What’s in a name? Everything, it seems, when the terminology used to describe small, low-risk papillary thyroid cancer appears to be related to perceptions of disease and likely treatment preferences.
According to an Australian study in which healthy participants were presented with hypothetical clinical scenarios, people react differently to the terms papillary thyroid cancer, papillary lesion or abnormal cells.
The study of 550 adults found 19.6% of people presented with a hypothetical diagnosis of papillary thyroid cancer would choose total thyroidectomy, 25.8% would choose hemithyroidectomy and 54.5% would choose active surveillance.
However when the diagnosis was given as papillary lesion or abnormal cells, the preference for surgery dropped by about half to 10.5% and 10.9% for total thyroidectomy or 13.1% and 15.8% respectively for hemithyroidectomy.
The treatment choice of active surveillance rose to 76.3% and 73.3% respectively when cancer was not mentioned.
Anxiety scores were also higher for people with a hypothetical diagnosis of papillary thyroid cancer and there were higher levels of anticipated treatment-related anxiety.
The researchers said removing cancer terminology from lesions with low malignant potential such as papillary thyroid cancer, DCIS and localised prostate cancer has been proposed to reduce overdiagnosis and overtreatment.
“Changing the terminology of these proposed lesions, however, would not be a straightforward process because cancer is typically defined by pathologic features and behaviours,” the study authors said.
However it was possible – as in the case of the noninvasive encapsulated follicular variant of papillary thyroid cancer.
Researcher Brooke Nickel, from the Sydney School of Public Health, told the limbic the preference for active surveillance was one of the most interesting findings from the study.
“It is one of those things that in this condition specifically, the lower risk thyroid cancer, that you are able to see that the risks don’t change too much between the three treatment options we presented.”
“People picked up on that and thought: If my outcomes of living for the next 20 years with this condition are going to be the same if I choose surgery or not, then why would I choose the more aggressive treatment?”
She said it was clear that people react differently to a diagnosis when they hear the word cancer.
“We’re not telling people they can’t say cancer. We’re just trying to make them aware of the impact the term cancer has on anxiety and treatment preferences and in this condition, might be driving the potential for overdiagnosis and over treatment.”
An Invited Commentary in JAMA Otolaryngology-Head and Neck Surgery said patients and clinicians still need to be reassured about active surveillance.
“Historical precedent is no longer an excuse to accept the status quo in the face of convincing data that support the use of less-aggressive interventions for these tumors.”
“Perhaps this issue also requires us to change terminology to more accurately reflect innocuous biological behavior and the framework of how we counsel patients accordingly.”
In a related BMJ article, some of the authors of the Australian study said removing the cancer label from low risk conditions will ‘create controversy and take time’.
“Although it remains unclear exactly how best to move forward, we cannot continue to tell many people they have cancer when that label may be doing them more harm than good.”