We will all die one day. Death itself cannot be prevented, though the time at which we die may be postponed through effective prevention and treatment. But many people invest huge emotional energy in the idea that their eventual cause of death might somehow be avoided. The very Australian idea of the “good innings” often gets lost in all this. If you ask people to imagine their preferred form of death, many talk about something “quick” where there would be no time to anticipate what lay ahead and no pain. However, most would talk about peacefully dying in their sleep, at a late stage in life, after a life largely free of disease and disability, allowing them to enjoy their later years with good mobility, free of pain, having seen their family and grandchildren grow up, and leaving their affairs in order. Such a death would probably mean dying suddenly from a heart attack or cerebrovascular disease (stroke).
Few people would ever nominate cancer as their preferred cause of death. Cancer and its recurrence [1] has become more feared than almost any other disease. Literature and cinema [2] are full of fearful references to cancer as a wasting, painful and ugly disease that slowly erodes the body, spreading inexorably and depressing everyone around the person suffering the disease. The word “cancer” has become a metaphor for something loathed, rotten and uncontrollable. We speak of cancer “invading” the body. We speak of a prevalent negative attitude or development as a “cancer” in the community. Crumbling buildings are said to have concrete cancer. 6
In 1971 US President Richard Nixon famously declared “war” on cancer [3], and the language of both cancer control and cancer patienthood is full of battle, heroic and stoic metaphors about struggles, fighting and defeating the disease [4, 5]. Cancer seems to attract such language more than any other disease and this has an impact on both the anticipated and lived experience of cancer.
Being told that you have cancer can be devastating: dreaded news that can preoccupy those diagnosed, seriously eroding quality of life, and causing depression [6]. Many cancer control agencies now refer to the experience of living with cancer as “the cancer journey”. This journey always starts with the patient being told that they have cancer. Once that news has been received, it stays with you for the rest of your life. Being told that you have cancer is not trivial information. It holds potential to start a sometimes rapidly unfolding train of events that may fundamentally alter the course and quality of your life. The main goal is often to fight and defeat the cancer that has suddenly been announced as a very unwelcome intruder in your body. The cancer will typically be surgically attacked and/or bombarded with radiation and highly toxic chemotherapies, all in the cause of the self-evidently important goal of stopping it from killing you.
Against this, the idea that many men might have discoverable cancer in their bodies and yet may decide to not take steps to discover it is almost heretical to everything we have come to know about health, medicine and fighting disease. But this is a decision that many highly informed men are taking today about prostate cancer. Far from being simply dismissed as scared or ignorant screening “refusniks” – men who just need more support or persuasion to get tested – many men have taken what is for them a rational, evidence-based decision to choose to remain ignorant of whether they might already harbour prostate cancer in their bodies. 7
In taking this decision, these men are not eccentric mavericks but are in fact reflecting the overwhelming body of expert global consensus about whether it is a sensible thing to have all middle-aged and older men – apparently free of the disease (that is, with no symptoms) – routinely tested for prostate cancer. There are now a large number of expert cancer and other public health agencies which have assessed the net risks and benefits of screening large numbers of asymptomatic men for prostate cancer to see whether population-wide activity driven by such a policy would actually save lives.
Many governments have formally adopted policies of cancer screening in particular age groups for different diseases. In Australia, the Commonwealth government has formally adopted a policy of targeting screening for breast cancer in women aged 50–69 and colorectal cancer in people aged over 50. It has long advocated that sexually active women be screened for cervical cancer by having Pap smears.
While some prominent Australian urologists are very active in talking up the importance of prostate cancer screening, few Australians would be aware that no government anywhere in the world has a formal policy supporting prostate cancer screening. Nor would they be aware that aside from some professional urological societies, no reputable cancer control or expert prevention agency anywhere in the world currently recommends screening for the disease. Here are just a few illustrative examples:
The American Cancer Society recommends that men make an informed decision with their doctor about whether to be tested for prostate cancer. Research has not yet proven that the potential benefits of testing outweigh the harms of testing and treatment. The American Cancer Society believes that men should not be tested without learning about what we know and don’t know about the risks and possible benefits of testing and treatment. [10]
PSA testing is of unknown value as a population screening test. Although there is good evidence that it increases the detection rate of early stage, clinically significant prostate cancers, there is little evidence to date that such early detection leads to reduced mortality; the “gold standard” for evaluating screening tests. [11]
The USPSTF concludes that the current evidence is insufficient to assess the balance of benefits and harms of prostate cancer screening in men younger than age 75 years. 9The USPSTF recommends against screening for prostate cancer in men age 75 years or older. [13]
PCFA recommends that men at 50 with no family history of prostate cancer, and men at 40 with a family history, should seek voluntary annual assessments in the form of a Prostate Specific Antigen (PSA) blood test together with a Digital Rectal Examination (DRE). [14]
Despite this international expert consensus, de facto screening of populations is well under way, being driven by well-meaning advice about the importance of having men becoming more informed about their health. “Women have their cancer tests, men have theirs” runs the simplistic argument at its most basic level.
