Don’t use the ‘C-word’

A cancer diagnosis carries with it fear and upheaval. For many patients the cellular changes do not warrant the label

by Matthew R Cooperberg  BIO

Light micrograph of a section through a prostate gland with benign prostatic hyperplasia. Photo by Steve Gschmeissner/SPL

is professor of urology and professor of epidemiology and biostatistics at the University of California, San Francisco, where he is also vice chair for translational and population health research in the Department of Urology. He is also chief of urology at San Francisco Veterans Affairs Medical Center, and co-leader of the Prostate Program at the UCSF Helen Diller Family Comprehensive Cancer Center.

Edited byPam Weintraub

William came to me for a third opinion. He was 53 and healthy, with a wife and two teenage children, a busy job, and a typically hectic work-and-family schedule. He’d taken time to do the right thing and had visited his primary care provider for a routine health exam and blood tests, his first in many years. A few weeks later, he’d found himself in an unfamiliar urologist’s office, at the edge of an abyss, ears ringing with what may be three of the most dreaded words in medicine: ‘You have cancer.’ This diagnosis portends pain, suffering and death: in the United States alone, cancer kills more than 600,000 people a year, enough lives to empty a city.

Yet, receiving a cancer diagnosis doesn’t necessarily mean what it once did. William was in very broad company: more than 2 million Americans a year receive the diagnosis and, for many, the finding entails little to no threat to length or quality of life, except through the ill effects of treatments. However, patients labelled with the ‘C-word’ face substantial clinical, psychological, social and economic consequences. This disconnect – between what the word evokes in my exam room and what it often describes in contemporary practice – drives controversies and variability in screening practices, and in light of our growing understanding of cellular biology, demands that we rethink what we really mean when we apply the label ‘cancer’.

William’s cancer was in his prostate, an organ of whose existence he was previously only vaguely aware, but whose removal or radiation risked impairments to urinary, bowel and sexual function. His biopsy had revealed a prostate tumour we designate ‘grade group 1’, which features few molecular hallmarks of cancer and no immediate potential for metastasis or death. Nonetheless, beset with many competing opinions from his rapidly expanding medical team, William found himself rushing headlong toward treatment, and wrestling with a constant anxiety he’d never felt before. By the time he reached my office, he had taken medical leave from work and confided that, perversely, he was smoking for the first time in decades.

When I started medical school in the 1990s, I found cancer fascinating and terrifying exactly because of the betrayal it represented. Most human disease represents failure of one body system or another. Whether due to trauma, infection, degradation of blood supply, mechanical wear-and-tear or other causes, one or more organs stop performing optimally. In such cases, our job in medicine is simple in principle: support the failing system, prevent further damage, and repair or replace missing function as much as possible.

Cancer is fundamentally different: although ultimately it also causes system failures, its origin lies in cells in a corner of a given organ thriving more than they should, growing too quickly, and eventually exploring and colonising other parts of the body. A marauding virus or bacterium is clearly a malign invader that can be understood and labelled as foreign and hostile. A cancer is a person’s own cells. They are behaving badly but are still intrinsic to the self. Chemotherapy for cancer is so much more toxic than antibiotics for bacterial infection precisely because it is harder for treatments to consistently distinguish ‘normal’ from ‘cancer’ among a body’s cells.

The noun, the proper noun with the capital letter, still looms, menacing

In my practices at the University of California, San Francisco Cancer Center and the San Francisco Veterans Affairs Medical Center, I see men in William’s situation in every clinic, every week. The better-informed among them have often already figured out that not every tumour needs treatment, but many are still reeling from the moment the word ‘cancer’ entered the room – the way the light suddenly dimmed and the air thickened – and how little they really heard during the rest of the visit. Counselling these patients is as important and nuanced a part of my job as is surgery, and the right words in the office are no less critical than the right tools in the operating room. But even as we have developed robot-assisted precision surgical systems, increasingly focused radiation delivery platforms and marvellously targeted pharmaceuticals, our language is essentially stuck in the 19th century.

Many colleagues and I try to pepper these counselling conversations with adjectives intended to reassure both patients and their loved ones: low-grade, low-risk, nonthreatening, slow-growing, indolent. We’ve grown relatively facile using these modifiers to pull patients back from the edge of the chasm, but the noun, the proper noun with the capital letter, still looms, menacing. After many years of these patient consultations – which have grown easier over time, but only to an extent – I am among a growing cadre of prostate cancer specialists and researchers who have started to challenge our colleagues to take seriously the question of whether to update our vocabulary to bring what we say back in line with what patients hear.

My professional forebears would recognise cancer at human scale quickly and with a knowing dread: the lump in the breast accompanied by another in the armpit, the yellowed eyes indicating a squeezed bile duct, the minor bleeding that wouldn’t stop because leukaemia had taken over the bone marrow. The unintended weight loss. The nagging pain. In my time, in contrast, we typically present a patient with the diagnosis over a piece of paper or text on a computer screen: a pathology report, a divination read from glass slides and rendered in ink or pixels to predict the future for a patient who today usually feels just fine. But at what point does aberrant behaviour threaten the whole body? How do we determine the thresholds cells cross from variant to abnormality to enemy? In the decades of my career since school, our appreciation of cancer’s complexity has grown more sophisticated, but we are still nowhere near being able to define the true moment a cancer begins, nor the subsequent moment it first threatens health and life.

Medical traditions stretching over thousands of years recognised visible growths with the capa­city to grow, spread and kill. Hippocrates and his contemporaries in the 5th century BCE first named the karkinos – ‘the crab’ – after the visible tendrils that progressive tumours could be seen to propagate along lymphatic channels under the skin. In the ensuing millennia, progress in understanding the disease came in fits and starts, but cancers were universally detected when they were visible, palpable or symptomatic, by which point cure with surgery was successful only uncommonly. Even when survivable in the hard-to-imagine pre-anaesthesia, pre-antisepsis era, surgery couldn’t eradicate cancer that had already metastasised; as a result, cancers recurred and progressed – and were nearly always lethal.

In the centuries after the development of microscopy, modern pathology evolved to allow researchers and physicians to see the hidden face of the........

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