Freed From The Archive - On Not Having Prostate Cancer.
And why I'm NOT particularly glad that I got tested early.
Me about to have my test…
The below piece was published in the Times Magazine ten years ago. Now it’s ‘Movember’ again, I thought it was worth revisiting. As you can probably tell from reading this, I didn’t have terminal prostate cancer then or now. In fact my PSA test shows lower levels than it did at the time I wrote this article. Some of the information may be out of date - prostate cancer treatment has moved forward somewhat. However, most of it still applies, which is to say the assumption that early testing for prostate cancer is invariably a ‘good thing’ is highly questionable.
It was at the beginning of November last year (2012) when I went to my doctor’s to… Well, I don’t remember why I went there. I just know that while I was there, I thought I would get him to check my prostate. Perhaps it was the fact that I was sporting a malignant growth on my face – an ill-formed moustache for the “Movember” prostate cancer awareness campaign – that prompted me.
Despite my Movember involvement, I remained unsure what the function of the prostate actually was (although I knew women didn’t have one). However, I knew vaguely that men in their fifties and beyond had a heightened risk of developing it. I also knew it was one of the biggest hitters in the cancer pantheon, right up there with breast, lung and colorectal cancers.
When I suggested a test, my doctor, a sympathetic and highly competent chap, hesitated – and not, it turned out, because he was necessarily averse to sticking his finger up my bum. He told me there was research suggesting that early intervention into prostate cancer makes no difference to the mortality rates, at least averaged out across a large sample, and that early testing was therefore controversial. There were, apparently, a significant number of GPs who refused to offer the test on request when there were no other symptoms, such as weak urine flow, frequent urination at night, or difficulty and/or pain in passing water.
I was surprised. I had always assumed that the reason for regular prostate checks was that it was a form of cancer that could be dealt with relatively easily – so long as it was caught early. Early detection certainly seemed to be an unquestioned good in the case of most other cancers. I also thought, partly as a result of such testing, that survival rates for prostate cancer were unusually high. (I later found out that prostate cancer has a nearly 81 per cent five-year survival rate, and where the growth is still localised – which is in the vast majority of cases – the figure stands at well over 90 per cent. Where it has spread beyond the prostate, survival rates drop to about 30 per cent.)
I also knew that Sir Ian McKellen, whom I had seen a few years previously in a demanding, dynamic King Lear, had been diagnosed with prostate cancer seven years before. It is not unheard of for men to have prostate cancer for many years and die of old age without ever knowing about it. Some research has suggested that 80 per cent of men in their eighties have some cancerous cells in their prostate.
Lord Lloyd-Webber had it diagnosed in 2009 and maintains a disappointingly active musical career despite having his prostate removed. Michael Parkinson, 78, seemed positively upbeat about his diagnosis earlier this year. He was told to expect a “full recovery”. Robert De Niro had prostate cancer at 60 and, after treatment, returned to full health and fathered a child at the age of 68.
All these outcomes seemed to suggest that early testing would be a no-brainer. But my GP appeared to be saying that it could be pointless. His viewpoint was interesting, but it didn’t seem like a vital piece of information. There was no prostate cancer in my family, so far as I was aware, and I wasn’t experiencing any of the symptoms – I was rather proud of the fact that I p***ed, if not like a horse, then a small, sturdy pony.
The doctor gave me a rectal examination, which was painless and took less than a minute. He said it showed a slight swelling, but nothing unusual for a man of my age. However, to be certain, he said it might be an idea to take a PSA blood test. I agreed. Why not? I felt sure that I would be clear.
PSA stands for “prostate-specific antigen”. Supposedly a raised level of this particular substance in the blood can be an indicator of the presence of prostate cancer. It was by no means entirely reliable, but it was the best early-stage indicator, short of intrusive surgical procedures, that the medical profession had.
A few weeks later, I returned to the surgery to have the test. I forgot about it and assumed I wouldn’t hear from them again.
On December 10, I received a call from the surgery. “We’re ringing about your test results. We’d like you to come and see the doctor.”
“Um. OK. When?”
“How about tomorrow?”
It’s unusual to be called into the surgery immediately to be told great news about your health. I felt apprehensive. When I went to the surgery the next day, the GP told me my PSA was 5.9 nanograms per millilitre. Anything above 4 could indicate prostate cancer. I asked for clarification.
My doctor said it would be best for me to see a urologist for further information. What were the chances of my having prostate cancer? He wasn’t sure. “Probably less than 50 per cent.” He must have seen my eyes widen. He added: “I mean, I don’t know. It could be as little as 5 per cent. Do you cycle?” I do. “Cycling can raise the level. So can sexual activity. We should do a retest. Stop cycling for a few weeks, and no sex for three days before the test.”
