Sandra Robertson cholangiocarcinoma survivor story

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

CHOLANGIO TODAY: OUR VOICE
Breaks Silence. Spotlights What Works.
One mission — Save More Lives
By Steve Holmes

“Care helps us cope. Response helps us win.”

This Patient Story
Illustrates the transition from care to response.

Shared by: Sandra Robertson
Date: 1st June 2025

Foreword

Every culture carries stories. Ours carry response and survival strategies.

We’re a patient-led culture, and our stories are not just experiences; they’re signals. From patient to patient, from caregiver to caregiver, each one teaches us how survival moves.

Sandra’s story is one of them.

It doesn’t open with grand speeches or perfect plans. It begins in the early-morning dark — clutching her side, wondering if the ache is just reflux. It unfolds through blocked stents, spiralling liver numbers, and a line drawn in the sand:

“It’s my life — my decision.”

That moment — when a patient takes full responsibility for their outcome — is the moment we move from chaos to clarity, from fear to function, and when uncertainty gives way to direction.

What follows is real:
Sandra asked the hard questions, made the hard calls, and accepted the hardest path.
She chose radical surgery when others hesitated. She found calm inside crisis. She rebuilt faith after breaking. She didn’t just survive — she led.

And now, she shares that map — unfiltered.
Read it as if your life, or someone else’s, might one day depend on it.

Let her clarity steady your own. In this culture, lived experience isn’t a side note.
It’s comfort. It’s guidance. It’s leadership.

— Steve Holmes

For Quick Reference:

Sandra’s Medical Team | Personal Circle | Medical Terms Used

Sandra’s Story – 5 years on And Thriving

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.

Thank You Sandra

“At this point I shut it down — it was my life, my decision. I’d had enough. Surgery would go ahead as planned.”
— Sandra Robertson

Your story points to three powerful takeaways:

First, your decision-making under pressure was the real treatment — you moved from diagnosis to surgery in 12 weeks, not by rushing, but by refusing to drift.

Second, you showed how culture beats protocol — finding clarity and calm within the storm, walking into major surgery with peace, not panic.

Third, you proved that strategic questions reclaim control — one question (“Why not chemo?”) shifted your entire path from passive treatment to proactive response.

And now, as of 20 February 2025, you’ve reached your five-year milestone — living proof that patient-led decisions don’t just save lives… they sustain them.

Your story also reminds us that it’s time we celebrate these moments more deliberately. So we’re launching a Five-Year Milestone Club — a space where survival isn’t just counted, but passed forward.
A place where those who’ve walked through fire can lead those still finding their way.

This is what survival looks like when patients take full responsibility — and lead.

Sandra, you’ve added strength to our community — a response culture that is a survival system in itself.
— Steve

Sandra Robertson cholangiocarcinoma survivor story

Glossary: Medical Team in Sandra’s Story

The People Sandra Activated Through Leadership

In this culture, the patient signs first. That signal — to lead — pulls a survival team into place.

Below are the individuals who became Sandra’s Response Team — not just through protocol, but through the clarity and leadership she provided at each step. This glossary honours those roles — both medical and personal — that together formed a true patient-led system of response.

‍Dr. Mithra Sritharan

Hepatopancreaticobiliary & General Surgeon

  • Specialties:
    Liver, pancreas, and bile duct surgery; complex laparoscopic and robotic procedures; liver transplantation.

  • Practice Locations:

    • Casey Surgical Group
      Suite 2.4, Level 2, 55 Kangan Drive, Berwick VIC 3806
      (03) 9707 3664
      (03) 9769 5328
      csg@caseysurgical.com.au
      caseysurgicalgroup.com.au

    • Public Appointments:

      • Monash Health (Clayton)

      • Jessie McPherson Private Hospital

      • Warragul Hospital

Dr. Andrew (Andy) Gray

General Surgeon – Hepatopancreaticobiliary & Upper GI

  • Specialties:
    Hepatobiliary and pancreatic surgery; laparoscopic liver surgery; complex endoscopy (ERCP & EUS).

  • Practice Locations:

    • GutWise on Bedford
      27 Bedford Road, Ringwood VIC 3134
      gutwiseonbedford.com.au

    • Mulgrave Private Hospital
      Blanton Drive, Mulgrave VIC 3170
      mulgraveprivate.com.au

    • Holmesglen Private Hospital
      490 South Road, Moorabbin VIC 3189
      doctorgray.com.au

    • Bass Coast Health
      235 Graham Street, Wonthaggi VIC 3995

    • Public Appointment:

      • Monash Health (Clayton)

Dr. Cameron McLaren

Medical Oncologist

  • Specialties:
    Gastrointestinal, hepatobiliary, breast, lung, and genitourinary cancers; clinical trials; palliative care.

  • Practice Locations:

Sandra’s GP (Name not provided)

  • First identified the elevated liver function test (LFT) results.

  • Acted quickly to arrange hospital admission and flagged concern.

  • Played a critical early role in escalation and diagnosis.

Back To Sandra’s Story 

Glossary: Personal Circle

Sandra’s Partner

  • Initially advocated for chemotherapy as the primary path.

  • Engaged in treatment discussions, highlighting common tension between quality of life and curative intent.

  • Remained by her side through surgery and recovery.

Sandra’s Daughter

  • Played a vital role during Sandra’s Transient Global Amnesia episode.

  • Supported her emotionally and ensured she received urgent care.

  • A reflection of how families often become first responders.

Sandra’s Mother

  • Moved into aged care during Sandra’s treatment period.

  • Her well-being was part of Sandra’s spiritual motivation to survive.

  • Referenced as central to Sandra’s faith journey and emotional recovery.

