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PROSTABLOG NZ: My last PSA test recently showed it continues to be undetectable, some 20 months after my surgery in March, 2009.

But I’m not getting cocky just yet (forgive the pun).

From what I’ve read about prostate cancer treatment, if the cancer bug has got out of the organ during/after a prostatectomy, there’s a good chance the first signs will come two years after the operation.

My two-year anniversary comes up in a couple of months – so wish me luck.

It’s interesting how long it takes to fully recover from the surgery’s effects.

My scar is virtually gone and I’ve felt fit for ages.

There’s no incontinence. I haven’t done the pelvic floor exercises for more than a year, but there’s never any problem with not being able to hold it in, even when I’m busting.

Not that I put myself in the busting mode if I can avoid it.

So, hey, no regrets and no real worries. I’m bloody lucky.

Well, there is one worry – the number of friends and people I know who have been diagnosed. Talk about an epidemic.

And I wonder if the NZ Parliamentary Health Select Committee will ever get round to reporting back on its prostate cancer inquiry…

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PROSTABLOG NZ:  HERE are four key issues the NZ Parliamentary inquiry into the detection and treatment of prostate cancer ought now to be focusing on:

  • Mass screening…or not: Not. The evidence in favour of mass screening of all middle-aged men for prostate cancer is not sufficiently strong in statistical terms to overcome the counter-arguments concerning needless and over-treatment and high likelihood of after effects that will blight quality of life.

But…it’s not strong enough yet. That may change as more studies are done and closer analysis of the large random trials is completed. PSA testing may also improve, or be replaced with something better, a test that defines the actual risk to the patient.

  • Guidelines to GPs must be revised. Currently, GPs are forbidden by the Ministry of Health to routinely offer PSA tests and/or rectal examinations for prostate cancer unless a man asks, or mentions symptoms. Since this can be a symptomless disease (until it’s too late), that is unacceptable. It also presumes that people don’t move around, change doctors, lose track of medical records, or simply have little idea of the implications of dad dying of prostate cancer.

If the Ministry of Health wants to avoid high-risk treatment being offered unnecessarily, it needs to move the initial gatekeeping further up the food chain to the specialists.

  • Specialists’ advice needs to be delivered via a more balanced and less costly method. At present, the system works well enough up to the point the pathologist finds signs of cancer in biopsy samples.

But after that, men are left to fend for themselves when it comes to seeking advice from a range of authorities. Some don’t bother, and just go with what the urologist offers. Some can’t afford the $1600 charged by a cancer specialist (oncologist), who may be the most neutral source of advice available.

In the US, the first specialists in the hierarchy, urologists, earned themselves the unenviable moniker of “prostate snatchers” because of the lucrative, medical insurance-backed business of prostate surgery.

How about panels of doctors representing the main treatment options in NZ (surgery, robotic surgery, external beam radiation, brachytherapy, watchful waiting) reviewing the case notes and offering clearly explained options to patients?

  • The public needs to be kept up to date – in layman’s terms – with diagnostic and treatment developments. This is not happening at present. The Ministry and its satellite committees do not have readily available, up-to-date information on the web to help men with newly diagnosed prostate cancer become fully informed before making one of the biggest decisions of their lives.

As wealthy male baby boomers hit the danger zone, enormous amounts of US, European and Asian money are going into researching and developing new drugs, methods of surgery and radiation, diagnostic tools and a bewildering range of related methdologies.

That’s the point – it’s bewildering to the average Kiwi, who must hope his medics are keeping up to date and that the government is adequately funding new treatments.

For example, there is Provenge, a new $100,000+ drug regime that will extend life for a few months, and which is now selling big in the US. When will we see it here?

Communicating the relevance of the overseas prostate industry boom to Kiwis cannot be left solely to the news media here: that’s worse than leaving it to chance and the public relations industry.

Few, if any, journalists in NZ take an abiding interest in prostate cancer (why would they – it’s one of many diseases), and what they do write is sometimes ill-informed, incomplete, inaccurate and out of date.

Finally, the Health Select Committee would be wise to keep its files open on this inquiry. It would be a mistake to shut the doors on a tsunami of prostate cancer information that emerges daily on the web.

Developments are moving so quickly, the committee should require the Ministry of Health to report regularly about what’s happening. The inquiry report, when it finally emerges, should be an interim one that can be updated over time.

The committee is wrestling with questions that are far from settled.

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NEW PROSTATE CANCER INFOLINK:  Men with low-risk prostate cancer who choose surgery need to realise the possible after-effects – reduced urinary and erectile function, shorter penis, penis distortion – they might have to live with for up to 35 years afterwards. READ MORE>

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URO TODAY: Robot-assisted laparoscopic radical prostatectomy for prostate cancer is a safe alternative to classical surgery and the robotic approach is reliable, according to a four-year US study. READ MORE>

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BUSINESSWIRE: With a recent first-of-its-kind surgery, physicians at Mayo Clinic in Arizona have developed a new surgical procedure for the treatment of prostate cancer using natural orifices – signalling the next step in the evolution of minimally invasive surgery. READ MORE>

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URO TODAY: Recent changes in male sling surgery may improve efficacy in men with more severe incontinence. READ MORE>

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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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URO TODAY: You’re a “low risk” prostate cancer patient – what treatment do you choose?

A panel of three doctors – expert in active surveillance, surgery and radio therapy – look at a 62-year-old with Gleason 6, 2/12 positive biopsy samples, small volume, PSA 0.09 and good sexual function. READ MORE>

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URO TODAY: The rate of increase in PSA level prior to prostate cancer surgery is an indicator of your long-term survival, research shows. READ MORE>

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PROSTABLOG NZ: Sooo…another nil PSA test, 60 weeks after the prostatectomy.

So far, so good.

I guess the next hurdle is two years out (from the surgery on March 25, 2009), when – according to the reading I’ve done – if the prostate cancer is going to flare up again, that’s when the first sign is likely to show in rising PSA.

Here’s my PSA readings over the past couple of years:

  • August 30, 2007: 0.9
  • November 28, 2008: 0.7 – this was when a digital exam first discovered cancer.

MARCH 25, 2009: Radical prostatectomy

  • August 6, 2009: <0.05
  • January 29, 2010: <0.05
  • May 21, 2010: <0.05

Note the PSA was never very high, which reinforces the message I give to anyone who’ll listen – get both the PSA and the digital exam, because some of us don’t show on PSA.

I’m hoping that no longer applies, of course. If I have recurrence, I want something to show up.

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