ENDO 2017 & American Association of Endocrine Surgeons:

When is Thyroid Cancer Not Cancer?

To address overdiagnosis and treatment of noninvasive thyroid neoplasms, a landmark retrospective study,1 published in 2016, provided confirmation that encapsulated follicular variant of papillary thyroid carcinomas had a very low likelihood of progression for this increasingly common thyroid diagnosis. 

Accordingly, a new term for encapsulated follicular variant of papillary thyroid carcinoma has been introduced as noninvasive follicular thyroid neoplasm with papillary-like nuclear features, or NIFTP, according to newly released American Thyroid Association guidelines to avoid unnecessary, even unwarranted surgery.2

Three perspectives on this change in nomenclature were shared by leading authorities in thyroid cancer, during a session at ENDO 2017, the Endocrine Society’s 99th Annual Meeting and Expo, in Orlando, Florida.

American Thyroid Association Guidelines revise classification of common thyroid neoplasms as non-cancerous.

New Diagnosis Reduces Unneeded Treatment

“A significant group of tumors that we previously called carcinomas, have now lost the diagnosis of ‘cancer,’ and their treatment can be deescalated or minimized,” Yuri E. Nikiforov, MD, PhD, a pioneer in the research leading to this name change, told EndocrineWeb.

"This change in nomenclature more accurately characterizes the tissue pathology," said Dr. Nikiforov, director, of molecular and genomic pathology at the University of Pittsburgh Medical Center in Pennsylvania, and reflects the thyroid nodule's very low risk of recurrence.3

We are only now beginning to understand the full scope and impact of this name change, on patients' overall well-being, level of distress,  behavior as well as physician treatment decisions, insurer actions, and even, with policymakers,4-6 said Anna M. Sawka, MD, PhD, associate professor at the University of Toronto, in Canada. When people were asked what they thought of when they heard the word, cancer, their first response was emotional—the word elicited fear, trauma, and death. 

Use of Registries Encouraged for Active Surveillance

“We cannot assume that patients will necessarily have no stress associated a cancer diagnosis as compared to being told they have NIFTP,” Dr. Sawka told EndocrineWeb. “We need to study patient outcomes with registries and disease outcomes, prospectively, not leaving anything uncounted.”

“This represents an excellent opportunity to actually see what happens when we make this big name change for patients, the disease burden, and the whole big picture,” she continued.

In April 2016, the unthinkable happened. The New York Times published a piece stating that encapsulated follicular variant of papillary thyroid carcinomas was not cancer at all.The very next day, Dr. Lee got 37 phone calls from patients asking whether they had gotten unnecessary surgery.

It is, therefore, critical that the pathologist be on board with an NIFTP diagnosis since a thyroid cancer diagnosis may set in motion very different responses in patient behavior and perceived health, insurability, and more,8 said Stephanie L. Lee, MD, PhD, director of the Thyroid Health Center and the Thyroid Nodule and Cancer Research Center at Boston Medical Center, in Boston, Massachusetts, in recounting her experience in handling the fallout of this name change at her institution.

Clinician Uncertainty, Patient Anxiety Persists

Clearly, a need to build confidence in an NIFTP among endocrinologists remains, said Dr. Lee. This was highlighted in the study conducted by Dr. Nikiforov and his research team, in which experts evaluated 100 samples, but fewer than 4.6% of the cases yielded greater than 90% agreement.1

Clinicians might embrace the change in nomenclature more readily if they were made aware of the impact a cancer diagnosis may have on their patients. Patient responses based on responses from 2 surveys5,6 were as follows:

  • 33% said it had affected their body image
  • 27% reported an impact on their reproductive plans
  • 21% percent were affected economically
  • 62% reporting difficulties getting life insurance after a diagnosis.
  • Employability was also mentioned as a common concern

In addition, a wide range of behavioral changes was reported among patients following a thyroid cancer diagnosis, including increased smoking and alcohol, a rise in body weight, and ultimately a 3 to 13-fold increase in the risk of dying.5,6 These changes in behavior exerted a greater risk to women’s health than a breast cancer (ductal carcinoma in situ) diagnosis.4

While agreement on pathology is evolving, a clearer understanding of recurrence rates is still needed by clinicians; an NIFTP diagnosis will undoubtedly reduce the psychological and economic burden among patients when receiving a noncancer diagnosis,8 said Dr. Lee.

Even as uncertainties may remain for clinicians with regard to the accuracy of an NIFTP diagnosis, there are major implications for patients to hear they have cancer, even a benign form, said Dr. Lee, and being able to avoid such a label would be very beneficial over the long-term.8

Ultimately, a good pathological diagnosis offers an opportunity to reduce thyroid cancer overtreatment for some patients, she concluded.

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