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.