Sandra’s survivor story shows how patient-led decisions, clarity, and faith turned a rare diagnosis into a five-year survival milestone.

Introduction
by Steve Holmes

Care helps us cope.
Response shapes outcome.

Sandra Robertson’s cholangiocarcinoma story began in 2019 with what seemed like routine gallstone discomfort.

It did not remain routine.

Her liver function levels rose sharply. The bile duct would not clear. A tumour was identified. Stents blocked. Pancreatitis followed. Weight dropped quickly. Jaundice appeared. Her physiology was under strain and her decision window was narrowing.

By the time this cancer becomes visible, the biological sequence has already unfolded. From that point forward, the question is not what caused it. The question is whether there is still a window.

Sandra had one. A surgical window.

It was limited by timing and anatomy. It carried risk. It was not open-ended. Inside that window were two options. Chemotherapy could shrink. Surgery could remove.

She asked the structural question: why not chemotherapy alone?

Once she understood the difference between shrinking and removing, her decision became clear.

“At this point, I shut it down. It was my life, my decision.”

That was the moment she stepped fully into the window that still existed.

Five years on, she is thriving.

Not because this disease was easy.
But because a window was recognised and taken.

Not every patient has a surgical window at diagnosis. Many are told they are not operable. That must be faced honestly.

But “not operable today” is not always the same as “never operable.”

When surgery is declined, one question can protect future options:

I understand surgery is not possible right now. What would need to change for it to become possible? What would that pathway look like?

Sometimes the answer remains no.
Sometimes it reveals a path.

Either way, recognising and acting within windows is often where trajectory shifts.

As you read Sandra’s story, notice where that window appeared. Notice the decision point. That is where response shapes outcome.

— Steve Holmes

In July 2019 I had an appointment with my GP for a few things and I mentioned that I was experiencing pain under the right rib cage—more discomfort than anything. I had had gallstones often over the previous twenty years or more and had never had any real trouble with them. My doctor asked me to get an X-ray and make an appointment to see him when he came back from overseas in August. The appointment was in November—I took my time. The X-ray showed that my gallbladder was full of sludge and gallstones and needed to come out; he provided a referral to a surgeon and said to get it done within three to six months.

About a week later I woke up around 2 a.m. in pain. I just thought indigestion/reflux and I got up and walked around, had a glass of water, some painkillers and Quick-Eze, and tried to get comfortable but couldn’t. It escalated over the next three hours and I could hardly breathe, so I went to the hospital. They offered what the doctor referred to as a “pink lady” and did bloods. The pink lady did the trick and the doctor felt it was a gallstone passing through the bile duct, as my liver function test was really high—dangerous levels (1646). I was told to go home and redo bloods in about two weeks’ time. It was business as usual between this and the next bloods.

Bloods were repeated in December and the next morning my doctor called me at 9 a.m. to advise my LFTs were dangerously high and I needed to get to the hospital immediately. I felt fine and had just grabbed a morning coffee and settled in to start work, totally unaware of what was happening internally. My doctor knew me fairly well and had already contacted the head surgeon at the hospital and admissions had been completed. Whilst on one phone to my doctor the surgeon rang on my mobile and told me to come to the ward when I arrived.

Gallbladder out and the surgeon came to see me and informed me that they would be monitoring me for a couple of days as my LFTs had not come down and when they tried to flush the bile duct it wouldn’t clear. My LFTs continued to remain high for the next couple of days and the surgeon informed me that the CT had identified a tumour which they believed to be malignant and an ERCP would be required to confirm this; they would put a stent in temporarily to maintain liver function. I had been referred to hepatopancreaticobiliary and general surgeon Mithra Sritharan.

Another CT scan (with contrast) and shortly after that I went up for the ERCP. As I was waking up—OMG—the pain was excruciating, nothing like I had ever experienced before. I was yelling for help, asking them what they had done to me, to stop the pain; I couldn’t breathe and they said they didn’t know what was wrong. They put me under again and attached an oxy drip and I woke up back in the ward.

Mithra came to see me and explained what had happened and that I’d had acute pancreatitis and there was a 1 mm malignant tumour about a quarter of the way above the pancreas in the bile duct. It was undetectable on the CT scan but, for the fact they knew it was there, it was undetectable. It required surgery to remove it completely but that would be delayed due to the pancreatitis. My LFTs were reducing to acceptable levels and after a few days I went back to work.

The stent kept getting blocked—usually after food—and each time this occurred I got pancreatitis and continued to be in and out of hospital. Surgery was not booked but it had been discussed. I was a bit sceptical at first and did my own research and asked a lot of questions around chemotherapy and why I couldn’t just have chemo, which Mithra explained would shrink the tumour but would not get rid of it. Mithra advised that surgery was the only way to get rid of it completely and he wouldn’t be doing his job if he didn’t remove it. Pancreatitis continued randomly.

All up, over the twelve weeks prior to surgery I lost about 18 kg. I was vomiting (including water), the whites of my eyes were yellow, I was jaundiced, my bowel movements were white, and Mithra expressed concern at the speed at which I was deteriorating. He attended weekly multidisciplinary sessions at Monash Health on Fridays where my case was reviewed, and the overall opinion was that the tumour had attached to the main artery sitting behind the bile duct that went back up to the liver.

