Two-thirds of men ‘better informed buying used car’ than over cancer

When Bafta-winning comedy writer and co-creator of Radio 4’s Dead Ringers Jon Holmes discovered he had prostate cancer in 2023, he breathed a sigh of relief. Being diagnosed at the age of 54 almost certainly saved his life and helped inspire his poignant, taboo-breaking and often hilarious podcast, Jon Holmes Says The C-Word, aimed at demystifying the disease and getting blokes talking and tested.

Opting to have his prostate removed via robot surgery because he was young enough to overcome any side-effects with the help of physio, the walnut-sized gland was, as Jon puts it, “in the bin” and he was done with prostate cancer – or so he thought. Yet despite having immersed himself in the subject following his diagnosis, he realised that like too many men, he still had gaps in his understanding about treatment.

So three years on and, while thankfully cancer free, Jon’s back fronting a new quizcast to share some new lessons about this sneaky little disease – not least that it can recur even when the prostate had been removed entirely. “Traditionally, we’re happier discussing sport or films in the pub, rather than anything to do with how many times we have to get up in the night to go for a wee,” he says.

“Before I was diagnosed with prostate cancer in early 2023, I hadn’t got the slightest idea what a prostate was or did and was only dimly aware that I even had one – although I certainly didn’t know where it was. It’s fair to say, however, that once one is on the cancer treadmill, it’s a pretty steep learning curve.

“But then I realised there was quite a bit I still didn’t know. The reason I went for surgery was that they told me I was young enough to overcome any side effects – incontinence, erectile problems, all that stuff – with physio. That turned out to be true, so that’s great, but I thought when you take out a prostate with cancer that hasn’t spread and put it in the bin, the cancer also goes in the bin, right?”

Wrong! When Jon was told he needed to continue PSA (Prostate-Specific Antigen) tests post-surgery, he asked why? “Oh, just in case any of the cells escaped,” came the answer. It was, the broadcaster admits today, a bit of a mike-drop moment.

“I didn’t really have a clue about this but it turns out cells can be left behind in the bed of the prostate, where it used to sit, so that’s why they give you tests,” explains Jon. “Prostate cancer really can come back from the dead like some kind of cellular zombie! It goes from three months to six months to a year. I’m now on yearly tests.”

Anyway, as a result, Jon’s teamed up with private cancer treatment provider GenesisCare UK to front a quiz-style podcast, The Big C QuizCast, aimed at helping patients understand the full picture when it comes to treatment – including the risk of recurrence and what options are available if, God forbid, their cancer does return.

Despite all the publicity in recent years, and a spate of well-known patients including, most recently, Jeremy Clarkson, research reveals a lack of awareness with nearly half of men (47%) saying they don’t feel fully informed about treatment options and many wrongly believing that surgery guarantees a cure. In reality, studies show between 16 to 46% of men who undergo prostate removal live to see their cancer return.

Reasons for their knowledge gap include feeling overwhelmed (45%), scared (36%) or embarrassed to ask questions (26%), or being confused due to lack of clear guidance (36%). Astonishingly, nearly two-thirds of men admitted they felt better informed when purchasing their last car than when deciding on prostate cancer treatment.

Accordingly, Jon’s new podcast blends comedy with insight – featuring expert clinicians and patients – and aims to tackle myths and ignorance around treatment while hopefully empowering men to think beyond initial diagnosis and consider long-term outcomes.

The campaign also highlights newer treatments such as advanced radiotherapy, which can offer high cure rates while preserving quality of life. MRI-guided SABR as a treatment option if the cancer recurs locally, another reason that patients need to be aware of their full treatment plan at the time of diagnosis.

With a staggering 92% of men admitting gaps in their knowledge about their treatment, the message is clear, says Jon – ask questions and don’t assume your first treatment is your last. Now 56, he admits that, before being diagnosed, he “hadn’t got the slightest idea what a prostate was”, and believes embarrassment and lack of open conversation stops too many men from asking the right questions.

“When they tell you you have cancer you just switch off,” he admits. “That’s where the information overload starts because you’re not even listening, let alone preparing yourself to read all the information leaflets you’re going to be sent. I found it totally overwhelming and a lot of men I spoke to did too. And that means making a decision about treatment is really difficult.”

Depending on age, radiotherapy is far better for sexual function and avoidance of incontinence than prostate removal. Dr Yae-eun Suh, Consultant Clinical Oncologist at GenesisCare UK says, “Prostate cancer patients need to be aware that with modern radiotherapy techniques for early localised prostate cancer that cure rates are very high – we know from a large trial that the chance of PSA control after five years with stereotactic radiotherapy [a way of giving radiotherapy to a tumour from many different directions that helps to avoid healthy tissues and reduces side effects] is very high at around 96%.

“When I discuss treatment options with patients, I always tell them to explore what the most important thing is to them. If it’s sexual function, then we know from multiple trials that radiotherapy is better for sexual function than surgery.”

Today Jon, who also created The Skewer, an award-winning satirical take on the week’s news for Radio 4 and BBC TV, pays tribute to Stephen Fry for saving his life. Having noticed a stream of adverts suggesting men over 50 should get tested, he steadfastly ignored them until one popped up with Fry’s face on it. It made him finally phone his local GP in Canterbury, Kent.

“I learned very quickly they’re not going to see you as a matter of routine,” he says. “When I asked about routine testing for over-50s, the GP kind of sighed. He told me they didn’t ask people to come in unless they had symptoms. It’s not like breast or cervical cancer because PSA tests aren’t highly accurate. He asked me to call back if I ever got symptoms then, just as I was about to put the phone down, he asked if I had any family history of prostate cancer and I told him I didn’t know because I was adopted.”

It was a Sliding Doors moment – the doctor told Jon to come in “just in case”. “If it wasn’t for that I’d never have got through the door,” he admits. “If it hadn’t happened, I’d have prostate cancer today and probably wouldn’t know a thing about it.”

When the blood test came back to show he had raised PSA levels, he was referred for an MRI scan and then a biopsy and, finally, a full prostatectomy – a five-hour operation by a surgeon using a virtual reality headset to control a five-armed robot. The experience informed his previous eight-part podcast with guests including comedians Mark Steel (throat cancer) and Richard Herring (testicular cancer); showbiz veterans Eric Idle and Stephen Fry; actors Colin McFarlane (prostate) and Ben Richards (bowel); The Alarm frontman Mike Peters, whose leukaemia has since taken his life aged 66; and journalists Nick Owen (prostate) and Jeremy Bowen (bowel).

All of them talked in eye-watering detail of biopsies, catheters, chemo, incontinence and all kinds of other unwittingly humorous indignities that left listeners squirming in sympathy, howling with laughter and moved to tears.

“Everybody spoke so honestly and brutally rawly and with humour about it,” says Jon today.

Since the podcast, Jon has had emails from people just telling him “you made me go for a test”, or “my wife heard your podcast and made me go a test and it’s come back positive and you’ve saved my life”. He hopes the response to the new series will be equally positive. “It’s a stereotype really but men often just don’t talk or think about these things,” he adds.

“That’s why I wanted to talk about cancer in as humorous a way as possible, to remove the stigma around it. It’s like, ‘Yeah, s*** happens, doesn’t it?’ So let’s turn around, face it, talk about it and somehow get through it together.”