Last week’s publication of my book Let Sleeping Dogs Lie? What men should know before getting tested for prostate cancer (free download here) has provoked a stream of testimonials from men who had their prostate cancer found via a PSA test, had it treated (mostly by prostatectomy to surgically remove the prostate, or by various forms of radiotherapy), and now live to tell the tale. The tale is basically “Thanks to the test, we found the cancer early. Obviously I’m still alive. Ergo, the test and the early detection saved my life. Every man should be tested annually.”
Prostate cancer survivor Treasurer Wayne Swan is perhaps the most prominent Australian man who strongly advocates for the test, in 2003 telling the then head of Cancer Council Australia, the PSA test refusnik Professor Alan Coates, that his public position would “condemn many young men in this country to death”.
But just as interviewing lottery winners is not a sensible way of making informed judgements about the odds of winning, so is it unwise to use the “I’m alive” testimony of post-treatment survivors as a guide to the value of the test.
The simplest way of explaining the odds of having a PSA test save your life is to look at the results obtained from a long-running, Europe-wide, randomised controlled trial of PSA screening. It found that for every 1000 men aged 55-69 who were allocated to the screening arm of the trial and were then followed for 10 years, 93 had prostate cancer diagnosed and treated and three died from the disease over the following 10 years. In 1000 unscreened men allocated to the “control” arm of the trial, 55 (who would have mostly been tested following noticing symptoms) were found to have the disease and four died over the same period. So, PSA screening finds cancer, and yes it prevents deaths from prostate cancer, but to a soberingly small degree.
A more recent Swedish trial reported better outcomes, but commentators in the Lancet and from the US National Cancer Institute have suggested there are few lessons in the Swedish results for nations such as the US and Australia where de facto PSA screening has been occurring since the late 1980s.
Most of those who remain alive after treatment are convinced that they would be otherwise dead. Some would be, but the widespread occurrence of “indolent”, non-life threatening cancer shows that there is much over-treatment. In our book from page 34, we show complete Australian data on age standardised prostate cancer deaths and incidence rates (the rate of prostate cancer per 100,000 men). In the 39 years 1968-2007, the age standardised death rate from prostate cancer has varied very little, with an average of 35.8/100,000 men and a range of 32.2 to 43.7. The most recent rate in 2007 (31/100,000) was very similar to the death rate at the beginning of this 38 year series in 1968 (35.6/100,000). In between there was a rise in the death rate (in the early to mid 1990s), which has now reversed back to rates seen in the early 1970s, a decade before the PSA test became available.
However, when you look at the data on prostate cancer incidence, the same basically flat trend we see for deaths is not apparent. Instead there is a dramatic leap in the incidence of the disease from the early 1990s. This change has been largely sustained ever since, resulting in a startling difference in the risk of men being diagnosed with prostate cancer before the 1990s (approximately one in 22 men in their lifetime) to nearly three times that today (one in 8).
The massive rise in finding prostate cancer has not been matched by any remotely comparable fall in the rate of prostate cancer deaths. Lots of cancer is being found that would not have killed the men with it. And lots of that cancer is being unnecessarily tested. The big problem is that current diagnostic tools are poor at differentiating the nasty, fatal cancers from those that are indolent.
When you are diagnosed with prostate cancer, you are henceforth “on the bus” of treatment. Many will have radical surgery or radiotherapy and we know from statewide data in NSW that long-term impotency rates average 77% and incontinence rates 12% in treated men. Quality of life is dramatically altered in most men. To this, the president of the Urological Society Dr David Malouf says: “There is no evidence that we are over-diagnosing or over-treating prostate cancer.”
