UK Edition
The trauma of the ‘false positive’ test for prostate cancer
The first hint that something might be wrong was that, for once, my GP’s surgery seemed anxious to see me. Normally, getting an appointment takes weeks, but this time my phone bleeped with a text requesting I pay an “urgent” visit.
“Urgent” isn’t a word that’s cropped up before in my medical history: in 49 years, I’ve barely had a day’s illness. But after years of getting up to pee rather too often during the night, I’d finally got round the week before to one of those routine prostate cancer checks that men of my age are advised to have. Yep, the rubber glove job, although normally, that’s as far as the trauma goes. While a weak bladder can be a sign of prostate cancer, it can also just mean you’re getting on a bit.
Or so I hoped. But having analysed the blood sample I’d given just after the glove business, the GP explained that my PSA levels (short for prostate-specific antigens, an indicator of prostate cancer) were rather high. Time to see a consultant, he said - and time for two agonising months of further tests, and a mounting, creeping fear I was going to die.
Strictly speaking, I shouldn’t have been worried. Prostate cancer, after all, is usually one of the disease’s gentler strains, especially if it hasn’t spread elsewhere in the body. Among the 47,000 British men diagnosed with it every year, many don’t even need surgery, and among those who do, survival rates are good. But while the treatment options are now well-honed, the PSA test is notorious for “false positives”. As Dr David Montgomery, Director of Research at Prostate Cancer UK, points out, three quarters of men with a raised PSA level turn out not to actually have the disease.
There is an exciting new one-off blood test in development, capable of detecting aggressive cancer with much more accuracy, but it won’t be available on the NHS for three years. In the meantime, though, thousands of British men will continue to undergo the rather less reliable checks that I went through - with all the attendant stress.
At first, my consultant didn’t seem too worried. While my PSA level was 3.9 - a figure of 4 and above is the threshold for concern - I had no other tell-tale symptoms. But when a follow-up PSA test showed a level of 5.9, he booked me in for an MRI scan. And that was where things got scary.
The MRI scan gives you a score from one to five. A score of one means it’s “very unlikely” that you’ll need treatment for prostate cancer, while a five means it’s “very likely”. I was a five. I’d now have to have a biopsy - where tissue samples are taken from the affected area - so the doctors could find out more.
As my other half and I wandered, dazed, out of the hospital, we tried to look on the bright side. The MRI scan had showed that the cancer, if that was what it was, hadn’t spread elsewhere. But it was hard to keep dark thoughts away. Matters weren’t helped by the fact that the very day I’d received that first text message, my partner had been attending the funeral of a childhood friend who’d died very quickly of a different, much more aggressive cancer. She had two young children. Just like we did.
How would we break it to them, we wondered, if the biopsy brought more bad news? And what if the cancer turned out to be super-aggressive? Would I find some inner spiritual reserves to cope, and pen some award-winning “misery memoir”? Judging by how queasy I felt already, I doubted it.
The biopsy itself was a bit like a re-run of the rubber glove bit, only with what felt like bigger implements and a staple gun (don’t ask). To make it more bearable, the kindly lady doctor asked me to choose some music to play through her I-phone on the consulting room stereo. When she told me she did that for every patient, I suggested she put together a playlist named: “Now that’s what I call prostate biopsy music”.
We then had to wait another week for the biopsy results, which, as with every pause in the procedure, felt like an eternity. In fact, I was being processed pretty quickly by national standards, although that merely fuelled my paranoia. The idea that I was in some NHS fast-track merely convinced me that the doctors must be really worried.
On the day we went to hear the results, we arranged for a friend to look after the children after school, just in case we needed some breathing space. I’ve had a few scrapes over the years as a foreign correspondent, but never had fate hung in the balance like this.
The consultant got straight to the point. “Good news, Mr Freeman, we can’t find any sign of cancer. Come back for a check in six months, but at present, we can’t see anything to worry about.”
My instinct, at that point, was just to hug him, so it fell to my other half to ask questions. What about my soaring PSA level? And what about the “five” from that MRI scan? All the tests, the consultant patiently explained, were just indicators, and unfortunately were not always conclusive. PSA levels could oscillate daily. Only the biopsy could really tell what was going on.
By then, of course, I no longer really cared: I left the hospital feeling like I’d been reborn. I’m wary, too, of overplaying the stress of it all, as to those who do get diagnosed with cancer, my weeks of what turned out to be needless fretting will seem like small beer. Still, for all of us who get that “urgent” text message one day, any new test that sorts the whole business out quicker is to be welcomed.
Meanwhile, I’ll be back at the hospital in the New Year, just to check that that “false” positive hasn’t changed into a real one. With any luck, there’ll be no need for more biopsy background music.