Meeting NewsPerspective

Removing ‘cancer’ label from low-risk thyroid tumors may address overdiagnosis, overtreatment

ORLANDO, Fla. — Clinical journals have reported recently on the possible overdiagnosis and overtreatment of low-risk thyroid cancers, particularly papillary thyroid carcinoma. During a session convened at the Endocrine Society Annual Meeting, experts presented perspectives on the possible effects of assigning at least some of these cases a noncancer designation.

“This has been really popularized — when a cancer is diagnosed that would otherwise not go on to cause symptoms or death,” Anna M. Sawka, MD, PhD, FRCPC, associate professor, department of medicine, division of endocrinology, Toronto General Hospital, University Health Network, said during the presentation. “What we’re interested in here with overdiagnosis are the very sloping, progressively slow-growing cancers in patients who are unlikely to die of their disease or become symptomatic.”

Implications of name change

Findings published in JAMA Oncology in 2016 suggested that noninvasive papillary thyroid carcinoma be reclassified as noninvasive follicular thyroid neoplasm with papillary-like nuclear features, or NIFTP, to redefine the disease and remove the cancer label.

According to study background, a body of evidence suggests that the encapsulated follicular variant of papillary thyroid cancer (EFVPTC) is mostly indolent, although patients with the condition are currently treated as having conventional thyroid cancer.

One of the study researchers, Yuri E. Nikiforov, MD, PhD, vice chair for molecular pathology and director of the division of molecular and genomic pathology at the University of Pittsburgh Medical Center, said during his presentation that diagnostic criteria for NIFTP include encapsulation or clear demarcation, follicular growth pattern nuclear features of PTC without invasion, and no aggressive histology.

In the study, Nikiforov and colleagues evaluated 109 adults with noninvasive EFVPTC (mean follow-up, 14.4 years) and 101 adults with invasive EFVPTC (mean follow-up, 5.6 years) to determine the frequency of adverse outcomes and recurrence.

“What this paper did was subcategorize these two and said that nonencapsulated or infiltrative [disease] is more like the classical PTC, whereas the encapsulated type is more like follicular adenoma or follicular carcinoma,” session moderator Bryan Haugen, MD, an investigator at the University of Colorado Cancer Center and head of the division of endocrine, metabolism and diabetes at the University of Colorado School of Medicine, said during the presentation.

At the end of follow-up, all patients with noninvasive EFVPTC remained alive without evidence of disease, and none received radioactive iodine ablation. An adverse event was experienced by 12 patients with invasive EFVPTC, including two deaths.

“The new name that was introduced was NIFTP, and it has very strict diagnostic criteria,” Haugen said. “There can’t be capsular or vascular invasion; I think vascular invasion is very important to look at. Another estimate the group did was [to determine] how many cases would we see a year in the United States. The estimate was around 9,000 to 10,000 cases worldwide.”

Clinician, patient perspectives

Whether a name change would relieve some of the distress a patient feels upon receiving a diagnosis remains in question, according to the speakers.

“In terms of favoring ‘neoplasm’ in the name, you’re removing the term ‘cancer,’” Sawka said. “Hypothetically, it could reduce patient anxiety, reduce risk perceptions, reduce overtreatment, reduce health care costs, increase insurability of patients and, depending on how often it’s diagnosed, it may actually make some improvements in the cancer incidence rates.”

Stephanie L. Lee, MD, PhD, associate professor of medicine at Boston University School of Medicine and associate chief in the section of endocrinology, nutrition and diabetes at Boston Medical Center, agreed.

A name change “would reduce the adverse impact of getting a cancer diagnosis, but there are still questions,” said Lee, an Endocrine Today Editorial Board member. “How do we follow the NIFTP patients? How do we do surveillance? Are we ethically obliged to review all of them on pathology, or should we do it on a case-by-case basis?”

Sawka said a name change many not improve patient outcomes or reduce health care utilization because the criteria for treating low-risk thyroid cancer have already changed, and hemithyroidectomy is now an acceptable option for treatment.

“Another concern, as reflected by some of the literature in other disease sites, is whether we underappreciate and downplay the emotional distress experienced by patients and deny them access to supported care,” Sawka said.

Lee said numerous questions remain about what the name change could mean from a patient perspective, as well as from a physician perspective.