A 2003 review of the issue in the Lancet concluded that if one million men over 50 were screened,
about 110,000 with raised PSAs will face anxiety of possible cancer, about 90,000 will undergo biopsy, and 20,000 will be diagnosed with cancer. If 10,000 of these men underwent surgery, about 10 would die of the operation, 300 will develop severe urinary incontinence and even in the best hands 4000 will become impotent.
And then came the crunch:
The number of men whose prostate cancer would have impinged on their lives is unknown. [15]
This neat summary encapsulates why this issue is so important. Men are being increasingly urged by some to subject themselves to a 10medical procedure that may dramatically reduce their quality of life by causing impotence and incontinence. But the evidence that this procedure will in fact save men’s lives is by no means well established, while the risks are known and very real.
By 2003 (the latest date from which published estimates are available), around 50% of Australian men aged 40 and over were estimated to have been tested for prostate cancer [16]. With high profile promotion of screening through campaigns like Movember, and men being urged to take the test by campaigns organised by the Prostate Cancer Foundation of Australia, this proportion would be considerably higher today in 2010. But many men consciously choose not to be tested.
This book tries to explain why many men make that decision. It seeks to bring their reasons out into the open, and repudiates the facile idea that men who elect not to be tested are nothing more than unmanly “pussies” who are squeamish about having a doctor put a finger up their rectum to feel for prostate enlargement or who are just indifferent to protecting their health. This sort of trivialising focus has been a prominent part of campaigns in Australia with slogans like “Be a man!” designed to get men to be screened. Comic actor Magda Szubanski, whose father died of the disease, told the national 60 Minutes TV audience in 2007: “Don’t be a pussy. Go and get the check” [17].
Our aim in this book is to provide a detailed examination of the main questions that a man should be asking before deciding to get tested. Deciding to have a PSA test can quickly lead to a course of events that for some men may save their life. But as we will show, for many more a test will result in serious, unnecessary surgery and other interventions. In a large proportion of cases, this will cause enduring and often permanent, major after-effects in the form of sexual impotence, urinary incontinence and less commonly, faecal 11incontinence. The surgery will have been unnecessary because – strange as this idea may seem – the cancer would have never caused problems in many of these men’s lives. This is an absolutely central point that is at the heart of this book.
The other core point we will make is that medical science is today unable to predict with any precision which early discovered prostate cancers will turn out to be those that kill, and particularly which will kill men in middle age. Many people have deep faith in medical science. They believe that diagnostic tests undertaken by doctors and pathologists can provide highly reliable information that can predict with great precision the likely progress of a disease like cancer. Often, this is true and often people have experienced this when a diagnostic test has led to an effective form of therapy that has cured a disease in them or other family members. So when a much-promoted test turns out to have major shortcomings in its ability to accurately point to a cancer that urgently needs attention, it is understandable that many would find this news hard to believe. But as we will see (p58), the frontline diagnostic tool in efforts to screen for prostate cancer – the PSA test – is a tool which has very poor ability to find problematic cancers. It finds many benign cancers which could have been left alone.
Prostate cancer is the second most common cause of cancer death in Australian men (after lung cancer). Like deaths from nearly all forms of cancer – but even more so in the case of prostate cancer – the large majority of men who die from the disease die late in life (see p31) close to when they would have in all probability have died from another cause anyway. For many, the idea that one might decide to not take every possible step to catch this cancer early is nothing less than bizarre. But in the zeal to wage war on cancer, we now know there are many avoidable casualties: people who get caught up in whirlwind of unnecessary medical intervention from which it is difficult to withdraw. 12
In Australia today, there are many thousands of men who have had their prostates removed and who, as a result, are permanently sexually impotent (meaning that they are unable to attain an erection sufficient for intercourse). Some of these men, and others who are not impotent, also have ongoing incontinence problems. These are not problems that you wear on your sleeve, or announce to the world. They are typically endured privately and rationalised by the very powerful idea that these problems were small prices to have to pay to remain alive. A small minority of these men may be right in thinking this: but for having found their cancer early, and having their prostate removed, they might well be dead. But as we will see, there is a great number of individuals who have been treated unnecessarily for the disease. It would not have killed them and they now live with the consequences of having that unnecessary treatment.
