In recent weeks, there have been new calls for new names for some cancer diagnoses – cancer labels – that change peoples’ lives forever.
This week in the BMJ, Dr. Barry Kramer, director of the National Cancer Institute’s division of cancer prevention, and two colleagues wrote an editorial, “The word ‘cancer’: how language can corrupt thought.” Excerpt:
“Labeling hurts. Healthy people are quickly converted to cancer patients, and toxic interventions are offered and accepted. …antiquated nomenclature should be revised, reserving ‘cancer’ or ‘carcinoma’ for lesions likely to progress if untreated, and raising thresholds for defining ‘abnormal.’ As Otis Brawley of the American Cancer Society has stated, “We need a 21st-century definition of cancer instead of a 19th-century definition of cancer, which is what we’ve been using.”
DCIS or ductal carcinoma in situ
A research letter published online first in JAMA Internal Medicine shows the importance of the words we use in health care – especially with a diagnosis of an abnormal finding.
There’s been discussion of removing the word carcinoma from the diagnosis of ductal carcinoma in situ (or DCIS), and this work may fuel further discussion along those lines.
The researchers went into their survey with this hypothesis:
Ductal carcinoma in situ (DCIS) is a preinvasive malignancy of the breast and is diagnosed in more than 50 000 women a year in the United States. It is treated with either mastectomy or lumpectomy, often combined with radiation therapy. In cases of low-grade DCIS, studies suggest that if progression occurs, it does so within a time frame of 5 to 40 years and possibly in only 20% of DCIS cases.This raises the possibility that some cases of DCIS will follow an indolent course that will not attain clinical significance during the patient’s lifetime. Accordingly, watchful waiting has been proposed as a reasonable option for DCIS, akin to what is currently offered for patients with early stage prostate cancer; however, how to implement such a strategy is unclear.
Many women are unable to distinguish between preinvasive and invasive cancer and often overestimate the implications of a DCIS diagnosis. These misperceptions may drive patients’ willingness for invasive treatments. Health care providers’ communication with their patients about DCIS plays an important role in patients understanding the risks of their diagnosis. Terms such as carcinoma, stage-0 cancer, and noninvasive cancer are commonly used to describe DCIS and may further contribute to the confusion engendered in many patients. Given the inconsistent terminology used for DCIS, we hypothesized that when DCIS is described without the term cancer, women would be more likely to opt for noninvasive approaches such as medication or watchful waiting in place of surgery.
Then they surveyed nearly 400 women who didn’t have breast cancer. They were given three scenarios that described DCIS three different ways:
The treatment options presented were identical. Then women were asked for their treatment preference. Results:
“We found that when DCIS is framed as a high-risk condition rather than as cancer, more than 65% of women opt for nonsurgical treatments. These results suggest that many women may prefer nonsurgical options if allowed to weigh each choice and its attendant risks. Our survey specifically reminded the participants that risks and benefits were the same among all 3 scenarios; however, excluding the word cancer in the diagnosis shifted many participants to choose a less-invasive option.”
This study was chided by Paul Raeburn of the Knight Science Journalism Tracker. He wrote, “Does it take a study to find out that “cancer” is a scary word? ”
A paper in the BMJ was entitled, “Thyroid cancer: zealous imaging has increased detection and treatment of low risk tumours.” In this case, too, authors call for a different name for abnormal findings:
“A change in nomenclature for low risk cancers, as we have suggested, here, could help this and make it easier to give patients the choice of active surveillance.”
Also recently, in JAMA Internal Medicine, editor Rita Redberg, MD wrote “My Thyroid Story.” She reflected on her own diagnosis with thyroid cancer and her subsequent thyroid surgery. Excerpt:
“As a physician, I knew back then that thyroid cancer is generally benign. But hearing a diagnosis of cancer makes most people, including me at the time, not consider whether there is evidence to support or to question the need for aggressive treatments. We were all, my physicians and I, well intentioned and operating under the best information available, but I do not think I took the time to truly weigh the potential benefits and harms of thyroidectomy. Better data for such decisions and encouragement of opportunities for such discussion would be welcomed by patients and their physicians.”
Dartmouth’s Gil Welch has been writing about this issue for years. In his book, “Overdiagnosed: Making People Sick in the Pursuit of Health,” he wrote:
“… researchers concluded that virtually everybody would have some evidence of thyroid cancer if examined carefully enough.”
And in a JAMA paper in 2006, “Increasing incidence of thyroid cancer in the United States, 1973-2002,” he and a co-author concluded that the increase was not a jump in the true occurrence of thyroid cancer, but rather, finding earlier abnormalities that might turn out to be benign.
Overdiagnosis. Overtreatment. Impact on treatment decisions. Yes, the wording matters.
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