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What I now know – or think I know – about prostate cancer

MY PC Adventure – Chapter 25

See the full story HERE>

I was alarmed recently to get a call from a mate who has just been diagnosed with prostate cancer.

Alarmed on two counts:

  1. Here was another friend diagnosed with the disease.
  2. His doctor told him to get in touch with me – because I’m an expert!

I hope very much the doctor prefaced the “expert”: with the word “lay”, meaning I’m a non-medical authority.

But I’m not keen on that label, either. I would never give medical advice, and I’m wary about giving any other kind, other than to point people in the direction of information sources I have found to be useful.

What people are after, I think, are:

  • Some comforting words from someone who’s been through treatment, a word of hope that their first thoughts about imminent death are likely to be misplaced (even though they will probably have heard truly expert advice to that effect from their medics).
  • Some translation of the medical jargon they have just been subjected to. Some doctors seem better than others at speaking in plain English, and all of them are justifiably wary about making predictions. Some may even unconsciously favour the kind of treatment they offer, to the neglect of other options.
  • Some insight into what they face. Men are suddenly very keen to know what treatment to choose, what happens with each kind, and what it will do to them, especially in terms of potential incontinence and impotence. And (if they’ve never had one) what it’s like to have a catheter.

So, am I in a position to help? What do I actually know about prostate cancer? Is my “little knowledge” a dangerous thing?

To the first question, yes, I can help a little, even if it’s to calm someone down and provide solid evidence that people do indeed live through the experience of prostate cancer.

But then we run into the big problem: every man’s case seems different. No two patients will tell you the same story, which is hardly surprising given the mathematical possibilities.

Consider the variables:

Do the maths: there’s any number of possible scenarios and outcomes.

Add to that the constant development and refinement of new drugs and treatments, and the option of taking part in drug and treatment trials, and nobody can say with any certainty just how any one newly diagnosed patient will fare.

All I can claim to offer in the way of help is to urge people to find out more for themselves so they can ask their medical practitioner the right questions.

As has been told on this blog (see John and Mary’s story), nobody has to take the bad news and the first opinion(s) and accept their fate without question.

Mary is an average Kiwi woman with no medical training who refused to accept everything the doctors said about her partner’s options. She researched so thoroughly she was able to query what she was being told in the same technical language as the doctors.

Most people could do that, but it’s not easy. When first diagnosed, I attempted to find out more on the internet (not that I didn’t feel comfortable with the urologist’s views) and it seemed overwhelming.

It wasn’t until after my surgery – when I had a couple of months with nothing do but get better – that I researched the ‘net properly, and identified the very few websites worth looking at.

Most of the prostate cancer stuff on the ‘net is either

  • incomprehensibly technical;
  • incomprehensibly sensationalist (read: most news media);
  • written by public relations hacks paid by drug companies,
  • the ranting of idealogues and polemicists.
  • or porn-related (prostate milking, whatever that is, seems a big fetish with some).

The aim of this blog has been to mine technical sites (like Uro Today) which report the latest news and research and then try to translate the incomprehensible into the digestible.

It’s noticeable that whatever else doctors and researchers learn about their trade, little of it encompasses the ability to communicate.

I’m often helped in this task by the writing of Mike Scott, the non-doctor webmaster of The New Prostate Cancer Infolink, whose prose is fluent and clear. He runs the best site on prostate cancer in the world.

So, what do I know (or think I know)?

