Prostate cancer: to test or not to test?
New Zealand's Ministry of Health is taking a different road from other OECD countries when it comes to PSA testing. Press health reporter OLIVIA CARVILLE delves into the reason why.
Bill and John.
Both men are 65 and don't know they have prostate cancer.
Bill decides to have a PSA test. The test leads to a biopsy which finds a cancerous tumour.
He has surgery to remove his prostate gland and is left impotent and incontinent. He dies aged 75.
John has read up about PSA testing and decides not to get tested unless he has symptoms.
At 70, he starts having problems, goes to his doctor and has a PSA test.
John is diagnosed with prostate cancer and dies five years later.
The story of Bill and John is how the American founder of the prostate specific antigen (PSA) illustrates the health dilemma his discovery created.
University of Arizona research professor Dr Richard Ablin says those who believe in PSA screening will claim Bill lived for 10 years after his diagnosis, whereas silly John lived for only five.
"But, the truth of the matter is, both men died at the age of 75 and who do you think got it right?"
This conundrum is causing a health controversy in New Zealand.
In light of a leading United States Government taskforce report that found PSA testing does not save lives and causes more harm than good, all OECD countries are now questioning the value of the test - except us.
A PSA test measures levels of the enzyme in the prostate gland through a blood test.
High PSA levels often prompt a biopsy and if a cancerous tumour is found, the prostate gland is surgically removed or the patient undergoes radiation treatment.
NZ BREAKS FROM OTHER OECD NATIONS
New Zealand's Ministry of Health is taking a completely different road from other OECD countries when it comes to PSA testing.
Last year it printed thousands of posters, brochures and pamphlets, encouraging men to be proactive about prostate cancer, talk to their GP about the disease, check for symptoms and get tested.
The move has caused international controversy and Kiwi clinicians who oppose PSA screening recently slammed the policy in the respected British Medical Journal.
Critics claim the pamphlets did not properly convey the risks and benefits of PSA testing and that it's a roll of the dice whether this campaign will needlessly mutilate men or save hundreds of lives.
They question whether the Government has the right to take a gamble with men's health.
Should publicly funded health services encourage men to go hunting for trouble when research shows most men die with prostate cancer - not from it - regardless of whether or not they seek treatment?
It's more than just a theoretical argument for the 600 Kiwi men who suffer miserable and undignified deaths each year from prostate cancer.
But, at the same time hundreds of thousands of Kiwi men are unaware they are living with an indolent form of the disease, that will never hurt them.
If they were diagnosed with cancer, would they have the strength to turn down treatment and cross their fingers it didn't spread?
Or would they be wary, go under the knife and risk being needlessly impotent and chronically incontinent for the rest of their lives.
CONTRADICTORY RESEARCH RESULTS
Cancer is "probably the most feared word in any language", Ablin says.
Everyone knows it is best to find the disease early, treat it and get rid of it, but the normal theories can be dangerous when it comes to prostate cancer, he says.
The results of seven international studies on PSA screening are often interpreted depending on which camp you are in.
Supporters of PSA screening trumpet a European study that found a 20 per cent reduction in death rates after nine years.
Opponents highlight five of the studies concluded screening did not reduce death rates and that 1400 men would have to be tested over nine years to save just one life.
The PSA test is the most commonly used tool to detect prostate cancer.
Ablin's discovery of PSA in 1970 led to the test, but he believes it has been misused as a diagnostic tool when it really should be used only to check the progress of cancer post- treatment.
His book The Great Prostate Hoax: How big medicine hijacked the PSA test and caused a public health disaster will be published in March and it tackles why he considers current use of the test to be a profit-driven American disaster.
"The problems with the test have resulted in the over-diagnosis and over-treatment of millions of men and them being mutilated from a standpoint of incontinence and impotence," he says, over the phone from his office in Arizona.
SEEKING TREATMENT LIKE 'ROLLING THE DICE'
Using the PSA test to diagnose cancer is "garbage" and Ablin outlines why:
As men age their prostate gland gets bigger. Prostate cancer is age-related and research shows 70 per cent of men aged in their 60s have the disease. This increases to 80 per cent of men in their 80s.
