Would YOU be happy living with a prostate tumour inside you for years?
A new study says that many men don’t actually need treatment but...
HOW would you feel if you were diagnosed with cancer and your doctor said ‘wait and see’? effectively, this happens to thousands of men with localised prostate cancer — where the tumour hasn’t spread beyond the doughnut-shaped gland.
every year more than 47,000 British men are diagnosed with the disease, a rise from 35,000 in 2009. under NICe guidelines, a wait and see policy — officially called active surveillance — should be offered as a first option when prostate cancer is considered low risk.
This means it is contained in the gland, has a Gleason score below six and the man’s PSA test result is below ten.
The Gleason score is a measure of a cancer’s aggressiveness (in many cases, prostate cancer grows slowly and never causes a health problem).
The PSA test measures levels of prostatespecific antigen in the blood: raised levels can indicate a problem with the prostate, including cancer. If the patient’s levels are rising, it can mean the cancer is growing.
The idea with active surveillance is that the patient is monitored regularly using PSA tests every few months as well as having biopsies and scans when needed.
This approach seems to go against everything we know about cancer — that it should be removed as soon as possible. In fact, a major study published last week in the New england Journal of Medicine has strengthened the case for active surveillance rather than surgery or radiotherapy.
The decade-long study by uK researchers found men with early stage prostate cancer have just as good a chance of being alive after ten years as men who have treatments, including surgery and radiotherapy, which can have unpleasant and sometimes permanent side-effects, including loss of sexual function and incontinence.
According to the charity Prostate Cancer uK, 30 per cent of men eligible for active surveillance choose it after advice from their doctors, but it could soon be many more.
‘A lot of men decide against active surveillance because of anxiety about risks. hopefully, this study will allow them to make a choice based on facts,’ says Matthew hobbs, the charity’s deputy director of research.
One man happy to have opted for active surveillance is Doug Collett, who was diagnosed eight years ago.
‘My reaction was let’s get shot of this thing when I was diagnosed after a routine PSA test and biopsy,’ says Doug, 73, a retired builder who lives with his wife Peggy, 72, in Wotton-under-edge, Glos.
An ultrasound-guided biopsy weeks later confirmed Doug had localised prostate cancer, with a Gleason score of just under six.
WITh a PSA reading of 3.5, slightly elevated for a man of his age, he agreed to active surveillance rather than treatment. ‘After talking to Peggy, I did some research and found out about the possible treatment side-effects, which include incontinence, sexual dysfunction and bowel problems.
‘That made me worried, and I was glad when the doctor suggested I have active surveillance. It seemed the risk of side-effects was too high when the chance of prostate cancer killing me was unlikely.’
he admits it was a ‘bit strange’ to know he had a cancerous tumour. ‘even the word “cancer” is scary, but now I don’t think about it.’
he has three-monthly PSA tests and the readings remain low. he’s also had yearly digital rectal exams (the last one, a week ago, was clear) and is in excellent health.
‘My wife and I celebrated our 50th wedding anniversary in April and have a wonderful romantic life together,’ says Doug.
Professor Roger Kirby, a consultant urologist and medical director of the London Prostate Centre, agrees that active surveillance is important in helping men with early stage prostate cancer, particularly older men with a shorter life expectancy and those with serious health conditions.
But he has significant caveats. ‘You have to be confident you don’t miss the window of opportunity to treat prostate cancer that is progressing. The NhS has guidelines that should help to ensure any changes are spotted, but standards can vary greatly.’
under these guidelines, men under active surveillance should undergo PSA testing every three to four months in the first year, then every three to six months for the next three years. They should also have a biopsy after 12 months.
From the fifth year, PSA should be measured every six months. The patient may also be given a digital rectal examination once a year.
After the start of active surveillance, when an MRI should be performed, there is no requirement for further scans unless symptoms change.
‘We don’t know if the system is robust enough and working well everywhere,’ says Matthew hobbs. ‘The guidance is there, but might not always be followed. We know of men who have moved house and dropped off the NhS radar, only to find their cancer has spread.’
Professor Kirby adds: ‘Two-year gaps do allow cancer to take hold in the meantime in some cases.’ Around half of men on active surveillance end up having treatment, says Prostate Cancer uK.
Robert Boulton, 76, a retired production line worker who lives near Bristol, was one of them. he was under active surveillance for five years when his PSA started rising and he felt ‘anxious’.
Though his specialist told him it was safe to wait, he got a second opinion from a GP, who advised treatment. ‘I thought it best to get treated and they agreed.’
Worryingly, the new study suggests that over ten years, men who have active surveillance are twice as likely to have progressive disease (including cancer spreading to the bones and liver) than men who had surgery or radiotherapy. ‘We can’t dismiss this finding since it effectively means double the number of men in the wait and see category may later suffer potentially agonising bone pain, fractures of the back and liver failure,’ says Dr Thomas Stuttaford, a retired GP and patron of the Prostate Cancer Support Federation.
he underwent surgery to treat prostate cancer in 1998 and, though he experienced some permanent side-effects, he believes active surveillance has a limited role to play because it relies upon the medical teams being ‘able to spot the kitten [i.e. less aggressive cancer] from the tiger’.
‘I am concerned that it is more about saving money,’ he adds. ‘Diagnosing and treating prostate cancer safely and adequately is more expensive than waiting for something to happen.’
Professor Chris eden, a specialist in keyhole prostatectomy and a consultant urologist at the Royal Surrey hospital in Guildford, says the complications from treatment may also have been overplayed.
‘Forty per cent of my patients have erectile dysfunction before treatment for prostate cancer,’ he says. In other words, a complication from treatment may be a preexisting condition.
Incontinence following surgery is usually temporary. Robert, who has five children, says he had minimal problems after four months of hormone therapy and radiotherapy.
‘I developed man boobs during the hormone injections, but they went away.’
he has osteoporosis as a result of hormone therapy and suffers ‘aches and pains, but it was worth it for the peace of mind. Active surveillance can mean you are on edge waiting for the next test results’.
PROFeSSOR Kirby believes active surveillance will be more widely used, but says ‘the only people who should be offered it are those who are genuinely low-risk — not all localised prostate cancer is low-risk’.
‘In fact, it may be an aggressive form of tumour. I’m not confident the NHS has accurate enough ways to tell the difference.’
New genetic tests make it easier to identify aggressive early stage cancers. Prolaris, which tests for 46 genes, has been shown in studies to accurately predict the aggressiveness of a patient’s prostate tumour in conjunction with Gleason scores and PSA tests.
however, these new tests aren’t available on the NHS. ‘We are trying to persuade NICE to fund it,’ says Professor Kirby.
he points out that men who are advised not to have treatment but go on to develop terminal prostate cancer might sue their doctors.
All experts agree follow-up research is needed. The average age of the men at the start of the trial was 62.
Professor eden believes for now, active surveillance may be ‘too risky’ for many. ‘For younger men, living for ten years may not seem long. For older men, it may be a lifetime. It is important to spin out these results for another five to ten years and see what happens then.’
PROSTATE Cancer UK helpline: 0800 074 8383. or go to prostatecanceruk.org