Adiagnosis is more than words on a page. It’s everything that comes with it: the doctor’s tone of voice, a gentle touch of the hand, the pauses left so the patient can digest the news. All of these details subtly impart how you should think about the label that you’ve just been given.

But one diagnostic word in particular threatens to derail any rational discussion of its meaning: cancer.

'‘Cancer’ is just this panic word,” said Laura Scherer, a social psychologist at the University of Colorado in the US who studies how doctors communicate risk. Patients compare hearing the term to “getting hit by a truck, like they can’t process anything that comes after”, she said.

Kirsten McCaffery, a health researcher and psychologist at the University of Sydney’s School of Public Health in Australia, added, “That ‘cancer’ label is kind of an anxiety bomb that goes off for patients.”

That’s why some oncologists argue that, for certain early cancers that aren’t at risk of spreading, the medical profession should do away with the word altogether.

At the heart of the debate is the common breast cancer diagnosis DCIS, or ductal carcinoma in situ. The phrase, which describes cancer cells confined to the lining of the milk ducts, is somewhat of an oxymoron. The US’s National Cancer Institute defines cancer as cells that, if left untreated, will grow uncontrollably and spread to other parts of the body; “in situ”, however, means limited to one place.

The name is “a relic from prior categorisation schemes” that essentially means “don’t worry, but worry”, said Dr Ronald M. Epstein, a professor of medicine at the University of Rochester Medical Center, US, who writes about mindful communication in medicine.

DCIS cells grow, but slowly. For most patients, the cells will never spread beyond their original location or cause problems, and they might even be reabsorbed by the body. For around one in four patients, however, the cells will eventually transform into invasive breast cancer.

The diagnosis therefore challenges the textbook definition of cancer, and it can undermine a clear understanding for the more than 50,000 patients who receive the diagnosis each year.

C alling DCIS “cancer” can signal to patients that they face a medical emergency requiring immediate surgery and, often, radiation. Yet studies suggest that such harsh treatments may be unnecessary and overused. Preliminary results from a trial of nearly 1,000 women with DCIS showed that, two years into the study, patients who were being actively monitored did not experience a higher rate of cancer than patients treated with surgery.

“A lot of these cancers didn’t show up yesterday, so it’s not an emergency,” said Dr Laura J. Esserman, a surgeon and oncologist at the US’s University of California, San Francisco’s Breast Care Center who diagnoses and treats DCIS. “It’s an emergency only because you know about it.”

To Dr Esserman, the solution is simple. Call the condition something else: abnormal cells, low-grade lesions, stage 0 cancer, precancer, a risk factor for cancer. Renaming DCIS is an “ethical imperative”, she has argued, to spare patients undue anxiety and to shift the current treatment paradigm from invasive surgery to active monitoring (sometimes with hormone-blocking medications).

This problem goes beyond the breast. A handful of other conditions straddle this in-between space, including early-stage cancers of the lung, thyroid, esophagus, bladder, cervix, prostate and skin. Some, like early-stage prostate cancer, are still called cancer. Others have already had the word excised from their names: abnormal cervical cells, for example, are now referred to as dysplasia.

“The challenge with the word ‘cancer’ is it feels like the horse is out of the barn,” said Dr Arif Kamal, an oncologist and chief patient officer for the American Cancer Association.

Y et renaming a condition because it sounds scary risks seeming paternalistic, said Dr Shelley Hwang, a surgical oncologist at Duke University, US, and lead author of the recent DCIS trial. Using a word like “neoplasia”, another term for a tumour, suggests that patients need to be protected from even the idea of cancer.

It can also hinder research. As imaging tools emerge that can reveal cancer growing at earlier and earlier stages, doctors have come to believe that most cancers start out as abnormal cells in situ. In that case, removing the word “cancer” from these conditions severs an important link that helps researchers understand the natural history of the disease.

“Changing the name altogether is very confusing,” Dr Hwang said. “You need to create a link to all the previous research and everything that’s been written before you.”

The good news: there is evidence that changing treatment is possible without renaming. The bigger question may be not whether to rename or downgrade individual cancers, but how to reframe the larger meaning of the disease and the evolving ways to treat it. And that will require doctors to be thoughtful not just in what they call it, but in how they explain it to individual patients, one at a time.

NYTNS