One major question is how to follow patients who are classified as having NIFTP. Lee said most times a patient is told they have a benign tumor, follow-up does not occur, which does not allow for surveillance or long-term outcomes for recurrence rates.

“There’s uncertainty for physicians about the effects of a diagnosis of NIFTP tumors and the potential for malignant behavior,” she said. “It’s important that you make the diagnosis because we do not want to reduce treatment or diagnosis of patients with this tumor; but it’s also critical that the diagnosis is right. We are including some people into the NIFTP bucket who may have invasive EFVPTC, and [physicians] need to talk to a pathologist to make sure that they are following [the JAMA Oncology paper] recommendations.”

Sawka said quantitative data are needed to validate the potential impact on cancer incidence and cancer disease control, mortality, quality-of-life and psychosocial outcomes, treatment and health care utilization costs.

“Qualitative data is also needed to explore and inform patient perspective associated with a terminology change,” she said. – by Amber Cox

Reference s :

Lee SL. The clinician and patient perspective.

Nikiforov YE. The pathology and molecular genetic perspective.

Sawka AM. The epidemiology and outcomes perspective. Presented at: The Endocrine Society Annual Meeting; April 1-4, 2017; Orlando, Fla.

Nikiforov YE, et al. JAMA Oncol. 2016;doi:10.1001/jamaoncol.2016.0386.

Disclosure: The researchers report no relevant financial disclosures.

ORLANDO, Fla. — Clinical journals have reported recently on the possible overdiagnosis and overtreatment of low-risk thyroid cancers, particularly papillary thyroid carcinoma. During a session convened at the Endocrine Society Annual Meeting, experts presented perspectives on the possible effects of assigning at least some of these cases a noncancer designation.

“This has been really popularized — when a cancer is diagnosed that would otherwise not go on to cause symptoms or death,” Anna M. Sawka, MD, PhD, FRCPC, associate professor, department of medicine, division of endocrinology, Toronto General Hospital, University Health Network, said during the presentation. “What we’re interested in here with overdiagnosis are the very sloping, progressively slow-growing cancers in patients who are unlikely to die of their disease or become symptomatic.”

Implications of name change

Findings published in JAMA Oncology in 2016 suggested that noninvasive papillary thyroid carcinoma be reclassified as noninvasive follicular thyroid neoplasm with papillary-like nuclear features, or NIFTP, to redefine the disease and remove the cancer label.

According to study background, a body of evidence suggests that the encapsulated follicular variant of papillary thyroid cancer (EFVPTC) is mostly indolent, although patients with the condition are currently treated as having conventional thyroid cancer.

One of the study researchers, Yuri E. Nikiforov, MD, PhD, vice chair for molecular pathology and director of the division of molecular and genomic pathology at the University of Pittsburgh Medical Center, said during his presentation that diagnostic criteria for NIFTP include encapsulation or clear demarcation, follicular growth pattern nuclear features of PTC without invasion, and no aggressive histology.

In the study, Nikiforov and colleagues evaluated 109 adults with noninvasive EFVPTC (mean follow-up, 14.4 years) and 101 adults with invasive EFVPTC (mean follow-up, 5.6 years) to determine the frequency of adverse outcomes and recurrence.

“What this paper did was subcategorize these two and said that nonencapsulated or infiltrative [disease] is more like the classical PTC, whereas the encapsulated type is more like follicular adenoma or follicular carcinoma,” session moderator Bryan Haugen, MD, an investigator at the University of Colorado Cancer Center and head of the division of endocrine, metabolism and diabetes at the University of Colorado School of Medicine, said during the presentation.

At the end of follow-up, all patients with noninvasive EFVPTC remained alive without evidence of disease, and none received radioactive iodine ablation. An adverse event was experienced by 12 patients with invasive EFVPTC, including two deaths.

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“The new name that was introduced was NIFTP, and it has very strict diagnostic criteria,” Haugen said. “There can’t be capsular or vascular invasion; I think vascular invasion is very important to look at. Another estimate the group did was [to determine] how many cases would we see a year in the United States. The estimate was around 9,000 to 10,000 cases worldwide.”

Clinician, patient perspectives

Whether a name change would relieve some of the distress a patient feels upon receiving a diagnosis remains in question, according to the speakers.