  1. All men above 50 should get themselves tested for prostate cancer. After the age of 60, it should be an annual event.
  2. It must involve both the PSA blood test and the digital exam. Some people (like me) don’t register PSA change in the event of cancer.
  3. A worrying number of men pretend prostate cancer (or any other kind of disease) doesn’t exist and never go to the doctor for a checkup.
  4. If you have been, and the news is bad, get more than one medical opinion of your diagnosis, preferably including one from a cancer specialist (oncologist). Urologists tend to favour surgery, radiologists radiotherapy, etc.
  5. There’s rarely any reason to panic, except perhaps if the diagnosis is late in the piece and the cancer has spread. But even then, it depends…
  6. As many as half of all men will get prostate cancer, but most won’t ever know because they’ll die of old age or something else before it shows up.
  7. Up to 3000 Kiwi men a year are diagnosed, and about 600 die each year, figures that have not changed much since the mid-90s when PSA testing came along (and there was a sudden rise in diagnoses at younger ages).
  8. So your chances of dying, statistically speaking only, are about one in five of those diagnosed, who in turn represent about 15% of the male population. So that’s about 3% of all men (but don’t rely on my maths – do some research of your own on the Ministry of Health website).
  9. Maori and Pacific Island men have much worse stats, which suggests they ought to be offered mass-population screening (like breast and cervical cancer) by the Government.
  10. Few, if any, governments in the world offer mass-population screening, saying there is too big a risk of over-diagnosis and over-treatment, that side effects of treatment are unacceptable if someone didn’t need treatment in the first place, and that PSA testing is unreliable.
  11. A lot of research is going into trying to establish whether PSA testing is effective, but so far the results are confused.
  12. A lot of research and money are going into new tests, drugs and treatments, especially in the US.
  13. The holy grail for researchers is a test that will tell if a prostate tumour is dangerous and needs treatment, or if (as in most cases) it’s so slow-growing (indolent) it can be ignored.
  14. The four main treatment options and their variations – surgery, external radiation, brachytherapy, drugs (hormone and/or chemo) – are highly effective to some degree or other, but all have their down-sides, such as urinary problems, impotence, bowel problems, depression, risk of a recurrence of the disease, etc.
  15. I know a lot about:
  • open surgery radical prostatectomy (because that’s what I had), but only so far as it affected me;
  • having a catheter. No problem in my case because the urology nurse who removed it knew what he was doing. And I’ve never had to self-catheterise myself, a tricky procedure, judging from the accounts some men give.
  • the importance of getting fit before and after the operation;
  • the need to change diet – to cut down on red meat, and increase intake of fine Central Otago pinot noir wines;
  • the importance of a supportive partner, friends and family;
  • not rushing back to work;
  • the need to avoid stress;
  • changing your views on life (buy a campervan!);
  • not rushing into resuming sex.

The danger of a little knowledge

I read new stuff about prostate cancer every time I check my Google Alerts and RSS feeds, and I’m regularly surprised by new slants on aspects I thought I was familiar with.

Prostate cancer has become one of the biggest medical industries in the world, no surprise given its high incidence (it’s the most reported cancer in most countries).

My “little” knowledge is indeed that.

But one advantage I have is an ability to translate the lexicon of the prostate industry into that of every man.

It’s what journalists can do, especially aging ones who get the idea into their heads that here, at last, is some good they can do.

Read the full My PC Adventure story HERE>

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PART 9 of My PC Adventure (click HERE to see the full story so far)

OF COURSE, there was no party in Ward 29 of Wellington public hospital on my first day of post-radical prostatectomy recovery.

But it was a circus, and it stayed that way for the two nights and three days I was there.

What sounded like a party was in fact the ward admin office, which – I discovered when I finally ventured out of bed to go to the loo – was just over the corridor from my part of the ward, a four-bed room partitioned by curtains and thin walls.

The noise was staff. I’m not sure if they were loud or not; it’s just they sounded that way while I was still spaced out and needing peace and quiet. Why did they let the phone ring so long…and who the hell would keep ringing so long when it was obvious nobody was going to answer? Wrong number?

It was a circus because a constant stream of performers passed before our eyes and within earshot, each with his or her own act – doctors, nurses, aids, cleaners, caterers, visitors, patients, surgeons, the paper man (selling DomPos, bless him), administrators, technicians, managers, students, even a librarian, who popped in to see if anyone wanted something to read.

The worst performers were the patients. We were impatient patients, some of us, demanding, rude, loud, irrascible, unreasonable…and forever needing to pee (if we didn’t have hooked-up plumbing).

The nurses, by and large, were beautiful human beings, serenely immune to the grumpiness of their charges.

When you’re sick and helpless, anyone who is prepared to pass you the drink of water that’s just out of reach so you can dampen what feels like fatal thirst will be regarded with awe and limitless gratitude.

Well, maybe. The guy next door, whose ugly-sounding face I never saw, grouched endlessly at anyone who came near him, and spent long periods on his cellphone complaining about the service, especially “that silly little doctor”.

Listening to him (there was little choice), I felt ashamed to be a middle-aged man. Perhaps he’d been caught by the recession and hadn’t kept up his medical insurance, because he obviously believed he shouldn’t be in such an awful place among such people. He was someone used to being in charge; here he simply wasn’t.

The oddest performers in the circus were the lightning one-act players, people (not necessarily in white coats) who would sweep in, look blankly at my room-mate, Caroline, and me, say nothing, then turn and walk out. Who were they? What did they want?

In the end, we took to saying: “Yep, we’re all here.”

operation41Now, let me take stock.

