the seventh day, just as the next infusion arrived, that I remotely began to feel human again.
Then I had to go back for more.
The hospital days were long. I remember being halfway there one morning and pleading with Claire, through tears, to turn the car around. I simply could not imagine walking back through those doors for more punishment.
But we kept going.
Then, with only a small number of treatments left, the scans changed everything again.
The cancer was back.
This time it was no longer local. It had spread across my liver and both lungs. There were too many tumours in my lungs to count. On the scan, they lit up like the night sky.
The liver tumours extended up under my rib cage. Every breath became increasingly deliberate and painful. Sitting was difficult. I was tiring badly.
I had survived the Whipple, survived the ruptured hepatic artery, endured months of chemotherapy, and still cholangiocarcinoma had found its way back.
I was now Stage IV.
The original six-month prognosis had collapsed to weeks, if not days.
It is difficult to explain what happens when that reality crashes through your front door. There is suddenly no future. There is just nothingness.
And Graeme was there in that moment too. Not physically, but in the only way he could be. He had died from this cancer, and now I was standing where he had stood.
Then one more piece of information arrived.
The Hail Mary Pass
My oncologist, Dr Matthew Burge, had looked deeper into the biology of my tumour. Genomic profiling identified that my cancer was MSI-high and dMMR.
At the time those words meant almost nothing to me.
To Matt, they meant opportunity.
He was leading an international clinical trial called KEYNOTE-158 using pembrolizumab, more commonly known as Keytruda. The biology of my tumour suggested I might match it.
When I had first been diagnosed, that pathway had not existed for me. Now, at the edge of everything, it appeared.
It was not certainty. It was not a cure being handed to me.
It felt like a late Hail Mary pass being thrown in my direction.
All I had to do was catch it.
There was still another problem. I had to remain well enough to qualify and begin treatment. I was weak, in pain, losing weight and declining quickly.
When it came time to sign the trial consent forms, I could barely sit upright. Claire had to lift my arm while Matt placed the pen in my hand.
The room was full of medical people looking on.
Matt, a fellow road-cycling tragic, put his hands on my cheeks so we could look directly at each other.
“Steve, you have one job: stay well enough to start the trial.”
I took that to mean:
“Steve, you have one job. Keep breathing. That is your job.”
The opportunity was real.
So was the condition I was in.
Four Weeks Later
I received my first infusion of pembrolizumab and went home without knowing what was going to happen.
On the third day after treatment, something changed.
The severe tumour-related pain suddenly disappeared. The laboured, painful breath-by-breath struggle was over.
I was lying on the couch on my left side. Claire was on a bean bag on the floor beside me, staying close as always in case I needed help. I quietly turned and then sat up on my own.
That was not normal.
I was testing whether what I was feeling was real.
There was no pain.
I could breathe.
I said to Claire:
“Something is wrong.”
She said, “What?”
I said:
“All the pain has gone.”
Claire looked at me and said, “What is wrong with that?”
Then she paused.
This was the first time something good had happened.
I said, “If the pain was because the tumours were growing, does this mean…”
Neither of us wanted to finish the sentence.
Claire said, “Maybe it’s the Keytruda.”
I remember thinking, what Keytruda?
I had completely forgotten I had even had it.
I stood up. I could move freely. Then I asked Claire if she could take me outside for a walk in the sunshine.
She did.
Those few steps are still difficult for me to describe. There was an enormous sense of freedom and empowerment flowing through me.
The pain had not slowly improved.
It had suddenly disappeared.
If growing tumours had been creating increasing pain, could the disappearance of that pain mean the tumours were shrinking?
Could that happen after one infusion?
Could it happen in three days?
I did not know where to put my mind.
It was a moment where the experience exceeded my words for it.
Something dramatic had changed, extraordinarily quickly.
But Claire and I did not dare get our hopes too high. Everything would come down to the scan.
Then, almost immediately, another storm arrived.
An itchy chest cough developed, followed by severe sweating, extreme temperature swings, profound weakness, light-headedness and difficult breathing. I could barely function.
The jubilation of the day before vanished as quickly as it had appeared.
At my lowest point, our son Zach arrived home unexpectedly from London. I had no words when he appeared in front of me. I could not even stand to give him a cuddle.
Just before he arrived I had reached the point where I felt the cancer was finally going to take me.
That was probably the closest I came to letting go.
Zach stayed beside me. Claire kept carrying the load. The storm passed as suddenly as it appeared.
I started visualising a life, even looking at my bike.
Claire was not particularly impressed by that idea.
To be fair, I had put her through the emotional and physical wringer as well.
