New Qualitative Study on Clinicians’ Views about Papillary Microcarcinoma: What’s in a Name?

A new qualitative study was published in Thyroid exploring the views of clinicians in Australia regarding papillary thyroid microcarcinoma.  The lead author of the article is Brooke Nickel, a public health researcher and PhD candidate from The University of Sydney. Other authors are Juan Brito, endocrinologist of the Mayo Clinic, USA;  Alexandra Barratt, University of Sydney; Susan Jordan, University of Queensland; Ray Moynihan, journalist and academic researcher, and Kirsten McCaffery of the University of Sydney.

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The study involved telephone interviews with 22 surgeons and endocrinologists who treat thyroid cancer patients.  The authors were interested in learning more about the attitudes of these clinicians regarding thyroid cancer overdiagnosis and treatment options for PMC (papillary microcarcinoma). PMCs (usually defined as papillary thyroid cancers which measure less than 1 cm) are regarded in the medical literature as being a major cause of overdiagnosis.  Many PMCs are discovered incidentally when patients undergo imaging for various medical conditions.  They are also found due to opportunistic ultrasound screening and subsequent fine needle aspiration.

In this writer’s view, the authors were able to parse a central issue with respect to finding solutions for the problem of overdiagnosis – people react negatively to the word “cancer”. As the authors iterate, observational studies have found that  patient outcomes for observing a properly selected microcarcinoma are statistically the same as outcomes for those who get immediate surgery:

 Evidence from observational studies show that the rate of loco-regional metastases with active surveillance is comparable to the rate that can occur after thyroid surgery; and that outcomes of surgery for PMC are the same whether surgery is undertaken immediately or after any progression (19-21, 28, 29). Furthermore, patients who develop local recurrence after surgery will still require a second surgery, and having only one surgery after progression may be better for patients since their final outcomes are similarly excellent. – Nickel et al., Thyroid (2017).

Yet most clinicians preferred treatment with surgery anyway. Interestingly, the physicians who were interviewed for the study were mostly aware of overdiagnosis and agreed that nodules under 1 cm should not be biopsied.  However, once a PMC was identified, most interviewees endorsed surgical intervention:

This implies that the driver to treat a biopsy-proven PMC is not really the underlying biology of the disease, but rather the knowledge of cancer and the perceived need that something has to be done. – Nickel et al., Thyroid (2017).

These findings are in accord by a recent qualitative study by Louise Davies and colleagues in which patients stated that they had been discouraged by their doctors and others from observing their thyroid cancers.

The authors suggest that patient decision-aids would be useful in helping both doctors and patients to quantify likely outcomes and to help patients to better understand their true risk.  Although physicians in the study did not favor a name change for thyroid papillary microcarcinoma, Nickel et al. opine that such a change in nomenclature might be a very effective strategy to mitigate overdiagnosis nonetheless.

College of American Pathologists Discourages Informing Most Non-Invasive EFVPTC Patients about NIFTP Reclassification

An article published recently in Cap Today Online, a publication of the College of American Pathologists, has opined that most patients who have already been treated for the type of thyroid cancer (noninvasive encapsulated follicular variant) need not be informed that their “cancer” has been reclassified.

The authors, Paul N. Staats, MD and Benjamin L. Witt, MD, write (responding to a hypothetical question) in their article  entitled “Cytopathology in Focus:  The Significance of NIFTP for Thyroid Cytology“:

Should I go back and reclassify all my old thyroid surgical pathology diagnoses?

Probably not. As most patients will have already received definitive treatment of their NIFTP, reclassification is unlikely to have an impact on their management going forward. For patients very recently diagnosed as noninvasive follicular variant PTC, discussion with the treating physicians about reclassification and management options for the patient may be appropriate. Our opinion is that patients were accurately diagnosed within the constructs of the time and that applying new or novel principles to prior diagnoses is not a worthwhile endeavor.

This opinion would appear to be in conflict with that of other authors. For example, an article published last year in Thyroid, advises physicians to retroactively inform such patients that their diagnosis has changed when possible.  See a summary of this article here.

