Resisting recommended treatment for prostate cancer: …possible overdiagnosis

Australian research on men who resist recommended treatment for prostate cancer is the first research of it’s kind. This could be timely information for me – but first some general information.

In New Zealand prostate cancer is the most common cancer in men (women don’t have a prostate).

Around the world screening tests for prostate cancer, as well as over diagnosis, are quite contentious.

Prostate Cancer Foundation of NZ:  Cancer of the Prostate

In New Zealand, prostate cancer is the most common cancer in men, around  3,000 registrations each year and about 600 deaths from prostate cancer each year (based on the statistics from the Ministry of Health 2007 – 2009 which show an average of 3082 registrations and 602 deaths).

Men who develop prostate cancer are mostly over the age of 65. It rarely occurs in men younger than 55. About one in 13 men will develop prostate cancer before the age of 75. In very elderly men, prostate cancer often grows very slowly and may cause no symptoms.

Prostate cancer can be very difficult to detect.

A cancer is often very hard to find when it is located only within the prostate. This is because it may not cause symptoms and may be too small for a doctor to feel during a routine rectal exam.

A man with slow growing prostate cancer may live for many years and die of other causes, without ever having symptoms of prostate cancer. If the cancer grows too much, however, the prostate usually squeezes the urethra, which it surrounds. Symptoms may then start, such as difficulty in passing urine. As the same symptoms can be caused by other problems, difficulty in passing urine does not always mean that prostate cancer is present.

I had a general health check three months ago, and included was a Digital Rectal Examination (DRE – not great to have but  really not that bad, and over quickly). This checks for an enlarged prostate and for lumps, both possible signs of cancer. Negative for me.

I also had a prostate-specific antigen (PSA) blood test. This is a fairly inaccurate way of trying to detect the possibility of cancer. It can be affected by a DRE (so should be done before a DRE but wasn’t in my case), and also can by be affected by riding a bike or sex. The level also increases with age. There are varying suggestions of what constitutes ‘normal’. Here is one:

The normal PSA value is usually stated to be less than 4.0. However, because of the fact that benign enlargement of the prostate gland tends to occur as men get older, an age-adjusted scale has been developed:

  • 0-2.5: Normal for a man 40-50 yrs.
  • 2.5-3.5: Normal for a man 50-60 yrs.
  • 3.5-4.5: Normal for a man 60-70 yrs.
  • 4.5-5.5: Normal for a man 70-80 yrs.

But here’s a major problem.

  • About 15% of men with a PSA below 4 will have prostate cancer on a biopsy.
  • Men with a PSA level between 4 and 10 have about a 1 in 4 chance of having prostate cancer.
  • If the PSA is more than 10, the chance of having prostate cancer is over 50%.

There isn’t a big difference between 15% (<4) and 25 % (4-10). That’s roll of dice odds. While 50% is a tougher toss of the coin it is still only 50/50.

My result was an elevated level. I had a follow up PSA two weeks later, which is a standard follow up if the first result is up, and that was slightly lower but still midway in the 4-10 range. So that warranted a referral to a specialist, which was done. I was advised the “estimated wait time” for an appointment was 6 weeks, but over a month on from 6 weeks later I still haven’t heard.

I am now scheduled for a standard 3 month PSA blood test next week. That will give me another rough indication of the risk of having cancer.

So I have had plenty of time to research things. Hence my interest in Resisting recommended treatment for prostate cancer: a qualitative analysis of the lived experience of possible overdiagnosis popping up on twitter yesterday.

Objective To describe the lived experience of a possible prostate cancer overdiagnosis in men who resisted recommended treatment.

Design Qualitative interview study

Setting Australia

Participants 11 men (aged 59–78 years) who resisted recommended prostate cancer treatment because of concerns about overdiagnosis and overtreatment.

Outcomes Reported experience of screening, diagnosis and treatment decision making, and its impact on psychosocial well-being, life and personal circumstances.

