“You’ve got prostate cancer.” It’s a phrase no man wants to hear and while some people automatically associate a cancer diagnosis with aggressive treatments or death, a localised, low-risk prostate cancer is actually not a death sentence if caught early.
Prostate cancer tends to be slow-growing in some men and surgically removing it isn’t always the best or safest option. While early detection and treatment can save lives, making a decision around treatment can be scary and confusing because there are so many options available.
Many men may opt for active surveillance – where a GP or urologist simply monitors the progression of the cancer through regular blood tests, digital rectal exams, MRIs and biopsies.
In some circumstances, removing the cancer would actually be more problematic for a man’s wellbeing.
They may also choose to have the prostate surgically removed through a prostatectomy, while radiotherapy can also be considered to treat localised prostate cancer.
Now, research from the Peter MacCallum Cancer Centre in Melbourne has found that men with early stage, low-risk prostate cancer face more difficulties with treatment decision-making than any other cancer clinical group.
This is because treatments have similar survival outcomes, but the side effects between treatment options can differ dramatically and range from incontinence to erectile dysfunction and even loss of penis length.
As a result, the Navigate trial has been developed – which is currently open to men Australia-wide who have been diagnosed with low-risk prostate cancer in the last three months but aren’t sure what steps to take next. A special online tool has been created by men to help men and their partners better understand their management options, ranging from simply monitoring cancer to surgery or radiotherapy.
As part of the study, researchers are trialling the new online decision aid — which helps men weigh up the pros and cons of each of the management options through videos of other men and their partners talking about their experiences, expert advice from clinicians and prostate cancer nurses, as well as information about the benefits and potential side effects of all treatments.
There are also various questionnaires that men and their partners can work through and upon completion, the aid will provide the best two of four management options based on the individual’s answers and values.
“The trial is about ensuring men are informed about the decision making around prostate cancer, but particularly when it’s considered to be low-risk prostate cancer,” Alan White, prostate cancer survivor and men’s health advocate, tells Starts at 60. “You’ve got five or six options to consider and for most men, they don’t know they’ve got a prostate or what it does and all of a sudden they’ve been diagnosed with this prostate cancer. The impact is going to be pretty full-on for them and their partner.”
White was initially diagnosed with low-risk prostate cancer in 2000 and while he initially opted for active surveillance, there was nothing like the new decision aid to help him figure out which option was best for him. After 11 years of monitoring his cancer, doctors decided it was aggressive and after weighing up whether he’d have radiology or a prostatectomy, White decided to have surgery to remove his cancer.
“For the first 12 months after the operation, there were the ‘what ifs’. What if I’d done this and what if I’d done that and what if I’d found out earlier if there was cancer? Could I have made any changes?” White said.
“I had some information around my time, but I felt I could have had more. I could have been more informed and therefore a lot more clear around the decision-making I was going through.”
Participants accepted in the trial will be randomised to either the Navigate website and decision aid or to the Prostate Foundation Australia website – which is the best publicly available website for information about prostate cancer in Australia. Men are able to self-refer to the study or can be referred from participating hospitals or directly from their clinicians.
White – who has been an active consumer advocate at Peter MacCallum Cancer Centre and regularly works with men who have prostate cancer – said even though information around prostate cancer management and treatment has improved since his initial diagnosis, he still comes across men who aren’t fully informed about their options.
“I guess the best part about the decision-making trial is that men are a lot more easier at making that decision,” he said. “There’s less anxiety about dealing with the surgery or the treatment they decide on eventually.”
For more information about the Navigate trial or for register, visit navigateprostate.com.au.
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