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PROSTABLOG NZ: Exact meaning of the word “encourage” will be pivotal  in the continuing New Zealand saga on how best to prevent prostate cancer.

“We will be encouraging men to go to their GPs to discuss optionsincluding whether or not they should have a PSA test,” says the chairman of Parliament’s inquiry into prostate cancer, Paul Hutchison, in today’s Dominion Post newspaper (see below).

In the same story, his statement is welcomed by Prostate Cancer Foundation of NZ president Mark von Dadelszen: “…we would certainly applaud that move.”

What they both mean by the term “encourage” is about to become the focus of a debate that has churned around in global prostate cancer politics since PSA testing became commonly available in the early 1990s.

First question: how does “encouraging” men to be tested differ from a national screening programme (which Hutchison signals will be rejected in the inquiry report due in a matter of weeks)?

A national screening programme presumably involves the Ministry of Health spending millions promoting tests to the general populace, as it does with breast and cervical cancers.

Such programmes “encourage” people to get along to their doctor and have the tests.

How will men be encouraged? Not with a lot of advertising, it seems.

So how, exactly?

By training barbers to spread the word to their clients, as has been tried in the US?

By sending doctors into communities to talk about risks and options, as the Foundation did last year when it flew a team to the Chathams?

By leaving it to the Foundation to publicise the disease and urge men to act, as happens now?

Whatever approach the Health Select Committee is about to recommend, it needs to deal with a mammoth in the waiting rooms – the Ministry of Health instruction to GPs that they must not raise the topic of PSA and rectal examination until the patient does or unless they spot symptoms obviously related to what is often a symptomless disease.

This is the real crux of the dilemma the Select Committee has presumably been wrangling with since its first public hearings in September, 2009.

What instruction will it recommend the Government give to the Ministry, whose staff and advisers  adamantly oppose any widening of the availability of PSA testing?

Up to now, men have been the subject of a mild but just as deadly form of Russian roulette when it comes to being diagnosed.

Take my own case.

Over the past 30 years, I’ve been under the care of four GPs. The first never mentioned prostate cancer (to be fair, I was under 50); the second (mid 1990s) refused to consider PSA tests because to him they were unproven; the third insisted on it without my bidding; and my current one responded readily to my request for tests (saying Ministry instructions forbade him raising the matter unless I spoke up first!).

Anecdotal evidence suggests the Ministry’s obfuscation is becoming increasingly irrelevant – for some people, anyway.

The Foundation’s awareness campaigns have been effective, if I judge by the number of male acquaintances now being diagnosed early and successfully treated.

However, I suspect there are dangerous class factors at play here.

Me and my mates are okay because we have been blessed by education, higher socio-economic status, media awareness and access to health provision.

I fear for those who don’t. The Ministry’s stubbornness condemns them to an uncertain fate.

National prostate screening rejected

Dominion Post April 2, 2011

A PARLIAMENTARY inquiry into prostate cancer screening will not be recommending a national screening programme despite pressure from cancer survivors to do so.

The Prostate Cancer Foundation has backed the committee’s approach, but a former patient says the decision is disappointing.

Health select committee chairman Paul Hutchison said the inquiry, which has been running since May 2009, was not due to report back for another few weeks, but when it did, it would not advocate screening.

There was still controversy over whether blood tests for prostate-specific antigens led to fewer prostate cancer deaths, he said.

Heightened levels of prostate specific antigen – PSA – can indicate the presence of prostate cancer. However, early detection can result in aggressive and unpleasant treatment of tumours that would never have grown or created ill-health.

The inquiry has heard from a huge number of prostate cancer survivors, many of whom asked for a screening programme for all men aged 50 and older.

Dr Hutchison could not go into detail about the committee’s findings but said there were two main conclusions.

‘‘We will not be recommending a PSA screening programme. However, we will be encouraging men to go to their GPs to discuss options … including whether or not they should have a PSA test.

