It's strange to be dying of something that doesn't hurt.
Well, "dying" is dramatic. It's not close and it's not even certain, but it does seem to be creeping up on me. I had surgery for prostate cancer 19 months ago, and we knew then it would come back, and now it has. I have a new tumour in the place where I used to have a prostate gland, which had the old tumour in it. The good news is, it hasn't spread.
The bad news is, that's not exactly true. It probably has spread, they just can't find it in the scans.
When I entered the cancer system, I was a prospective surgery patient and that meant I was in the care of urologists. They were wonderful. Now I've been passed along, to oncologists.
• Part 1: The day the phone rang
• Part 2: A urethra runs through it
• Part 3: What you keep, what you lose
• Part 4: To cut or not to cut
• Part 5: How the surgeons will slice me open
• Part 6: A pretty good scar
• One year on: Into the blue
They're wonderful too, but one of them used the word "serious", which was new to me. He also said "complex" and now I know a whole lot more about what they don't know. I'm an anomaly. The original blood test, from the Christmas before last, suggested the cancer should have metastasised. But there was no sign of that.
There's still no sign of it. But maybe that's because the cancer cells haven't clumped into another tumour yet. The operative word being: yet. Although the other operative word is: probably. It might not happen.
It might not happen yet.
I'm optimistic and that may be because I'm naive and I'm really good with that. I assume the time will come when there isn't much to feel good about, so why speed it up?
Disconcertingly, I am in pain. It just has nothing to do with the cancer, or with the little capsule they injected under the skin in my torso that secretes a testosterone-fighting hormone into my body. Can't feel it, can't feel the disease. Instead, I have bad knees, which makes walking awkward and has turning running into a kind of hobbling perambulation. Oddly, riding a bike is easier. My bike is my mobility scooter.
Simon Wilson - My cancer diary: 'I didn't go into shock, though I'm terrified of dying'
Simon Wilson's Cancer Diary: A urethra runs through it
Cancer diary part 5: How the surgeons will slice me open
It's age, says my GP. I'm in pain because of the normal process of getting older. There are other pains: the tendons in one shoulder, still not right from being knocked off my bike 10 months ago; sore hands, which is probably arthritis.
Still, I don't care about any of it. I care about the thing that causes no pain but which, regardless, I think about all the time.
What's it like to lose testosterone? Seven weeks in, I'm still not sure. There's tiredness, although that could be just the natural hibernatory instinct of winter. Hot flushes, which quietly come and go, leaving me just a little, well, damp. I've been more interested in cooking than I was for a long time. I really doubt that's the hormones.
I'm more chill. Possibly I'm just more sanguine about everything in life because, you know, I have cancer. Much more likely I've had the top 10 per cent of aggro knocked off. I'm good with that, too. It feels better.
At the end of October, barring a miracle from the testosterone attack, there will be radiotherapy, every day for several weeks. People do this all the time. It will be awful, or barely detectable, or something in between.
Maybe there will be a miracle. I don't believe in them, so it would be a rich joke if I benefitted from one.
I have a workmate, sitting close enough to touch if we reached out our arms, she's been through radiotherapy and she seems pretty sharp and as likely as anyone to live forever. The value of naive optimism is that I expect to be like her. Another colleague in the same work pod is young and right now he has a coughy cold and inflamed nose and he sounds so wretched you'd think he was the one dying. Illness is weird.
Prostate cancer diagnosis is on the rise. Unlike the other big cancers. The diagnosed incidence of prostate cancer in New Zealand rose by 23.6 per cent over just three years, 2015-2017. Breast cancer went down 0.1 per cent; lung cancer was down 1.1 per cent; colorectal (bowel) cancer dropped 2.4 per cent.
Melanoma went up, by 5.2 per cent. That would be alarming, if the prostate data hadn't just redefined what alarming really means. In 2016, prostate crept ahead of breast cancer as the number one newly diagnosed cancer in the country and in 2017 the gap widened: 3834 cases against 3294. More than 10 a day. Colorectal cancer was thereabouts, with 3081 cases, while melanoma (2552) and lung cancer (2226) tagged along behind.