The PSA test is a blood test that measures levels of PSA in the prostate. PSA is not cancer specific and the disease cannot be diagnosed with certainty through the test, meaning 80 per cent of positives are a false alarm. The markers set to determine the likelihood of a man having the disease are accepted to be arbitrary.
An abnormally high PSA reading or levels rising over time will prompt a biopsy, which more often than not leads to the discovery of a cancerous tumour. The tumour gives no certainty as to whether or not the man will ever be harmed by the disease because prostate cancer has two faces and it's impossible to tell them apart. One is a killer and the other is harmless.
Men don't feel comfortable walking around with prostate cancer and tend to seek invasive treatments once diagnosed. They choose between surgery to remove their prostate gland or radiation therapy. Of the men who undergo a prostatectomy, 50 per cent end up impotent or with urinary or fecal incontinence.
The chance of being harmed through treatment is the flip of a coin; while the overall risk of dying from prostate cancer is only 3 per cent, Ablin says.
"I have been banging my head against the wall about this for 30 years. The decision of whether or not to seek treatment for prostate cancer is like crap-shooting or rolling the dice. The man has to determine the quality of life he wants to have in his remaining years," he says.
MINISTRY INFORMATION CRITICISED BY MEDICS
Last week, this debate was highlighted by The Press with two opposing groups arguing about the benefits and risks of PSA testing in response to the ministry public awareness programme.
One GP said he dumped the brochures in the trash and University of Otago cancer epidemiologist Brian Cox labelled them as the "poorest information packs sent out by the ministry in a very long time".
A doctor's ethical obligation is to first do no harm and Cox believes the ministry is forcing GPs to break this medical principle by encouraging PSA testing.
Greymouth GP Dr Paul Corwin is calling for doctors to boycott the entire programme.
He wrote to Health Minister Tony Ryall urging him to withdraw the information.
"This is the worst brochure on PSA testing I have seen anywhere in the world," he says.
When it comes to prostate cancer policy, it is unlikely the ministry will ever escape criticism.
It will either do too much and be blamed for the overdiagnosis and overtreatment of men, or it will not do enough and be attacked for overlooking the hundreds of men who die each year.
Two years ago, the Parliamentary Health Select Committee unequivocally ruled against a national prostate cancer screening programme in New Zealand because there was no evidence the benefits would outweigh the potential harms.
The committee found Kiwi patients were getting mixed messages about prostate cancer and it recommended the ministry establish a Quality Improvement Programme to ensure men received "evidence-based information" about PSA testing and treatment.
In May 2013, a Prostate Cancer Taskforce was established to develop the key recommendations for the programme.
The taskforce, which was made up of clinicians and advocates, found prostate cancer was one of the most important problems facing New Zealand men.
It discovered considerable inequities in the death rates between Maori and non-Maori, with Maori being 59 per cent more likely to die from the disease, and that men with a family history of prostate cancer are up to four times more at-risk.
The group warned the early detection of prostate cancer could lead to "clinically indolent" tumours being overdiagnosed and said the PSA controversy had left Kiwi men confused and anxious about the disease.
"As a matter of urgency", it recommended the ministry provide the public with simple information on prostate cancer, hence the brochures and booklets.
The material was written by a group of everyday New Zealanders to ensure it would be understood by ordinary Kiwis.
The content was not signed off by the clinicians before distribution in November and it has divided the taskforce.
University of Otago professor of urology John Nacey, who was the taskforce chairman, says the pamphlets were designed to provide men and their families with an easy talking point around prostate cancer.
"What the pamphlet is saying is if you are worried about prostate cancer or have a family history of it, you need to go to your doctor and have a conversation about the problem.
"For those who want to get checked and have some anxiety about it, at least they now know what to do," he says.
However, Blenheim GP Dr Jim Vause, who was also a member of the taskforce, says the brochures are "a failing".
Vause acknowledges the serious difficulty in trying to find a common medical view on PSA testing, but believes "major lobbying" was going on behind the scenes by people with "big opinions" in regard to the release of the pamphlets.