“Where Are The Tumours, Matt?”
The first Keytruda scan became one of those strange betwixt-and-between moments in life.
I wanted the scan. I was terrified of the scan.
Before Keytruda, the tumours across the top of my liver had made breathing painful, lying on my side impossible and even doing up my shoelaces difficult.
Matt had explained that the tumours were creating the pain.
But the pain had disappeared three days after my first infusion, and one thought would not leave me alone.
If the tumours were creating the pain, and the pain had gone, could I dare believe the tumours were shrinking?
Could it happen that fast?
Now we were going to find out.
Just relax.
Ha ha.
Hope was back in the room, but it still had to prove itself.
When Claire and I finally sat down with Matt for the results, I was desperate for good news and absolutely petrified that yet another piece of bad news was about to arrive.
Matt first showed us the previous scan. The tumours were more numerous and bigger than I remembered, with large tumours across the top of my liver and under my ribs.
It did not feel like the start of a good day.
Then Matt, wearing his best poker face, brought up the new scan.
I looked at the screen.
Then I looked again.
“Where are the tumours, Matt?”
Matt said:
“That’s just it, Steve. There aren’t any. You have had a complete response.”
I asked:
“What does that mean?”
Matt replied:
“You don’t have any tumours or evidence of cancer, Steve.”
My reply sounded like a stuck record.
“Yes, but what does that mean?”
Matt said:
“Steve, go out and celebrate. They have gone, and I don’t think we will see them back.”
Claire and I were completely shocked. In some ways, it was a bigger shock than being told I was terminal.
My greatest hope going into that room was that perhaps the cancer had stopped growing. Maybe there would be some shrinkage.
Instead, the tumours were gone.
It felt like I had hit the ball out of the park with my first swing.
Matt, who had been confident, was also stunned. Of course, he had already had a couple of hours to prepare his best poker face. Claire and I had no preparation at all.
We just looked at one another with tears in our eyes. Matt’s grin said the rest.
I tried to thank him, but I could not find words large enough.
Matthew Burge had saved my life.
The Opportunity Life Handed Back
A complete response did not instantly erase uncertainty. Life became scans, blood tests, appointments, rebuilding fitness and trying to live normally while knowing the next scan could change everything again.
I had begun cycling again, although very badly. I remember telling Claire that I was improving…”I just passed a parked car going the other way”. At first carefully, then further, then stronger. The bike had always been part of who I was. Now it also became a way of measuring my return to life.
Claire was still carrying the weight of it too. A complete response did not erase what she had lived through. She had watched me weaken, bleed, collapse, enter surgery, face Stage IV disease and then somehow begin to recover.
The scans kept showing no evidence of disease.
The response was holding.
Eventually, after about 15 months of Keytruda infusions, I voluntarily stepped away from treatment.
That was when Matt said something I have never forgotten:
“Steve, there are many that we help a little and some we help a lot, and then there is you. Go out there and ride your bike and do something special with the opportunity you have been given. See you in three months.”
That sentence stayed with me.
It felt like being handed back a life.
But it also left me with a question.
What was I going to do with the enormous opportunity that life had handed back to me?
What Survival Opened
For a long time, my only job had been to stay alive. Get through surgery. Survive the rupture. Endure chemotherapy. Stay alive long enough to reach the clinical trial. Make it to the scan. Then the next one.
Once the response held, my attention began to shift. I kept thinking about how close everything had been and how easily my pathway could have ended differently.
The surgeon who looked a little further. The clinical trial that put me in the same hospital as Matt. Matt looking more deeply into my tumour biology. The genomic result. KEYNOTE-158. Staying well enough to reach it.
There were so many gaps I could have fallen into.
I had survived because important information was found in time and because the right people knew what to do with it. But I could see how easily that might not happen for another patient.
Not because people did not care. Cholangiocarcinoma simply moves quickly, the system is complex, and patients are often trying to understand their diagnosis while life-defining decisions are already being made around them.
I had lived inside that gap.
One day you are a person. The next day you are expected to understand pathology, scans, surgeons, chemotherapy, genomic profiling, clinical trials and survival statistics while simultaneously absorbing the fact that you have cancer.
That is a lot to ask of someone who was, only yesterday, just a person.
And I began to see what happened when understanding arrived too late.
Options disappeared before patients even knew those options had existed.
We Didn’t Just Tell Our Story. We Put It To Work.
Claire and I chose to stay on the battlefield, shoulder to shoulder with the patients and families who needed us most.
We had survived it ourselves. We knew what it felt like when understanding came too late, when the system did not connect, and when the patient and family were left carrying the consequences.