Why the sudden rise? Graeme Woodside, of the Prostate Cancer Foundation, told me it's "quite mystifying". He points to more men getting tested and wonders if there's a baby boomer bulge in the numbers. But if its just boomers getting older, that would show up in all the cancers: we are the generation, after all, that roasted ourselves in UV rays every summer, and have happily consumed far more burnt barbecue and alcohol than we know perfectly well is good for us.
It can't really be explained by extra testing, either. Data from Healthscope, the parent company for Labtests and most other lab testing outfits around the country, shows a 5.7 per cent increase in prostate testing over the same three years. Up, but not by nearly 24 per cent.
Whatever the reason, there's a chance this thing is just getting started. The statistics are confusing. Officially, according to the foundation, one in eight men will develop prostate cancer in their lifetime. One will die every day.
The risk is not spread evenly: men who've had a direct relative diagnosed with prostate cancer under the age of 65 are up to 11 times more likely to contract it themselves. Māori men diagnosed with prostate cancer are 72 per cent more likely to die of it than other men.
That one in eight statistic looks very conservative. Everyone knows the old saying: most men die with prostate cancer but not of it. Many specialists say 60 per cent of men in their 60s have it, 70 per cent in their 70s, and so on.
The foundation's official advice is to get tested annually from the age of 50, or 40 if it's in the family. But should all men that age be screened? Well, possibly not. There are issues.
It's like this. If prostate cancer doesn't kill most men who have it, and doesn't even bring them much discomfort, what's the value in telling those men they've got it? Learning you have cancer is frightening.
If early detection is important, wouldn't it be because early treatment is, too? Well, no. For many men, the best treatment is to do nothing. Just keep an eye on it.
If it was you, would that feel right? You'd want treatment, wouldn't you? But treatment is invasive. Take it from me, the surgery is far more debilitating than you might expect. Urinary and erectile function are often permanently affected, and there are many other potential long-term effects, not just with surgery but with the other treatment options, too.
Several specialists have argued that we need to be clear what we're frightened of. It's not dying of cancer, they suggest. It's simply dying.
And here's the kicker. There's reasonable evidence that early detection of prostate cancer will reduce your chance of dying from that cancer, but there's much less evidence it will reduce your overall chance of an early death. And, it's said, we really should not confuse the two.
If you want the medical language for this, here's a 2016 report in The BMJ (formerly the British Medical Journal): "Using disease specific mortality as a proxy for overall mortality deprives people of information about their chief concern: reducing their risk of dying."
This goes directly to the question of whether men of a certain age should be routinely screened. The statistics are fascinating. Well, I find them fascinating.
A recently published European Randomised Study of Screening for Prostate Cancer, involving 182,000 men aged 50-74, found that PSA screening reduces disease specific mortality by 21 per cent after 13 years. That equates to one death prevented for every 781 men who are screened; and one death prevented for every 27 cases of prostate cancer detected.
The study is being used by the European Association of Urology to advocate for a full screening programme. But the EAU report has nothing to say about overall mortality rates.
The BMJ report, on the other hand, found that in meta-analyses of cancer screening trials, only a third showed a reduction in deaths from the cancer and none showed a reduction in early deaths overall. None.
The PSA, a simple blood test, is pretty harmless. But false positives are an issue: a 2011 study in the Annals of Internal Medicine suggested a false positive rate of 12-13 per cent among men who have had three or four PSA tests.
And it doesn't provide a diagnosis – just an indication there may be a problem. The biopsy is the diagnostic test, and it isn't always harmless.
Also, more screening means a greater risk of over-treatment. The Royal Australian College of General Practitioners reports that of every 100,000 men who are screened, 25 will probably receive more treatment than they need.
Then there's "psychosocial distress". A 2010 study in the Journal of the National Cancer Institute in the US reported an "immediate risk of suicide and cardiovascular death after a prostate cancer diagnosis".
