I’ve been really battling with the current blog for a few weeks to be honest…hence the delay.
I’m still not sure how I am going to say what I want to get across,maybe I am stirring something that doesnt need stirring, maybe there basically isn’t an answer right now. But I’ll investigate and hope there soon will be.
When I was nursing in the UK, my Macmillan Nurse speciality was urological malignancies. The biggest group of patients was by far those going through diagnosis, treatment and rehab for prostate cancer.
Now-a-days I still work with men /couples trying to rebuild a sex life following the sexual consequences of prostate cancer and treatment..and.. I also work with men with spinal cord injury. And this is where my curious mind got me in a pickle as I reflected and thought how rarely I met a man with SCI in the prostate cancer service (never). So it seems that men with SCI don’t get prostate cancer?
Now there are two angles to approach this from. The prostate cancer side, and the SCI side. What information do the prostate cancer charities provide for men with SCI, and what information does the SCI world give to injured men,about prostate cancer. Also, what does research tell us about risk and incidence for prostate cancer in the spinally injured community?
You may wonder why this is a potential ‘issue’?
Well – most men with early prostate cancer do not present with symptoms produced by the cancer itself. Most come to clinic because they have bladder problems – peeing too often, small volume, getting up too much at night, taking a long time to start etc. In the investigations for their waterworks symptoms they may have a PSA test. The PSA test is a blood test that, if raised, could indicate a prostate issue (in the absence of a urine infection which can also elevate a PSA test result). Men also have a DRE test. This is a ‘digital rectal examination’ which is a fancy way of saying a doc puts a finger in the man’s back passage to feel the prostate through the rectal wall. It’s a pretty numb test to be honest, but it adds something to the clinical picture, sometimes. To read lots more than I can say here about prostate cancer, I’d point you to Prostate Cancer UK – https://prostatecanceruk.org/
The thing is … men who do not void their bladders ‘naturally’ but need to use catheters to do that, wouldn’t present to the GP with waterworks issues….they wouldn’t know that things are different, except maybe if the passing of a catheter became more difficult. Additionally, a PSA test wouldn’t be reliable because the presence of a catheter could falsely alter the result. So, all they are left with is a DRE…which as I have already said, is a pretty numb tool and wouldn’t detect a very early prostate cancer anyway. It’s better than nothing…but…you can see why I am concerned.
I began my quest by asking Dr Google, but he didn’t come up with much in the way of information for SCI men, with the exception of the Reeve Foundation site. It is general information about prostate health but acknowledges cancer issues and I think is a good place to start! Follow this link… https://www.christopherreeve.org/blog/life-after-paralysis/spinal-cord-injury-and-prostate-disease
What else did Dr Google say? Well I came across several articles and research papers that state that;
A) Men with SCI and particularly men with high breaks have a significantly lower incidence of prostate cancer. This, they think, is to do with hormones and denervation of the autonomic nervous system. In a way this is good news and goes some way to explaining why in 14 years I never met a man with Spinal Injury in a prostate clinic.
B) There is bad news too. Those men with SCI who do go on to develop prostate cancer, have more advanced disease than those who are not injured. But who tells men this? Who tells men what to look out for or when to or even that they ought to ask for a test?
I next turned to the 3 charities that I considered best placed to answer the information questions. Prostate Cancer UK, Macmillan Cancer Support and Cancer Research UK.
I first did a thorough search of the sites, then did web-chat or dropped an email to ask if they provided any SCI SPECIFIC information about prostate cancer? Sadly, NONE of them do. I was sent various articles to read – most of which I had already discovered and PCUK also sent me a Daily Mail article. Via web-chat I asked if Macmillan and PCUK could please ask their information officers to consider putting out some info for SCI men who I feel are disadvantaged by lack of awareness and both said that they would do so.
A look at the SCI support charities didn’t come good either. I searched ‘prostate’ and ‘prostate cancer’ on Spinal.co.uk but it didn’t bring up anything and the same went for Aspire and Spirit-charity. I’ve emailed and await responses. I also took advantage of a personal contact (a spinal surgeon in Germany) and she is having a dig around too.
I’ve drawn a bit of a blank and I am both sorry and a bit frustrated. It could just be a question of lack of good quality studies on which to base very specific information for SCI men, but that doesn’t help men to feel in any way recognised or empowered. For now, my advice for ‘aging’ men with SCI would be to read the Reeves Foundation page, have a chat with your GP or Spinal unit specialists and follow their advice. Maybe that is just to be like all the other men in the UK – there is no screening programme in the for prostate cancer, so if it doesnt seem ‘broke’ don’y worry…but I so still feel that a special case could be considered for older SCI men (with lower breaks?) who do not pee.
If I hear anything useful…I’ll let you know next time. If you are a man with SCI and HAVE been given information or had a chat with a doctor about prostate cancer, please can you let me know?
Meanwhile, it is Movember…the month when men grow their moustaches to raise money for Prostate Cancer UK along with other men’s health charities. If you have joined in, how is your’s coming along? Is it a ‘patchy one’? If you haven’t joined in, please could you consider sponsoring someone who has? You can read about Movember here – https://uk.movember.com/