31 August 2016
Grandfather’s story inspires and brings support to other men living with advanced prostate cancer
Advanced Prostate Cancer Xplained is a free, innovative resource aimed at explaining complicated disease information to men and their families through storytelling. It follows the journey of a real patient and explains surgery and treatment options, as well as side effects, psychological issues and the role of patient support groups.
Available online at www.advancedprostatecancerxplained.com.au, Google Play, iTunes or on a physical webkey, Advanced Prostate Cancer Xplained features the story of David - President of the Nepean/Blue Mountains Prostate Cancer Support Group, grandfather of three and avid 'caravanner'. We are taken on David's journey of firstly being diagnosed with prostate cancer to then finding out it is advanced, his surgery and life's ups and downs afterwards.
"For me the prostate cancer (PCa) diagnosis was terrifying and I looked for whatever support I could find. In this respect 'Dr Google' was extensively used as was the Prostate Cancer Foundation of Australia and the Cancer Council NSW. An app such as this would have been helpful as it shows that there is a life after a PCa diagnosis", shared David.
He continued to say "My wife Jan features in this app as PCa also affects partners but we have got on with our lives with a normalcy as best we can.
While there are no real positives generally with a cancer diagnosis, the people that we have met and the networks that we have made while on this PCa journey have certainly helped us live and positively cope with this insidious disease, but I add that we have made the effort to go out there and be involved to make the best of the deck of cards that we have been dealt. Let's hope the app helps others make that choice to meet men and their partners in similar circumstances".
Advanced Prostate Cancer Xplained has been developed and collaborated with input from patients, oncologists, urologists, nurses, the Prostate Cancer Foundation of Australia, Advanced Prostate Cancer Support Group, Australian Prostate Cancer Research and is sponsored by Astellas Pharma Australia.
"The app tells David and Jan's story in a very accessible and moving way. Their story will help other men and their families understand that it is possible to live a fulfilling life after a diagnosis of advanced prostate cancer", said CEO of the Prostate Cancer Foundation Australia, Dr Anthony Lowe.
Urology Nurse, Helen Crowe believes "this simple app provides a comprehensive overview of a patient's journey dealing with prostate cancer diagnosis, treatment and recurrence, his experiences and coping methods. It is factual but also deals with patient's fears and emotions, and as such will be very useful for patient's facing similar experiences".
Associate Professor Declan Murphy explains, "This app adds a unique dimension to the resources available to support our patients with advanced prostate cancer. Storytelling is a wonderful way of depicting the journey that our patients face, and certainly makes a change from the more staid resources out there. Of course, deploying it through an app is also wonderful as very many of our advanced prostate cancer patients are now familiar with tablets and smart phones".
Dr Kim Chilman-Blair, Founder and CEO of Medicine X, the organisation that worked with David to tell his story, believes that storytelling is the best way for patients to understand and retain information in order to make serious decisions about their treatment.
"Around 80 per cent of medical information provided by doctors is forgotten straight away. Advanced Prostate Cancer Xplained is designed to fill these gaps in a creative and powerful way," Dr Chilman-Blair said.
Advanced Prostate Cancer Xplained also holds a special place with Dr Chilman-Blair. In the early stages in the development of the app, her father reviewed it out of interest. After reading through the app, he was compelled to get his prostate specific antigen (PSA) levels checked. Without even having symptoms, it turned out that his PSA levels were high, and he was quickly diagnosed with an aggressive form of prostate cancer. His prostate was removed within weeks of reading the story, and he is now on hormone therapy and radiotherapy. "I always knew that someone, somewhere would benefit from this information - but I never dreamt that it would save the life of my own father". Dr Chilman-Blair said.