Back To Sandra’s Story 

Glossary: Medical Terms

LFTs (Liver Function Tests)

Family-friendly: These are like warning lights on a car dashboard — they tell doctors how well your liver is working.
When Sandra’s were dangerously high (1646), it meant the liver was under serious stress and something needed immediate attention.

Gallstones

Family-friendly: These are like tiny pebbles made from hardened bile that form in your gallbladder. They can block bile flow and cause pain.
Sandra had gallstones for years, but they only became a real problem when they started affecting her bile duct.

Bile Duct

Family-friendly: Think of the bile duct as a long, narrow pipe that drains the liver’s cleaning fluid (bile) into your intestines — specifically into the duodenum, the first part of the small bowel.

Sandra’s context: Her tumour was growing inside this pipe, blocking the flow and building pressure inside her liver.

Sludge (in Gallbladder)

Family-friendly: Sludge is thick, sticky bile — like oil that’s starting to turn into mud. Over time, it forms a sediment build-up at the bottom of the gallbladder.
It can slow down the flow, block ducts, and trigger inflammation or infection.

Sandra’s context: Her scan showed her gallbladder was already full of this sludge before the crisis began.

Stent

Family-friendly: Sandra had a plastic stent, which doctors often use when short-term support is needed — such as before an upcoming surgery or during initial treatment planning. Plastic stents are easier to remove or replace, but they can block more easily and often need to be changed every few months.

For bile duct cancers, doctors sometimes use metal stents instead. These are designed for longer-term use, especially when surgery isn’t possible or when the blockage is expected to return. Metal stents stay open longer and are less likely to get blocked, but they’re harder to remove and not ideal if future surgery is planned.

ERCP (Endoscopic Retrograde Cholangiopancreatography)

Family-friendly: A special camera test where doctors guide a soft tube down your throat and into your gut to check the bile ducts.
It helps them see blockages, place stents — and initially collect tiny brushings from the any part of  theduct walls to test for cancer cells.

Sandra’s context: Her ERCP confirmed the tumour and helped doctors install a temporary stent.

CT Scan (with contrast)

Family-friendly: A powerful X-ray that gives 3D images of inside your body. The “contrast” is a special dye that helps highlight things like tumours or blockages.
Sandra had several of these to track what was happening in her bile duct.

Malignant Tumour

Family-friendly: A harmful lump made of abnormal cells whose DNA has been damaged.
These cells stop following the rules, break away from the body’s healthy systems, and form a rogue community — growing, multiplying, and invading new areas.
They don’t just show up — they spread.

It’s not just a bump — it’s cancer.

Sandra’s context: Her tumour was tiny (just 1 mm) but dangerously placed — where the bile duct passes through the head of the pancreas.
Early surgery made all the difference.

Pancreatitis

Family-friendly: Your pancreas is a sensitive organ that helps digest food — but it can’t handle pressure or toxic fluids backing up into it.

Bile is supposed to flow one way — down into the duodenum. But when that flow slows or reverses — because the bile becomes sludgy, too thick, gritty, or acidic — it can back up into the pancreatic duct, where it doesn’t belong.

This backflow causes ductal pressure, irritation, and inflammation — like a plumbing system forcing waste back into clean water lines.
That’s what pancreatitis is: a painful, dangerous reaction to that pressure and chemical irritation.

Sandra’s context:
She had repeated attacks, often triggered by stents blocking the flow of bile. Each time bile backed up, it inflamed the pancreas and sent her back to hospital.

Resection

Family-friendly:This means surgically cutting out the part of the body that has cancer. It’s often used when removing a section of the liver or bile duct — wherever the tumour is found.

The goal is simple: remove the tumour entirely and stop the cancer at its source.

Sandra’s context:
She had a specific section of her bile duct removed to eliminate a tumour that had not yet spread. It wasn’t a multi-organ procedure like a Whipple — it was a targeted, decisive removal.

Whipple Procedure

Family-friendly: One of the biggest multi-organ operations in cancer — like a full engine rebuild. Surgeons remove parts of the pancreas, bile duct, stomach, and small intestine to make sure every trace of the tumour is eliminated.

It’s long, complex, and only done when absolutely necessary — but it can be life-saving.

Sandra’s context:
Her doctors prepared for a Whipple in case the tumour had spread. Thankfully, it hadn’t — and she avoided needing this major surgery.

Capecitabine

Family-friendly: This is a chemo pill often used after successful surgery — when no obvious cancer remains but doctors want to make sure nothing invisible is left behind. Once inside your body, it converts into a cancer-fighting drug that seeks out and destroys stray cancer cells.

This type of treatment is called adjuvant therapy.

Sandra’s context:
She took Capecitabine for six months to help “flush out” any leftover cancer cells — a preventative step to reduce the risk of recurrence.

Adjuvant Chemotherapy

Family-friendly: This is chemo given after surgery — not because the doctors saw something bad, but to make sure nothing hidden is left behind.
Think of it as sweeping the floor after removing the main mess.
(Neoadjuvant means before surgery.)

Multidisciplinary Team (MDT)

Family-friendly: A group of experts who meet to talk about your case and make the best plan together.
Sandra’s doctor took her case to this team every Friday.

Transient Global Amnesia (TGA)

Family-friendly: A sudden loss of memory triggered by trauma — your mind hits “pause” for a few hours, and you forget even major events.
Sandra forgot she’d had surgery or why. It lasted about 24 hours, and it was terrifying for her and her family.

Back To Sandra’s Story 

What Is Cholangio Today?

This is not awareness.
This is not care.

It is the expression and execution of our culture —
a living survival system.

It’s where we patients take the mic —
Not to tell stories.
To lead.
To shape systems.

To spotlight what works.
To share systems that deliver.
To extend response beyond care — through innovation.

This is not support.
This is how we win.

Do you have a success story to share.

Do you see a blind spot the system keeps missing?
Email: steve@cholangio.org