Elias Jreissati knows only too well the devastating personal toll, fear and uncertainty that pancreatic cancer can cause.
He was diagnosed with pancreatic cancer at age 54 – the same age he lost his father to the disease 25 years ago.
Sadly, in the last 25 years, there has been little improvement in pancreatic cancer survival rates in Australia. That's why the Melbourne businessman approached Epworth HealthCare to establish the Jreissati Family Pancreatic Centre at Epworth.
Mr Jreissati was diagnosed with pancreatic cancer 17 months ago, thanks to the determined work of his doctor.
When he first went to the doctor, his symptoms weren't unusual. They were symptoms you would expect with an upset stomach.
"My symptoms were totally non-referenced to what we usually look for in pancreatic cancer," Mr Jreissati said.
"After the initial consultation, I was given tablets for a possible stomach bug."
Mr Jreissati's doctor subsequently requested an ultrasound, CT scan and an MRI. Each time, Mr Jreissati was cleared of anything serious. Each time his doctor, who he describes as a 'very stubborn doctor', wanted to investigate further.
Blood tests were normalising and, all symptoms had disappeared but, an endoscopic ultrasound was ordered.
Subsequently, a pancreatic tumour was found. The stage two tumour was removed in surgery.
"The growth was fast. Pancreatic cancer is a very efficient killer," Mr Jreissati said.
Once diagnosed, his doctors set up what he described as a war council where meetings, ideas, suggestions and a pathway were debated daily. His wife, Colleen, became a full-time researcher of all things pancreatic cancer.
This was the start of a long and frightening and, at times, frustrating journey for the Jreissati family. There was so much information to read and understand. When asking questions, they were receiving mixed messages and conflicting views. There was also no centralisation of care available in Melbourne for pancreatic cancer patients at the time. This meant that he needed to visit different locations for consultations and treatment.
"The process as it stands is best described as inefficient," Mr Jreissati said.
They learned, studied, asked questions and influenced.
"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," he said.
Testing has shown there's no genetic link to pancreatic cancer within the family. But Mr Jreissati and his father did share a known risk factor - type 2 diabetes.
Months on from surgery, he looks back on his experience. At the start, he was willing to take part in clinical trials and special treatments overseas. But after a lot of research, he found everything he needed was available at home, in Melbourne.
Based on their experience, the Jreissati family wanted to change this process for others. It was time to do better and be better when it came to pancreatic cancer. With a vision, the family approached the Epworth Medical Foundation, which has resulted in the establishment of the Jreissati Family Pancreatic Centre at Epworth.
The vision for the Centre is to:
- provide centralised care by having health professionals available in one place
- aim for patients to see a specialist within 3 days of their suspected diagnosis
- patients will have a nurse coordinator assigned to them who will be their point of contact throughout the treatment process
- provide the tools and education general practitioners (GPs) need to help identify pancreatic cancer earlier. Early diagnosis is the key with this cancer
- create a centralised knowledge base on the disease that offers the same information to everyone in Australia and to the world
- pioneer new diagnosis and treatment options for people with pancreatic disease.
The Jreissati Family Pancreatic Centre at Epworth will revolutionise the treatment and care of patients with pancreatic cancer. The centre's commitment to research, patient experience and clinical care will result in better outcomes for patients.
Associate Professor Andrew Metz is the Centre's director.
He says for too long diagnosis and treatment of pancreatic cancer has been known as a 'dark art', where patients often fall between the cracks of different medical specialties.
"Benign pancreatic disease presents vaguely, and presents late. It's not something that's often thought about," AssocProf Metz said.
"We know malignant pancreatic disease is very difficult to diagnose. 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".
Associate Professor Metz said these highlights pancreatic cancer's vague presentation.
"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. That pretty much overlaps with every other presentation to a GP for every other gastro-intestinal disease."
Pancreatic disease is underdiagnosed and often presents late, at the untreatable stage. Some figures suggest that within ten years, pancreatic cancer will be the second biggest killer in Australia.
Last year, almost 4,000 people were diagnosed with pancreatic cancer in Australia. Around 3,300 of them died. Only 11 per cent of those diagnosed will survive to five years.
Associate Professor Metz is driven by the aim of improving the five-year survival rate through education and research.
"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 that are enthusiastic about achieving the same aim."
The Jreissati family story