Renaming low-risk cancers: helping patients "paralysed by anxiety"

WHAT’S in a name? A lot, if that name happens to be “cancer”, say Australian researchers at the forefront of a push to rename some low risk cancers in a bid to reduce overdiagnosis and over-treatment.

Professor Kirsten McCaffery, behavioural scientist at the University of Sydney’s School of Public Health and a National Health and Medical Research Council Professorial Research Fellow, said the word “cancer” predated modern medicine, but continued to provoke fear and anxiety in patients.

“You can find references to cancer in Shakespeare,” Professor McCaffery told InSight+. “In previous centuries, if you got cancer, you died a terribly painful, nasty death, and for some forms of cancer, this is still true today. But in the past few decades, we have made enormous improvements in the way we treat cancer and the way we can manage it. So, the word ‘cancer’ has come to mean something very different in modern medicine. Yet our terminology for it and classification system for it remains unchanged.”

“Some clinicians are amazingly good communicators when they are talking about cancer and all the fear and anxiety that comes with that,” she said. “But for [many] patients, as soon as the word ‘cancer’ is mentioned, then they can’t process anything else. They become almost paralysed by the anxiety.”

In three articles published in The BMJ in 2016, 2018, and 2019, Professor McCaffery and colleagues explored the challenges of cancer overdiagnosis and overtreatment. They wrote that a cancer label could influence desire for screening and surgery, add to uncertainty about active surveillance, and have psychological repercussions.

They acknowledged that changing the terminology for some low risk cancers requires a reclassification and recalibration of some forms of low risk cancer, and would be controversial and challenging. But, they said: “We cannot continue to tell many people they have cancer when that label may be doing them more harm than good.”

The researchers and experts globally have three key low risk cancers in their sights: ductal carcinoma in situ (low and intermediate grade, stage 0 breast cancer), localised prostate cancer (Gleason score of 6 and below), and intrathyroidal papillary thyroid cancer (less than 10mm). They noted that the disease-specific mortality risk was low across all three cancers: ductal carcinoma in situ, 3.3% at 20 years; papillary thyroid cancer, less than 1% at 20 years; and localised prostate cancer, 1.2% at 10 years.

They also noted that several other cancers had undergone a name change – including the 1998 reclassification of papilloma and grade 1 carcinoma of the bladder as papillary urothelial neoplasia of low malignant potential – but evidence of the impact of these name changes on clinician behaviour and patient outcomes was lacking.

Earlier in 2019, The BMJ also published an article – Should we rename low-risk cancers? — examining two sides to the case to rename low risk cancers.

Prosecuting the “yes” case, US breast cancer surgeon Professor Laura Esserman, wrote: “Overtreating people who are not at risk of death does not improve the lives of those at highest risk.

“The refinement of the nomenclature for cancer is one of the most important steps we can take to improve the outcomes and quality of life of patients with cancer.”

However, Dr Murali Varma, a UK consultant histopathologist, argued that new terminology could lead to confusion, and more education was needed.

Associate Professor Ian Haines, medical oncologist and Adjunct Clinical Associate Professor of Medicine at Monash University, said cancer undoubtedly evoked an emotional response in patients, but changing the terminology may not be a panacaea.

“Very few of us are rational beings when it comes to health and the word cancer,” he said.

Associate Professor Haines said there was a good case for relabelling papillary thyroid cancer, which had been at the centre of a “public health disaster” in South Korea, where a screening program resulted in a sixfold increase in the incidence of thyroid cancer in just a decade.

“Papillary thyroid cancer is almost universally low risk and is certainly one that could be renamed,” he said.

But, he said, changing the terminology used for ductal carcinoma in situ and prostate cancer could open a “Pandora’s box”.

“These are not clearly defined silos. People who are [diagnosed with a] low risk [lesion] can occasionally end up developing a more aggressive cancer and sometimes even metastatic disease through biological factors that we can’t yet identify,” Associate Professor Haines told InSight+. “And you only have to produce one exception to show that the change is … going to cost lives. I think most doctors and people in this space would probably rather do 100 unnecessary treatments than to have someone die and to feel responsible.”

He said medicolegal concerns had also driven health professionals to become increasingly risk averse.

“No physician wants to miss [a cancer] and breast radiologists seem more likely to me to overcall these now. We are seeing a lot of mammograms reported as suspicious and people end up having biopsies, so it does produce a much more invasive treatment.”

Associate Professor Haines said the push for more testing and treatment was also coming from the public, with awareness-raising campaigns like Movember and Blue September encouraging more and more people to seek out screening.

“If a man asks for a screening PSA test, the GP is very likely to accede because they don’t want to miss a potentially lethal cancer even when there is almost no proven survival benefit for early diagnosis and treatment,” he said. “Prostate cancer is still a leading cause of death – it kills 3% of men – and no doctor wants to think that they have contributed to that.”

He added that once men had had a PSA test, they were on a “rollercoaster that was very hard to get off”.

“It’s not a good screening test,” he said. “In six out of seven diagnoses, the patient is biologically destined never to die of it, and we still haven’t proven that if we treat one dangerous cancer early, we will prevent any deaths.”

Associate Professor Haines said this was a challenging concept to communicate in the public domain, but clinicians could help to put these diagnoses in perspective.

“If you talk to people one-to-one, you can explain a person’s individual risk,” he said. “You have to emphasise to the patient that you can’t guarantee that they won’t die from prostate cancer, but from the available information, their risks are extremely low.”

While Associate Professor Haines applauded efforts to explore alternatives to current terminology, he said a better approach would be to assign known long-term risk to these cancers – labelling them “high risk”, “intermediate risk”, “low risk” or “ultra-low risk” – and to embark on an education campaign.

“I would favour educating doctors to educate patients,” he said, adding that he would encouraging doctors to abandon all PSA screening tests unless the patient provides full informed consent.

Professor McCaffery said even with the best of intentions, patients’ preconceptions about a cancer diagnosis could hinder discussions about risk.

Clinicians may emphasise to patients that a particular cancer diagnosis is “low risk” or “nothing to worry about”, she said, but those words were often subsumed by the fear created by the word “cancer”.

Professor McCaffery said her research group was planning a round-table discussion with pathologists and a series of citizens’ juries in early 2020 to discuss the potential benefits and harms of reclassifying several cancers with low malignant potential.