Things I recently learned about Prostate Cancer: Number One: I have it.

AUCKLAND, Recently: This article, written by Paul Catmur, originally appeared in The Listener*. I have prostate cancer (he wrote). I am currently awaiting surgery and hopefully it was caught early enough to be taken care of, but during diagnosis and treatment I’ve come across some views which are potentially dangerous. 

Let me begin by telling you about Clive.

Clive
Clive was an old friend of mine back in the UK from my niversity days before I headed down to New Zealand.

He was generally very fit and healthy but had been to see his doctor with a stubborn pain in his back. A blood test revealed a high PSA (Prostate Specific Antigen) and a biopsy confirmed that he had prostate cancer, which had spread to the bones in his back.

A couple of months after his diagnosis I visited the UK in their summer, and I caught up with Clive and his family. He was in great spirits, his treatment was going well, and he was cycling long distances to keep fit.

He was dead before Christmas.

‘You’ll be fine’
I know several other men who have had the disease, most of whom have recovered well. I mention Clive’s story because it worries me that a touch of complacency has set in about prostate cancer.

In an effort to be masculine and brush it off as a minor inconvenience we’re in danger of trivialising it. Several of those that I’ve talked to seemed to consider it almost as if it were a cold. “More men die with it, than from it,” is a common refrain. “Have the operation and in a couple of weeks you’ll be fine.”

While the survival rate is high, one in 10 New Zealand men will get prostate cancer at some time in their lives and it still kills 650 men a year. For each man that dies many others will experience unsettling side effects from the treatment.

Most people will know someone who has had the disease but whatever you may hear, be careful before using that as an example as everybody’s story is different.

This is mine.

In the beginning
In 2006 I was on a flight back to Auckland from Hong Kong. Relieved that the illuminated toilet sign was finally off, I made my way up to the front of the aircraft. This would be the fifth time I had been to empty my bladder in an eight-hour flight. Unless I’d been trying to match David Boon’s in-flight drinking efforts, this was not normal.

When I next saw my doctor I mentioned my issues with frequent urination, ‘OK. Yes. Well, you know what I have to do, don’t you?’ He asked. I nodded.

“He was in great spirits, his treatment was going well, and he was cycling long distances to keep fit. He was dead before Christmas.”

I was in my late forties and the dreaded DRE (Digital Rectal Exam) felt like a rite of passage into middle age, along with buying clothes based purely on comfort, and a general redistribution of hair. Some men can get rather squeamish about a simple procedure that can save their live. Being brave is about facing your fears not avoiding them.

“Ok, trousers down, lie sideways on the couch,” he instructed.

I complied, facing the wall. Shouldn’t be too bad, I told myself. Some people do this for pleasure.

“Yeow!”

I nearly hit the roof. The finger itself wasn’t too bad, but I don’t know why he had to keep the Vaseline in a fridge.

‘Well done,’ he said as I climbed down from the ceiling, ‘I know how embarrassing it is for you, it’s almost as bad for me.’ I didn’t believe that. He must have had his finger up hundreds of men’s bottoms. Surely it was like riding a bike.

He reported that, although slightly enlarged, my prostate was not something to worry about.

Yet.

Sixteen years later
For many years after this initial prod, I continued with several nightly treks to the bathroom. Then an annual blood test revealed that my PSA levels were rising, an indication of the possibility of prostate cancer.

I was packed off to see a specialist urologist who asked me several questions, did a flow test (in my case more of a dribble) then sent me for an MRI scan.

The MRI
While the PSA level reveals that your blood suggests that you might have cancer, the MRI test scans the area concerned to see exactly what’s going on.

The MRI machine is a large metal tube the length of your body. You lie on a platform which slides inside like a London tube train into a tunnel, though without the fast-food wrappers and the rats. The top is an inch from your nose which is not great if, like me, you’re claustrophobic.

I clamped my eyes tightly shut and was just dozing off when someone started hitting the tube with a sledgehammer. After a while they switched to a pneumatic drill. Then both together. This went on for twenty minutes and is about as much fun as it sounds. Eventually, they took pity on me and slid me out at Piccadilly Circus.

The Results
A few days later the results came through and I spoke to the urologist.

“Well,” he said brightly, “your PSA level is down.” Great, I thought, I’m all clear! “However, the scan suggests there may be a couple of areas of cancer.

That’s alright then, just a couple.

“One area shows a 50% chance of cancer, the other is 75%. We really need a biopsy to see exactly what we’re dealing with.’

“I knew very little about cancer but after five years working in a casino I knew quite a lot about odds.”

I knew very little about cancer but after five years working in a casino I knew quite a lot about odds. If they were cumulative odds, then my chance of cancer was 75%. If separate, then it was 87.5%. This felt like an important distinction though I thought it best not to challenge someone who would shortly be poking around my downstairs with a knife.

‘We need a biopsy to find out exactly what we’re dealing with,’ he said. ‘I’ll book you in for a couple of weeks’ time’.