I arranged to have another test and left the surgery. I didn’t feel great – but I hoped that cycling was the culprit. After all, a few weeks before the test I had cycled across Dartmoor. My test was booked for December 20, after I had parked my bike for a few weeks.
The first thing I did on getting home was check the internet. I discovered that – according to the American Cancer Society – a PSA level between 4 and 10 indicates a 25 per cent chance of having prostate cancer. A PSA higher than 10 increases the chance of having prostate cancer to 50 per cent and above.
So – it appeared I had a 25 per cent chance of having prostate cancer. That wasn’t great, even if you flipped it in your mind to the fact that I had a 75 per cent chance of not having prostate cancer. However, browsing confirmed that early intervention was problematic. This was clear from another article which, I presumed, referred to the research that my doctor had been talking about.
The article was from The New York Times, July 2012, and the headline was “Questioning Surgery for Early Prostate Cancer”. The first paragraph summed up the thrust of the article.
“A new study shows that prostate cancer surgery, which often leaves men impotent or incontinent, does not appear to save the lives of men with early-stage disease, who account for most cases, and many of these men would do just as well to choose no treatment at all.”
After finishing the article, I felt annoyed with myself for agreeing to take the PSA test. Whatever the eventual outcome, my peace of mind was being eroded, even at this early stage of the diagnostic process – and peace of mind is extraordinarily valuable, as you swiftly discover when you lose it.
My mental upset was not helped by input from a close woman friend I spoke to about it, a former intensive care nurse, who was dismissive of my concerns. She refused to take me seriously, implying that I was making a fuss about nothing. I pointed out to her that if one of her friends came to her with a lump in their breast she might not be so insouciant.
I’m sure her intentions were the best – for her to display worry might have increased my anxiety. But it suggested to me that there might be a difference in societal attitudes towards prostate cancer and breast cancer, which are in fact equally common and equally deadly. Breast cancer, for example, receives roughly twice the funding of prostate cancer.
At this point, I made a choice – whether it was brave or cowardly, foolish or wise, I’m still not sure. I decided to rewind the clock and pretend that it never happened. I cancelled my second blood test, and I got on with Christmas and tried not to think about it. After all, if intervention made no difference, what did it matter? I just wanted my peace of mind back. I would try to forget all about it.
But shortly afterwards I found myself experiencing symptoms – pain and sensitivity in my groin, mainly. I also found myself going to the loo much more often than usual. I didn’t know if the symptoms were psychosomatic or not, but I seemed unable to return to my previous state of innocence.
Meanwhile, my mind was increasingly affected. I found myself waking up in the early hours, running scenarios through my head. I thought about coin tosses and drawing cards – what did 25 per cent feel like? And if I did have cancer and had five years left to live – the talk of “five-year survival rates” kept suggesting to me that five years was the likely wait on death row – then how would I live during that time? How would I avoid people treating me differently? The moment you are known to have cancer it will distort all relationships. They will no longer be natural, but filtered through the lens of someone who is “dying” – even if the dying is distant.
I was never scared, but I was worried – which was bad enough. The lack of fear surprised me. I found myself, in the abstract at least, reasonably philosophical. I was going to die sooner or later, whether I had cancer or not, and I had better get used to the idea.
The words of Shakespeare’s Hamlet kept spinning through my head. I found them profoundly reassuring. “There is special providence in the fall of a sparrow/ If it be now, ’tis not to come; if it be not to come, it will be now; if it be not now, yet it will come – the readiness is all./ Since no man, of aught he leaves, knows what is’t to leave betimes, let it be.”
In April this year, I abandoned my “forget all about it” strategy. Having stopped cycling for three weeks, I took a second blood test. When the result came, my PSA level had risen to 7.1. My doctor referred me to a urologist at the Chelsea and Westminster Hospital.
By now, I was beginning to assume the worst – at the very least an intrusive procedure, a biopsy, that would involve having a needle thrust up my rectum. That might well be the beginning of a lot of other intrusive procedures, most of them unpleasant and painful. I would have to face not only the possibility of the prostate cancer worsening, but I would have to negotiate agonising decisions about whether or not to have certain interventions.
What was interesting about the “celebrity sufferers” of prostate cancer was that they seemed to offer quite a strong degree of misinformation in their statements about the illness. Michael Parkinson said that there was a simple test to check for prostate cancer. “If you can pee against a wall from 2ft, you haven’t got it,” he said. Ian McKellen declared that it is “totally treatable” – which, I thought, since 10,000 men a year die of it in the UK, can’t be entirely true.
Andrew Lloyd Webber was the saddest read – and the most instructive. He was told that to be 100 per cent free of the disease he should have his prostate removed. He has done so, and is indeed free of the risk of cancer. But the treatment has rendered him impotent. And even though I do not know his individual prognosis, this appears – according to The New York Times – to be the fate of many men who take radical action out of fear of a disease that most probably will never kill them.
