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Posts Tagged ‘Prostate cancer patients’

MEDICAL NEWS TODAY:  Radiation therapy alone can reduce prostate specific antigen (PSA) levels below detectable amounts in prostate cancer patients, the annual meeting of the American Society for Radiation Oncology has heard. READ MORE>

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URO TODAY: Medical professionals should pay more attention to the emotional burden felt by prostate cancer patients, because their stress and strains during the time before treatment have a rather more emotional than physical character. READ MORE>

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PROSTABLOG NZ: The battle lines were drawn at yesterday’s first hearing of the  NZ Parliamentary inquiry into prostate cancer – “vested interests” versus those who guard the country’s public medical system.

The former group, apparently, comprises prostate cancer patients and some medical professionals who operate in the field of prostate cancer; the latter, the NZ Guidelines Group, a committee from the medical fraternity and bureaucracy on whom the Ministry of Health relies for expert advice on health policy.

According to the Guidelines Group, the vested interests (a term they used at today’s hearing before the Health Select Committee) must be excluded from the process of deciding how or whether prostate cancer testing should be funded and implemented.

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PROSTATE INQUIRY: Barry Young gives his submission.

This proposition alarmed some members of the select committee, who asked if the reference to “vested interests” referred to drug companies or other commercial interests who might benefit from prostate screening and testing.

The Guidelines Group – represented by chair Professor Cindy Farquhar, chief executive Steve Caldwell and a Nelson GP, Dr Jim Vause – seemed reluctant to spell out exactly what they meant, but when pressed conceded it was, in part, people who suffer from the disease being discussed.

It was a crucial moment at yesterday’s hearing, a three-hour session during which the committee of MPs heard evidence from mostly those in the “vested interests” corner – prostate survivors and their medical advocates.

It threw into sharp relief the attitude of those whose opposition to screening and testing have influenced the government’s position on prostate cancer for more than a decade, a decade during which medical science has moved rapidly to outflank some of their views.

The battleground was forcefully defined from the start of the hearings, when Prostate Cancer Foundation president Barry Young (see video) gave a passionate outline of what he termed the unnecessary loss of men’s lives because of confused communications between the Ministry of Health, GPs and patients.

He and Professor Brett Delahunt – an eminent Wellington pathologist who specialises in urology – claimed earlier attempts (in 2004) by the NZ Guidelines Group to produce policy on prostate cancer testing were a fiasco, which dishonestly misrepresented the outcome as the consensual work of the specialists involved (who included Delahunt).

The MPs were taken aback by these claims and will provide the Guidelines Group with a recording of what Young and Delahunt said so the group can respond (interestingly, the Guidelines people were last up today, so they didn’t attend the earlier submissions to hear what was said).

InquiryDay1 2

Health Select Committee chair Paul Hutchison (right) guides the hearing.

All the submissions yesterday were effective.

Three prostate survivors – one a former medic with the NZ army in Vietnam – gave different perspectives on their experiences, and were questioned closely by the MPs on what they think the committee can do to meet the challenges.

The most affecting presentation came from Kim Cook (Mary on this blogsite), whose story about partner Brian’s saga with advanced prostate cancer deeply affected those listening to her by teleconference.

RoyVeteran MP Eric Roy (right) could be seen wiping tears from his eyes, and most in the room were not far removed from such a show of emotion.

Kim’s efforts to empower herself in the face of a seemingly implacable medical profession were accorded great respect by the committee.

As second man up, Barry Young told the committee that “some members of the medical profession have not distinguished themselves at all” in the way they have dealt with prostate cancer.

“The attitude of some members has indeed led to the death of men in this country,” he said. These were men who had been refused the option of PSA tests or rectal exams or both.

When men came to the foundation in desperation in such circumstances, the foundation’s advice was for them to find another GP.

“We need an education programme not only for the public but for the medical profession as well.”

He was critical of the process used by the Ministry of Health to formulate its policies on prostate cancer screening.

He described an earlier instance when he and prominent prostate specialists were invited on to a Ministry-funded committee to investigate research and best practice.

When it was completed, the committee was disbanded and to his alarm the Ministry’s advisors declined to have the resulting policy peer-reviewed.

“None of us recognised a single paragraph of the policy report that was produced. I can understand why GPs are confused.”