Two weeks later
A nurse led me into the room where the biopsy was to take place. I was naked apart from a hospital gown. A chilly draft reminded me that it was open at the back. The room was lit up like Eden Park for a night game and six or seven masked individuals scurried about, declining to catch my eye.

I was led to the bed in the middle of the room and asked to lie down while they gave me a general anaesthetic.

It’s an unnerving experience to find yourself half naked and knocked out by drugs while somebody pokes around in your bottom in front of several onlookers. “I wouldn’t worry,” said a friend when I recounted my experience, “sounds just like an average day in advertising.”

I’ve found that one of the most noticeable side effects of prostate cancer is a profound and loss of dignity which it’s best to accept with cheerful disdain.

Recovery from the biopsy took a couple of days and was fine apart from the slightly unnerving discovery that I could now ejaculate blood. There’s always something new to experience on a cancer journey.

The biopsy results
A couple of weeks later I went to see my urologist for the biopsy results. He’d called me in early which I had deduced was either because there was good news, which he wanted to get out of the way; or bad news and it was all a bit urgent. I was half right.

“Well, he said. ‘You have one patch of cancer which is as expected, but the other looks rather aggressive. Five on the scale.” Five is the worst.

Although the urologist kept talking, I didn’t hear a word. My brain fixated on the words ‘aggressive’ and ‘cancer’ and ignored everything else that he was saying, preferring to concentrate on what I should do in the few remaining months I had to live. I didn’t even notice when he’d stopped talking.

Ahem. Do you have any questions?” I had many. Fly fishing in Cuba? A trip to The Super Bowl? Or maybe riding around India on motorbikes?

“No, no questions, I said. After all, he was a urologist not a travel agent.

He sent me off for a PT CAT scan to see whether the cancer had spread outside the prostate. The note had URGENT scrawled on it. As soon as I got home, I rang up the scan people who booked me in for the first available appointment. It was in two weeks’ time. I guess we had different definitions of the word URGENT.

“The room was lit up like Eden Park for a night game and six or seven masked individuals scurried about, declining to catch my eye.”

The PT CAT scan
This scan was more relaxing than the MRI. No enema required; no jack hammers let off.

Just a couple of hours of stress and mild discomfort.

The scan results
It’s quite common for people to forget things in the drama of cancer diagnoses, so when a day later I was summoned to get the results from my urologist, I took along a friend. He wasn’t a medic, but he worked with the health service and certainly knew more than me about this sort of thing. Sadly, this didn’t stretch to knowing the difference between 303 Lincoln Road and 305 Lincoln Road, so after an unscheduled trip around the wrong hospital we scampered to make it in time.

Finally, a good meeting. Or to be more accurate, a non-bad meeting. The scan results indicated that the cancer hadn’t spread which meant my prognosis was way better. On the other hand, I still had an aggressive cancer which needed to be dealt with. Now I had a decision to make.

The options
The aggressive nature of my cancer meant I didn’t really have to worry about whether I should have treatment or not, I just needed to get on with it.

These are the current suggested options for dealing with aggressive prostate cancer in New Zealand:

• The prostate can be surgically removed (Radical Prostatectomy).
• You can have external Beam Radio therapy with daily radiation treatment for several weeks.
• Or there’s Prostate Brachytherapy where radioactive beads are surgically inserted around the prostate.

The main downsides of surgery, apart from the disruption and recovery time, are the likelihood of diminished sexual abilities and incontinence, both of which would hopefully improve over time.

The other options have similar downsides, but I felt that the prostatectomy was the least-worst option for me.

The Waiting Game

I had to wait a month before the operation. Apparently, Kegel exercises to strengthen your pelvic floor give you the best chance of minimising the inevitable urinary leakage. I fastidiously performed them as though there was an Olympic medal in it. I also used the time to collect two enema syringes that were required along with a selection of urinary pads ready for recovery.

I’ve had more enjoyable shopping trips.

The operation
The Radical Prostatectomy is the surgical solution for having a troublesome and not particularly useful part of your body removed. The prostate is a sort of toilet region appendix which is liable to go a bit rogue as you get older. It makes one question whether the designer of the male body really had that strong a grasp of form and function.

I was asked to turn up on the required date clean and presentable but without deodorant. This wasn’t too much of an issue as, like Prince Andrew, I don’t sweat very much. I should also point out that is all that is just about all we have in common. (Apart from having visited both the Falkland Islands and Pizza Express in Woking.)

I’ll let you know how I got on.

Conclusion
I think it’s important to do more than rely on tales from your mates for medical advice. Talk to your doctor, take the finger if required, and have a read from reputable sources online. Catch prostate cancer early and you’ve a very good chance of surviving, miss it and it can kill you. Everyone’s experience is different, make yours as good as it can be.

• *The original Listener piece is paywalled. You can buy a sub here: facebook.com/nzlistener
• Catmur has written a follow-up article on the operation etc which should be in The Listener shortly. “Sadly,” he says, “there is no guarantee that it will end neatly in a cure …”