There’s been a fair bit of discussion going on throughout the media about the value of the value of a widely-used screening test for prostate cancer, the prostate-specific antigen, or PSA test. The original inventor of the test, Richard Albin, has written an op-ed piece in the New York Times arguing that the test’s popular use for screening has led to a hugely expensive public health disaster.. Albin points to two recent studies, an American study which shows that PSA screening does not reduce death rates, and a European study which shows a marginal decrease in death rates but that 48 men were treated (and thus suffered serious side effects) for every life saved.
I happened to be listening to ABC local radio talkback. A representative from one of a prostate cancer patient’s group put the case quite strongly that Australian use of the PSA practice was significantly different to that in the United States, and the current recommendations were that men should “discuss PSA testing with their doctor”. As I understand it, different branches of the medical profession have different views on this – the Urological Society of Australia and New Zealand recommends routine PSA screening for men as young as 40, and presents the story of one 46-year-old who had a prostatectomy after PSA screening in support of the idea:
”It’s as much a change mentally as it is physically,” said the 46-year-old married engineer. ”The nerves were preserved but the sexual function is not straightforward. The libido is different and the orgasm process is different. I’d prefer to be back the way I was, but on the other hand good health is the main thing. Now it’s done I’m glad.
”From the point of view of being confident I’m going to see my grandkids, exceedingly glad.”
The scientific debate can play itself out; but those in favour of screening seem (in my admittedly non-random sampling) to use a lot of argument by anecdote in the popular press. Aside from the story above, the first talkback caller I heard on the ABC was a bloke who had a PSA test, had a cancer confirmed by biopsy, and subsequently had his prostate removed and doesn’t regret it. However, it was claimed (without any qualification) that this “saved his life”. As I understand the current state of the science, even if it were true in his particular case, as I understand the science it’s not at all clear which cancers will go on to metastasize, and the risk of a particular person’s cancer (without extra information like family history) being a killer is actually not that high. Even if it does end up killing, we all have to die of something; is dying of prostate cancer at 85 worse than dying of, say, Alzheimer’s at 90?
Albin’s op-ed is trenchant about those arguing for mass screening, citing the following reasons for its continued use:
…Because drug companies continue peddling the tests and advocacy groups push “prostate cancer awareness” by encouraging men to get screened. Shamefully, the American Urological Association still recommends screening, while the National Cancer Institute is vague on the issue, stating that the evidence is unclear.
Beyond the possibility of financial motivations for certain interested parties, I wonder whether self-justification and the need for validation plays at least some part in the attitudes of advocacy groups encouraging screening. If one has made the personal decision to sacrifice a “normal” sex life and even the ability to control one’s bladder for some time after an operation, you’d tend to concentrate on the risk you’ve mitigated by having the operation to retrospectively justify the decision to act.
I’m not for a minute arguing that men can’t come to a rational decision to have screening done, and then act on the results of that screening. But these two anecdotes seem to assert risks that aren’t representative of the current scientific understanding as reported elsewhere.
In any case, argument by anecdote is very poor justification for mass screening programs. While “evidence-based medicine” does have its limitations, it would be good if those advocating screening used rigorously collected evidence as well as affirming anecdotes to publicly make their case for the practice.
As some-one who has prostate cancer, I think the tests are worth it. Though I didn’t discover I had the cancer through a PSA test but for other reasons. Now I am on Zoladex (an injection with a needle the size of a nail every three months). Zoladex lowers my testosterone levels and, for a while at least, will prevent it spreading to my bones. It was in my shoulder blades but for the moment has gone. I have a PSA test every six months to ensure the cancer isn’t spreading again.
As for its use as a tool for diagnosing a cancer that is very very slow to spread for quite a while, I don’t really have any thoughts, except to say, after you’ve had a biopsy (which is the only way to really know)and you turn up at the urologists and he say’s “You’ve got cancer.” Its pretty chilling. I never felt so cold in my life before. But for the moment I’m all right,sort of in remission, and hope to remain that way for quite some time to come.
I also have prostate cancer: had a radical prostatectomy about ten years ago when I was 50 and a further 35 radiation treatments two years ago.
Treatment is not done solely as a result of the PSA: it’s just an indicator that further tests might be needed. In my case my three times the average PSA result led to discovery of a lump on my prostate. After that came a biopsy which further confirmed the PCa. I had the prostatectomy a few months later. Post operative pathology confirmed that the prostate had advanced cancer and that some cells had already escaped the capsule. My PSA kept climbing and resulted in the radiation. It’s now steady despite a very high testosterone reading, but the oncologist talks about hormone treatment in years to come.
