Breaking the taboos around prostate cancer

It’s that time of year again – when moustaches are in and taboos around men’s health are out. 

Movember starts this week, gearing up in its mission to break the taboos around mental health, prostate cancer and other diseases affecting millions of men across the globe. 

Elvin Box, Movember ambassador and prostate cancer survivor, is on his own personal mission to do this. He spoke to us earlier this year about how he uses his experience to inspire men across the country to speak openly and honestly about all aspects of their health. He says 

“I am lobbying for what every person with a prostate should receive – better and quicker diagnosis of prostate cancer, that leads to undergoing treatment that results in just a minor impact upon the quality of life enjoyed by the victims.”

And he believes that one way to do this is to break some taboos around prostate cancer, and support men in understanding and voicing their experiences with the life-changing conditions that sadly for many bring embarrassment and shame. It doesn’t have to be this way.

We can start with The Big Three –anxiety & depression, sexual dysfunction, and incontinence. These conditions affect many men who are diagnosed with and treated for prostate cancer, and despite the enormous impact they place on these men, they are rarely talked about.

We’ve spoken with specialists in these areas about how the taboos placed on these conditions harm both the men experiencing them and their loved ones. Talking mental health, Oncological Psychiatrist Asanga Fernando told us 

“I think a really damning statistic of our time is that 73 percent of cancer patients diagnosed with depression, and this is across tumour types in the UK a few years ago, don’t receive any adequate evidence based treatment for their depression. And that’s for a number of reasons. But that’s a staggering statistic. Cancers across the board, about 17 percent of cancer patients suffer with depression at some point during their cancer journey. We know for prostate cancer, it’s about that.”

He believes mental health support needs to be better integrated into clinical practice for cancer patients, and is dedicated to making this happen through his work at St George’s Hospital London. 

“as a clinical community we need to drive a shift in culture towards measurement of patient quality of life as a marker of treatment effectiveness. It appears that despite recent developments in cancer treatment, many of which have improved patient survival, the clinical community has been rather myopic in failing to adequately consider how investing in the mental health of cancer patients can improve patient experience, Quality of Life, functioning, and even engagement. This involves doing things differently, namely thinking innovatively and more effectively integrating mental health and psychological wellbeing into routine cancer services”

In terms of sexual dysfunction, we spoke with psychosexual specialist Lorraine Grover about what men have told her when they are diagnosed with prostate cancer:

“a lot of men have said to me over the years that they would rather be sexually potent, whatever that definition is to them and alive, being sexually active, than not being sexually active and having their cancer cured because of the effect of the treatments of managing prostate cancer, which is so sad to hear when actually if the subject was raised with them, they would know that there are lots of things to be considering about sexuality and prostate cancer.”

She believes discussions about sexual health and practice need to happen upfront, and include partners too when appropriate.

“people need a safe environment to be able to talk about their sex lives and to be able to have that discussed with the health care professional. Partners, and women in particular, need the opportunity to talk to somebody about the impact that prostate cancer has had on the man in their life’s personality, their health, their fear, etc. It also allows a discussion to take place about ongoing sexual issues  – It could be, I’m seeing a patient in their 50s where their partner may be in the menopause or premenopausal or has had her own ill health, has never had an opportunity to talk about sex with anybody. And suddenly their male partner has been diagnosed with prostate cancer. And I’m part of that team, hopefully, and I address it and they go, wow, I’ve never had this opportunity to talk about things. You know, they’ve just been used to having sex in a certain way. There’s a diagnosis and then it upsets the apple cart. “

Addressing incontinence and urinary health, we spoke with pelvic health specialist Jane Simpson about the poor communication men receive about it:

“A patient recently told me: ‘My prostate first made its presence felt during my mid 50s when having a wee ceased to be what it was. What had always been a powerful jet dwindled to a mere trickle and three or four effortless tries where needed before my bladder felt empty. Like most men, when things go wrong below the belt, I was overcome with squeamish embarrassment and told no one.’ He actually ended up having surgery and a radical prostatectomy. ‘Having never experienced incontinence in my life, it was the last thing I expected. What I had was stress incontinence. As long as I sat down or lay down without moving, it was fine. But any kind of exertion or anxiety set it off. Female stress incontinence is discussed quite openly, even with jolly little TV ads. But nothing is ever said about the male version.’

I think that sums up about communication to do with men and incontinence.”

She added that the poor quality and availability of public loos exacerbates the embarrassment men feel around incontinence and reinforces their reluctance to talk about it.

“I think that access to public loos for men, they don’t ever think about it before they’ve had this particular issue and suddenly it becomes actually quite important. And interestingly, I’ve had a lot of conversations with guys about the fact that male loos don’t have bins in them. If you go to a ladies loo, there’s a sanitary bin to put your sanitary towel in, or your tampon or whatever. If you go into a men’s loo, there is no bin. So if you’ve got a wet pad, you’ve got to put it in your jacket pocket. Men don’t carry handbags!”

We continually hear about public toilets as both a challenge to men living with incontinence and an opportunity to discuss it openly and provide support for these men. A blog we published last  year about this attracted considerable attention from men whose lives had been compromised by their inability to access a toilet, and we continue to raise awareness about what is effectively another taboo.

What are your experiences with taboos associated with prostate cancer? We’d love to hear from you.