Drop ‘cancer’ label to protect patients from over-treatment, researchers say

Once the word “cancer” was uttered, many patients with very slow-growing or precancerous conditions found it unbearable to cope with active surveillance (in which changes in their condition are closely monitored) even when this was the recommended option, said lead researcher Brooke Nickel at the University of Sydney.

Brooke Nickel, at the University of Sydney school of Public Health and lead author of an analysis making the case for ditching the 'cancer' label for low risk conditions.

Brooke Nickel, at the University of Sydney school of Public Health and lead author of an analysis making the case for ditching the ‘cancer’ label for low risk conditions.

Photo: Supplied

“These patients report not being able to think of anything else and are driven to do anything to get rid of it. It can be terrifying, and rightly so,” Ms Nickel said.

“It has been ingrained over decades that cancer is always scary and causes death.

“But when there is evidence that a condition is low risk and could be overdiagnosed and overtreated, calling it a cancer might do them more harm than good.”

Improved screening programs and increasingly sensitive tests are now picking up smaller growths and abnormalities – such as ductal carcinoma in situ (DCIS) – than ever before.

“In many cases small abnormalities will never go on to cause harm if they were left undetected or untreated, but once we’ve found them it’s hard to not do something about it,” Ms Nickel said.

Breast cancer diagnostics - including 3D mammography - hav improved over the years picking up smaller growths earlier.

Breast cancer diagnostics – including 3D mammography – hav improved over the years picking up smaller growths earlier.

Photo: Andy Zakeli

Types of cancers that could be considered for re-naming were  localised prostate cancer, low and intermediate-grade DCIS and intrathyroidal papillary thyroid cancer, the authors suggested.

Active surveillance is a recommended option for localised prostate cancer, yet international research shows most men opt for radical prostatectomy or radiation therapy.

“While active surveillance is increasingly being recognised as a safe management option for some patients with cancer, there is still a strong belief that aggressive treatments are always needed,” said senior author Kirsten McCaffery at the University of Sydney.

Professor Kirsten McCaffery at the University of Sydney is the lead author on the BMJ analysis.

Professor Kirsten McCaffery at the University of Sydney is the lead author on the BMJ analysis.

Photo: Supplied

Active surveillance for DCIS is currently being trialled internationally to reduce potentially unnecessary treatment including double mastectomy, and patients with low-risk papillary thyroid cancer who choose surgery and those who monitor their condition have comparable outcomes.

Renaming cancer has been successfully done in the past, including on cervical abnormalities detected during pap smears and some bladder tumours.

But renaming came with significant concerns.

Patients might not be as diligent with follow-ups and treatment or lose touch with services, and it might also affect their eligibility for some government benefits and services, the authors warned.

“Patients might perceive that the new label undermines their current care,” they said.

They might lose their sense of belonging to a “cancer survivor” community, or believe they were  falsely classified or underwent unnecessary treatment.

The authors proposed a thorough reform process beginning with a global roundtable meeting of all major cancer classification groups, patients representatives, doctors and government agencies.

Cancer Council chief executive Sanchia Aranda said changing the nomenclature to reduce overtreatment had merit, but the complexities concerning the ability to predict which patients would progress to invasive cancers – particularly DCIS – the harm of the diagnosis itself and the need to educate patients about active surveillance were major hurdles that would not be overcome by a name change.

“We want patients to understand that they have potentially serious conditions that need to be monitored so they don’t walk away from medical services,” she said.

The researchers expected considerable pushback from patient and screening advocate organisations.

“And rightly so, given what patients and families have been through. Cancer is so emotionally charged,” Ms Nickel said.

Specialists would also likely reject the move while it remained impossible to predict which of these patients would develop malignant cancers, even when the risk was low, said Ms Nickel.

“On the other hand, changing the term might make [specialists] feel more comfortable recommending less invasive treatments,” Ms Nickel said.

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