Thyroid Cancer Name Change: Proposal or Done Deal?

Fran Lowry

April 20, 2016

The recent reclassification of a type of thyroid cancer as a noncancer will have important and positive implications for patients, clinicians, and other stakeholders, experts say.

This "paradigm shift" will reduce overtreatment, remove the burden and stigma of an unnecessary cancer diagnosis, and save healthcare costs, according to clinicians familiar with the reclassification.

From now on, what was formerly called encapsulated follicular variant of papillary thyroid carcinoma (EFVPTC) is to be called noninvasive follicular thyroid neoplasm with papillary-like nuclear features (NIFTP), say the authors of a study published online April 14 in JAMA Oncology and reported by Medscape Medical News.

The change in nomenclature reflects the facts that the disease is noninvasive nature and that it has a low risk for recurrence.

In an editorial that accompanied the report, Kepal N. Patel, MD, from the Division of Endocrine Surgery, New York University Langone Medical Center, New York City, writes that given the fact that EFVPTC accounts for 20% of thyroid cancer, the "change in nomenclature could affect the clinical care and management of more than 45,000 patients worldwide per year."

But a prominent endocrinologist was cautious about the change and said that the reclassification is a "proposal."

"Many of us think that it is a very reasonable proposal based on the data that have been presented," said Victor J. Bernet, MD, chair of endocrinology at the Mayo Clinic, Jacksonville, Florida, and chief operating officer for the American Thyroid Association (ATA).

But the data are not abundant, he suggested.

"We'd love to see a little more data, and I'm talking for the ATA now. A lot of people think this is a great piece of work, and in fact we know most of the authors because they are ATA members, but it would be nice to see the data a little bit more robust," he said.

The new study has limitations, Dr Bernet told Medscape Medical News.

"It is one article. It's a well-done article, but there weren't as many absolute controls as one would like," he said.

Dr Bernet said the change is not definitive at this point.

"I would refer to this as a proposed reclassification, rather than saying it has been absolutely accepted. It has been published in a solid journal, but I get nervous when I see something that gets out to the public and it sounds like it's definitive. You have to be careful," Dr Bernet said.

Another expert suggested that the name change was in the process of widely taking root.

The reclassification has been supported by at least nine major organizations, pointed out Gregory W. Randolph, MD, director of thyroid and parathyroid endocrine surgery at Massachusetts Eye and Ear Infirmary, Harvard Medical School, Boston. Dr Randolph is one of the coauthors of the reclassification study.

Dr Gregory Randolph

The new designation has been endorsed by the American Academy of Otolaryngology Head and Neck Surgery, the American Head and Neck Society, the British Association of Endocrine and Thyroid Surgeons, the Japanese Thyroid Association, the International Neural Monitoring Study Group, the World Congress on Thyroid Cancer, the Latin American Thyroid Association, the Brazilian Society of Head and Neck Surgery, and the Brazilian Society of Endocrinology and Metabolism.

"The fact that all of these organizations are endorsing this name change underscores the widespread appreciation of this lesion's clinical indolence and the important implications this name change conveys," Dr Randolph told Medscape Medical News.

Name Change Based on Study

The revision has been spearheaded by Yuri E. Nikiforov, MD, PhD, University of Pittsburgh, who is the lead author of the new report.

Dr Yuri Nikiforov

Dr Nikiforov and colleagues reviewed 268 tumor samples diagnosed as EFVPTC from 13 institutions in seven countries and established diagnostic criteria, including cellular features, degree of tumor invasion, and other factors. In 109 patients with noninvasive EFVPTCs, there were no recurrences or other manifestations of the disease at a median follow-up of 13 years.

"We saw that if there was no invasion, nothing happened to these patients, even if they were left untreated, but if invasion was present, then this is a completely different situation. These patients whose tumors show invasion may die of the disease, they have a true cancer," he told Medscape Medical News.

The benefits of the nomenclature change are great, he said.

"It will prevent overtreatment, prevent psychological stress of carrying the diagnosis of cancer, and will prevent excessive checkups for patients who don't need them," Dr Nikiforov said.

He also suggested that the data in favor of a change were compelling.

"What prompted me and others to look at the subject was that we knew there is a class of thyroid tumors that have pathologically a very low malignant look or grade, and yet we were calling them cancer. The data were accumulating indicating that on follow-up, patients do not have any complications, do not have metastatic growth, do not have recurrence, do not die from this tumor, and yet they were being treated as having cancer because the diagnosis was cancer," he said.

Not All Thyroid Cancers are Nonancers

Dr Nikiforov emphasized that the subset of thyroid tumor that was being renamed a noncancer has definite characteristics and must not be confused with other thyroid cancers.