Later, he was asked by Eric Roy why some GPs were not offering screening.

“I think it’s because they are confused. Even the information given to urologists is less than clear. We need to remove the ambiguity – from the medical profession, from the Ministry of Health.”

BrettDelahuntBrett Delahunt (left) was even more condemnatory of the Ministry’s policy advice process, describing the last instance by the NZ Guidelines Group in 2004 as a “fiasco”.

He was invited onto that review committee late in the procedure and went to its last two meetings.

He felt his views and those of other specialists involved were largely ignored.

“The recommendations of the Guidelines Group [for GPs not to recommend PSA testing to asymptomatic male patients] were not a consensus. They were inflicted on the committee after the meetings.”

The problem with such a policy was that in most cases, by the time men showed symptoms, the cancer had spread and metastasised, which meant it was too late to treat them: “If you wait for symptoms to occur you’ve left it too long.”

The PSA (prostate-specific antigen) was the most sensitive of all cancer markers. The false negative rate was “quite low” if the procedures were properly handled.

What the clinician should look for is change in the level of PSA. If the level began to double in less than a year, the approach should be aggressive.

He believes it is now possible to tell the difference between indolent and aggressive tumours.

He described the confusion initially caused when researchers used data including the early use of the Gleason score (for cancer aggression) which once included grades 1 and 2.

It has since been found that samples showing such low scores were not cancers at all (so the Gleason scale no longer includes them), but treatment and mortality data used to compare trends had been muddied as a result.

He said other governments (Canada, US and some in Europe) show a much more positive approach than New Zealand’s to screening and to making men aware of the dangers of slow-growing prostate cancer.

Evidence of the success of opportunistic screening (as opposed to population-based) was now overwhelming.

Hutchison2Chair Paul Hutchison (right) asked for elaboration about Delahunt’s Guidelines Group comments, saying he was under the impression the group was independent and very anxious to take an evidence-based approach.

Delahunt: “That’s fair – but the evidence base was out of date.” He also said he became a member only through accident, after a colleague in Australia mentioned to him the process was under way and asked why he was not part of it.

He said when the group’s guidelines were published his name was listed on the document, something he objected to, since he disagreed with its negative tenor: “There was an element of dishonesty in the Guidelines Group thanking us for the work done.”

DysonChallenged by MP Ruth Dyson (left) on what she perceived to be an allegation the medical profession was deliberately not doing its best, Delahunt said he did not believe anyone went out of their way to deter men from being diagnosed.

His assertion was that some men with the potential to have the diagnosis and cure were missing out.

Asked by Green MP Kevin Hague who should make the decision about a screening programme, Delahunt said he was not proposing a national population-based programme. The need was to encourage opportunistic screening.

“This committee should tell the medical profession there is a need for more clearcut guidelines.”

Hutchison asked who would be in a position to achieve that.

Delahunt: “A balanced group could be appointed.”

Later, he added that some men were not getting a fair deal. Roughly the same number of men died from prostate cancer as women from breast cancer.

The Guidelines Group trio was last to speak (rather mysteriously “welcomed back” by the committee), with GP Jim Vause leading the committee through a series of PowerPoint slides.

These included simplified graphics illustrating what he perceived to be the main thrust of results from the two randomised studies: ie. that many men (more than 1400) need to be screened for prostate cancer before a single life is saved.

He did not mention that many more women (thousands) need to be screened for breast and cervical cancer before their single lives are saved.

Hutchison pointed out that there were known problems with the two trials. Vause said he would get to that later, but didn’t.

He showed that the NZ prostate cancer death rate has been stable since 1961, but that since the early to mid-1990s, the number of diagnoses has risen steeply.

He put that down largely to the prostate awareness programme (but Bret Delahunt would give a big share of the credit to the introduction of the PSA test in 1993).

He was at pains to warn of the risks of treatment – especially death.

A key slide shown to the committee said: “[There is a] need for presenting information free of bias from vested interests in an (sic) manner that a man can understand.”

He said he believed the key point in all this is informed consent.

Cindy.Guidelines Group chair and surgeon Cindy Farquhar (right) said it was vital to have reliable evidence when introducing a new strategy.

This involved trade-offs between:

  • benefits of intervention (in this case a screening programme to detect early prostate cancer);
  • risk of the intervention (harms from the additional biopsies, downstream treatments);
  • cost of intervention;
  • patient preferences.

