Elias Jreissati knows only too well the devastating personal toll, fear and uncertainty that pancreatic cancer can cause.
He was diagnosed with the deadly disease at 54 – the same age at which it took his father 25 years ago.
Sadly, there has been little improvement in Australia’s pancreatic cancer survival rates since he lost his father, so the Melbourne businessman approached Epworth HealthCare with a plan to improve patient outcomes.
The new Jreissati Family Pancreatic Centre at Epworth aims to revolutionise the treatment of a condition that often falls between the cracks of different medical specialties.
Mr Jreissati’s diagnosis 17 months ago required the determined work of his doctor – his initial symptoms were similar to those of an upset stomach, and he was given tablets to treat a suspected bug.
Mr Jreissati's “very stubborn” doctor requested an ultrasound, CT scan and an MRI, but each test found nothing serious.
His doctor kept investigating, though blood tests were normalising and all symptoms had disappeared.
An endoscopic ultrasound finally revealed a pancreatic tumour, and the stage two cancer was removed in surgery.
"The growth was fast. Pancreatic cancer is a very efficient killer," Mr Jreissati said.
Once diagnosed, his doctors set up a “war council” where meetings, ideas, suggestions and a pathway were debated daily, while his wife Colleen dedicated herself to researching the disease.
This was just the start of a long and frightening and, at times, frustrating journey for the Jreissati family.
As well as a deluge of information to understand, answers to their many questions often contained mixed messages and conflicting views.
With no centralised care available in Melbourne for pancreatic cancer patients at the time, Mr Jreissati had to visit different locations for consultations and treatment.
"The process as it stands is best described as inefficient," he said.
"The data about this dreaded disease is fragmented, and one needs to look in more than one place to find answers. The same question has to be put to more than one party.
“The process is frightening. It is daunting. It is almost unbearably impossible for a natural person to comprehend and digest the data."
At first, Mr Jreissati was willing to take part in clinical trials and special treatments overseas, but after much research he found everything he needed was available in Melbourne.
From there came his plan to create a centre providing comprehensive care in one location, and giving general practitioners the tools and education they need for early diagnosis.
Patients will ideally see a specialist within three days of their suspected diagnosis, and have a dedicated nurse co-ordinator throughout the process.
The centre also aims to create a centralised knowledge base on the disease, for Australia and internationally, and to pioneer new diagnosis and treatment options.
Its director, Associate Professor Andrew Metz, said malignant pancreatic disease is “very difficult to diagnose” and described treatment as being like “a dark art”.
“We know there's data that shows pancreatic cancer patients have presented to their GP a minimum of three to six times before pancreatic cancer has been considered.
"There is so much overlap between the symptoms of pancreatic cancer with more common, but benign, diseases. It can be pain in the stomach area, bloating, loose bowels, loss of appetite or feeling nauseous,” he said.
As well as being under-diagnosed, pancreatic cancer often presents late, at the untreatable stage.
In 2020, almost 4,000 people in Australia were diagnosed with it – and around 3,300 of them died. Only 11 percent of those diagnosed will survive to five years.
"For me, the most exciting thing about this role was the opportunity to be suddenly presented with a centre with the sole goal of improving patient outcomes, that is adequately funded, and with a whole lot of people who are enthusiastic about achieving the same aim," A/Prof Metz said.