We didn’t just tell our story. We put it to work.
Our lived experience became expertise, and over the years we compounded that expertise through thousands of patients and families.
Patterns became clearer. So did the common mistakes, the lost options, the delays, the moments where one earlier question or one earlier piece of understanding could have changed what happened next.
We began to see where the system worked, where it did not, and what patients and families needed earlier.
From what we learned, we built a patient response system.
The Foundation did not begin in my mind as an organisation. It began as a question.
If Claire and I had seen so many gaps in my own pathway, how many other patients were falling through gaps we had not yet seen?
How many opportunities were being lost because information, expertise and action had failed to connect in time?
That question always led me back to Graeme.
Could there have been another pathway for him? Another question? Another clinician who looked again? An opportunity we never knew existed?
Could he have been like me?
I will never know.
What I do know is that his family was crushed by an early death.
Mine could have been too.
That is the truth I could not move past.
Then We Followed The Biology Backwards
At first, the gaps we could see were practical. Diagnosis. Surgeon choice. Second opinions. Genomic profiling. Clinical trials. Timing. The right person looking again.
But underneath those practical gaps sat another question that would not leave me alone.
What was this cancer, and why had it happened to both Graeme and me?
Graeme had two children. Claire and I had two children. This was not an abstract medical question. It was sitting inside our family.
I had survived because someone had looked more deeply into the biology of my tumour. That made me wonder what else might become visible if we looked more deeply into the biology before the tumour.
What was happening in the biliary system? What was happening in the ducts? What was happening in the bile flowing through them? What was happening at the epithelial surface? What injuries and conditions existed before cancer formed?
What had to go wrong for cholangiocarcinoma to become possible?
I could not stop looking upstream.
That work took us further into the biliary tract, the ducts and the bile that flows through them, bringing biology that had remained buried inside scientific complexity into everyday understanding where patients and families could begin to engage with it.
We were not simplifying the biology to bypass science. We were making it understandable enough to use.
That distinction became increasingly important to me because every professional and every part of the system brings expertise in their part.
Only the patient and family carry the whole.
The appointment ends. The clinician goes home. The researcher returns to the laboratory. The patient and family continue carrying the entire crisis.
That is why I believe expertise should increase the patient’s ability to understand and engage, not increase their dependence on a system they cannot see or understand.
That is what patient-led means to me.
What My Survival Became
My story did not end with a complete response. That was the point where another unexpected responsibility began.
Claire and I had been given back time that Graeme and his family did not receive. We had also seen how easily my own opportunity could have been missed.
So we stayed.
Our lived experience became expertise. We compounded that expertise through thousands of patients and families. We built a response system from what we learned. Then we followed the biology backwards towards the conditions of cause.
Today, that work reaches across patient response, biological understanding, research, precision medicine, technology, education, community and prevention.
Two brothers. Two families. Same cancer. Graeme died. I survived.
There was an enormous price behind that understanding.
But what we learned is no longer just our story. It is visible in patients who understood sooner, in options kept open when they were being lost, and in families equipped with understanding they did not have before.
And it keeps leading me back to the same question:
What can we understand earlier, so we can act earlier?
Earlier Understanding
EARLIER UNDERSTANDING IMPROVES SURVIVAL AND PREVENTS TOMORROW’S DIAGNOSES.
Earlier Right Action delivers it.
My story is rare. I know that.
But rare does not mean irrelevant. It means the details mattered.
In my case, the surgeon mattered. The additional question mattered. Genomic profiling mattered. Matt mattered. KEYNOTE-158 mattered. Timing mattered. Claire mattered. Staying open to another pathway mattered.
Any one of those pieces could have been missed.
That is what I want patients and families to understand.
You do not need to understand everything at once. But you do need to begin. Get organised. Understand exactly what you are dealing with. Ask questions. Seek experienced review early. Understand the biology of your tumour. Know what options exist before assuming they do not.
Then take the next right step. And then the next one.
Follow The Process ➤ Gain Earlier Understanding ➤ Avoid Common Mistakes ➤ Keep Options Open ➤ Take Earlier Right Action ➤ Improve Survival Today
Do Something Special With The Opportunity
Matt told me to go out, ride my bike and do something special with the opportunity I had been given.
Claire and I have spent the years since trying to honour that responsibility, that something special.
Cholangio.Org and Cholangiocarcinoma Foundation Australia are our answer.
Not because we have all the answers.
Because patients should not have to wait for survival knowledge to find them.
It should meet them earlier.
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Steve Holmes | Personal Website
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