She mentioned the downside of “just doing it”, listing three examples from the past when such an approach proved  disastrous.

Her last slide elaborated the Guideline Group’s processes:

  • systematic approach;
  • researchers with expertise in clinical studies, critical appraisal, combining studies, developing recommendations, grading evidence;
  • developing guidelines – how to apply the international evidence to the NZ health sector.

The main message from her group was that its review of the two overseas studies (reported in the New England Journal of Medicine last March) was still going on and would not report until November.

Hutchison asked for an assurance that would be done on time, got it, and said the committee would look forward to hearing from the group once that had happened.

The MPs were impressive during yesterday’s hearing.

It was obvious they had done their reading. Their questions showed they have a sound grasp of the issues they must somehow try to resolve.

In the end, it came down to a couple of straight-forward questions:

  • How can the confusion that seems to abound between patients and doctors over prostate cancer be resolved?
  • What can be done to break through Kiwi males’ “I can tough it out” attitude to getting themselves checked out?

The committee made it clear that sorting out the vast morass of conflicting data about prostate cancer detection and treatment is not its job – it will probably recommend this be done by a truly independent group representing all stakeholders, “vested interests” and all.

The only thing everyone seems agreed on at this stage is that population-based mass screening of all men for prostate cancer is not a starter.

But neither is the status quo acceptable. Leaving men without symptoms out of the equation (the medical bureaucracy’s current stance) won’t do.

FOOTNOTE: Committee chair Dr Paul Hutchison said after the hearings that he would write to Barry Young and ask him to provide details to the Health and Disability Commissioner of any cases the foundation knows about of men being refused PSA tests by their GPs.

NEWS COVERAGE of the hearing

NZPA : Hundreds of men are unnecessarily dying of prostate cancer every year because doctors refuse to test them, a parliamentary select committee has been told.  READ MORE>

TVNZ: New Zealand specialists say men as young as 40 should have regular prostate checks, because they believe waiting until 50 is just too risky. READ MORE>

RADIO NZ: Parliament’s health select committee has distanced itself from accusations some doctors are responsible for the deaths of hundreds of men from prostate cancer. READ MORE>

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TonyMAINPROSTABLOG NZ: The NZ parliamentary inquiry into prostate cancer closes off its submissions this Friday…and to mark the occasion, I want to write about a man called Tony.

He’s a mid-50s Kiwi bloke. Friendly, articulate, life-experienced, a bit more adventurous, perhaps, than some.

He and wife Marlene (at right) run an excellent bed and breakfast in Mt Eden, Auckland, under the shadow, almost, of where $300 million of my money is being spent revamping Eden Park for the rugby world cup in 2011.

Tony drove trucks across America for a while, until the mid-2000s. Marlene missed him, so joined up, taking the wheel during daylight. They had a fantastic time.

TonyMAIN2But now they’re back home, with Tony working three jobs as they build up the B & B (left) during the recession.

He runs a disability transport service with his vans, walks people around central Auckland city at night telling them ghost and murder stories, and helps Marlene with the homestay.

By all odds, Tony has a 50% chance of hosting a cancer in his prostate.

He doesn’t know it yet, either way. He hasn’t been checked. He’s been too bloody busy.

But now he’s going to the doc and he’ll endure the finger up his backside and the scratch in his arm.

Why? Because Lin and I stayed with Tony and Marlene last weeked and he got an earful from me about getting checked.

Why am I telling you this?  Because Tony is fairly typical of most of the Kiwi men I know (the ones who haven’t had prostate cancer). They either don’t get tested, get only the PSA, or were tested “once” and think it’ll be fine for a few years.

They are what the Health Select Committee inquiry into prostate cancer screening and testing is about.

Two bitterly opposed protagonists

Anyone who thought NZ’s recent prominent murder trials (Bain, Weatherston, et al) were problematic for their juries, spare a thought for the Health Select Committee.

Not only must it contend with the politics of health care, it also faces two ferociously opposed lobby groups that can each present a compelling case.

On one side will be the NZ prostate community, comprising prostate cancer patients, survivors, some of their medics (GPs, urologists, urology nurses, oncologists, etc), and a vociferous band of patient advocates, the 330-strong Prostate Cancer Foundation.

