If I've got cancer, I'd rather know than not know

(First published in the Manawatu Standard, the Nelson Mail and Stuff.co.nz. September 19.)

On talkback radio a couple of weeks ago, a succession of male callers talked about their experience of prostate cancer.

Prompted by the Blue September prostate cancer awareness campaign, the host had invited listeners to tell their stories. Several men duly phoned in and gave accounts of their diagnosis and treatment.

One caller said he had to go to three doctors before he found one who was willing to order a PSA test, which is the most common diagnostic tool for prostate cancer.

Another caller backed that up. He said he knew a number of men whose doctors not only discouraged them from having a PSA test, but refused to conduct a digital rectal examination – another routine diagnostic procedure.

Yet another caller said he had asked his doctor whether he should have a test and was advised: “Don’t go looking for trouble”. He got his test only after seeing another doctor. A subsequent biopsy confirmed the presence of cancer.

What’s going on here? If a PSA test is a simple first step toward determining whether a man has a potentially fatal illness, why do some doctors discourage patients from having one?

Just in case you’re wondering, the prostate is a walnut-sized organ between the bladder and the penis. It produces seminal fluid, so only males have it. An elevated PSA count, which is identified by a blood test and can signify the presence of cancer cells, is often the first indication that something is amiss.

The Prostate Cancer Foundation recently disclosed that it gets five calls or emails every week from men who wanted the PSA test but were turned down by their doctors. Yet one in eight New Zealand men will develop prostate cancer at some time in their life, and more than 600 die from it every year. It’s the third most common cancer in New Zealand.

So why are so many doctors apparently reluctant to act? A possible reason – and this is purely me speculating – is that prostate cancer can be a tricky disease to deal with. Some GPs throw up their hands, figuratively speaking, at the very mention of it.

First, it can be difficult to diagnose. The PSA test is a useful first step but it's not fool-proof and can give misleading results.

If it suggests there might be something wrong, it’s usually followed by the digital examination - the finger-up-the-bum test in which the doctor reaches inside and feels the prostate for any sign of abnormality.

Doctors don't enjoy doing this, for obvious reasons. The consensus among callers to the talkback show was that that GPs who were younger or female were more comfortable with it than older male doctors.

Patients don't much like it either. Some men seem to regard the digital rectal examination as threatening to their masculinity. There’s no getting around the fact it can be uncomfortable as well as undignified. But hey – if it can save your life, who cares about a little indignity?

Here, though, we encounter another problem. As one doctor explained it to me, the digital examination can be unreliable too.  The doctor can’t feel the whole prostate, so a cancerous growth may still escape detection.

If something’s found, the next step is a biopsy, in which tissue samples are taken from your prostate. This is an invasive procedure and it can be unpleasant. It also carries the risk of side-effects. For those reasons, some doctors hesitate to recommend it.

And again, a biopsy is a bit of a shot in the dark. As I understand it, there’s no guarantee that the samples taken will be taken from the part of the prostate that’s diseased. So again, the cancer may be missed.

That’s the thing with prostate cancer: there seems to be uncertainty at every turn. Treatment isn’t cut and dried either. Options include removal of the prostate, radiation therapy, hormonal treatment or brachytherapy, in which radioactive “seeds” are implanted in the prostate.

There seems to be no single “correct” or one-size-fits-all approach and there are potential downsides with every option, which may explain why some GPs seem tempted to put the illness in the too-hard basket.

I have prostate cancer myself. It was detected in 2016 after I went “looking for trouble”. A routine blood test showed my PSA level had risen slightly beyond the safe zone and a biopsy confirmed the presence of what's technically described as low-grade, low-volume cancer.

So far, my PSA remains relatively low and stable. I’m under “active surveillance”, which makes me sound like a suspected agent for a hostile foreign power, but simply means I have regular tests to make sure my PSA count hasn’t spiked .

I don't lie awake at night fretting about it. In fact I barely give it a thought from one week to the next. What would that achieve?

In any case, cancer is no longer the death sentence it was once regarded as. I know several men who were treated for prostate cancer years ago and remain healthy and active. If I stay lucky, I may be one of the many who die with the disease rather than from it.

But I’ll tell you one thing: if I’ve got cancer, I’d rather know than not know.