Avoiding the 'C' Word for Low-Risk Thyroid Cancer

Fran Lowry

August 28, 2018

Removing the word "cancer" from the description of low-risk papillary thyroid cancer (PTC) may cause patients diagnosed with the disease to choose less aggressive treatment and may also lessen their anxiety, a new study suggests.

When participants were offered three hypothetical scenarios about PTC, they were more likely to pick nonsurgical options, such as active surveillance, when the word "cancer" was omitted from the disease description.

They also reported feeling less anxious about receiving the diagnosis.

The findings were published online August 23 in JAMA Otolaryngology―Head and Neck Surgery.

Currently, despite studies showing that PTC has a benign course and that active surveillance is a viable option for its management, many patients choose to undergo total or partial thyroidectomy, a costly option that comes with surgical risk, lifetime medication management with thyroid hormone, and anxiety.

Taking the word "cancer" out of the terminology for PTC allows patients to hear what their treatment options are instead of freezing in fear at the mention of cancer, author Juan P. Brito, MD, Mayo Clinic, Rochester, Minnesota, comments in a JAMA podcast.

"In daily practice, it is very difficult to have very good conversations with patients when you start with the word 'cancer,' " he said.

"At that moment, the patient's anxiety and fear are the dominating factors that drive decision making, and you do not want that for your patients. You want your patients to have a good environment in which to explore which treatments make sense for them and make sure that their decisions are not a reflection of anxiety of fear," Brito said.

Change in Terminology

In 2016, as reported by Medscape Medical News, an international panel of pathologists and clinicians changed the name of encapsulated follicular variant of papillary thyroid carcinoma (EFVPTC), a type of noninvasive cancer that has a low risk for recurrence, to noninvasive follicular thyroid neoplasm with papillary-like nuclear features (NIFTP).

Experts believed that changing the nomenclature would eliminate the psychological impact of receiving a cancer diagnosis and also decrease overtreatment, costs, and risks associated with more aggressive management.

In the current study, the investigators presented 550 adults who had no history of thyroid cancer with a clinically realistic scenario involving a diagnosis of PTC.

The condition was described using the following terms:

  • Papillary thyroid cancer

  • Papillary lesion

  • Abnormal cells

The study participants were randomly assigned so as to be shown these terms arranged in different orders. A third of participants saw the cancer term "papillary thyroid cancer" first, a third saw "papillary lesion" first, and a third saw "abnormal cells" first.

Each time a participant saw one of the three terms, the researchers recorded which of the following treatment options he or she would choose:

  • Total thyroidectomy

  • Hemithyroidectomy

  • Active surveillance

Levels of anxiety among the participants were measured on a visual analogue scale.

Participants were given extensive information about prognosis and treatment options, including the chance of the tumor growing and becoming invasive and the chance of dying from the condition over the next 20 years, depending on which treatment option was selected.

"We tried to give them as much information as we could to help them have the best available evidence in order to make the decision about what treatment option they would prefer," explained lead author Brooke Nickel, BSc, the University of Sydney, Australia, in the JAMA podcast

A higher proportion of participants (n = 108; 19.6%) chose total thyroidectomy as treatment when the term "papillary thyroid cancer" was used to describe the condition than participants who chose total thyroidectomy when the terms "papillary lesion" (n = 58; 10.5%) or "abnormal cells" (n = 60; 10.9%) was used to describe the condition.

In addition, participants reported a significantly higher level of anxiety when the diagnosis was given using the term "papillary thyroid cancer" compared to the other two terms.

The order in which the participants viewed the different terms was also a factor in their treatment preferences.

Among the 186 participants who saw the term "papillary thyroid cancer" first, 60 (32.3%) chose surgery. By comparison, 46 of 191 participants (24.1%) chose surgery after seeing the term "papillary lesion" first (risk ratio [RR], 0.73), and 47 of 173 participants (27.2%) chose surgery after seeing the term "abnormal cells" first (RR, 0.82).

Seeng the term "papillary thyroid cancer" first was also associated with significantly higher levels of anxiety among participants (mean, 7.8 of 11 points), compared with seeing the term "papillary lesion" (mean, 7.0 of 11 points; mean difference, -0.8, 95% confidence interval [CI], -1.3 to -0.3) or the term "abnormal cells" (mean, 7.3 of 11 points; mean difference, -0.5; 95% CI, -1.0 to 0.01).

"These findings indicate the importance of discussing the implications of papillary thyroid cancer with patients in order to help alleviate any potential associated anxiety," Nickel commented in the JAMA podcast.

"Discussing the low-risk nature of the condition and the favorable prognosis, even though it is called cancer, as well as presenting the treatment options and their associated risks and advantages, are all essential so that individuals can decide what is important to them and make an informed decision about their care," Nickel said.

The study also revealed the overall interest in active surveillance was 72%, regardless of which term was used. "This was higher than we expected," Nickel said.

Writing in an accompanying editorial, Andrew G. Shuman, MD, University of Michigan Medical School, Ann Arbor, congratulates the authors for their "thoughtfully designed study that makes a clear case for how evolving nomenclature may contribute to patient reassurance and treatment de-escalation...."

Shuman goes on to caution that thyroid cancer is not being erased from the lexicon.

"Thyroid malignant neoplasms still exist that live up to their title and are a considerable source of mortality and morbidity. We are challenged to determine how and where to draw the line between these true cancers and the rest," he writes.

However, the editorialist also makes the point that, despite the methodologic strengths of the study, a 12-minute survey describing a hypothetical diagnosis "is very different from the lived patient experience...."

Still, the broad lessons from this study should prompt experts to reexamine how words and classifications dictate perspectives and management of indolent malignant neoplasms, Shuman writes.

"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," he concludes.

The study was funded by a Sydney Catalyst Research Scholar Award to Brooke Nickel, the Karl-Erivan Haub Family Career Development Award in Cancer Research at the Mayo Clinic to Dr Bito, and the National Health and Medical Research Council. Dr Bito, Brooke Nickel, and Dr Shuman have disclosed no relevant financial relationships.

JAMA Otolaryngol Head Neck Surg. Published online August 23, 2018. Full text, Editorial


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