Results Men’s accounts revealed profound consequences of both prostate cancer diagnosis and resisting medical advice for treatment, with effects on their psychological well-being, family, employment circumstances, identity and life choices. Some of these men were tested for prostate-specific antigen without their knowledge or informed consent. The men felt uninformed about their management options and unsupported through treatment decision making. This often led them to develop a sense of disillusionment and distrust towards the medical profession and conventional medicine. The findings show how some men who were told they would soon die without treatment (a prognosis which ultimately did not eventuate) reconciled issues of overdiagnosis and potential overtreatment with their own diagnosis and situation over the ensuing 1 to 20+ years.

Conclusions Men who choose not to have recommended treatment for prostate cancer may avoid treatment-associated harms like incontinence and impotence, however our findings showed that the impact of the diagnosis itself is immense and far-reaching. A high priority for improving clinical practice is to ensure men are adequately informed of these potential consequences before screening is considered.

The conclusion from a PDF of the full report:

Conclusion

Widespread overdiagnosis of prostate cancer remains an important health problem. The immense psychosocial consequences of a potentially unnecessary diagnosis must be taken into account in any discussions and decisions about PSA screening.

These findings underscore the need to respect the ethical principle of autonomy by supporting men to make informed decisions about both screening and treatment in a clinical situation laden with so many uncertainties. Ultimately, the way to address the psychosocial burden of overdiagnosis and overtreatment of localised prostate cancer (especially low risk prostate cancer) is to better inform men and move decision making upstream, prior to diagnosis and prior to screening. More efforts to support informed choice and shared decision making at the point of PSA testing are needed.

More information and research from The New Zealand Medical Journal (2013 so dated): PSA screening in New Zealand: total population results and general practitioners’ current attitudes and practices

Conclusion

The incidence of yearly PSA testing amongst the New Zealand male population over the age of 40 is 28%. This is comparable to other developed countries around the World.

GPs’ provide appropriate information for men to make an informed decision about PSA screening. This is provided in a variety of ways based on doctor and patient factors. There is an increasing population of GPs who will not initiate any discussion of PSA testing in their male patients.

Maybe I made a mistake asking for PSA screening. It would have been far simpler to have not had the tests – as long as I don’t have cancer.

At least whatever next weeks result is I should be reasonably well informed.

 

 

MSD deputy cops one for the team for data bungle

Murray Edridge, a deputy chief executive in the Ministry of Social Development, has resigned over an embarrassing data bungle, but the Public Service Association (PSA) says that responsibility went wider than that.

Stuff: MSD deputy quits after botch-up with client data security, despite having ‘no direct involvement’

A senior civil servant has quit after a privacy botch-up at the Ministry of Social Development – but a union says others are also responsible for the bungle.

Murray Edridge​, a deputy chief executive at the ministry, will step aside, even though his boss, Brendan Boyle, said Edridge had “no direct involvement” in the client data controversy.

But responsibility went “wider than Mr Edridge and his colleagues”, PSA national secretary Glenn Barclay said.

The Public Service Association (PSA) said Edridge had taken the blame for security and privacy issues arising from client data collection.

Is one person falling on their sword sufficient?

The ministry’s poor handling of issues around the handling of sensitive and personal data in late March and early April triggered an independent inquiry.

Data sharing is a contentious issue and this was an embarrassing stuff up.

Former Deloitte consultant Murray Jack, who led the investigation, made it clear the ministry was asked to implement policy in an unworkable timeframe, and the security issues were a direct consequence of that, Barclay said.

“At a time of major organisational change, putting pressure on agencies to implement complex IT projects is unfair and unwise.

“We are very concerned about the pressure the Government can bring to bear on ministries when their pet policies are at stake.”

Political pressures in election year? Not a good reason to rush things.

Social Development Minister Anne Tolley announced details of the independent review into MSD’s individual client level data system last month.

Client level data included beneficiaries’ demographic information and vital statistics, such as client addresses, details of their dependants and details of MSD programmes clients were enrolled in.

No privacy breach occurred in the IT botch-up, but the review found the IT system gave organisations access to other groups’ folders, with the potential to reveal vulnerable clients’ personal data.

