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URO TODAY: There’s strong evidence pomegranate juice helps reduce erectile dysfunction, according to research at Boston University School of Medicine. READ MORE>

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URO TODAY: Use of a carbon dioxide laser to assist in robot-assisted radical prostatectomy improves nerve sparing and reduces damage that can cause impotency. 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: Low density shock wave therapy may prove an effective way to treat erectile dysfunction in men who have had prostate cancer treatment, Israeli scientists report. READ MORE>

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NEW PROSTATE CANCER INFOLINK: The American College of Physicians has just issued new guidelines that strongly endorse use of sildenafil (Viagra) and similar drugs for the treatment of erectile dysfunction. READ MORE>

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BUZZ MACHINE: Incontinence and impotence are two frightening words for a grown man, but they are the side-effects of removing the prostate and its cancer with it, writes US media blogger Jeff Jarvis in a blog he calls the “penis post”. READ MORE>

Worth the price, or at least that’s the calculation one makes beforehand: Cancer or erections? Cancer or dry underwear? Cancer loses.

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URO TODAY: Forty percent of about 400 men treated with brachytherapy developed urinary obstructive symptoms, generally within the first three to six months, according to a study  of about 400 prostate cancer patients. READ MORE>

These symptoms resolved in a large proportion of men. Impaired potency occurred in 15% of men by six months and in more than 40% of men by 60 months. Bowel symptoms were less common and had a slower onset.

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JULY 9: NEW YORK TIMES: “My body, that once-sturdy vessel, sustained a lot of damage in the past year to be rid of its cancer,” writes NYT editor and prostate cancer patient Dana Jennings. “Incontinence and impotence, deep fatigue and weight gain were among my most constant physical companions.” READ MORE>

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PROSTATE INQUIRY: What’s caused NZ government to revisit prostate screening issue?

JUNE 21: PROSTABLOG NZ: While the hopes of those pushing for prostate cancer screening were buoyed by last week’s NZ Government announcement of a select committee inquiry, the chances anything will change are uncertain.

Politicians, even those with medical backgrounds, must rely heavily on the advice of experts when it comes to health policymaking, and any signs the experts are about to change their views on this complex issue are not encouraging.

Medical people with an interest in prostate cancer have been waiting for most of this century to hear the results of a couple of massive, long-term, random studies on PSA testing and screening, which were expected to prove one way or another whether population-based screening is the right thing to do.

Mention of the trials, in the US and Europe, peppers the research papers of medical academics, especially those most opposed to screening all men, the epidemiologists.

The trial results are now in (published in the New England Journalism of Medicine in March) and those looking for irrefutable evidence either way will have been disappointed. The Australian Prostate Cancer Foundation went so far as to say the trials were flawed and the results suspect.

NZ’s Ministry of Health has been keeping an eye on all this, it says, and one of its committees met last month to discuss these and other recent findings.

The MOH promised a statement after this process, but has kept quiet, and instead the prostate community on June 18 got news of the new parliamentary inquiry.

The announcement, incidentally, came more than a month after the Health Select Committee actually made its inquiry decision, which on Parliament’s official website is dated May 27.Select committee

So what’s happened?

It seems a confluence of the following has produced the right conditions for something to happen, a perfect storm:

•    a new government, Minister of Health, and Health Select Committee;
•    a five-year gap back to the last official review of NZ’s prostate screening policy;
•    the release of the randomised studies’ results;
•    and with that, an upsurge in world-wide debate;
•    the Prostate Cancer Foundation of NZ’s quiet and consistent lobbying in favour of some sort of screening;
•    continuing horrific statistics for Maori men, who die of prostate cancer at twice the rate of non-Maori;
•    and high current interest in prostate cancer from researchers and drug companies, especially in the US.

The political aspect of this development is the most under-reported (NZ media coverage of prostate cancer tends to be sporadic and superficial) and therefore potentially the most interesting.

The Health Select Committee last examined prostate screening in 2006.