Although the operation led to sexual dysfunction (no ejaculation, of course), I can say that orgasms are the greatest ever – absolutely mind-blowing.
I have no regrets and still hint to friends 45 and over that a PSA test and a digital exam of the prostate can’t hurt and just might save your life. It’s OK for doctors and others to say many men die with PCa rather from it in their very late years but if it’s there when you’re in your 40s and 50s it can very aggressive. And from support groups I belong to it is a very, very painful death as the PCa invades bones, brain etc etc.
As many men die OF PCa each year as do women of breast cancer. We need the same awareness in men of PCa as women have of BCa (the Pink campaign etc.) as far I’m concerned.
Very hot button topic Robert, and without adding fuel to the fire (hopefully), I think part of this debate is tied up very closely with both our notions of masculinity and what it entails, and perhaps also chauvinism at the public response and funding to breast cancer issues. I have often heard it bandied about that “more men are diagnosed with prostrate cancer than breast cancer” as if it’s some kind of competition, but very rarely heard it followed up with “but most of it is slow-growing, non-lethal, and inoperable.”
The debate on screening prostate cancer seems to be heavily dominated by people who don’t understand the purpose of screening, which is to identify a disease earlier if there is a proven clinical benefit to earlier diagnosis, and if there is a population-level benefit to doing so on a mass basis. Not all diseases can be better treated by being identified before they are symptomatic; and not all treatments are cost-effective enough to justify rolling them out across a population. Also, screening programs inevitably define some individuals as sick when they’re not, and doing this has consequences – for men diagnosed with prostate cancer, one of the consequences is a potentially quite traumatic biopsy, being conducted on men who in many instances may be frail and at high risk of adverse consequences from even minor surgery.
When I last read much about the prostate cancer screening issue (which was about 10 years ago), it was generally accepted in public health circles as a bad idea. Prostate cancer is generally slow-growing, the treatment doesn’t benefit from early detection very much, and a large number of men will die of something else before they die of prostate cancer. Also, the treatment itself can be very dangerous, and has significant side effects which can be similar to those of an enlarged prostate in any case. The recommendation then was to wait for symptoms and treat after symptomatic diagnosis. Studies have shown that men will give up an average of 5 years of life for continued sexual function and continence, but screening will subject a proportion of the population to an invasive surgical procedure with dubious benefits and significant side-effects to treat a disease that may never kill them.
I think this debate started 10-15 years ago and was at least partially driven by the nascent “mens’ health” movement, which did some good things but also used some pretty clear rhetoric about women getting all the benefits of breast screening. It was tied in with the mens’ rights movement in the early days. In America it’s also closely aligned with the urologist associations, and there’s a lot of money floating around in getting a screening method up and running. It’s wise to question their motives.
Two important concepts are sensitivity – the percentage of positives that are picked up by the test; and specificity – the percentage of negatives that are reported as negatives. The PSA test has a low specificity and picks up a lot of false positives. It does not distinguish between prostate cancer and conditions such as benign prostate hyperplasia.
As a tool for diagnosis of prostate cancer, it is probably quite useful. But I have serious doubts about using it for widespread screening, such as screening all men over 40. If the test could be combined with some other sort of non-invasive test to make it more accurate, then there could be a case for screening.
Developing more accurate non-invasive tests for cancer is an important area of medical research (and for those who are interested in statistics or machine learning – sometimes an interesting classification problem). For example, if detected early, ovarian cancer has a high survival rate; but it is usually detected too late – when the survival rate is low.
Good luck paul.
I’ve had elevated PSA levels for nearly ten years, I’m 45. I’ve sunk a few grand of my own and various health funds money trying to get a urologist to give me a diagnosis, the closest i have got was “We can put a man on the moon, but we can’t make him pee comfortably”, and a few guarded comments re bike seats.
Obviously there is no prostate cancer and as there is no history of it in my family i can afford to be somewhat sanguine about the PSA levels, even if the symptoms give me the irrits. But if all i knew about cancer was cancer = death, and high PSA levels = high risk of cancer, i might well be packing it right now and would have been for the last 9 years.
I don’t wish to minimise the pain that cancer and it’s related illnesses cause to individuals and family but cancer appears to me to have become a kind of national tragedy cum magazine sales pitch. so the waters are considerably muddied and discussion of it is couched in a degree of hyperbole that i find somewhat distracting.
While I’m at it, since this debate is sort of about prostate cancer, I’ll get into the masculinity debate. The drug that I’m on to stop the cancer from spreading lowers my testerone levels. Supposedly I’m gonna grow breasts – I’ve been on it about four years I think and I have very small man-boobs. Not noticeable, not an issue.
