Still struggling or doing well?
Have you ever been diagnosed with prostate cancer? If so, have you undergone treatment of any kind? This article is for you.
We have created a brief survey to explore how men feel about their level of support after treatment (or during long-term ongoing treatment).
No two men will experience prostate cancer (or treatment) in the same way. Some men travel a smoother road than others.
Typical prostate cancer pathways
Smooth
Alan’s prostate cancer outcome has been one of the better ones. The only treatment he needed was the prostatectomy (surgical removal of his prostate gland). His only ongoing “management” consisted of six-monthly (and then twelve-monthly) blood tests to monitor his PSA levels – which remain almost non-existent.
Bumpy
Other men appear to be headed down the “smooth” path, but their PSA levels start rising again (even after prostate removal). These men find themselves back on the treatment treadmill.
Serious potholes & landmines
And then there are those unfortunate men whose prostate cancer is not detected until it has already spread outside the prostate. Metastatic prostate cancer leads to an ongoing treatment regime that is typically very unpleasant indeed.
Plenty of research shows that men (and their partners/carers) face a range of “unmet needs” as a result of their prostate cancer and subsequent treatment.
“Unmet needs” tend to be quite different. Some men may have only a few ongoing issues, whilst others might have none at all (how lucky are they?).
What are "unmet needs"?
According to the Prostate Cancer Foundation of Australia’s publication – A Psychosocial Care Model for Men with Prostate Cancer (2nd edition) –
The most common unmet supportive care needs for men with prostate cancer are fears about the cancer returning or spreading, uncertainty about the future, worry about close family, health system and information needs, and support interventions for sexual dysfunction.
This publication also states that men with prostate cancer have an increased risk of suicide:
Up to one in five men with prostate cancer may experience high psychological distress such as anxiety, depression or cancer-specific distress (trauma-like symptoms).
The Healthy Male website has an interesting article – Prostate cancer and supportive care: A systematic review and qualitative synthesis of men’s experiences and unmet needs – which discusses this topic. Although the review dates back to 2015 and is not Australian, the findings are still relevant.
Do men need better support & follow-up after prostate cancer treatment?
We believe that they do. Our experience talking with men and their partners over the years has consistently revealed that there are many prostate cancer “survivors” in Australia who would have benefited from better after-care.
There is a considerable body of research (Australian and from elsewhere) regarding the distress felt by men with prostate cancer (and their partners, families and carers). Unfortunately, all that research doesn’t seem to result in practical solutions that are available for men to access.
There is some support available already – for example, PCFA’s Prostate Cancer Specialist Nurses, Support Groups and the Continence Foundation’s Helpline. Not all men know about these resources – were they never told about them? Some men know about the help that is available, but they choose not to reach out and make use of it – why?
We all know that the old “one size fits all” concept really doesn’t work. Humans are so individual, darn it. That means that solving unmet needs will probably involve multiple, varied solutions – and that probably means greater difficulty and expense.
Should the difficulty and expense stop real-life solutions from being created? No, not at all. We believe that some will work better than others, and some might fail altogether. But something needs to be done!