‘‘Those are the two points that are loud and clear.’’

Prostate Cancer Foundation president Mark von Dadelszen said the organisation did not support a national screening programme because of ‘‘issues’’ with the PSA test.

‘What it does advocate is that men should be encouraged to have screening tests . . . we would certainly applaud that move.’’

Napier farmer Duncan McLean, who has just got the all-clear five years after being diagnosed with prostate cancer, said encouragement was good but the committee should recommend a full screening programme.

Mr McLean, 57, had his prostate gland removed in 2006 after several years of increasingly high PSA readings, followed by a biopsy that confirmed the cancer.

‘‘PSA testing is essential. I’m alive today because of it. It’s really disappointing they’re not [recommending screening].’’

Fears about over-treatment were ‘‘bollocks’’, he said. ‘‘You don’t leap in and go under the surgeon’s knife – I was monitored for three years before I had surgery.’’

International research on the matter is split, with several largescale studies under way.

The results of a 20-year Swedish study, published yesterday in the British Medical Journal, found screening did not significantly reduce prostate cancer deaths but the risk of overdetection and unnecessary treatment was considerable.

However, another Swedish study found death from prostate cancer more than halved among men who were screened.

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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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PROSTABLOG NZ: It’s almost a year since the first hearings were held by the NZ Parliament’s Health Select Committee inquiry into the early detection and treatment of prostate cancer.

The obvious question now is when will it report back.

Since it published its terms of reference in August last year, the committee has received 33 submissions, four of them from the influential health lobby group, the NZ Guidelines Group, whose last submission was made in December.

This document made it clear that the group – an independent incorporated society originally set up by the government in 1996 – is opposed to population-based PSA screening.

To save one life, up to 41 men could incur significant harm.

It bases this view on its assessment of numerous NZ and international studies, including two large randomised trials (one European, the other American) that were reported last year.

Here are some of the last pages of the group’s December, 2009, submission (RCT = random controlled trial):

This also appears to be the main thrust of submissions on PSA testing from other health authorities (although the Guidelines Group is at pains to stress it is independent from the Ministry of Health).

Another “official” organisation, the National Health Committee, said in its submission (August 26, 2009) that it has seen nothing to change its 2005 advice to the MOH that population-based PSA screening is not an acceptable option.

However, it did favour targeted screening of high-risk groups, such as men with a family history of prostate cancer.

The NHC is aware that since providing its advice in 2005, clinical practice has found
that targeted screening for men at high risk of prostate cancer appears to be useful
and potentially cost effective. These are men who have a family history of prostate
or related cancers.

The Royal NZ College of General Practitioners – presumably speaking on behalf of doctors on the frontline – said in its submission it would go along with the NZ Guidelines Group’s views.

It did make a couple of pleas, however, calling for up-to-date information to hand out to patients, and for treatment to be available to all:

It is important that inequities in access relating to follow up after positive
screening results, and for symptomatic men, are identified and eliminated.

The Cancer Society agreed with the Guidelines Group, and backed this up by quoting from selected organisations in other Western countries.

Most agencies around the world have some form of recommendation that decisions for screening for prostate cancer should be made on an individual basis and in consultation with a medical professional:

The Australian Cancer Council states that:
“In the absence of direct evidence showing a clear benefit of population based screening for prostate cancer, a patient centred approach for individual decisions about testing is recommended. Screening discussions and decisions should always include and take into account, age and other individual risk
factors such as a family history of the disease” (Cancer Council Au 2005).

The American Cancer Society states that:
“The American Cancer Society (ACS) does not recommend routine testing for prostate cancer at this time. ACS believes that doctors should discuss the pros and cons of testing with men so each man can decide if testing is right for him. If a man chooses to be tested, the tests should include a PSA blood test and
DRE (digital rectal exam) yearly, beginning at age 50, for men at average risk who can be expected to live at least 10 more years.” (American Cancer Society 2009).