Secondly, the drug removes my sex drive. Virtually completely. I thought that was a really big deal. To use a Ruddism – you know what? Its gone. I don’t miss it. I’ve got much more time for lots of other things. I still enjoy the company of women. I just don’t want to get involved with them sexually, or for that matter, emotionally. Its no big deal. I’m glad its gone. In fact, since I’ve been on Zoladex, apart from the fact that one day the cancer is going to get worse and I’ll die pretty quickly when that happens (I think), its been one of the best times of my life.
sg is correct about the politics of this:
“I think this debate started 10-15 years ago and was at least partially driven by the nascent “mens’ health” movement, which did some good things but also used some pretty clear rhetoric about women getting all the benefits of breast screening.”
Prostate cancer became an emblematic strategy for men’s movement politics as it sought to find a focus for discontent about the “special treatment” that women were getting within the health system. It was a kind of cancer envy. I’ll not apologise for the bitterness of that comment because I find men’s movment politicss anti-feminist and reactionary.
For a terrific online read about the men’s health movement you couldn’t go past Boutique Health? Gender and Equity in Health Care by Toni Schofield (Usyd) especially chapter two on men’s health.
Paul Burns – cancer is always a tough word to hear. My sympathies to you and hope it all goes well. As for my own organ I’ve had a PSA and am overdue for another precautionary test by about 5 years I guess but I certainly intend to have it as part of a regime of self care. Far preferable to the proctologist’s finger of fun in many ways. If only they were a bit friendlier and less clinical it mightn’t be so bad but there you go.
I probably should keep out of this discussion, since it will never happen to me personally. However, I have some sense of the emotional impact and an interest in this topic, after better half had a prostate scare a couple of years back. The doctor sent him for a PSA test.
While waiting for the results, I did my usual thing and surfed the net for info, firstly on prostate cancer. The potential worst-case outcomes are as Paul @1 says, enough to make your blood run cold. I felt sick with worry for better half, and he didn’t look too happy with the info I printed out for him.
The next day I set out to comb the net for info on the PSA test. The theory was, as sg @ 3 says: How reliable is the test, and what will you do with the results?
Temporarily dragging myself away from the emotional aspects, I fell back on methodology from industrial risk analysis:
- What can the test tell you? Is it a definative result, Y/N?
- How reliable and predictive are the results in terms of outcomes?
- Will you DO anything with the results anyway, other than worry?
The results of that investigation did not improve my feelings much. The whole PSA test issue looked to be rather uncertain. Neither myself nor indeed better half liked being in the possible position of making drastic decisions on uncertain data.
The next investigative effort was to check what exactly we could or would do about the results, when we got them.
- What happens if you do nothing?
- How effective are the different methods of solving the problem? 100% cure? 50%? Or what?
- How does the cost/benefit stack up for the different options?
As others have said, it seems that in most cases you have a slow growing cancer and eventually die of something else – the cancer just needs monitoring. In a few cases it is much more serious, and you have to take serious action.
Luckily the result came back negative. An enormous relief! We have close friends who had a negative result and went the drastic operative route.
In risk management terms, if any test gives you uncertain results, and if “do nothing” has little negative impact compared with the other options, then you may as well not do the test.
To draw a long bow to a woman’s equivalent, the amniocentesis test is not worth doing, if you would go ahead with the pregnancy anyway even for a foetus with a severe abnormality. Especially if the test has other risks, you need to know what you are going to do with the results. The only possible reason, if you planned a “do nothing” response, would be “forewarned is forearmed”. If one could ever really prepare emotionally for such an outcome?
Returning to the PSA and risk management theory, if there is a risk of a very serious outcome, then the conclusion is that you have to spend the money to get better quality data for any major decision. As Paul @1 would understand well.
Any medical tests with high false positives, or indeed false negatives, are more liability than asset to the decision-making process.
That is, the PSA test needs to be supplemented or replaced with something MUCH more reliable. I think the same can be said for some female cancer tests? I hope there are adequate funds for medical research into improved testing procedures, given the level of prevalence in the community?
Why is this turning into the typical LP men vs. women debate?
I said above, “As many men die OF PCa each year as do women of breast cancer.” That’s a fact not “some kind of competition”, Patricksg.
“the PSA test needs to be supplemented or replaced with something MUCH more reliable”
The PSA test is a simple blood test which may indicate problems to be further investigated as is any blood test. The result does not specifically indicate cancer.
http://www.prostatecancersupport.co.uk/prostate.htm
I knew a bloke who was diagnosed with prostate cancer and was told by his doctor that more men die with it and of it.
He died of it.
“is dying of prostate cancer at 85 worse than dying of, say, Alzheimer’s at 90?”
