Support after prostate cancer treatment

We have received 83 responses to our Supportive Care After Prostate Cancer Survey.  Thank you to all those men who took the time to respond – we really appreciate it.  We also received several personal responses via email, which were fantastic.

For those of you who would like to go straight to the numbers and pie charts, you can view the PDF document by using the PDF viewer below.  Or you can download the PDF using the button beneath the viewer. 

Were the survey results surprising?

Not really.  The responses reveal what we already thought was the case – some men manage quite well during and after their treatment, whereas other men really get the rough end of the stick.  It’s definitely not a “one size fits all” situation.

It was not surprising to see that erectile dysfunction is a sizeable problem.  Nevertheless, it was sad to see that so many men had given up trying to fix their ED.

It’s also to be expected that men with ongoing treatment (presumably most of whom have advanced prostate cancer) report more relationship struggles and decline in their quality of life.

What support did men want?

Image of broken wooden chair

We didn’t expect to see so many men ticking the boxes for referral to Prostate Cancer Support Groups and Prostate Cancer Specialist Nurses.  Does this mean that specialists (and/or GPs) are not telling men about these support services?

Another popular choice for participants was referral to specialist services to help men deal with their treatment side-effects.  This would presumably cover things like fatigue, pain management, bladder (and bowel) problems and loss of erections and libido.

We were interested to see that a sizeable percentage of respondents were keen to have follow-up appointments (or emails/texts) from their treatment team.  Perhaps this represents a need for men to discuss concerns that they were uncomfortable raising themselves (niggling doubts about ongoing issues or fears).

One man responded to the “other” category to say that he would like to have known “the complete package” from the day he was diagnosed – “options, treatment and possible consequences, etc.”

Two men (both in the ongoing treatment group) included “other” responses – one reported that he was “with a Prostate Cancer Support Group, also have a Cancer Specialist Nurse. And have an excellent Medical Oncologist as well.”  The other man and his wife had spent 20 years “blundering our way forward”.  Whilst they now had support, he lamented “the damage done along the way”.

And the final question?

In response to the final survey question, respondents were asked to rate how they felt about the following statement:-

“I would like to see better follow-up care and support for other men in my situation in future.”

There was considerable support for that statement, with 52% strongly agreeing and 40% agreeing.

6% of responders were uncertain, neither agreeing nor disagreeing with the statement.  Only 2% of the responders disagreed with the statement.

How are men coping?

It was good to see that 12% of men in both the “finished treatment” and “ongoing treatment” groups reported that they were responding well to treatment, or had responded well and felt no need for further support or assistance.

Unfortunately, a significant response from both groups related to erectile problems, with a whopping 24% of men whose treatment had ended saying that they had given up trying to fix their ED.  18% of the men who are still undergoing treatment ticked this box too.

Quality of life during or after treatment was another problem area.  Around 19% of men in the ongoing treatment group reported that their relationship was suffering (or had suffered) and that their quality of life was really suffering.  Around 11% of the men whose treatment had ended reported the same situation.

Supportive partners were part of the journey for 9% (treatment complete) and 10% (ongoing treatment).

One man in the “ongoing treatment” group reported that he “changes doctors when not satisfied. Side-effects remind me I should have taken charge earlier.”

Where does this leave us?

Survey results showed that a significant number of men were keen to receive a referral to a Prostate Cancer Support Group (or a Prostate Cancer Specialist Nurse). This confirmed our anecdotal evidence that many men are not told about these two sources of help and support.

Once they know that help is available, why are some men motivated to pursue it whilst others remain stuck with their problems?  Do some men feel that they can’t be bothered? Do they find it all too hard?

Perhaps it’s a bit like doing pelvic floor exercises.  We know that men who do these exercises every day are more likely to be leak-free.  Pelvic floor exercises also help get Percy in better shape. 

We hear from men in Support Groups that they “forget” to do their exercises, or they “get slack”.  Maybe the men who have strong motivation and stick to their routines are the same men who would be more likely to pursue support for any problems along the way.

Are some men too uncomfortable or embarrassed to discuss their problems?

Do doctors or specialists tell their patients about the help that is available?  If not, should they?  Should “support” be a standard part of ongoing care after treatment?

Should there be a standard “optimal care pathway” for men who have completed their prostate cancer treatment?

Should there be something similar in place for men who require ongoing treatment?  Probably.

Who pays the piper?

We have all seen the issues faced by the Australian healthcare system – especially since COVID.

We also know that the Federal Budget is soon to be announced and it is likely that extra funding for healthcare will be much less than we need or want.

So, if greater post-treatment support and assistance is to be provided in future, how should it be funded?

Should “support” be available via the public hospital system (or general practice), and be covered by Medicare?  Or would it be more likely to be a “user pays” variety of service?  What do you think?

How does all (or any) of this work for men in regional, rural or remote areas?

What kinds of support might be necessary (or desirable)?  Might we be looking to online solutions like telehealth or webinars?  Again, what do you think?

Some ideas to consider

Some of you may recall the NAVIGATE clinical trial which Alan and I were involved with for some years.  The website that was created, with its inbuilt decision aid tool, could provide an idea for one way forward.

When a man is diagnosed with prostate cancer, he (and his partner, if he has one) could be given access to a website that contains key information about all aspects of prostate cancer, the potential treatment pathways, and side-effects of all treatments.  This website could also include information for men (and their partners) regarding intimacy changes that might result from treatment.

The NAVIGATE website contained clear, accurate and helpful information.  There were videos with clinicians, as well as videos with men who had made different treatment choices.  There was also video input from some partners (including me).

Once treatment is completed (or as it goes on, for those men who need long-term treatment), a similar website could be used to deal with side-effects, etc.  Whilst face-to-face support is wonderful, it is not always possible (or affordable) – high quality, easy to understand videos and information could be a good way to bridge the gap.

We recently returned from giving a presentation to the Combined Prostate Cancer Support Groups of Rural New South Wales in Dubbo. 

At the conference, a member of the Dubbo group suggested to me that it might be helpful for pre-treatment information as well as post-treatment assistance.  I think that is an excellent idea, as it would help men (and their partners) to anticipate changes to their lifestyle and relationship.  It could also provide them with strategies that they could begin to practise, potentially giving them a better post-treatment mindset.

Now, I think it’s over to you, dear readers, to check out the survey results and get back to us with any ideas that you come up with to resolve the existing gaps in the support system.  We look forward to hearing your ideas.