People living with pancreatic cancer have helped develop an Australian-first online resource to support patients after diagnosis.
University of Melbourne researchers co-designed the PanSupport web-app, launched today at www.pansupport.org.au, with patients, their families, carers and clinicians.
It provides a hub of advice, resources and information to allow pancreatic cancer patients to live as well as possible. Topics include symptoms and care, accessing support groups, legal and financial advice, and looking ahead to end of life care.
Pancreatic cancer patient, lawyer and Melbourne father Graham Wells, 56, is among those who have contributed to PanSupport’s design and development since the project began two years ago.
“PanSupport is a very good resource, with advice provided by experts as well as people with the lived experience of pancreatic cancer,” Mr Wells said.
“It provides a much more holistic way of not just dealing with a diagnosis but the various life challenges that take place, whether they be financial or emotional, and it gives insights both to patients and their loved ones.”
University of Melbourne Chair in Cancer Nursing, Professor Meinir Krishnasamy, who led the website’s development, said it was a place of respite from the overwhelming statistics confronting these patients.
“Each year, approximately 3,100 Australians are diagnosed with pancreatic cancer,” Professor Krishnasamy said. “These patients experience significant symptom burden and poor prognosis.
“PanSupport provides the advice and assistance that people affected by pancreatic cancer need, when they need it, no matter where they are. It is a safe, supportive space, acting as an ‘online companion’ from diagnosis onwards.
“PanSupport is the first Australian research-based supportive care resource for and by people affected by pancreatic cancer, covering their physical, psychological, social, information and spiritual requirements.”
PanSupport was produced by University of Melbourne in collaboration with key partners Pancare Foundation, RMIT University and Peter MacCallum Cancer Centre. Visit www.pansupport.org.au.
The project is a Cancer Australia Supporting people with cancer Grant initiative, funded by the Australian Government.
Led by Professor Sean Grimmond, the University of Melbourne Centre for Cancer Research (UMCCR) brings together leading cancer researchers from across the University of Melbourne to drive collaboration and achieve improved outcomes for cancer patients. The Centre’s research targets key points along the patient journey, from cancer diagnostics, defining the cause of genetic predisposition, selection of optimal therapies, combatting recurrence, and palliative care.
Professor Meinir Krishnasamy‘s cancer nursing research program at the University of Melbourne exists to develop new ideas and translate existing knowledge into practice to enhance the experience and outcomes of people affected by cancer. It also aims to improve the efficiency of health service delivery. This will be achieved through nurse-led health services research, and clinically-focused projects that are practice-relevant and include consumers in all of our research endeavours.
Case study: Graham Wells, pancreatic cancer patient
“I started my cancer journey in 2007 with various brain tumours, and since then the tumour has metastasised and has spread to the pancreas and liver. The tumours have been removed surgically and targeted radio-therapy seems to have stopped further brain tumours.
“It’s important for people working through any cancer diagnosis to feel supported and that they aren’t alone. Pancreatic cancer has a terrible survival ratio over a five-year period, and it’s important for people with pancreatic cancer to avoid becoming isolated and depressed.
“I have found that one of the best resources is talking to people with similar conditions through support networks and social media. Unfortunately there is a lot of inaccurate information online, some which may cause panic or grief. One way to test information is discussing the diagnosis with a specialist cancer nurse, either through Pancare or the Cancer Council.
“Some people are unwilling to talk, their cancer experience is private, and thats ok, we are all different. For me I look pancreatic cancer in the eye and get on with life. A cancer diagnosis does affect life, but it doesn’t have to be the end of the world.
“A key factor in surviving pancreatic cancer is early diagnosis. Mine was picked up by accident whilst looking for something else. With early detection specialists are able to identify and offer a plan that gives patients more options. Often pancreatic cancer is not diagnosed until it’s too late, and so the person might not have long to live at all.
“In the next month I will be undergoing further surgery. The complete removal of my pancreas is going to hurt, but it will give me a lot more time for my kids, its doable – I’ve been through it once before so I can do it again. I know what to anticipate.”