Based on that he believed that I was going to have a resection of the bile duct, half of my liver taken, and a Whipple. Mithra gave me the statistics on this—5 % chance of not getting through surgery, 15 % chance of having to be in care for the rest of my life. He explained that Whipple is a long journey on its own but with the added complications it wasn’t going to be easy; but given my age—I was 55 at the time—I had a positive outlook for a full recovery.

On hearing all of this my partner was concerned for quality of life following surgery. My partner was still convinced that chemotherapy would be enough and allow me to have a quality life for the time remaining and wanted to discuss this as a family. Mithra said that if we wanted to get a second opinion surgery could be postponed. At this point I shut it down as it was my life—my decision—I’d had enough and told Mithra we won’t be getting a second opinion; surgery will go ahead as planned. Chemotherapy can only shrink the tumour but surgery could remove it, and chemotherapy after could flush out any abnormal cells lurking. This all made logical sense to me and was the best option based on the statistics.

I continued to deteriorate and Mithra put me in hospital earlier to try and build up my protein levels to be able to cope if the outcome was as predicted. Attempts were made to tube-feed me but that caused me to have a panic attack so was ceased and I was monitored closely. The night before surgery I experienced a spiritual event which would result in me restoring my faith in God and returning to the church after years of being angry with God for the suffering I saw inflicted on my grandfather (Reverend Wilfred Rees Searle).

Surgery day I woke up feeling an inner peace and that my fate was in the hands of God. I did not see Mithra; however, Dr Andrew Gray was assisting Mithra and sat with me, held my hand, and chatted cheekily—which was so comforting and I don’t think he will ever know how much that meant to me. I had silent tears falling thinking, Is this really it? Am I ever going to see my family again, and what will happen to them? I saw Mithra in the distance and then everything happened really quickly.

Next I woke up and everything was dark. I wasn’t sure where I was and then, as my eyes started to focus, I could see a nurse. I was in intensive care. I was only there for about 24 hours and then sent back to the ward. Dr Gray was looking after me post-surgery and he came and explained that they were all astounded by what had unravelled in surgery.

Normally the bile duct is really difficult to get to as it sits behind other organs and the rib cage, but mine was right in front of them. The tumour was not attached to anything other than the wall of the bile duct and, in Dr Gray’s words, “it just lifted out”. A biopsy was done of the top of the pancreas and the base of the liver as well as full bloods and there was no sign of any other cancer cells. The resection was completed and, following a few minor concerns with things starting to work properly again, I went home about ten days after surgery.

I had six months of chemotherapy under Dr Cameron McLaren as a precautionary measure to flush out anything that may be there, and at the one-year mark Mithra informed me that there was no sign of anything and the longer I go without anything showing the more likely it is that it won’t return. This was on a Monday. On the Saturday morning I woke up—but I don’t remember even waking up. My daughter was doing her hair and I said, “Are you going out?” She said, “I’m working, like I do every Saturday.” I said, “Where do you work?” She said, “The same place I have worked for the last two years.” I said, “Where is that?” She thought I was joking around with her but answered, “You know I work at the bakery.”

This went on for a bit and she went and got my partner as they thought I’d had a stroke. I don’t recall any of the conversations but was told I asked “Who cooked that?” (previous night’s leftovers still in the pan). I was told “You did.” I said, “No way, I wouldn’t cook shit like that.” I went over to my mum’s unit, which is on the property, and there was no one there, so I went back to the house and asked, “Where’s my mum?” To be told “She is in respite at the aged home.” I asked, “When did she go there?” “Why is she there?” To be told “She has been there for two weeks now.”

My daughter and partner bundled me up and took me to the hospital and on the way there every few minutes I would ask, “Where are we going?” “Why are we going there?” The hospital ran some tests as they initially thought that I had had a stroke but nothing showed on the CT scan. The diagnosis was Transient Global Amnesia, which lasted for about 24 hours and was apparently a reaction to severe trauma. I completely blocked out any of my experiences of the previous twelve months—didn’t believe I’d had surgery, had no idea who Mithra was. I was asked to look at my stomach where I saw the inverted L-shaped scar and I asked, “What happened to me? Why did I need surgery?”

After this, it was all just time to heal, return to church and restore my faith, and become a positive statistic to tell my story to others who are going through similar experiences or have family that are experiencing this rare form of cancer. I only want to “shine a light in what is a really dark place to be”.

I have just completed a program at church called “Alpha” and it has been one of the most uplifting experiences. After losing my mum (88 years) about six months ago I wasn’t sure who I was as a person without her, and the minister at the church reached out and asked me to come along to the program. I had felt that my outcome of surgery was an act of divine intervention in order to look after my mum and me being the main person in her life at the end; however, I am still here, so have not fulfilled my destiny yet and am on a journey to understand and get a sign as to what that may be.

I know that not everyone is going to have this outcome, but I hope that there is some inspiration and hope in my story. If any of you would like to reach out to me, please do so via Steve Holmes.

Sandra built a team and a culture

Below are the individuals who became Sandra’s Response Team, and support team.