Some men who have had their prostates surgically removed become determined and committed advocates for prostate cancer screening. Many see them as powerfully convincing, living proof-of-thepudding that early detection saves lives. After all, they have lived to tell the tale. But as we shall explore, for every such man whose life was saved as a result of early detection, there can be up to 47 more [18] who in all probability would not have died as a result of the cancer that was found. For many of these men, their sexual impotence, their incontinence and their enduring anxiety that the cancer may have spread in undetectable ways and may return in other parts of their body are legacies that could have been avoided.
Australia has seen febrile, often acrimonious debate on prostate cancer screening. In February 2003, an interview with Professor Alan Coates, then chief executive of the Cancer Council Australia and aged 59, was published in the Australian Financial Review. He stated that he had personally chosen to not have a PSA test, arguing 13
[t]he test may find things that didn’t need to be found or it may find things when it is too late to fix them. The supposition is that there is a group in between where it finds something early enough to make a real difference, but there is no proof that such a window of opportunity exists. [19]
The article generated widespread, overwhelmingly negative responses from several Australian urologists and cancer survivors, including two federal politicians who were incendiary in their criticism, particularly from within the safety of parliamentary privilege [20]. An editorial called Coates “the apostate professor” whose actions will have “confused thousands of men” [21]. Coates protested that to be an apostate, one must have once believed [22].
This very public row would have been noticed by millions of Australians used to encountering cancer control officials (including Coates) enthusiastically promoting population screening for cervical, breast and colorectal cancer, and stressing the importance of early detection. Yet here was one of the nation’s most senior cancer experts saying that he personally had taken the decision to not be tested. Why, many would have asked, should the case for the early detection of prostate cancer be any different than for other cancers?
The message about the importance of early detection for saving lives has been driven home over many years through public awareness campaigns for many diseases. The idea has taken on something of the status of a commonsense law, admitting no challenge. Unsurprisingly, a recent study found that over two-thirds of Victorian adults believed their chances of surviving prostate cancer would be very much improved by early detection [23]. US survey evidence shows 87% of adults believe that routine cancer screening is almost always a good idea and that finding cancer early can save lives (74% said most or all of the time). Moreover, 77% of men said that they 14would try to keep having a PSA test even if a doctor recommended that they stopped having or had less frequent testing [24].
There are also studies that show that when men are better informed about prostate cancer their interest in screening goes down. For example, an Australian study considered men who were visiting their GP who were sent balanced information about the pros and cons of PSA screening. Before receiving the information, about 50% of men were definitely interested in being screened, but afterwards, only 24% reported being definitely interested [25]. In an earlier US study, men scheduled for a routine visit to their doctor were randomly divided into some who were shown a video about the pros and cons of PSA screening and others who did not watch the video. Men who saw the video were less likely to want the test afterwards, (30% in the video group, compared to 67% in the control group), and fewer went ahead with the test at the next opportunity (12% in the video group compared to 23% in the control group) [26]. There are two other studies like these, with similar findings [27, 28] and one [29] which found information about the pros and cons of screening made no difference to the percentage of men who chose to be screened.
A senior cancer control figure like Alan Coates publicly declaring that he personally would not be tested would thus have appeared to many as heretical and counterintuitive. But Coates was no Robinson Crusoe: he was not alone in his decision. Just as many men elect to be tested for prostate cancer, an equally if not larger number of well-informed men are today electing not to be tested on the basis of the currently available scientific evidence. Many make similar decisions to not undertake genetic screening for a range of diseases which may provide unwelcome information of doubtful use.
We have written this book to provide the hundreds of thousands of Australian men facing the decision about whether to get tested for prostate cancer with important information that many of them 15would not have encountered before. Public discussion about prostate cancer screening in Australia today is overwhelmingly dominated by pro-screening voices, many of whom have obvious vested interests in promoting widespread testing and medical intervention (see p112). As we will show, while it is almost standard for all parties to this debate to emphasise the vital importance of men being informed about the pros and cons of prostate cancer screening, attention to the “cons” has been woefully neglected or avoided by many actively promoting screening.
Prostate screening advocates often include men diagnosed and treated for prostate cancer, urologists and some non-government advocacy groups, including those supported by the manufacturers of prostate cancer diagnostic tests and treatments. These advocates have sometimes been aggressive in attacking those who have expressed reservations about the wisdom of screening [30]. In 2001, the editors of the US-based Western Journal of Medicine were subjected to particularly vicious lobbying and character assassination following cautious remarks they made in The San Francisco Chronicle newspaper about prostate cancer screening. Efforts were made to have them dismissed from their roles, and they were said to be promoting “geriatricide”: the killing of aged men [31].
