Prostate cancer survivors living longer, but they report lower quality of life

Prostate cancer survivors living longer, but they report lower quality of life

ABC·2021-06-14 18:00

Receiving a diagnosis of advanced prostate cancer at the age of 57 came as a "huge shock" to Tony Maxwell.Key points:A new study has looked at long-term survivors of prostate cancerMany survivors report ongoing issues, including incontinence and sexual dysfunction, and a lower quality of lifeThey also report a lack of support managing persistent side effects, especially sexual disfunction"There were no symptoms, at all," he explained.Mr Maxwell, a father of four and grandfather of eight, was first diagnosed in 2003.And nearly two decades later, he's still living with the disease: one of a growing number of prostate cancer survivors in Australia.Daffodil Centre figures show one in six men will be diagnosed with prostate cancer before their 85th birthday.The five-year survival rate is 95 per cent,  shows  survivors report a lower quality of life and ongoing issues with incontinence and sexual dysfunction, according to a new study.Experts say more needs to be done to support survivors.Prostate cancer survivors living longerA team of researchers led by Carolyn Mazariego of the Daffodil Centre interviewed men who had been living with the disease for 15 or more years.What is fuelling rural Australia's prostate problem?When Dennis Box thinks of the men living in his small farming community, he loses count of those who have had prostate cancer.Read more"The good news is more men are surviving with prostate cancer than ever before," Dr Mazariego said."Now it's about how well they are surviving it."The prostate is the gland between the bladder and the rectum, and surrounds the passage where urine and semen pass.As a result of its location, prostate cancer treatment can lead to impotence and incontinence.Long-term survivors interviewed for the study reported feeling abandoned, and said they weren't given enough support to manage persistent side effects, especially when it came to a lack of sexual function.Survivors said they weren't asked or couldn't recall being asked about incontinence or sexual disfunction by specialists during follow-up appointments."There was a lot of disappointment, whether that was within themselves or in the healthcare professionals," Dr Mazariego said."They felt like they never had the opportunity to discuss those issues."The five-year survival rate for prostate cancer is 95 per cent.(Getty Images: 7postman)'They've lost their manhood'Mr Maxwell, who helps to support other survivors, wasn't surprised about the study's findings."A lot of men don't want to talk about it, it's a matter of shame or privacy or hide it under the rug," he said."They've lost their manhood, and close up like a clam."We need to be a bit more proactive to provide services for those people."Mr Maxwell had surgery to remove his prostate and takes hormone treatments which help slow the growth of his cancer.Health in your Instagram feedFollow @abchealth on Instagram, where we're busting myths and sharing practical, smart health advice.Read moreHe likened the treatment to "chemical castration"."I don't have any capabilities there, and I haven't had any since 2003," Mr Maxwell said."That's a substantial negative."Mr Maxwell said, although he had the support of his wife and family, a lot of men found the adjustment challenging."It's hard on partners, obviously, and hard on relationships," he said."The urinary incontinence thing is an inconvenience, but it isn't the end of the world for most people."Sexual dysfunction is a much bigger issue."Time doesn't always sort out problemsProstate Cancer Foundation of Australia chief executive Jeff Dunn described the study's findings as "concerning", but not altogether surprising.He said up to 40 per cent of men diagnosed with prostate cancer reported ongoing issues with their physical or mental health.And Professor Dunn said many were suffering in silence."We need to make sure the community is aware that there are downstream consequences for the diagnosis and treatment of prostate cancer for many men," Professor Dunn said."Time does not sort all of these problems out for all men."There are a substantial number of men who over time, after many, many years, still report concerns and a lower quality of life as a consequence of a diagnosis of prostate cancer and we need to do something about it."Health in your inboxGet the latest health news and information from across the ABC.Normalise uncomfortable conversationsAlthough long-term survivors still reported issues with incontinence and sexual dysfunction, they seemed less concerned about it as time went on."It's been 15 years out from their diagnosis now, so as any human being you kind of adjust to your circumstances over time," Dr Mazariego said."Had we interviewed the men and got their personal stories much earlier on in their pathway, I really think we would have seen a much bigger impact to their quality of life."Dr Mazariego wants urologists and specialists to have frank and honest conversations with prostate cancer survivors about incontinence and sexual disfunction in all follow-up appointments. "Every man should have the opportunity to discuss it," she said."These conversations can be uncomfortable, but it's important."

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