Maybe not, but the question is whether deaths at 50 can be prevented by this test. A lot of people, the Federal Treasurer among them, would say yes.
And turning this debate into some sort of hatchet job into the men’s health movement is just absurd. Prostate cancer is the leading cancer in the western world.
Comments by Elise et al show on an individual level the consequences of running a screening program for this disease. All across the country, men will be declared sick and have to go through the worries and decisions described above, ultimately to little established medical benefit and in many cases only to discover after further invasive tests that they’re negative.
Sam and Grateful, the issue for me is not whether individual men should get a test, but whether the health system should set up a screening system for this disease. The question is not “is dying of prostate cancer at 85 worse than dying of, say, Alzheimer’s at 90?” It is actually
1. “will the balance of lives saved by early detection outweigh the damage done by declaring a lot of men sick?”
2. “will the treatment actually help if diagnosed early, or are we wasting money?”
3. “how many of these men would have died of something else before the cancer hit them?”
4. “could we spend the money better elsewhere?”
Also, the claim that “more men die of PCa than breast cancer” isn’t true, at least in the US – the age adjusted rates may be higher, but the men with PCa are older and at greater risk of death due to any cause, so this is hardly unexpected, nor does it say anything about which disease we should be spending money on screening for.
Without screening, five year survival for prostate cancer is nearly 100%, and 10 year survival 91%. Given the average chap who gets this is going to be in his 60s, it’s pretty likely that symptomatic diagnosis is perfectly acceptable at a population level as a way of controlling the disease, and very very unlikely that a screening program will ever be cost-effective unless the test itself is very very cheap.
Oh yes, forgot to add, better half had that horrible digital rectal test too. Ghastly business. Sounded as bad as pap smear tests.
“better half had that horrible digital rectal test”
Not sure why men feel so threatened (or whatever) by this test: it’s over so fast you wonder if it ever happened.
If men can’t handle that they’re in trouble if they ever need a prostate biopsy ’cause guess what opening the 10 or 12 biopsy needles are inserted through.
Thanks for that, GFPT @14. Nothing like the gruesome details…
I’ll let better half know that he got off lightly there!
exactly what sg said.
The issue gets muddied by the media and data/research/policy by anecdote.
The issue is whether PSA screening as a public/population health measure is worth while or cost/outcome effective. The answer is pretty clearly NO.
[I think that for some of us (say sg and me) - the term screening almost always means a widespread public health screening of ALL of a target group. It does not refer to an individual getting a test as screening]
This says bugger all about what the worth of the PSA test is to an individual and their doctor.
For many individuals (me being one of them) a regular-ish PSA is one recommended element of a good health regime depending on family history, individual health and symptoms and other factors such as age.
Paying attention to symptoms and a regular digital rectal examination are others.
I don’t understand the squeamishness about the digital exam especially as these days most doctors wear a rubber glove and don’t shake your hand or offer you a sandwich afterwards.
In addition:
The very act of screening will tend to crowd out another intervention or health treatment or screening.
fxh @17: “In addition: The very act of screening will tend to crowd out another intervention or health treatment or screening.”
To say nothing of the extra medical caseload, due to further invasive testing needed by a significant population of anxious people with false positive results suggesting they have cancer…
Re the prostate cancer biopsy: if you can feel it, that’s where you have the cancer in the prostate. If you can’t feel it, you ain’t got it there. At least that was my experience.
The worst thing about the biopsy for me was having to travel all the way to Tamworth to have it.
A male friend of mine has asked me to type the following for the benefit of readers to this web site:
Wayne Swan had prostate cancer, so he’d probably be a supporter of PSA tests. I certainly am, but I am aware they don’t pick it up in all cases but that is not unusual for many medical procedures.
I had a higher than normal reading, but a biopsy found no cancer. My father had prostate cancer, but he didn’t die from it, but from a stroke. I’m therefore need to have a PSA test every now and then. I’ve also had an enlarged prostate also but after surgery no cancer was found. It was a very painful operation, and the bleeding continued for about six weeks, and everything the surgeon said was correct.
Several friends of mine, one a former Liberal MP, have got prostate cancer and can be grateful that PSA tests picked it up. Prostate cancer is slow, but it needs to be treated unless the patient is elderly, in which case the likelihood is that the patient will die from something else, but each case is different and medical advice is essential.
Caroline, that’s all well and good, and I’m glad your friend is OK. But, again, anecdote does not make a compelling case for mass screening.
To some extent, your comment kind of reinforces the point I was making in my original blog post about the proliferation of argument by anecdote around this issue.
