When is a cancer not a cancer?

When caught early many cancers, including certain types of breast, prostate, testicular and thyroid cancers, have survival rates of up to 98%

Diseases routinely referred to as 'cancer' vary in metastatic potential from a less than 5% chance of progression over 20 years to a more than 75% chance of progression over one to two years

In my almost 40 years of clinical practice I have seen huge changes in our understanding, and in particular our acceptance, of cancer. As a junior doctor we routinely avoided using the word cancer with our patients. Doctors used euphemisms such as “neoplasm” or “mass” when talking about cancers to explain a diagnosis. “Space occupying lesion” was another euphemism used in front of patients. Patients themselves and their families avoided the term cancer.

As a palliative care doctor in the 1980s it was the norm for families to intervene and insist that I did not mention the “C” word to the patient. Even in general conversation people would only speak about the “Big C”. When the word “cancer” was used it implied something overpowering and insurmountable – and often final. But this language is outdated – when caught early many cancers, including certain types of breast, prostate, testicular and thyroid cancers, have survival rates of up to 98 per cent.

The language of cancer is important because language influences action – how people speak about cancer can affect how they deal with it, from recognising symptoms to seeking treatment and care. And the language of cancer continues to change.

A recent article by Simon Crompton in CancerWorld magazine asking “If the risk is very low, should we still call it cancer?” caught my eye. The author’s thesis is that with our expanding scientific knowledge we can now tell the difference between small, low-risk tumours and an aggressive or advanced cancer – the implications of which can be hugely significant. Diseases routinely referred to as “cancer” vary in metastatic potential from a less than 5 per cent chance of progression over 20 years to a more than 75 per cent chance of progression over one to two years.

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The words we use around disease affects treatment choices made by patients. And it seems the use of the word cancer for low-risk disease contributes to overdiagnosis and overtreatment.

A 2019 debate in the British Medical Journal asked: Should we rename low-risk cancers? Breast surgeon Laura Esserman, director of the Carol Franc Buck Breast Care Centre at the University of California, San Francisco, argued that definitions need to change as knowledge progresses. “In the past, it was not possible to reliably identify lesions with negligible risk,” she said. “Today genomic tests inform our understanding of the risk and timing of recurrence, but we have yet to use them to change how we define cancer.”

A counterargument from a histopathologist said that alternative names for cancer could be confusing and that better education was the answer.

The debate continues to simmer, mainly in the fields of breast, thyroid and prostate cancer. Fewer than 1 per cent of men diagnosed with a low-grade prostate cancer (Gleason score 6) experience spread of the tumour or die within 15 years of initial diagnosis. This has led a group of North American specialists to call for low-grade prostate tumours to be labelled a “pre-cancer” rather than “cancer”. They argue that using the word cancer for a low-risk condition heightens fear and pressures men to opt for unnecessary overtreatment.

A similar debate surrounds breast cancer. Many women diagnosed with breast cancer every year are told they have ductal carcinoma in situ (DCIS). As few as 20 per cent of DCIS cases might progress to invasive cancer over a protracted period of five to 40 years; most DCIS lesions remain indolent. But despite it being considered low-risk patients with DCIS continue to be overtreated, leading to calls for a reclassification of the disease.

But what do patients think of renaming some forms of cancer?

A survey of 450 prostate cancer patients in 2023 showed how divided patients are: 35 per cent supported reclassifying Gleason 6 as a non-cancer and 35 per cent opposed it, with 30 per cent undecided.

Without further education and patient agreement renaming cancers seems premature, at least for now.

mhouston@irishtimes.com