If you tell someone they have cancer, quite often they don't hear that they don't need to worry, or not yet, because it can probably be managed. Their world collapses.
Does early treatment help? It does if your cancer is aggressive or, as mine was, showing "serious" signs that it would become so. But perhaps not otherwise. One 2016 British study reported in the New England Journal of Medicine looked at 1643 men with small prostate cancers. Those who had surgery or radiotherapy had a 99 per cent survival rate after 10 years. And so did those who simply monitored the tumour.
But the surgery patients doubled their risk of incontinence and problems with sex; the radiotherapy group had increased risk of bowel problems.
There was a downside to no treatment, though: the cancer progressed in one in five cases. Those patients then had treatment, but there's no word yet on whether the delay affected their chances of survival beyond 10 years.
There are a couple of other reasons population-wide screening may not be helpful overall. The PSA isn't expensive, but the biopsies and scans that follow are. If all men in the target age were regularly tested, and everyone who showed some sign of prostate cancer was then given biopsies and the range of scans available, and then many of them insisted on treatment, the system would be overwhelmed.
The quest for the health system is to avoid the disease some call screeningitis. They have to find a happy mean. First, a screening programme for those with elevated risk (family, lifestyle, some ethnic groups, and men showing symptoms). That's actually a lot of men. If you think you might be one of them, ask your GP for the PSA test.
Second, a good understanding among men that prostate cancer doesn't always require treatment. As long as it is monitored.
Do those things well, and they can channel more money to the places it's needed most.
What are they? As the Wellington researcher Jess Berentson-Shaw says, "Cancer prevention includes things like building active transport options, creating healthy food and alcohol environments, smoking control, vaccination, regulation of workplace."
If we really want to invest in effective cancer control, she says, that's where we have to start.
Next, good diagnosis. I'm being treated in the public health system, which is just fine. But the best diagnostic scanning – that is, the tool that will give me the best chance of survival – is available at only one hospital, which is private, so I pay for that. But it's valuable and more men deserve access to it.
And then: treatments. Immune therapy and genetic therapies are "changing everything", although they haven't done that yet. Surgery, radiotherapy and chemotherapy are still the staples – but they're also changing fast, with the techniques becoming more sophisticated all the time.
Among the medicines being considered by Pharmac under the Government's new $60 million boost to funding is one called olaparib. It's an ovarian cancer drug, but a 2015 trial conducted by the British Institute of Cancer Research found it slowed the growth of prostate cancer tumours in 88 per cent of patients with specific DNA mutations.
It was a small trial but a big pointer to the changes on their way. As the use of olaparib suggests, from a treatment point of view, classifying cancer by its place of origin in the body may be less important than identifying the genetic damage it does.
You may have spotted that more funding for end-of-life drugs, to delay death by a few months, is not on my list. I know, it's easy for me to say. I'm not at that stage so I don't need them. I accept that one day, especially if serious pain kicks in, I may change my tune.
But end-of-life drugs don't save lives. If we're serious about reducing deaths from cancer, whether it's prostate or one of the others, I hope our decision-makers can continue to look past the drug companies' well-orchestrated campaigns and keep the focus on lifestyle programmes, appropriate testing and early and mid-stage treatment, just as well as they possibly can.
Meanwhile, it's spring. The plum tree blossom has come and gone, asparagus has arrived and good books are already turning up in the shops for the Christmas season. The weather is alive, all blustery and even sometimes sunny, quite lovely for cycling. I'll start radiotherapy soon and I'm telling myself I really don't care.
Go Blue for Our Boys
September is Blue September, the Prostate Cancer Foundation's annual awareness and fundraising. From bike runs to costume balls, a whole range of events are happening - and the foundation is keen to help people organise their own. It says every cent raised helps provide support, campaign for greater awareness, advocate for better diagnosis and treatment outcomes, and fund research.
Donate, find out what's happening, how to organise a Blue Do and more, at blueseptember.org.nz