Wasn’t there some controversy recently about increasing the age at which breast screening for women is heavily subsidised? The theory being that although there are a few high profile cases of young women getting breast cancer its actually pretty rare and mass screening of younger women is not very cost effective.
Robert @ 21 – I think mass screening actual has a dual effect of also acting as an awareness campaign. So when symptoms do occur there is less hesitation about going to a doctor and perhaps its something that people have already talked about with their GP.
Chris, I recall something like that. From what I remember, part of the issue is that mammograms don’t work very well in younger women, because the breast tissue is too dense for the mammogram to pick up any tumors.
Paul, I think if you can feel it it’s not a biopsy. The biopsy is done under a local, because it involves removing a bit of prostate.
There is continual debate about breast screening in under 50s because it’s not cost-effective and is only recommended for women with a family history, but I think occasionally reviews and studies suggest it might be cost effective. Occasionally you hear a pressure group demanding its extension to under 50s, and occasionally a new study suggests it’s also not cost-effective for over 50s.
We should count ourselves lucky that our health department is generally sensible about screening. In the UK they have a lot of controversy over cervical cancer screening, because it’s not recommended below 25 years of age, and doctors will refuse to give smears to younger women. This is purely done for reasons of cost-effectiveness and it puts the UK out of step with most of the developed world. The UK also has unusually high rates of cervical cancer and low rates of screening. I wonder why?
sg,
thanks for that. They didn’t tell me I had a local. Anyway, it wasn’t sore afterwards.
Through my (female) GP’s intuition, I had a PSA test in February 1994 when I was feeling ‘unwell’ – there were no symptoms of urinary tract problems. She said at the time that she would get into trouble (from the Health Department) for ordering a PSA test on me, as I was then 47, three years away from the 50 year old ‘threshold’. The test reading was 59, on ultrasound the prostate was found to be significantly enlarged (three times normal size) and it appeared that a lymph-node was affected.
My urologist said he wouldn’t operate and I was prescribed 36 radiotherapy treatments – apparently as the first part of the inevitable palliative care I would need in the very near future.
My PSA reading dropped to below 1 (one) as a result of that treatment and it is now almost 16 years since I finished treatment. My PSA reading remains very low.
I do have a number of comments as a result of my experience.
1) I had a rectal examination one week before being advised of the reading and having the ultrasound. The (male) doctor said there was no abnormality.
(2) Around the time of my diagnosis and periodically since, the newspapers ran stories which said that there was no need for prostrate screening as it would create fear in too many males and the test is not accurate. My view is that, having no symptoms and as the standard examination was useless, my GP and the test saved my life.
(3) Is there any conclusive evidence to show that ‘most prostate cancers are found at post-mortem’ as this is used as a justification for not screening?
(4) Although I would have opted for surgery, as I thought the cancer could be ‘cut out’, that decision was taken from me by my urologist. Would another
doctor have proceeded?
(5) Just because some people are terrified by the word ‘cancer’ (understandably) is it right not to screen?
(6)Why does it have to be an ‘emotional’ or ‘political’ discussion that includes the idea of a competition between cancers in females and males?
(7) I had a very positive attitude (partly out of my natural naivety and lack of knowledge) and regarded having cancer as ‘an adventure’. Along with receiving excellent medical care from the radiologist and urologist, I meditated and took time off work in order to allow my body to recover. Was I just lucky?
Not an easy decision, but I wouldn’t have the test. It’s just not very good at detecting life-threatening cancers. On the other hand we could have a good screening program for bowel cancer, but successive government’s have ballsed it up.
Goebte, thanks for sharing your experience. I’d like to respond to a few of your points.
On point 3, the Wikipedia article on prostate cancer cites a study which apparently states that autopsies of 80-year-old men who died from other causes revealed prostate cancers in 80% of them. I can’t retrieve the study from home, unfortunately.
On point 5, it’s kind of beside the point if screening doesn’t work. And, while it may have worked in your case, its track record, when systematically studied as a screening tool, is lousy. See the rest of the discussion, and the papers referenced in the op-ed I linked to.
As to point six, disease is political. Politics is a part of life, and sometimes it works to the good. But sometimes politics – in this case, the politics of gender – may be intruding to the detriment of patients and the wider community.
On your final point, speaking personally, there’s surely something to be said for making the best of whatever one’s lot in life is, and I wouldn’t be so arrogant to judge whatever worked for you or anyone else facing a far more serious medical situation than I have ever faced. But, as someone who is (thankfully very, very lightly) touched by a chronic illness, while it has led to some fascinating experiences and taught me some interesting things, I still don’t regard my disease as anything other than an inconvenience, a source of occasional worry, and something I would be very, very happy to have remained ignorant about.