On the other is the health care bureaucracy, encompassing a heavyweight team of health professionals, managers, advisers, epidemiologists, academics, researchers and various subgroups that include some GPs…and the NZ Cancer Society.

Both will lobby the inquiry with statistics, research, study results, precedents, and on one side, at least, some emotionally gruelling anecdotal evidence.

What will each side say?

The bureaucrats (the Ministry of Health and its pilot fish advisory committees) will say what it has always said: we should not adopt a screening and testing programme like that offered to women for breast and cervical cancer because it will do more harm than good.

Their argument is strong, and is the same one argued by other governments’ medical agencies.

It is this: many men (maybe 50%) will get prostate cancer in their lifetime, but only a few (12% to 16%) will contract a form that has the potential to kill them – and there is, as yet, no way to know (before treatment) which kind a man has got.

They say if there is outright encouragement for all men to be tested, whether they have symptoms or not (most won’t, initially), it will lead to unnecessary treatment.

This would cost the government a lot more as well, some argue, but that’s not a point the bureaucracy will highlight, since it doesn’t sound very humane.

Meantime, leave it to patients to raise such matters with their GPs, then make their own decisions based on facts they glean from consultation and research (ie, Dr Google).

The bureaucrats will say there is good reason to trust GPs to do the right thing.

A survey of nearly 350 general practitioners published in 2003 (GP survey 2003) found 74% would PSA test a 55-year-old man who asked (or presented for an annual check-up), with that number rising to 93% if the man’s family history included prostate or breast cancer.

The prostate community argues that since PSA blood tests became widely available in the 80s there has been significant decline in the number of deaths from prostate cancer, and this could be accelerated if screening and testing were promoted to the whole male population.

They say leaving it up to men to raise prostate testing with their doctors is not good enough.

Some men don’t go to the doctor unless they have to, which is a particular problem with prostate cancer, a devious disease that often shows its face when it’s too late for treatment.

Non-consultation is a factor that may apply particularly to Maori and Pacific Island men: the former have twice the death rate of non-Maori. No statistics are available for PI men, it seems.

The prostate community is concerned that some GPs are confused about their role in the prostate process.

Some refuse to test, some don’t proffer advice unless the patient speaks up first, some offer PSA only, some offer both PSA and digital exam. Some men die as a direct result of such a hit-or-miss system, the PCF says.

The foundation and its medical advisers know many cases of men who discover prostate cancer too late.

These are tragic stories, exemplified by the account being written on this website by Mary about her struggle with the medical profession to get treatment for her husband, John. It’s a heart-breaking tale.

There is some bitterness in this debate.

The prostate community is seen as deeply swayed by the emotional influences of suffering the disease or benefiting from dispensing treatment; the bureaucracy is considered heartless, unduly influenced by statistics, gender-biased, and penny-pinching.

Both sides are gathering their forces as this is written.

The Ministry’s line, probably, is encapsulated in advice it received from its satellite National Screening Advisory Committee this winter, after the committee examined the results of the two large overseas screening studies reported in March.

It recommended the Director General of Health should note that:

a) the benefits of PSA screening for prostate cancer identified in the European trial were small;

b) no benefit of prostate cancer screening was identified in the US trial;

c) both trials identified considerable screening harms related to over-diagnosis and over-treatment;

d) the benefits of PSA screening identified in the European trial were observed using an average screening interval of four years, whereas a screening interval of one to two years is more commonly used in general practice;

e) the utility of prostate screening increases with age;

f) a longer study follow-up period may alter trial results; and

g) a watching brief of these two prostate cancer screening trials should be kept, including similar trials of prostate cancer treatment effectiveness, to inform men about making prostate screening decisions.

There is some inevitability, then, about how this inquiry will proceed.

The Ministry hasn’t changed its stance, and the PCF has grown all the more powerful since it gathered considerable funding from the Movember crusade in 2007.

Which suggests the outcome will be influenced by political expediency. As these things usually are.

It’s not a good time to be appealing to a government that’s busy slashing spending in all sectors.

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JULY 23: URO TODAY: Prostate cancer patients may not recall information given to them early after diagnosis and may make unreliable evaluations of its value to them due to their psychological state, an Australian study finds. READ MORE>

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