"From my perspective as a member of the taskforce that is most disappointing."
Ablin, who claims to be the world's most vocal opponent of the test, believes the ministry was acting with the best interests of the New Zealand public at heart, but says the campaign is like "waving a red flag in front of a bull".
The content of the pamphlets "superficially glosses over" the risks of testing and could lead to a public health disaster, he says.
Every year in the United States, 30,000 men die from prostate cancer, but at the same time 240,000 men will be diagnosed with it.
"People need to understand that there are more people living with prostate cancer then there are dying with it," he says.
EARLY DETECTION 'WOULD HAVE BEATEN IT BEFORE IT SPREAD'
Nelson father Ian Chapman is personally aware of the cruelty of prostate cancer.
He reluctantly underwent a PSA test in 2001 after being forced to by his wife.
At the time, he was a healthy and fit 53-year-old with no symptoms.
Twelve hours after the blood test he was told he had cancer and Chapman chose to have surgery to remove his prostate.
A few months later he found out the disease had spread.
The 69-year-old has been on hormone treatment for the past 8 1/2 years which leaves him tired, "bitchy" and prone to hot flushes every now and again.
For three months after his surgery, Chapman lost his libido and struggled with incontinence issues, but he has suffered barely any long term side-effects other than the odd alcohol-related mishap.
"If I'd got into gear and did something earlier then I would have avoided what I am going through now. I would have beaten it before it spread," he says.
Chapman, who is the vice president of the Prostate Cancer Foundation, is calling for all Kiwi men to undergo a PSA test when they hit 50.
Prostate cancer is known to run in the family, and Chapman is encouraging his own son to get tested at 40 - just in case.
"I have seen three very good friends who have slowly died over 18 months [from prostate cancer]. If you saw the poor devils who are at the more advanced stage, you'd be devastated. They just slowly fade away, their bodies give up and they go through hell," he says.
Chapman acknowledges the PSA test is far from perfect, but says "it's the best we have got and until something new comes along, we are going to have to live with it".
"Most men end up with prostate cancer which is indolent, but there is always the exception. You can look at the percentages and the data but there are real people out there who are affected and something should be done to ensure those people are picked up in the system early. It is vital," he says.
"If you've got something in there, get rid of it. If you wait until you've got the symptoms it is too damn late."
DECISION TO HAVE THE TEST LEFT TO PATIENTS
It is clear the health sector is torn over the benefits and risks of PSA testing, but what are men to do?
The ministry brochures say it is important for men to talk to their doctors if they have any of the following symptoms: peeing more often, having trouble getting started or stopping, poor flow or dribbling and often getting up at night to pee.
As much as The Press would like to wrap this argument up with a concise conclusion, it appears even the advice men get from their own doctors will depend on which camp they are in.
GP Dr Tim Wilson says the only way to offer patients a cure, along with normal bladder control and erectile function is through early detection of prostate cancer.
"If you wait until people are symptomatic, you are lucky if you can offer them even one of those things, let alone all three," he says.
Wilson encourages men to get a PSA test and says he has never had a patient regret it.
Whereas, Dr Corwin from Greymouth has seen many patients who have undergone a test against his advice and regretted it.
One of his patients had a radical prostatectomy and was left impotent and wearing nappies which "brought him a great deal of misery". And, despite surgery, he is still dying of prostate cancer.
If a patient asks Corwin for a PSA test, he tells them it is not as simple as a woman getting a cervical smear or a mammogram and he hands over research clearly outlining the pros and cons.
The majority of the men never return for the test, he says.
"I have read everything I possibly can on it and there is no way I would have the test."
Both doctors accept that despite their best personal advice, the decision to have the test or not comes down to the individual man.
It will all come down to whether you are a Bill or a John.
BY THE NUMBERS
- 600 Kiwi men die from prostate cacner each year
- 3000 Kiwi men are also diagnosed with the disease every year
- the overall risk from dying of prostate cancer is 3 per cent
- 1400 men need to be tested over nine years to save one life
- those who choose surgery or radiation treatment have a 50 pere cent chance of becoming impotent or incontinent