I’m lying on my back on a very comfortable adjustable bed (I’ve found the controls); I’m retained in the bed by sides, like a cot; as you can see from the picture, I’m wearing a nice little off-the-shoulder number (the classic “arse-flap” hospital gown); I have oxygen going up my nozzer; I have saline pumping into the back of my left hand (I beep when the drip dispenser behind me nears empty, which seems to be every few hours); I have a bedside cabinet on my left, but it’s too far back to reach (and I daren’t move); I have a tray-table on my right, also too far back to reach; I have the buzzer in the bed beside me, but I’m reluctant to try it, given the amount of buzzer-abuse that seems to be going on.

tubesWhen I lift the bed cover I see a tube coming out of my lower right side, siphoning bloody liquid towards a container at the foot of the bed, and alongside it another tube which emerges from the end of my penis, this one taking bloodied urine in what looks like a constant flow (note to self: better drink more water).

I’ve had a breakfast of cold, leathery, white toast and marmite, and a cup of strong tea, and I’ve kept it down.

There is no pain.  But my right knee feels numb, and my backside and lower back are getting sore (I never sleep on my back, usually).

However, there are plenty of distractions from such minor discomfort.

For instance, the arrival of the top-line act, a phalanx of doctors, fully-fledged and student, who appear suddenly, pull the curtains around, and peer at me with urgent interest.

“Hello, how are we today.” Never better.

The rest of the dialogue is the top man (who may or may not have introduced himself) talking to his throng. We take a look at the wound and pronounce ourselves happy.

Then we’re gone. Well, they go, I stay, none the wiser. Did I miss something? Apparently not. Right. Get on with the recovery.

One of the angels tells me I’ll be getting up today. Yeah, right. “Yes, miss, later.” Much bloody later.

Another one comes to fit my catheter bag. This takes some pondering, especially to cut the tubing to the right length. We agree the bag will be strapped to my outer right calf, just below the knee. A strap goes round my thigh to make sure there is no tugging on my willy.

At this point I realise the willy appears to have taken fright and retracted inside my body. Seinfeld loser George Costanza’s “I’ve-been-swimming” excuse for hyper-shrinkage has nothing on this. This…this is disappear-age.

What they say about leaving your dignity at the door of the ward seems all too true. Oh well. I’m sure they’ve seen it all before, even if they are young enough still to be at school.

Lunch arrives. Smells good, says Caroline, whose sole sustenance comes down a tube. It’s soup with industrial-strength taste of old shoes, a brick of potato-dominated frittata (inedible), and the ubiquitous jelly and ice cream. Mmmm. I get to fill out a menu for tomorrow; reads delicious. I order a drip, like Caroline’s.

Next, we lose the oxygen. And the saline drip. Finally, a nurse arrives to remove the drain. This becomes something of an ordeal for me and her because it enters my body at the most ticklish and sensitive spot I have. I can’t help but tense up as she withdraws tubing that measures 20 metres minimum. But it gets done, without fatality.

I amuse myself sending texts, especially to the class who will be graduating today. Miss you, guys.

A man arrives to offer a shower, advising that I need to wash the mess between my legs. What mess? There is no mess that I’m aware of. Later, buddy.

The hours slip away in pleasant conversation with Lin and Caroline, and her daughter, a constant visitor.

Then I muster the courage to get up. Am I boring you with this? Sorry, but it’s such a big deal when you’ve been lying there thinking of blood clots forming in your legs unless you go for a walk.

Caroline gives a thumbs up as I totter out and down the corridor – to find there are only two loos and they’re both occupied. I wait, enormously relieved that nothing has split or spilled, and I haven’t passed out.

Finally, I’m in…then, of course, pause to ask myself what I’m doing here in this spacious bathroom and toilet: I don’t need a leak (that’s taken care of).

So I have a wash and sneak a look in the full-length mirror, and see for the first time that below my conveniently swollen stomach I’ve been vertically stitched from just above the boys to just below the belly button, and I’m bald as a coot. They shaved me (of course), even taking a patch of hair off the top of one thigh.

Right. That’s enough looking. You’ll just make yourself faint. Back to bed, boyo, as fast as the legs and the stomach will go.

My rest from exhaustion is broken by a visit from the anaesthetist who did my pre-op assessment. I mention the numb knee; it’s a temporary after effect of the spinal anaesthetic, he says. Let him know if it persists. It doesn’t.

The afternoon ends with my submitting to a neurological exam on my head. The Asian doc who assisted with the operation has appeared with an admiring student, who needs a practice run doing the exam: “Are you bored, Mr Tucker?” Yeah, a bit. “Do you mind if we…” No problem. It passes some time. She does well, and I learn useful stuff.

NEXT: A night to remember, then home at last.

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