I try to get a clearer picture by talking to John Robertson, a specialist nurse at the charity Prostate Cancer UK. He points out that Michael Parkinson’s remarks are “complete bunkum”, but they do contain a grain of truth in that “if a man notices any change in his urine flow this could be a sign of prostate problems, including cancer”. He says, however, that McKellen’s remark about it being “totally treatable” is not inaccurate, since “treatable” does not mean “curable”. “Any type of prostate cancer can be treated, might be controlled or got rid of,” says Robertson.
A Swedish study in 2010 concluded that, even without treatment, only a small minority of men diagnosed with early-stage prostate cancer die from the disease. Drawing from a national cancer register, they estimated that after 10 years, prostate cancer would have killed fewer than 3 per cent of the men in the study.
But it can, confusingly, also kill you very quickly. The actor Dennis Hopper was diagnosed in September 2009 and died of the disease the following May. You could also be young – in your forties – symptomless and showing a low PSA score, and yet be dead a few months after developing the disease.
How does this often contradictory information square with the New York Timesarticle that claims early intervention is often pointless? Americans have a far greater attachment to the screening process than people in the UK, partly because their private health insurance system tends to encourage it. This would naturally result in much higher levels of diagnosis, and therefore overdiagnosis. In this country, there is no such screening policy, because it is felt that the risks outweigh the benefits. In fact, GPs are not encouraged to offer the PSA test, unless the man is in a high-risk category. If they are in a high-risk category, then the doctor may invite them to discuss the possibility of a test.
Indicating factors are partly genetic – Afro-Caribbeans have a higher risk, as does anyone who has prostate cancer in their family. Age – the older you are, the more likely you are to have it – and the presence of symptoms can also point towards a problem.
If you are referred for a biopsy – a process in which 10-12 samples are taken surgically from the prostate for testing – there will then be enough information for the cancer to be diagnosed as an aggressive cancer ( a “tiger”, in the cancer jargon) or non-aggressive, ie, slow-growing (a “pussycat”).
An MRI on top of a biopsy will determine whether the cancer has moved outside the prostate locally – say, to the lymph glands – or, more seriously still, to less localised parts of the body, such as the bones.
The overwhelming majority of those who discover they have prostate cancer are likely to suffer from a localised “pussycat” cancer. They may well be advised to do nothing about it – just watch and wait. But for many men, that is psychologically too much to bear. That’s why taking the PSA test in the first place is such a tricky decision.
“The biopsy might only find a pinprick of cancer cells,” says Robertson. “But the genie’s out of the bottle. Once you’ve said the word ‘cancer’, telling people they can avoid treatment can be useless. A lot of those guys think, ‘I don’t know if I can live with that knowledge.’ A lot opt to come off surveillance, because the men are too stressed out, having a PSA every three months and a biopsy every year. So they just go ahead and have the treatment, which can have unpleasant side-effects.”
The critical flipside is that for some men with an aggressive but symptomless prostate cancer, a raised PSA level may be the only earlier indicator of cancer at a time when it can be still be successfully treated.
Oddly, it was the least threatening outcome that worried me most – mainly because it was the most probable. Not so much an aggressive cancer, which one could face head on and try to deal with, but the existence of some kind of tiny growth that might live in my prostate unthreateningly for years. It would be like walking around with a loaded gun pointed at your head that might go off at any moment. At that point, I believed my mental life, at least, would never be the same. I would be a cancer patient, however low my risk, and as such, I would be someone who imaginatively, if not literally, had an uncomfortably close relationship with mortality.
I was spared having a needle inserted into my rectum. The urologist elected for an MRI scan instead. It was simple and boring. On May 20, I lay in a metal tube for 20 minutes. As I got changed from my hospital frock, I looked at the other patients – wan, old, clearly ill. I wondered if this was the universe I was about to enter.
On June 14, I returned to see the urologist to get my results. The MRI suggested that I had “benign prostatic hyperplasia” – an enlarged prostate. My PSA had also come down from 7.1 to 5.7. Not a “safe” level, but going in the right direction. I also had gallstones. I did not ever imagine I could be so happy to have gallstones.
I asked if the growth – or the stones – were anything to worry about. He told me that they weren’t. They would give me another PSA test in six months, to check. I was, it appeared, in the clear. As I cycled home that afternoon – exuberantly raising my PSA – I felt lighter and happier than I had done for months.
Later, researching this article, I discovered that a clear MRI scan does not in fact guarantee that you don’t have prostate cancer. But neither, for that matter, does a biopsy, which can miss cancer cells. But given my age, and genetic background and lack of other symptoms, I was on reasonably safe ground.
It was good enough for me. My peace of mind has been restored – and my “symptoms” have completely disappeared. In six months, I will have to take the decision whether to go for that PSA test again. At the moment, I’m veering in favour of it – but the truth is, I still wish I had never asked the doctor for the damn thing in the first place.