Low-risk cancers should be renamed ‘indolent’, oncologist urges

Doctors should stop using the word cancer: Low-risk tumours should be renamed ‘indolent’ because the c-word traumatises patients, leading expert says

  • Cancer diagnosis covers tumours with a 5% chance of spreading in 20 years
  • And growths that could take over a patient’s entire body in just 12 months
  • Another doctor warns downplaying cancer runs the risk of under-treating 

An oncologist is urging for ultra-low risk cancers to be renamed ‘indolent’ to reduce anxiety for patients told they have the disease.

The medic – from the Carol Franc Buck Breast Care Center in San Francisco – warns the C-word creates ‘universal fear’ that causes ‘unnecessary psychological trauma’ when the patient may have a slow-growing tumour with a very low risk of death.

But another doctor argues downplaying a cancer diagnosis runs the risk of sufferers being under-treated, adding it is ‘impossible’ to predict exactly how a tumour will turn out.  

An oncologist is urging for ultra-low risk cancers to be renamed ‘indolent’ (stock)

Writing in the BMJ, Dr Laura Esserman – from the Carol Franc department of surgery and radiology – said: ‘No medical diagnosis evokes as much universal fear as one with the word “cancer”.’

The diagnosis covers everything from tumours with less than a five per cent risk of spreading over the next 20 years to a deadly disease that could take over the body in just 12 months. 

‘Clearly, a condition that is indolent or rarely metastasises is not a cancer as clinically defined,’ Dr Esserman said.

Although past cancer diagnosis tests were not always accurate enough to determine which tumours were most likely to spread, the technology has come a long way.

But ‘we have yet to use them to change how we define cancer’, Dr Esserman said.

She points to ‘ultralow risk prostate cancer’, where 98 per cent of patients live a decade post-diagnosis if their tumour does not spread.

Dr Esserman also argues improved cancer screening means more early-stage tumours are being identified than ever before.

Ductal carcinoma in situ (DCIS) – cancerous cells in the lining of breast ducts – makes up 25 per cent of all tumours detected via screening but ‘is rarely, if ever, lethal’. 

But patients ‘are being rushed to the operating room, precipitating a lifetime of anxiety’. 

‘Low and intermediate grade DCIS could be reclassified as “indolent lesions of epithelial origin”, without the word carcinoma,’ Dr Esserman said. 

Dr Esserman argues re-labelling ultra-low risk tumours will spare patients the ‘unnecessary physical and psychological trauma of a cancer diagnosis, and the fears of recurrence or side effects of treatment’. 

Rather than immediately opting for treatment, she believes patients should be encouraged to take up ‘active surveillance’ to monitor tumours that have not spread. 

Active surveillance may particularly benefits prostate-cancer sufferers, whose tumours often grow slowly and do not always spread. 

Many prefer to leave the cancer rather than suffer the erectile dysfunction and urinary incontinence side effects of treatment.  

But Dr Esserman adds ‘it is difficult to encourage patients to wait and watch once they have been told they have cancer’. 

Despite Dr Esserman’s points, Dr Murali Varma – a consultant histopathologist at Cardiff University – argues ‘removing the cancer label’ runs the risk growths will be under-treated.

And he adds biopsies provide information on a ‘tiny fraction of the tumour sampled’.

Renaming cancers may also cause worse patient anxiety than leaving the diagnosis as it is.

‘It has been recommended that some low risk thyroid carcinomas should be recategorised as tumours of “uncertain malignant potential”, he said.

‘However, such a term could be misinterpreted as indicating the pathologist is uncertain whether the tumour is benign or lethal.’

And, he adds, active surveillance still requires patients have regular check-ups, which are nerve-racking in themselves.   

Dr Varma is calling for greater public awareness of what different cancer diagnoses mean.

‘If the public were educated that benign signifies very low risk rather than no risk at all, then anxiety inducing labels could be avoided,’ he said. 

EDITOR AT A MEDICAL JOURNAL PANICS AFTER DOCTOR JARGON LEAVES HER BAFFLED AS TO HOW SERIOUS HER CANCER IS 

Birte Twisselmann (pictured) was left in a panic after medical jargon meant she was unaware how serious her cancer was

Birte Twisselmann (pictured) was left in a panic after medical jargon meant she was unaware how serious her cancer was

An editor at the BMJ was left in a panic after medical jargon meant she was unaware how serious her cancer was.

Birte Twisselmann decided to have a ‘lentil shaped’ mole looked at in 2007 after being there ‘seemingly forever’.

‘Driven entirely by vanity’, Ms Twisselmann – obituaries and editorials editor -went to hospital where the ‘sun worshipper’ was diagnosed with basal cell carcinoma.

Panicked by the word ‘carcinoma’, Ms Twisselmann was momentarily reassured when a ‘medically-trained colleague’ told her ‘well, it’s not really cancer – you won’t die from it’.

After a biopsy and skin graft, Ms Twisselmann was given the all-clear in March 2009 but the ‘Greek and Latin’ in her discharge letter ‘worried her more than basal cell carcinoma’.

A few months after her diagnosis, Ms Twisselmann had a biopsy in August 2007.

The tumour was then surgically removed from her nostril that October.  

‘I ended up with what felt like an enormous hole in the side of my nose,’ she wrote in a patient commentary in The BMJ.

‘That reinforced my irrational fear this lesion is called a cancer for a reason.’ 

Ms Twisselmann had a skin graft in December and was finally starting to relax. 

But the ordeal motivated the editor to have a dark stain on the sole of her foot looked at.

‘The doctor didn’t have a name for it and that, surprisingly, was a relief,’ she said. 

‘The lack of a label felt much less threatening, even though the decision to have that excised too raised my anxiety levels’.

Went she went to open her discharge letter, Ms Twisselmann read: ‘Basal cell carcinoma excised right nose, 0.75 mm from deep margin. 

‘Mildly atypical dysplastic acral lentiginous naevus excised left sole 17th of March 2008, excision complete with 2 mm margin’.

A baffled Ms Twisselmann felt the jargon had a ‘hidden meaning not intended for the patient to understand’ – which worried her more than anything else she had endured. 

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