“In terms of favoring ‘neoplasm’ in the name, you’re removing the term ‘cancer,’” Sawka said. “Hypothetically, it could reduce patient anxiety, reduce risk perceptions, reduce overtreatment, reduce health care costs, increase insurability of patients and, depending on how often it’s diagnosed, it may actually make some improvements in the cancer incidence rates.”

Stephanie L. Lee, MD, PhD, associate professor of medicine at Boston University School of Medicine and associate chief in the section of endocrinology, nutrition and diabetes at Boston Medical Center, agreed.

A name change “would reduce the adverse impact of getting a cancer diagnosis, but there are still questions,” said Lee, an Endocrine Today Editorial Board member. “How do we follow the NIFTP patients? How do we do surveillance? Are we ethically obliged to review all of them on pathology, or should we do it on a case-by-case basis?”

Sawka said a name change many not improve patient outcomes or reduce health care utilization because the criteria for treating low-risk thyroid cancer have already changed, and hemithyroidectomy is now an acceptable option for treatment.

“Another concern, as reflected by some of the literature in other disease sites, is whether we underappreciate and downplay the emotional distress experienced by patients and deny them access to supported care,” Sawka said.

Lee said numerous questions remain about what the name change could mean from a patient perspective, as well as from a physician perspective.

One major question is how to follow patients who are classified as having NIFTP. Lee said most times a patient is told they have a benign tumor, follow-up does not occur, which does not allow for surveillance or long-term outcomes for recurrence rates.

“There’s uncertainty for physicians about the effects of a diagnosis of NIFTP tumors and the potential for malignant behavior,” she said. “It’s important that you make the diagnosis because we do not want to reduce treatment or diagnosis of patients with this tumor; but it’s also critical that the diagnosis is right. We are including some people into the NIFTP bucket who may have invasive EFVPTC, and [physicians] need to talk to a pathologist to make sure that they are following [the JAMA Oncology paper] recommendations.”

Sawka said quantitative data are needed to validate the potential impact on cancer incidence and cancer disease control, mortality, quality-of-life and psychosocial outcomes, treatment and health care utilization costs.

“Qualitative data is also needed to explore and inform patient perspective associated with a terminology change,” she said. – by Amber Cox

Reference s :

Lee SL. The clinician and patient perspective.

Nikiforov YE. The pathology and molecular genetic perspective.

Sawka AM. The epidemiology and outcomes perspective. Presented at: The Endocrine Society Annual Meeting; April 1-4, 2017; Orlando, Fla.

Nikiforov YE, et al. JAMA Oncol. 2016;doi:10.1001/jamaoncol.2016.0386.

Disclosure: The researchers report no relevant financial disclosures.

    Perspective
    Megan Haymart

    Megan R. Haymart

    Last year, Nikiforov and team published a paper proposing a nomenclature revision for noninvasive encapsulated follicular variant of papillary thyroid cancer (Nikiforov YE, et al. JAMA Oncol. 2016;doi:10.1001/jamaoncol.2016.0386). WHO has now accepted this nomenclature change. Noninvasive encapsulated follicular variant of papillary thyroid cancer will now be labeled as “noninvasive follicular thyroid neoplasm with papillary-like nuclear features,” or NIFTP. In powerful presentations at the recent Endocrine Society meeting, Nikiforov presented his data while Sawka and Lee shed a practical light on the implications of the name change. Through historical data with other cancers, Sawka challenged the idea that a name change equates with less patient worry, and Lee highlighted the management obstacles to implementing this name change. Combined, they all gave a very balanced presentation on the issues at hand. Although this name change is occurring, only time will tell how this will affect cancer care in the community. In addition, since NIFTP is a pathologic diagnosis and there can be variability in pathology reads at different institutions, whether there is variability in the diagnosis of follicular variant of papillary thyroid cancer (invasive) vs NIFTP (non-invasive), remains to be seen. This potential for mislabeling a cancer as a now non-cancer entity highlights Lee’s unanswered question about optimal long-term surveillance for these patients.

    • Megan R. Haymart, MD
    • Endocrine Today Editorial Board Member
      Assistant Professor of Medicine
      Metabolism, Endocrinology and Diabetes and Hemetology/Oncology
      University of Michigan

    Disclosures: Haymart reports no relevant financial disclosures.

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