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

Doug Hendrie

13/08/2018 4:11:20 PM

RACGP President-elect Dr Harry Nespolon has questioned the push for low-grade cancers to be relabelled.

Should low-risk cancers be renamed?
Should low-risk cancers be renamed?

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

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Colleague   14/08/2018 7:20:09 AM

About this quote: 'Professor McCaffery many people have an outdated view of cancer as a disease that means death, even though medical science has moved on enormously, with many cancers now very treatable.'

This is mealy-mouthed verbiage. Does 'treatable' mean 'curable'? Indeed, Stage IV metastatic cancer is treatable and is the lingo that doctors use. Treatable does NOT mean survivable does NOT mean fatal - Prof. McCaffery should have been taken to task for this confusing and senseless word play. It undermines the little credibility she engendered in the article.

Penny   14/08/2018 9:29:01 AM

I must say I agree with the relabelling. I've personally seen a lot of damage and stress done to patients when they feel the need to act aggressively on neoplasia that is best left alone.

Of course there's a role for a good consultation with a GP, but it's often taken out of our hands by specialists. Using a strong, emotive word has power, like it or not.

Rachel   14/08/2018 10:07:06 AM

As a GP I need to know if 'treatable' (as per Prof. McCaffery) is the same as 'survivable.' Words matter, shades of difference in meaning is incalculably important in discussions with patients.

Linda   14/08/2018 5:16:27 PM

I am a GP and someone who has been diagnosed with high grade DCIS(which I note is not recommended for relabelling- only low risk).
Being told you "dont really have cancer" but then need surgery and 6weeks of radiotherapy as if you did have cancer was confusing and frightening.
Relabelling will def reduce mental anguish but we need to be careful not to confuse patients -being told you "sort of cancer but sort of not" is even worse!