It’s scandalous… men have a right to know about it
ous doctor about it, they’ve been strongly discouraged – even told they’d be risking their life by having HIFU. Obviously, this puts a lot of men off when in fact, they could be ideal candidates.’
Mr Sayer, who founded charity Prost8 UK in an effort to improve access to HIFU, said: ‘Thousands of men have gone through unnecessary treatment since I had my diagnosis and that i s a crime really. Even if you are not suitable, you deserve the right to know about all the treatment options.’
Not all doctors are convinced, however. Although five-year survival rates are known, data on the long-term effectiveness of HIFU is still being gathered.
This, says Mr Dudderidge, is why NICE don’t recommend it as a standard treatment.
The available evidence does also raise some concerns. One in five men who have HIFU will require a second session, usually because some of the cancer was missed. And seven per cent of patients still need a prostatectomy afterwards.
HIFU always leaves scarring within the prostate which Anthony Koupparis, a prostate cancer specialist at the Bristol Urological Institute, says can make later surgery challenging. There are also question marks over whether there is a need to treat less serious prostate cancer cases.
In May, NICE said that men with low-risk cancer should be offered a choice between radiotherapy, surgery and active surveillance – which involves regular tests and scans to check the progress of the disease – all of which have similar survival benefits.
Mr Dudderidge agrees that for some men with the disease, it is best to do nothing. He only recommends HIFU to men with mediumrisk prostate cancer – those who aren’t suitable for active surveillance – or men who can’t ‘psychologically manage’ their diagnosis.
‘ I’m not saying that everyone should be recommended this treatment,’ he says.
‘But doctors should be informing suitable patients of its availability and of i t s existence, because withholding that information is not fair.’
Mr Koupparis agrees that HIFU is an appropriate, safe option for some men. But he believes that in years to come, an increasing number of men diagnosed with prostate cancer will avoid treatment altogether.
‘ Do I think HIFU will become more widespread? No – quite the opposite,’ he says.
‘That’s nothing to do with HIFU. But I think we will come to appreciate the true biology of prostate cancer and realise that actually we don’t need to be treating many men with early, localised cancer in the first place.’
IT DIDN’T WORK FOR ME BUT BOUGHT ME TIME
THE downsides to focal therapy are all too familiar to 55-year-old journalist James, who agreed to speak anonymously about his experience. He was diagnosed with prostate cancer in 2012, aged 48, following a worrying PSA test result which he’d had as part of a general private health check.
London singleton James has since undergone HIFU twice, cryotherapy and, finally, in March this year a radical prostatectomy.
Because of scar tissue left by earlier treatments, his surgeons were unable to avoid damaging his nerves while removing the prostate. The surgery has left him incontinent, and suffering from erectile dysfunction. He uses Viagra to combat this.
He admits that if he had chosen surgery to begin with, he may have suffered fewer complications – yet doesn’t regret having HIFU.
‘ Because I was younger, my cancer was likely to be the more aggressive type, so active surveillance wasn’t an option,’ recalls James. ‘ I was i nitially recommended a prostatectomy, but after doing research and speaking to consultants, I opted for HIFU.’
Like many men in his situation, post-surgical complications after prostatectomy were the deciding factor. ‘It wasn’t just about sex. But I was young. I wasn’t ready for impotence or incontinence.’
Not all of James’s medical team were convinced.
‘Some doctors who had reviewed my case said they thought surgery may have been a better option,’ he admits.
Treatment, for the main part, was straightforward and the procedure was deemed a success, initially.
But in 2016, James’s PSA levels began to rise again and scans confirmed the cancer had returned.
A second round of HIFU, and then later cryotherapy treatment, failed to clear the tumour cells.
‘ They said in my case, HIFU didn’t work as well the second time due to the scar tissue in my prostate l eft by t he fi rst round of treatment. This year, the cancer was still growing and I opted for surgery.
‘Yes, perhaps I’m in a worse place now because of the treatment I’d had before surgery. But I still think I made the right decisions. HIFU bought me time, and it should be offered to men who want to avoid or postpone the collateral damage that comes with a prostatectomy.
‘I feel like I gave it my best shot. But now, I just need to live.’