Men with prostate cancer undergoing androgen deprivation therapy (ADT), also known as hormone therapy are calling for greater education and more personalised, ongoing support to manage the treatment's often debilitating side effects, according to a new study led by the Prostate Cancer Foundation of Australia (PCFA) and the University of Southern Queensland (USQ).
Published in the European Journal of Oncology Nursing, the study found that men treated with androgen deprivation therapy (ADT), a common treatment used to slow prostate cancer growth, often feel unprepared for its wide-ranging physical and emotional impacts, including fatigue, muscle weakening, weight gain, sexual changes and depression.
Researchers say the findings underscore the critical role of specialist prostate cancer nurses in improving quality of life for men on ADT, and in providing timely, personalised information, education and follow-up care.
The study drew on in-depth interviews with men treated with hormone therapy and specialist nurses from across Australia. It found that men want clear, plain-language explanations of what to expect from treatment, consistent follow-up, and access to someone who understands the full impact of ADT on both physical and emotional wellbeing.
Professor Jeff Dunn AO, Chief of Mission and Head of Research at PCFA, said the research should serve as a wake-up call to improve survivorship support across the country.
"This study shines a light on what men have been telling us for years - that information alone isn't enough," Professor Dunn said.
"They need someone in their corner who understands the realities of treatment, can listen without judgment, and guide them through the changes to their health and wellbeing. Specialist nurses play that role better than anyone, and every man deserves access to one."
One participant of the study described feeling 'completely blindsided' by changes he experienced on ADT. Another said he was 'absolutely smashed with information' but didn't end up with the specific answers he needed for his personal situation.
Men who had early contact with a Prostate Cancer Specialist Nurse (PCSN) said the difference was profound. However, nurses reported that many men don't have access to a prostate cancer specialist nurse locally, or are referred too late, often after side effects had already become distressing.
"By the time I'm catching them, they're already suffering all the toxicities," one nurse in the study explained. "Most men just aren't warned or given appropriate information...I've had a number of patients say, 'why hasn't anyone told me this before?'"
Another nurse said continuity of care was key: "It's one thing to be providing information in the beginning, but unless you're following through, you don't know if men are falling through the cracks."
Lead researcher and PCFA Director of Nursing, Adjunct Professor Sally Sara, said the study highlighted a major gap in prostate cancer care.
"Many men we interviewed said they weren't warned about the emotional and psychological toll of treatment or didn't know where to turn for help," Adjunct Professor Sara said.
"Nurses told us they worry about men who don't have access to specialist nurses, or who are referred for support too late, after side effects have already taken hold. Early, structured, nurse-led support can change that and drastically improve quality of life."
Prostate cancer is the most commonly diagnosed cancer in Australian men, and the third leading cause of male cancer deaths. Each year, around 25,000 Australian men are diagnosed, and approximately 30 to 50 per cent will undergo ADT during their treatment.
The researchers recommended that all men starting ADT be connected early to a PCSN for personalised education, support, and survivorship planning.
Australians can find out more about PCSN's and PCFA's nursing support services by calling 1800 22 00 99 or visiting https://www.prostate.org.au/pcfa-nursing-and-support/.