The then-committee – comprising MPs Sue Kedgley (chairperson), Maryan Street (deputy chairperson), Dr Jackie Blue, Dr Jonathan Coleman, Jo Goodhew, Ann Hartley, Sue Moroney, Hon Tony Ryall (now Minister of Health), Lesley Soper, Barbara Stewart and Tariana Turia – considered a 2005 petition from ACT MP Muriel Newman (signed by 585 others) calling for a change in screening policy.

After hearing Ministry of Health advice, the committee rejected Newman’s call for population-based screening, but recommended the government develop up-to-date guidelines to assist GPs and their patients make decisions about testing and treatment. The MOH produced these in 2007.

In its report, the committee also said:  “We recommend that the Government evaluate the evidence of the two trials that are presently being conducted into whether screening can reduce the incidence of death from prostate cancer, and re-assess its policies as soon as they are completed.”

In opposition over the past decade, National MPs and one of their natural allies, ACT, have been vociferous in questioning what they saw as lack of action by the Labour-led government.

Many of these parliamentarians – Muriel Newman and NZ First list MP Barbara Stewart notable among them – are now out of Parliament, but two remain who have voiced their concerns in Parliament about prostate cancer.

One is chairman of the new Health Select Committee, former clinician Dr Paul Hutchison, who featured in the House on September 14, 2004, when he pushed then Labour Minister of Health Annette King to concede the Government wasn’t doing enough about prostate cancer.

She conceded nothing, and stuck with her MOH advice.

Here’s how Hansard recorded the exchange:

September 14, 2004: Dr Paul Hutchison to the Minister of Health: Does the Ministry of Health have a view on the value of initiating a ‘prostate awareness’ campaign; if not why not?

Hon Annette King (Minister of Health): Yes. The Ministry supports the views of the National Health Committee which does not recommend prostate screening for asymptomatic men because of its lack of proven benefit and the potential for harm arising from unnecessary radiotherapy, surgery or other treatment at this stage, but we will continue to monitor international trends and research.

The committee has, however, published information regarding issues men need to consider when seeking prostate screening tests in the brochure Checking for Prostate Cancer, Information for men and their families. This brochure is available on the New Zealand Guidelines Group’s website: http://www.nzgg.org.nz.

Hutchison: Is she satisfied that the April 2004 report of the National Health Committee relating to prostate cancer screening provided up to date and best practice advice; if not why not?

King: Yes.

Hutchison: What specific public health programmes are available to alert men to health problems such as prostate cancer; if there are none, why not?

King: There are no specific health programmes to alert men to prostate cancer because routinely checking men without symptoms of prostate cancer is not recommended. However, I refer the member to written question No 13279 regarding the National Health Committee and New Zealand Guidelines Group’s brochure on this issue. For initiatives in other health programmes, I refer the member to written question No 13269 (2004).

Hutchison: What advice does the Health Ministry recommend to men, specifically to help prevent and achieve early detection of prostate cancer, and if not why not?

King: The Ministry of Health endorses the guidance produced by the National Health Committee, which states that men who have concerns should see their GP. These guidelines are available on the National Health Committee website (http://www.nhc.govt.nz/publications.html).

The second is National list MP Dr Blue (another former clinician), who questioned the government in 2006 and 2007.

Here’s how she is recorded in Hansard:

October 16, 2006: Dr Jackie Blue to the Minister of Health: Has any preliminary work been done by the Ministry of Health on the costing and logistics of a prostate cancer screening programme; if so what are the results of any preliminary work?

Hon Pete Hodgson (Minister of Health) replied: In April 2004 the National Health Committee (NHC) published its report to the Minister of Health on prostate screening in New Zealand. The report did not recommend population based screening for prostate cancer. No further work has been done by the Ministry of Health on the costing and logistics of an organised population based screening programme.

Blue: When did PSA or prostate specific antigen testing become available in New Zealand?

Hodgson: The Ministry of Health is not aware of the exact date the PSA test became available in New Zealand. However, statistics in the publication Cancer Trends and Projections indicate that the PSA test was being more widely used from the 1990s onwards.

