How Bruce beat the odds. A Bile Duct Cancer survival story.
As chronicled and shared by his daughter Sarah Mills of Ballarat, Victoria
The year 2020 was a pretty tough time for everyone with the COVID-19 pandemic still raging, but for my father Bruce’s bile duct, it was a “real stinker” – every pun intended. While a diagnosis of Cholangiocarcinoma (Biliary or Bile Duct Cancer) in May 2020 dealt an unexpected blow to him, two years later, thanks to remarkable surgery and treatment by Pancare Foundation founder, Dr Mehrdad Nikfarjam – we have a good news story to share and inspire others with much needed hope and positivity. You can find more information about Bile Duct Cancer through links at the bottom of the story plus my dad’s journey.
My father’s diagnosis
A subtle pattern of weight loss, some jaundice and feeling like something was ‘not quite right’ resulted in my father visiting his GP in early May 2020. Mid-way between COVID-19 lockdowns, or perhaps after one, he had investigative tests and scans performed. A ‘can’t remember its name’ scope was inserted to see what it was in my dad’s bile duct that didn’t belong there. What they found was not good at all but the immediate action taken by his GP with his concerns, and the comprehensive tests taken, really enhanced his chance of survival.
I’m pretty sure this all happened in the span of about a week and by Sunday evening of Mother’s Day 2020 Dr Mehrdad was on the phone with my father to meet over Zoom for his first appointment and to make a treatment plan.
In the early pandemic days, Zoom meetings were still a bit of a novelty and not everyone had signed up to the concept, especially those of us more used to shovels and chainsaws as work equipment than computers. So the mad scramble began, while the whole world was buying webcams to work from home we joined the queue trying to find a webcam so dad could see his surgeon face-to-face…albeit on a computer screen to hear his life saving plan.
Bruce’s treatment plan
Dad described the plan to me as ‘injecting superglue’ into the right lobe of his liver to kill it so the left lobe could grow in response, then the right side (complete with superglue) would be removed, taking with it the necrotic (dead) liver and cancer-filled bile duct.
It seemed very simple, but there was a catch: it was a one-way street once the ‘superglue’ was applied so if the surgery didn’t work my father would’ve been left with palliative options only. ‘No heroics’ dad said in the early days but it turns out the treatment really was an act of heroism that thankfully worked perfectly.
It was a bumpy Ballarat road getting to the ‘big surgery day’ – only about six weeks after dad’s initial diagnosis. There were several small procedures (to insert said ‘superglue’), a few infections and unexpected time spent in hospital with a complicated mix of antibiotics to ensure dad was infection-free on surgery day. It was a pretty rapid decline for my father responding to the superglue treatment and with his liver working overtime to grow enough to allow a large amount to be removed.
If you perform the surgery too early the liver won’t have time to grow enough and if we waited too long dad’s health would have deteriorated too much to withstand such major surgery. It was a day-by-day waiting game and felt like such a gamble.
Apparently the treatment plan and surgery offered to my dad is often only offered to maybe 10% of cases as survival from the surgery itself is rare, but it felt like it was an option that was too good to pass up – but at the same time terrifying!
Bruce’s big surgery
Living in Ballarat, in regional Victoria and mid-way through rolling COVID-19 lockdowns, we had to navigate treatment in the big smoke of Melbourne. It was pretty terrifying for those of us who grew up in rolling countrysides, where hospitals were just for visiting when kids and grandkids were born.
In his normal ‘dad’ way, he took each day as it came and was trusting and optimistic of the skill and knowledge of his team of doctors. For the rest of us though behind the scenes, the whole operation was highly choreographed to ensure we were staged in the right spot at the right time and with the right people beside us to provide unwavering support.
Kick-off was about 8 a.m. – and it was anticipated to be about a 12 hour session! How do you fill such a long day waiting for news and updates and at the end of the day just desperately wanting to know what was going to happen?
Thank goodness we have a medically-trained inside woman in the family who acted as a medical translator for us. This in itself added extra strain for her, though, almost knowing too much about the risks and the rest of us not wanting to believe the news we were given as the realities were often too stressful to imagine.
While Dr Mehrdad had his hands full performing surgical magic on my father’s liver, the aesthetician went above and beyond to provide regular updates over the phone. We could then relay the updates on to mum who was being carefully distracted at home by loved ones.
It was about 7:30 p.m. when Dr Mehrdad called us to say the surgery was complete. Eighty percent of dad’s liver was removed along with the cancer. Surviving with a liver of less than 25 percent is considered unlikely so survival at this stage was still a scary proposition.
We had reason to be hopeful
After four to five days in ICU, then roughly a month in hospital afterwards waiting for the body to adjust to most of its liver missing, we received news that dad was all set to return home in July 2020, just as another pandemic lockdown was imminent.
Today, little more than two years since my father was discharged from hospital his liver has remarkably bounced back to its pre-surgery size and he is living ‘cancer-free’. Even more, so we’ve been given a renewed sense of optimism and the importance of hope in an often hopeless situation.
Making Masks for Pancare
In our family, one of the best ways we know to help ourselves out of a sticky situation is to try and do something to help others.
While mum was left at home by herself a lot while dad was in hospital, she got practical and started making face masks to keep family, grandkids, friends and neighbours safe from COVID. She had many reasons to feel frustrated and angry and she turned it into a positive situation by making hundreds and hundreds of face masks and selling them – and Making Masks for Pancare was born. Last count, the amount raised was well over $5,000.
It was a family affair as well. Whilst toilet paper was in short supply at the start of the pandemic, so too was the elastic needed for making masks. Thankfully, we had another family member act as the elastic supplier scouring shops in north East Victoria for supplies of elastic – a much needed distraction and source of purpose for worried kids out of town. Mum was in regular contact with the team at Pancare to get donation updates and we loved having such a close connection with those who could offer us so much support and guidance.
There are so many to thank
Thank you especially to Dr Mehrdad and his team that performed such remarkable surgery, and the Pancare Foundation for the support and guidance offered to our family while navigating my father’s diagnosis and treatment in such a caring way.
Dad is now back to his normal self, sharing his love of Lego and trains with his grandkids. While completely aware that not all stories will have an ending like ours, we’re sending love and some much needed hope to others facing their own “stinker” of a situation.
For those that would like to know more about dad’s diagnosis, you can find out more about Biliary cancer here What is biliary What is biliary cancer?cancer? ” Pancare Foundation