Men with prostate cancer invited to navigate a new online decision-making aid
Men diagnosed with early stage, low-risk prostate cancer are invited to take part in a trial evaluating the impact of a new online resource for prostate sufferers called Navigate, which seeks to help them make decisions about treatment.
Funded by the National Health and Medical Research Council (NHMRC) the Navigate online resource is part of a research study sponsored by Swinburne University and overseen by Peter MacCallum Cancer Centre in Melbourne.
“Our research found that men with early stage, low-risk prostate cancer face more difficulties with treatment decision-making than any other cancer clinical group,” says Project Manager and research nurse Natalie Richards.
“This is especially true when treatment choices are comparable in terms of survival outcomes but the side effect profiles differ markedly. Men need to be well informed and understand all of their management options.”
The call for men to take part in the research comes at the start of September’s Prostate Cancer Awareness Month – and received some high profile attention when principal investigator Penny Schofield, head of behavioural science at Swinburne University, appeared on Channel 7’s House of Wellness on Father’s Day.
Professor Schofield said more men were getting PSA tests and therefore diagnosis numbers had increased. “The older a man gets the more likely he is to get prostate cancer eventually,” she said.
One common treatment is getting the prostate surgically removed and the second treatment is radiotherapy. Common side effects are erectile dysfunction, or urinary/bowel incontinence.
“Blokes aren’t comfortable talking about health issues. We realised there was a big problem. Men who were diagnosed with low-risk prostate cancer really didn’t understand the treatment options and they were obviously terrified about the diagnosis, they were shocked but they were very confused.”
“it’s a difficult area to navigate for men.”
Alan White, project advocate and prostate cancer survivor, was also interviewed on House of Wellness with his wife Fiona, discussing his journey dealing with diagnosis and post treatment. White opted for Active Surveillance when his prostate cancer appeared at the age of 49.
Active Surveillance is a self-monitoring treatment, eating good food, exercising and getting regular blood tests. It worked for 10 years in Alan White’s case, but then the cancer reappeared.
“I wanted to stand back and look at my options,” Alan said. “I was disappointed that I had somehow dropped the ball in that process of taking care of myself.”
He decided to have his prostate removed knowing that the two key side effects could be incontinence for a period of time and erectile dysfunction. The White’s relearned their intimacy, with new (and happy) discoveries along the way as they adopted to “a new normal.”
Alan co-designed the Navigate website, intended as a resource tool to help Australian men and their partners understand choices for prostate cancer treatment, with risks and benefits laid out.
The ‘unbiased’ information is presented in multiple formats – written, graphical and video – that take the man and his partner through various clarification exercises in weighing up their options.
It also includes over 40 videos of men, partners, oncologists, urologists and specialist prostate nurses to provide a range of perspectives and personal experiences.
The research study will run nationally and recruitment is open until May 2020.
The researchers are looking for men who have been diagnosed with low-risk prostate cancer within the last three months, who are eligible to choose Active Surveillance, who are still deciding on their treatment options, who live in Australia, are aged over 18 and can read and write in English.
Men may be referred by participating clinics, or patients can self-refer.
TAKE ACTION FOR MEN'S HEALTH
Find out what you can do during Prostate Cancer Awareness month (Prostate Cancer Foundation)