Blue: How does New Zealand’s current prostate cancer screening guidelines compare to Australia, United Kingdom, United States, Canada and European countries?

Hodgson: New Zealand’s current policy on prostate cancer screening is the same as Australia, United Kingdom, United States, Canada and European countries, and aligns with the recommendations of the World Health Organization.

Blue: Have the interim results of the prostate cancer screening trials involving hundreds of thousands of men in Europe and the United States been made available to the Ministry of Health; if so, what are the preliminary results; if they are not available, when are they expected to be available?

Hodgson: The Ministry of Health is aware of two large randomised trials occurring in Europe and the United States. The first interim results of these studies are expected by the end of this year.

Blue: What resources does the Ministry of Health provide to general practitioners regarding prostate cancer screening; when were they last updated?

Hodgson: The Ministry of Health has published a pamphlet Screening for Prostate Cancer for health care practitioners, which is currently being updated. The pamphlet was produced by the New Zealand Guidelines Group in 2004 and is available on the Group’s website (www.nzgg.org.nz).

Blue: What are the current guidelines for prostate cancer screening; when were these last updated?

Hodgson: There are no New Zealand guidelines for prostate cancer.

February 27, 2007: Dr Jackie Blue: Can the Minister guarantee that updated breast cancer surgical guidelines will be forthcoming, or will it be like the long-awaited update of the prostate cancer guidelines on the Ministry of Health website, which were promised 16 months ago but still nothing has happened?

Hon PETE HODGSON: The guidelines are under development now.

How do others on the eight-member committee stand?

One, Green Party list MP Kevin Hague, has declared his opposition to the inquiry even before it’s begun. The deputy-chair, Ruth Dyson, has on occasion been a defender of Labour’s “no-screening” policy over the past three terms.

The views of the other four might become apparent in a thorough search of Hansard, but are not prominent.

What are those in favour of screening up against as they prepare their submissions for the committee’s hearings, whose terms of reference will be announced this coming Wednesday (June 23)?

One of the strongest opponents is Ann K Richardson, Associate Professor, Department of Public Health and General Practice, Christchurch School of Medicine and Health Sciences, University of Otago, whose 2005 paper for the NZ Medical Journal said the following:

“The results from autopsy studies and the Finasteride trial are a warning.

“If healthy men have PSA tests, some will be diagnosed with prostate cancer that they would otherwise never have known about, and that would never have threatened their lives. This would be bad enough, but many men who are diagnosed with prostate cancer are offered treatment such as radiotherapy or surgery, and these treatments have significant side effects. The potential side effects include impotence, incontinence, diarrhoea, and death.

“Some of the men who suffer these side effects would never have known they had prostate cancer in the absence of screening, so they will have been directly harmed as a consequence of being screened.

“Although it is possible to understand and perhaps explain opposing views on prostate cancer screening, examining the risks and benefits shows that prostate cancer screening is not justified at present.

“Whether there is any benefit from prostate cancer screening is unknown. It is inappropriate to support screening in the hope that it will be found to be beneficial, since this would be gambling with men’s health.

“Prostate cancer screening fails to meet criteria for screening, and carries potentially serious risks. In the absence of conclusive evidence of benefit, it is entirely possible that prostate cancer screening could cause more harm than good. Therefore, at present, it is unethical to offer prostate cancer screening.

“In the future, screening should only be offered if the randomised controlled trials of prostate screening that are currently underway, demonstrate a benefit.”

The debate about prostate cancer screening has been quiet for a while.

One of it’s most memorable moments came on April Fool’s Day, 2004, when a Ministry of Health-hosted body called the National Health Committee made the following announcement: ‘No, not yet, to prostate cancer screening.’

The question remains: will those who didn’t get the joke then have any reason to laugh sometime later this year when the latest examination of this controversy that won’t go away reports back?

Making submissions to select committee: http://www.parliament.nz/en-NZ/PB/SC/MakeSub/

Email committee chair: paul.hutchison@parliament.govt.nz

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