HIFU Focal Therapy – a true story.
Read the story of Prost8 UK’s founder, Paul Sayer, who has experienced focused ultrasound (HIFU) treatment for prostate cancer. As featured in the Mail on Sunday Health Section 13 October 2019.
There’s a prostate cancer cure that can spare a man’s sex life – so why won’t doctors tell us about it?
How high-intensity focused ultrasound could transform treatment of the disease.
- Paul Sayer, 64, from Southend-on-Sea in Essex, diagnosed with cancer in his 60s
- In July 2018 he received high-intensity focused ultrasound treatment for disease
- Scalpel-free treatment involves ultrasound beams that accurately blast tumour cells
- Afterwards, few patients suffer sexual problems associated with surgery or radiotherapy
It was an agonising decision – and one faced by thousands of British men each year. Paul Sayer had been given the devastating news that he had prostate cancer. It was aggressive – and his surgeon said the best chance was a major operation.
They could get him into theatre within ten days. And yet, possibly more frightening than the cancer itself was the possibility that the procedure would render him incontinent and impotent – for the foreseeable future at least. The alternative, he was told, was radiotherapy. But there were similar risks and less chance of a cure.
‘My surgeon was strongly in favour of surgery,’ recalls the 64-year-old charity fundraiser from Southend-on-Sea in Essex. ‘And the radiotherapist told me radiotherapy was better. I was worried about both options – as they’re both pretty final when it comes to maintaining normal sexual function.
‘Oddly enough, I was less scared of having the disease than I was about what would happen after treatment. I was in my 60s, active and happily married. I didn’t much like the idea of having to wear pads in my underwear for the rest of my life. What man would choose that?’
During tense discussions with his consultant, Paul mentioned that he had read about another option: high-intensity focused ultrasound, or HIFU. The scalpel-free treatment involves energy beams that blast tumour cells with pinpoint accuracy. Afterwards, few patients suffer the incontinence or sexual problems that often go hand-in-hand with a more major operation.
Paul says: ‘The way I understood it, HIFU attacks the tumour directly without damaging anything else. And because of this, there was less chance of damaging the nerves round the prostate that control continence and erections, which appealed to me. But my doctors shut down the conversation. They said the HIFU was not a suitable treatment for my cancer.’
‘My GP hadn’t heard of HIFU for prostate cancer, but agreed.’
The procedure was carried out in July 2018. Paul says: ‘I was out of hospital that night. I had a catheter for a week and after that, I just got on with my life. I didn’t suffer any complications. And, although I’m having regular tests to monitor things, the cancer is gone.
THOUSANDS OF MEN ARE NOT SO LUCKY
Paul, it would seem, is lucky – not because his treatment was a success, but because he was able to have it at all. HIFU was approved by health chiefs more than a decade ago, yet just five out of 135 NHS trusts are regularly offering it, and ‘many doctors simply are not telling men it exists’, claimed University Hospital Southampton urologist Tim Dudderidge.
Instead, thousands of men are having surgery and radiotherapy without being told there is an alternative, he added.
Some estimates suggest that up to 12,000 prostate cancer patients every year could be eligible for some form of focal therapy, a term that encompasses HIFU and cryotherapy, a less widely available treatment which involves freezing the tumour. According to recent data, just 1,900 patients have undergone these procedures in the UK over the past ten years.
Mr Dudderidge, who also works with The Focal Therapy Clinic, which provides advice on HIFU to men with prostate cancer, says: ‘Surgery often leaves men with long-term erectile dysfunction, and four in ten will still need an incontinence pad after a year. This can be devastating, especially for younger men who may have active sex lives.
‘Of course, if it’s a choice between dying of cancer and an operation with side effects, most men would choose the op. But many could be cured by HIFU, which would spare them from these life-changing complications.’
A big part of the problem is that the NHS advisory body, the National Institute for Health and Care Excellence (NICE), does not tell doctors to routinely offer it to patients.
This, Mr Dudderidge said, needs to change. ‘Patients have a right to know about it, so they can make an informed choice about their options. But the fact is many don’t, which is scandalous.
SURGERY SAVES LIVES… BUT THERE IS A PRICE
About 48,000 men are diagnosed with prostate cancer every year in Britain, accounting for a quarter of all male cancer cases. A third of patients with the disease are over 75 – but the incidence has increased six-fold in men aged 50-plus in the past 20 years.
‘These are often otherwise fit and healthy men with careers, and love lives,’ says Mr Dudderidge.
Slow-growing, early-stage prostate cancers often don’t require surgery or radiotherapy. But some tumours are more aggressive or faster-growing, so doctors must act before the disease spreads.
In these cases, men are often offered surgery to remove the entire prostate: a prostatectomy.
The prostate gland is part of the male reproductive system, and is vital in the production of semen.
It is about the size of a walnut and sits below the bladder, around the urethra, the tube that carries urine out of the body. Because of its position, removal of the gland can risk damaging the nerves responsible for bladder control and erections.
The operation is remarkably effective. About one in seven prostate-cancer patients undergo surgery, and more than 80 per cent are alive ten years later.
But there is a trade-off. A recent study found that 83 per cent of men who had a prostatectomy still suffered erectile dysfunction six years after the procedure.
And nearly one in five needed to wear absorbent pads to combat urinary incontinence.
Some men are offered radiotherapy instead of surgery. This involves using powerful X-ray beams to destroy cancer cells in the prostate, sometimes after a course of hormone treatment.
But three-quarters of men are left with erectile dysfunction.
WHY HIFU CAN REDUCE RISK OF SIDE EFFECTS
HIFU involves no incisions or cutting. Instead, MRI scans, which allow doctors to see structures inside the body, are used to pinpoint the location of the tumour within the prostate. Then, beams of ultrasound energy are fired into it.
These heat and destroy tumour cells without damaging surrounding tissue, as radiotherapy can do.
Early studies indicate it is just as effective as surgery and radiotherapy but due to the focused nature of the procedure, side effects are dramatically reduced.
Recent research, which included men with medium- and high-risk cancer, found those who had HIFU had a two per cent risk of urinary incontinence and a 15 per cent risk of erectile dysfunction after five years. Despite this, many men are in the dark about the approach, experts claim. Prof Ahmed said he often meets patients who have not been informed about the treatment by their consultant.
‘The vast majority we see have found out about it on their own,’ he says. ‘Patients also tell me that when they have asked their previous 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 is 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 medium-risk 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 its 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 initially 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 left by the first 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.’
- For more information about HIFU, go to prost8.org.uk or call 020 3858 0848.