Tag Archives: overdiagnosis

The real definition of active surveillance: what it means for a patient

Simon Crompton

Simon Crompton

It was only on the second day of ESO’s conference on active surveillance of low risk prostate cancer this weekend that the question was raised: what actually is active surveillance?

“Watchful waiting” and “active surveillance” were for many years regarded as the same thing. In fact, that Bible of medical veracity Wikipedia still equates the two – as observational approaches that allow men with low risk prostate cancer the opportunity to avoid or delay aggressive tests and treatments.

But the field has changed and specialised rapidly in the past 20 years, with the European School of Oncology taking a lead on extending knowledge in the field – organising three expert conferences, of which this was the latest. Those urologists, radiologists and public health experts attending such events are very clear that active surveillance is different from watchful waiting.

What’s the difference?

As Axel Semjonow from the University Hospital Muenster, Germany, explained: watchful waiting delays the need for palliative treatment, while active surveillance delays the need for curative treatment. Active surveillance is more likely to involve a schedule of assessment and tests, such as biopsy. Watchful waiting is more likely to apply to men with a life expectancy of less than ten years and will often follow active surveillance.

But these definitions only became widely used in 2008.

The rapid acceptance that active surveillance is an important strategy for treating low risk prostate cancer has had a lot to do with growing concerns about overdiagnosis and overtreatment in prostate cancer. For many men, biopsies, prostatectomy and radiotherapy produce effects far worse than their cancer ever would. A recent study showed that just 1% of men whose low risk prostate cancer is managed through active surveillance go on to die of the disease.

Conferences such as this are incredibly important for determining the best ways of selecting patients for active surveillance and of monitoring them while on the programme.

But active surveillance is still an emerging art, under-researched and ill-defined. The role of MRI scanning, for example, was a continual source of debate during the conference. We know a lot about its ability to diagnose prostate cancer. But in terms of its accuracy at monitoring disease progression, there are few yardsticks.

When cure seems the only goal

And, beyond the realms of such meetings, the very meaning of active surveillance is poorly understood. There are still varied definitions in scientific papers and guidelines. For prostate cancer patients, mere scientific statements of meaning do little good. Active surveillance offers many men the chance of a long and good quality of life without treatment side effects, but that might be hard to understand amid the stress of diagnosis when “cure” seems the only goal.

As several participants at the conference pointed out, amid the excitement of scientifically advancing this important field, the difficulty of patients understanding the approach and their personal risk should not be forgotten. Good communication has to be at the heart of programmes – and making sure that everyone understands what active surveillance really means today would be a good start.

Highlights from the conference:

 

Heads up: it may be best to do nothing

Simon Crompton

Simon Crompton

 

It’s always strange emerging from the single-mindedness of a conference to breathe the outside world’s unconcerned air. I doubt there was a person attending the British Medical Journal’s recent “Preventing Overdiagnosis” conference in Oxford who didn’t come away with the sense that overdiagnosis and its consequences is one of the biggest challenges facing health providers globally.

 

But beyond the concern of a handful of international experts – many of whom were gathered in Oxford – awareness and concern among the international cancer community seems low. Yes, most of us know that there are risks as well as benefits to breast cancer screening, and that PSA testing for prostate cancer can lead to unnecessary tests and treatment. But does that result in changes to practice? Does every one of us need to sit up and listen a bit more?

The papers presented at the conference certainly suggested “yes”. As keynote speaker Ilona Heath, a former President of the Royal College of General Practitioners, said: “Susan Sontag’s kingdom of the well is being absorbed into the kingdom of the sick, and clinicians and health services are busy ushering people across this important border in ever-increasing numbers. The costs, personal, social and economic, are enormous.”

The issue of overdiagnosis doesn’t just hover over breast cancer and prostate cancer.

The conference heard evidence that it is an issue in melanoma. An analysis of data by America’s National Cancer Institute, presented at the conference, showed that melanoma incidence has been increasing since 1975 while mortality has remained stable, strongly suggesting overdiagnosis.

Or take ovarian cancer. The conference heard about concerns that improved testing with blood tests and ultrasound are leading to increased detection of borderline ovarian tumours that might never present clinically in the lifetime of a woman.

Or thyroid cancer. A population-based study of thyroid cancer patients in Ontario, Canada between 2000 and 2008 shows that this relatively benign cancer is increasing at an “epidemic” rate. The increase seems to be confined to more affluent areas, and closely related to the availability of diagnostic ultrasound.

The suggestion is that, without sophisticated diagnostic techniques, large numbers of people with these diseases would have died of something else without even knowing they had cancer. They might have avoided distressing decisions, painful tests, potentially disabling treatments.

Such interpretations of data can prove controversial. Some evidence is strong, some is preliminary to say the least. But it undoubtedly opens up important questions for all those involved in the detection and treatment of cancers. It asks us to look up from a heads-down determination to track down and destroy cancer, and question whether sometimes – quite often – doing nothing is the best course.

It’s not an easy thing to do. Cancer World will be exploring the issues in its next three editions.