Many men who have survived prostate cancer have enduring s-xual and incontinence problems. Here’s what one (John) wrote to a discussion board this week: “I was screened 12 years ago and 32PSA … I had no symptoms … the discovery of my high PSA resulted in me losing my female partner. Decided to scale down house so sold my impressive four-bed for a two-bed flat. My turning down a high-profiled job offer managing a shopping mall. God only knows how much stress. Radiotherapy that virtually nuked my s-x life, etc etc. Here I am 12 years later, still no symptoms. New female partner decides to leave (now a pattern with prostate cancer). Total wipe out of s-x ability. Almost made incontinent, but thankfully now sorted. Intense stress levels. Employer now alerted to my vulnerability, etc, etc. so career prejudiced etc. So from my point of view whilst I value of course all the treatment and care I have received, I have never had any symptoms and wonder where I would be now if I had not taken this PCa medical course. I’d certainly be in a happy relationship, have a better job, look younger and be far less cynical.”
Less than 3% of prostate cancer deaths are in men aged less than 60 and more than half occur in men aged over 80, which exceeds average life expectancy today. No international expert group outside of urology has ever promoted mass testing.
*Professor Simon Chapman, School of Public Health, University of Sydney
This is an important issue on several fronts mainly as Simon says from the perspective of over treatment and by implication under diagnosis of (and more generally under concern for) anxiety. I am fascinated by how seldom in the discussion of this issue the word anxiety appears. Generally and not just in such testing I sense that anxiety is not an adverse outcome that many docs think about when advising patients. That needs to change.
How much does fee-for-service medicine lead to over treatment? Time that question was answered. And in the wake of the publication of the results obtained from the long-running, Europe-wide, randomised controlled trial of PSA screening to which Simon refers, was there a dip in PSA testing? IF EBM is alive and if it is well, there should have been. Can someone check please?
The two urologists with whom I had dealings on this issue (before I gave up and got off Simon’s bus – actually one is on the bus even as in my case without having been diagnosed with prostate cancer) did not know the relevant statistics, one saying he did not deal in statistics (I did not know whether to laugh or cry at that!) the other phoning (in my presence) a colleague asking if he could see me and give me the stats as – and I quote – “the patient is a scientist like you and me and wants the stats”. (Thank God the urologist thought economics is a science.)
This is an important book Simon and I hope it is widely read (and even by urologists) but it won’t endear you to the urologists some of whom may want to sue you for loss of income. But there will be lots of blokes – and their partners – who will be grateful.
I was forwarded an article which referenced Simon’s book about a week ago and I am glad to see he’s made it to Crikey (and thanks for the free download). I am someone who at the age of 47 was told by my GP to have a PSA test, this test revealed an elevated reading and a DRE gave my GP some concern as he noticed there was a small lesion or similar on one corner of my prostate. I went to a urologist (after doing all the requisite scans, MRI and further PSA testing) to have this esteemed gentleman do nothing more than give me another DRE, didn’t look at the scans and all the other pretty pictures I’d accrued and his only diagnosis – biopsy. Now, I’ve had men , much much older than me, say avoid the biopsy at all costs and that advice to me seems sound.
Furthermore my GP was (in his words) a bit “Switzerland” when it came to the PSA test and the outcome. Since that original test (nearly 12 months ago) I’ve had 4 others, each producing a different PSA reading, but none showing a consistent increase or other outcome which could clearly state that I had prostate cancer. In fact it shows that there “may” be “something” there but, what – no idea. Again, biopsy is spoken and I flatly refuse to agree.
Reading the findings from Simon’s book, I am now even more convinced that my decision to stay away from biopsies and the like is the correct one. I do lead an active life, I exercise at a level that someone half my age would find challenging, I eat well, I take complementary medicines and supplements. In short I do everything that should guard me from having this cancer or if I do, aggravating it and causing problems. I have absolutely none of the symptoms associated with prostate cancer and the level of anxiety and stress I have had to endure is something that Gavin points out in his first paragraph. Indeed, it has to change, but when wealthy medical specialists are involved, the fight is much harder. (To be fair to my GP, he did say it was likely that I will die of something else before prostate cancer! And that is exactly what Simon outlines in his book.)