The UK Cancer Research Council states:
“in the UK, there is no national screening programme for prostate cancer because trials have not yet shown clear evidence that screening will reduce deaths from this disease. Also, many men diagnosed with
prostate cancer have very slowly growing cancers that will never cause any symptoms or problems in their lifetime. So at the moment there is no clear benefit in diagnosing prostate cancer early and it may actually cause harm for some men.”(Cancer Research UK 2009).

Urological Society of Australia and New Zealand states:
“Individual men aged 50 to 70 years with at least a 10 year life expectancy should be able to be screened by annual DRE and PSA testing, after appropriate counselling regarding the potential risks and benefits of investigations and the controversies of treatment.”(Urological Society ANZ 1999).

The majority of submissions – from prominent medical practitioners, prostate cancer lobby groups and patients – urged the committee to recommend PSA testing, if not on a population (all men) screening basis, then at least as a service offered routinely by GPs, without men having to ask (the current MOH policy).

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Don't be shy, doc - digitally examine me.

PROSTABLOG:  This is a joke, right – a NZ contest will be launched this week to rate men’s bum cracks as part of this year’s Blue September prostate cancer awareness campaign?

Am I being prudish, or will this seriously help persuade a man to go to his GP and ask for a prostate cancer checkup…that will involve the doctor performing a digital exam?

Digital exam – polite language for sticking a finger up your “bum crack” to feel the prostate for signs of cancer.

Isn’t convincing men the digital exam is no threat to their masculinity one of the big problems of prostate awareness?

Are we so far along the path of overcoming macho resistance (read homophobia) that we can joke about this in a serious awareness campaign?

Doubt it.

A story in today’s Sunday Star-Times newspaper announcing the bum crack contest said:

THEY CAN be seen on building sites throughout the country, are the bane of women’s lives and probably the delight of men’s – yes, the humble builder’s crack is again demanding attention.

A cheeky Auckland advertising agency has come up with a novel campaign called Rate My Crack in order to raise awareness for Blue September – the major awareness campaign of the Prostate Cancer Foundation of New Zealand.

The online campaign asks builders, both male and female, to take photos of their workmate’s rear end as it spills out of their jeans and send it in to be judged by the online community.

The owner of the winning ‘‘bum cleavage’’ will receive $1000 to spend at a Placemakers store.

Leighton Dyer, of Rascal advertising agency, said the company was looking for a light-hearted way to raise the profile of a serious disease.

He was not concerned the campaign would offend any sensitive souls – and he expected more than 90% of the entries to be from men.

Website http://www.ratemycrack.co.nz will go live on Tuesday.

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PROSTABLOG NZ:  This hardly helps those of us who support the need for widespread prostate cancer screening, but deeper analysis of the European randomised study of PSA testing says such screening is dangerously counter-productive.

Dangerous in the sense that – as the epidemiologists (trends counters) have long claimed – too many men with harmless prostate cancer are being treated aggressively, and needlessly.

The new analysis comes form a bunch of Dutch scientists, who conclude that population-based (that is everyone) screening using the PSA test, while undoubtedly saving some lives, cannot be justified because of the potential over-treatment harm that may be done to 60%-plus of men diagnosed with the cancer.

Mike Scott at the New Prostate Cancer Infolink reaches the same conclusion, and says we need to rethink the whole approach to prostate cancer diagnosis. READ MORE>

More than ever, we must find a way to separate those with life-threatening versions of prostate cancer from those whose disease will not kill them.

It seems, in a way, that we are no further ahead than prior to the days of the PSA test’s introduction in the 90s.

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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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PROSTABLOG NZ: The BBC people who wrote this headline obviously know nothing about prostate cancer:

US senators call for Lockerbie bomber release probe

Four US senators are calling on Britain to investigate the circumstances surrounding the release of the man convicted of the Lockerbie bombing. READ MORE>

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