"About 20% of thyroid cancers in the US and Europe belong to this NIFTP type, and 80% are cancer. This is very important, because some of the patient advocates and survivors are telling us that there is some confusion among patients now that this has received media attention, because they think that all thyroid cancers are not cancers. Our reclassification does not mean that all thyroid cancers are not cancer; it means that there is one group of tumors that have very specific features which we used to call cancer that now can be called noncancers," he said.

Dr Randolph said that the terminology change to NIFTP will result in substantial cost savings.

"Significant cost reductions could be obtained by the avoidance of complete thyroidectomy and avoidance of radioactive iodine treatment, both of which are also associated with small, although real, risks of complications, such as laryngeal nerve injury and hypoparathyroidism," said Dr Randolph.

Costs would also be reduced through deescalation of long-term surveillance and reduced office visits, as well as unnecessary monitoring with radiographic and biochemical testing, he said.

Surgery Still Needed

Although the reclassification takes away the burden of being diagnosed with cancer, it will not obviate the need for surgery.

Hassan Arshad, MD, a head and neck cancer surgeon from Roswell Park Cancer Institute, Buffalo, New York, told Medscape Medical News that a correct diagnosis still depends on removal or partial removal of the thyroid gland.

Dr Hassan Arshad

"The tricky part about this is that the diagnosis is only made after surgery. That's the only way these NIFTPs can be diagnosed," Dr Arshad said.

"But, as the paper by Nikiforov et al showed, limited surgery, where only half of the thyroid was removed, seemed to be enough for the tumor not to return. So this is a diagnosis that you couldn't make on a needle biopsy, but that said, I would definitely feel more comfortable not doing a more aggressive surgery in these patients, and also not recommending radioactive iodine," he said.

An important aspect of the reclassification is the removal of the stigma and angst of a cancer diagnosis, Guy Maytal, MD, medical director of ambulatory psychiatry at Massachusetts General Hospital and assistant professor at Harvard Medical School, told Medscape Medical News.

Dr Guy Maytal

Dr Maytal was invited by the panel of pathologists and clinicians who reclassified EFVPTC as NIFTP to provide feedback and advice regarding the psychological aspects of being diagnosed with cancer.

"This group was very concerned about the psychological aspects, and that is why I was asked to participate," he said.

"The moment a person hears the word 'cancer,' they hear the word 'death,' even though there are many things called cancer that do not kill people. The prototypical one is low-grade prostate cancer. If you are a patient or a loved one, you pretty much stop listening after you hear that word. And if you are a clinician, your hands are tied, because it is very hard to say to someone, 'You have cancer; we're just going to watch it for a few years,' and yet the patient feels that they are walking around thinking they have death in their body. That is a very challenging clinical moment," Dr Maytal said.

People previously diagnosed with EFVPTC who are now reclassified as having NIFTP may be upset, he noted.

"But my guess is most will not be, because the original diagnosis was made using the best information that was available at the time. They did have cancer, because that is what we called it. In science, there is always progress. Does this mean that we shouldn't have done radical mastectomies for women with early-stage breast cancer 30 years ago? No, we did that because that was what was known. You make the best decision you can with the information you have at the time, and then you move forward," Dr Maytal said.

He urged patients who have been diagnosed with EFVPTC to talk to their physician for reassurance.

"This doesn't invalidate what has come before. Like all things in medicine, we keep trying to move things forward towards better and better care," Dr Maytal said.

Physicians whose patients have been diagnosed with EFVPTC who may now be regarded as having NIFTP must use caution and make sure that the lesion is, indeed, benign, Nicole A. Cipriani, MD, assistant professor of pathology and medical director of gross pathology at the University of Chicago Medicine and Biological Sciences, told Medscape Medical News.

Dr Nicole Cipriani

"There is a suggestion that patients with this new diagnosis should be informed that we used to call this cancer but now we know that it is benign. This could be important for patient quality of life, but what is more important is to accurately review cases of possible NIFTP to make sure that tumors originally called 'follicular variant of papillary carcinoma' meet the criteria outlined by the proposal. I don't think that clinicians should just read this diagnosis in a report and then go back to the patient and say it's benign without a critical evaluation of the report and or slides," Dr Cipriani said.

Pathologists are encouraged to review the slides to make sure that the diagnostic criteria that have been published by Dr Nikiforov and colleagues are fulfilled. "It is the encapsulated variant that we think is benign, but there is also the infiltrative variant and the encapsulated variant that does have capsular invasion or vascular invasion and does have a risk for metastasis," she emphasized.

Dr Nikiforov acts as a consultant for Quest Diagnostics. The other physicians quoted in this article have reported no relevant financial relationships.

JAMA Oncol. Published online April 14, 2016. Full text, Editorial

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