Give patients the full truth on cancer: RACGP President-elect

New analysis in the British Medical Journal has called for low-risk cancers to be renamed to minimise patient stress and cut back on potentially unnecessary invasive treatments.
 
But RACGP President-elect Dr Harry Nespolon said that withholding any detail of a diagnosis from patients is the wrong approach.
 
‘This takes us back 50 years to a paternalistic form of medicine where doctors know best and they tell patients what they need to know and what they don’t,’ he told newsGP.
 
‘Everyone deserves the full truth about a diagnosis. We shouldn’t be holding back what the information means to a patient.
 
‘No doubt [patients] are sometimes over-treated, but that’s preferable to being under-treated.’
 
The analysis, ‘Renaming low risk conditions labelled as cancer’, argues that the use of the word ‘cancer’ for non-growing or very slow growing tumours may lead patients to seek high-impact treatments, such as surgery or chemotherapy, rather than more preferable options like active surveillance.
 
The study names intrathyroidal papillary thyroid cancer under 1 cm in size, low-risk ductal carcinoma in situ (DCIS) (often known as stage 0 breast cancer), and localised prostate cancer as conditions that would be better treated with active surveillance.
 
The authors note that a number of other cancers have already been relabelled, such as the successful 1998 move to relabel papilloma and grade 1 carcinoma of the bladder as papillary urothelial neoplasia of low malignant potential.
 
Dr Nespolon said that GPs deliver any cancer diagnosis by putting it into context.
 
‘GPs provide background – the risk, low-grade or high-grade, treatments, referrals, and coordinating the care of the patient from the time of diagnosis,’ he said.
 
‘Changing words [away from cancer] gives the impression the profession is hiding things from them. If a GP is providing the context to a diagnosis, you won’t get the usual Googling [of the condition].
 
‘My patients want to know the full story, and their wishes need to be respected. If they want to get a low-grade prostate cancer removed, they should have the right to discuss it with the urologist as to what the best care is.
 
‘Most patients don’t rush out the door and say ‘cut it out’. Most take their time in making a decision about what needs to be done.’
 
Dr Nespolon said the worst outcome would be if a GP used words that do not accurately describe the condition, and a low-grade cancer subsequently spread.
 
However, study co-author Professor Kirsten McCaffery from the University of Sydney argues that using ‘medicalised labels’ such as cancer can lead to more invasive treatments.
 
Active surveillance has been recommended for localised prostate cancer for many years, but most men still opt for prostatectomy or radiation therapy.
 
‘Only a third of men with localised prostate cancer take up active surveillance. And, of those, 25% still go for surgery or more aggressive treatment. It’s likely because they can’t live with the anxiety,’ she told newsGP.
 
‘We’ve done many interviews with patients. [A cancer diagnosis is] very stressful and anxiety-provoking. People make big life changes – they leave work, they spend years worrying about it – and often undergo treatments with serious side effects.
 
‘If it’s a high-risk cancer, those side effects are worth it. But if you have a low-risk cancer that may never progress, we should question the harms versus the benefits.’
 
Professor McCaffery believes many people have an outdated view of cancer as a disease that means death, even though medical science has moved on enormously.
 
In response to Dr Nespolon’s concerns, Professor McCaffery said it is a legitimate issue to discuss.
 
‘In our paper, we are calling for a round table of experts, consumers and patients to get together to consider the evidence,’ she said. ‘That consultation is essential, because this is not a straightforward change.
 
‘But we do know that when people hear the word “cancer” they panic and find it difficult to think clearly and make evidence-based decisions about treatment.
 
‘So shifting the terms may just enable people to consider the different options and weigh them up. Surgery? Or are you prepared to be monitored for a few years, and only progress if the cancer worsens?’

Update: This article has been updated to remove the phrase ‘with many cancers now very treatable’, attributed to Professor Kirsten McCaffery, to avoid conflating the terms ‘treatable’ and ‘survivable’.

active surveillance British Medical Journal overtreatment