In 2003, when one of us (SC) wrote to a Federal Member of Parliament, Jim Lloyd, questioning a letter he had written to The Sydney Morning Herald claiming that “there was now less than a 4 per cent chance of incontinence” following treatment for prostate cancer, Mr Lloyd replied that “many academics place far too much reliance on statistics and forget the human aspects. Whilst you continue to study your surveys, figures and databases I will continue to deal with real issues.” He included (with permission) a letter from Dr Phillip Katelaris (who said Lloyd was welcome to forward his letter to the press). Katelaris described SC as “a man quite divorced from the anguish of prostate cancer, a non-feeling egocentric ‘past president of the 16Australian Consumers’ Association’.” This will give readers a flavour of both the sometimes very personal nature of the debate and the disdain that some have for evidence across large numbers of men, seemingly preferring to base health policy on the apparent benefits that have occurred for individual men who are personally convinced that prostate screening saves lives.
High profile campaigns like Movember reflect none of this debate. Movember’s website states
We want everyone to know that men over the age of 50, and those over 40 with a family history, are at risk of prostate cancer and encourage them to be tested annually because it is highly curable if detected and treated early. [32]
We often hear urologists and prostate cancer advocacy groups via campaigns like Movember urging that men should be screened. Far less often, we hear others urging that men should not rush into it and think very carefully about both the benefits and risks. All agree that it is a decision that should be talked over with one’s doctor. But with waiting room queues putting pressure on a doctor’s time, such conversations about such major decisions can often be rather short and leave a lot of questions unexplored.
In this book we will examine what is actually meant by being “at risk” for prostate cancer and also the evidence driving the proposal that men should be tested every year for the disease. We will look in detail at the results of a nine-year multi-nation European trial published in 2009 [18] and a 14-year Swedish trial published in 2010 [33, 34] which sought to answer the question of whether men who are screened for prostate cancer have a lower death rate from the disease than men who do not get screened. We will look at very recent evidence from Australia about what men undergoing treatment for prostate cancer can expect in terms of continuing sexual function 17and continence. Finally, we will look at claims made by some surgeons about the alleged greatly reduced risks of impotence and incontinence when “robotic” surgical techniques are used in laparoscopic (“keyhole”) surgery for prostate cancer. As we will see, men should treat these claims with a good deal of circumspection.
Finally, we feel it is important to say something about claims that are often made about “percentage change” in outcomes like death or adverse side effects. There are two ways that change can be expressed in ordinary language: relative change and absolute change. Consider the case of smoking. Imagine if in the first year of a study 25% of adults smoked, and 10 years later, when the same group were again questioned, 18% now smoked. The absolute difference between 25 and 18 is 7% or a fall of 1.43% per year. But the relative difference is 28% or 2.8% a year (a reduction of 7% off a baseline of 25% is 28% less). Twenty-eight per cent sounds more impressive and is likely to be the figure that anyone would select who wanted to “talk up” the improvement. Those wanting to talk down the progress to reduce smoking – for example, to argue for stronger legislation and campaign funding – would probably emphasise the absolute, smaller figure in an effort to promote concern that not enough was being done.
Those selecting absolute or relative measures are often not explicit in what they say, particularly when a complex study is reported in the news media in just a few sentences. We have often noticed this in public discussions about prostate cancer. Sydney man-abouttown, lawyer and newspaper columnist Charles Waterstreet wrote in his Sunday newspaper column in November 2009 that “Extensive PSA screening in other countries has meant a 40 per cent fall in the mortality rate” [35]. Newspaper writers rarely cite their sources, and Waterstreet was no exception here. But if he was referring to the 2009 New England Journal of Medicine European trial [18], the claim for “40% fall in mortality” is quite misleading. The fall was 20% in 18relative terms derived from data obtained over nine years of followup that showed there were 2.94 deaths per 1000 men in the group of screened men compared with 3.65 deaths per 1000 men in nine years (see p98).
A recent US survey [36] of medical decisions specifically looked at the decision US men made with their doctors about PSA screening. The survey included 375 men who had been tested in the previous two years (85%) and men who had discussed having the test but had not actually gone ahead with the test (15%). Of these men, 70% reported their doctor had discussed the test with them before a decision about testing was made; 94% said the doctor had discussed the “pros” of having the PSA test, only 32% reported the doctor had discussed the “cons” of the test. Sixty per cent reported they shared the decision with their doctor, 32% said they had made the decision and 8% said the doctor had made the final decision.
The final decision will always be yours. We hope the information we have set out in the book will make that decision a much better informed one than it might otherwise have been.
We thank Prof. Alan Coates for his many detailed comments on early drafts of the book; Jessica Orchard for her proofreading; and Erin Mathieu for producing the diagrams on pages 101–02.