“You have cancer” is awful to say, worse still to hear – a gut-wrenching first step along a desperately uncertain journey. The subsequent conversation invariably revolves around a plethora of averages, and test results that, while increasingly sophisticated, are far from perfect.
But should everything we currently call “cancer” have that title? In this week’s BMJ, Laura Esserman argues that breast lumps known as ductal carcinomas in situ (DCIS), which almost never spread and are rarely lethal, should no longer be called cancer. Instead, she proposes that these be renamed IDLEs – indolent lesions of epithelial origin.
It’s not just breast lumps.  Some men’s prostate cancer will become resistant to everything we offer them. For others, a simple prescription of regular check-ups will suffice. This has led some researchers to propose that the lowest risk prostate cancer, Gleason grade 3, be considered benign, as is the case with grades 1 and 2. And our TRACERx Renal study has suggested evolutionary rules that identify low-risk kidney cancers and others that never return after surgery. Is there a case for reclassifying these too?
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Many forms of cancer show a similar spectrum. Sorting the aggressive from the indolent remains a crucial challenge across cancer care. But our growing understanding has meant that our diagnoses are getting ever better. We are learning why, on a molecular level, the word “cancer” encompasses an enormous range of conditions, from benign and indolent to fast-growing and rapidly spreading. The disease’s complex evolutionary rule-book is slowly being deciphered.
Watch and wait
This makes dropping the C word for some of these diseases tempting. It could make active prostate cancer surveillance more palatable than active or invasive treatment. Women with DCIS could be offered a “watch and wait” option. Defining people’s conditions as “not cancer” could have major implications for how healthcare systems treat them, while focusing treatment escalation and clinical trials on people with conditions that are life-threatening.
But where would the line be drawn? We should tread carefully. Do we really know enough to predict that a given case will never spread? Enough to avoid using the word cancer in conversations with patients? After all, the concept of “watch and wait” begs the question: wait for what?
While some of these conditions only rarely progress to lethal disease, formally excluding this remains extremely difficult. This is true even with today’s technologies, not least since biopsies can miss microscopic lethal cancer cells within an otherwise benign tumour.
Reclassification would also mean developing robust alternative terms, and guidelines on how best to use them to support better decision-making.
This is an important, nuanced debate that will continue to develop, especially as new studies further refine our understanding. These include the international PRECISION breast cancer study – jointly funded by Cancer Research UK and the Dutch Cancer Society – which is investigating the molecular differences between lethal and non-lethal disease.
I worry that, just as cancer is being discussed more openly – witness the mountain of memoirs, podcasts and social media on the subject – we could inadvertently put it back in the closet.