The botch-up infuriated Tolley, being revealed as she promoted policies forcing non-governmental organisations (NGOs) to hand over personalised client data if they wanted Government funding.

Was she poorly advised about reasonable timeframes, or did she push things too hard?

On Tuesday, Boyle said the investigation confirmed the ability of other organisations to see one uploaded folder stemmed from human error, relating to the incorrect granting of access permissions.

Human error is easy with things like that, especially if under time pressure and with inadequate systems and tests to check crucial things like data security.

“While we are satisfied that no breach of privacy occurred, it is concerning that there was the potential for this to occur.”

Very concerning.

Home support workers win

Homer support works there are 23,000 – have won important improvements in their pay and reimbursement conditions are a long running campaign that began two years ago with a legal case launched by the PSA.

The PSA has issued a press release: PSA celebrates win for home support workers

Victory for the vulnerable! PSA celebrates win for home support workers

Home support workers will get better recognition for the crucial work they do for some of New Zealand’s most vulnerable people – with legislation and a settlement package finally signed off.

The Home and Community Support Settlement Act confirms workers will be paid for the time they spend travelling between clients and receive compensation for mileage they accrue.

It’s ridiculous they weren’t paid for travel time and mileage.

In addition, a settlement agreement between unions, the Ministry of Health, DHBs and providers will provide for a transition to guaranteed working hours, training and wages based on qualifications.

So better work arrangements, training and wages. This is a sector that has been generally badly paid.

“The combination of the Bill and the settlement agreement will see home support workers getting the deal they deserve,” PSA Assistant Secretary Kerry Davies says.

The new arrangements will affect 23,000 people working in the sector – nearly all of them are women, and almost half are on minimum wage.

Home care worker and PSA delegate Jenny Goodman’s legal case kicked off more than two years of negotiations, and she’s delighted.

“The negotiations were undertaken by the PSA and E Tū, but everyone in the sector will benefit,” she says.

“Home support makes a huge difference to people’s lives and it also saves the government millions by keeping them out of rest-homes and hospital.

“We don’t do this job to get rich, we do it for the sense of achievement – but this will give us all a fair go, and ensure quality care for years to come.”

This will not only benefit the workers, it should provide better services for those who require home support with better training and attracting more to work in home support..

This can reduce overall costs by keeping people out of more expensive care for longer or totally for some people.

 

Labour Day

Today is Labour Day, although to many people it is just a day off giving them a long weekend, and to quite a few others it’s a busy working day as businesses milk the weekend shoppers as much as they can.

NZ History has some history on Labour Day:

Fighting for the eight-hour working day

Labour Day commemorates the struggle for an eight-hour working day. New Zealand workers were among the first in the world to claim this right when, in 1840, the carpenterSamuel Parnell won an eight-hour day in Wellington. Labour Day was first celebrated in New Zealand on 28 October 1890, when several thousand trade union members and supporters attended parades in the main centres. Government employees were given the day off to attend the parades and many businesses closed for at least part of the day.

Early Labour Day parades drew huge crowds in places such as Palmerston North and Napier as well as in Auckland, Wellington, Christchurch and Dunedin. Unionists and supporters marched behind colourful banners and ornate floats, and the parades were followed by popular picnics and sports events.

We are more likely to see streams of people heading to the shops today.

Currently there is no sign of the Labour Party acknowledging Labour Day on their website – the last news posts there are dated 24 October.

The PSA marks the occasion on Twitter:

We hope you all have a great Labour Day on Monday, a day off thanks to workers and our unions!

Labour on Twitter tells me:

You are blocked from following @nzlabour and viewing @nzlabour’s Tweets

I must be seen as a danger to their surge in popularity.

Which is lame because I can check their Twitter anyway, which shows no Tweets since retweeting Andrew Little congratulating the All Blacks and reporting from his trip to China.

The latest Labour Party post on their Facebook page is also All Blacks. They may not get a day off today, they should be training in preparation for the Rugby World Cup final against Australia..