As noted in that post, In the opinion of the Mt. Sinai team who wrote in Thyroid, pathologists are ethically obligated to review cases and contact patients about a  change in diagnosis.  The justification for the widespread adoption of this policy is that a cancer diagnosis causes “clinically significant” stress and also creates financial burdens for patients.  Perhaps most important of all is the primacy of a patient’s basic legal right to information about their own condition.

Thyca Denies the Existence of “Overdiagnosis” in a Public Statement

Over the past couple of weeks, print and television media have carried several stories about the overdiagnosis of thyroid cancer.  These stories were precipitated by an article about thyroid cancer in the New England Journal of Medicine which was published on August 18, 2016.  The article, Worldwide Thyroid Cancer Epidemic? The Increasing Impact of Overdiagnosis, was written by Salvatore Vaccarella, Ph.D., Silvia Franceschi, M.D., Freddie Bray, Ph.D., Christopher P. Wild, Ph.D., Martyn Plummer, Ph.D., and Luigino Dal Maso, Ph.D. They are epidemiologists from the World Health Organization’s International Agency for Research on Cancer in Lyon, France, and also the Cancer Epidemiology Unit of the Aviano National Cancer Institute in Aviano, Italy.

Their study found that more than 470,000 women and 90,000 men may have been overdiagnosed with thyroid cancer from 1987 to 2007, and articles and news reports appeared in many publications and television programs including NBC Nightly News.  Gina Kolata, of the New York Times, who had recently written another article about the NIFTP reclassification , has also written an article on the new study.  In the midst of all this media attention, The American Thyroid Association issued a statement in reference to the many articles and reports which appeared.  In their statement, the ATA appeared to endorse the conclusion of the NEJM article:

The AMERICAN THYROID ASSOCIATION recognizes that the recent increase in incidence of thyroid cancer in the United States and other countries is, in large part, due to the diagnosis of indolent papillary microcarcinomas that will never result in symptoms or death, and which only rarely will enlarge or spread beyond the thyroid gland. The issues surrounding this problem are twofold: First, medical imaging is identifying small nodules, many that are not clinically significant. Second, these small nodules are subjected to ultrasound-guided FNA, and about 5% reveal cancer cells. The usual next step is surgical removal, often followed by radioactive iodine and life-long thyroid hormone therapy. This approach is costly, creates risks from the treatments, and in most patients offers little or no benefit.

The ATA published a link to this  statement on their Facebook page. It was posted alongside a link to the NBC News report about the overdiagnosis of thyroid cancer, leaving little doubt about ATA endorsement of the study from the World Health Organization which had been published by the New England Journal of Medicine.  The NEJM article, along with the statement from the American Thyroid Association probably represent the most resounding statements yet from influential medical organizations in favor of the overwhelming evidence that thyroid cancer is being overdiagnosed.

On August 19th, THYCA, the Thyroid Cancer Survivor’s Association, which has been previously mentioned on this blog, issued a statement about the “overdiagnosis” articles which had appeared in the media.  Written by Gary Bloom, a survivor of papillary thyroid cancer and the executive director of the organization, the statement appeared on Twitter, Facebook, and THYCA’s website. It opens by asserting:

A number of news articles have recently emerged characterizing the epidemic of thyroid cancer as “overdiagnosis,” typically in reference to papillary microcarcinomas, which are small cancers. ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org), and many of the thousands of survivors we work with, are troubled by this characterization.

The point of these articles should be about the question of treatment, and potentially over-treatment. It is erroneous to classify the situation as one of overdiagnosis, and, more importantly, it is inappropriate to downplay the diagnosis of cancer to the public and those in the health care field. Knowledge is power, and even people with smaller cancers deserve to know what is going on with their bodies.

With his characterization of the concept of “overdiagnosis” as erroneous, Bloom seemed to be taking on the New England Journal of Medicine, the World Health Organization, and The American Thyroid Association in one fell swoop of denial.  For a long time, there have been feelings of anger within the thyroid cancer patient community over the dismissal of thyroid cancer as “the good cancer” by medical professionals, and by extension the mass media and the general public.  THYCA has worked to change this perception with various public campaigns. The characterization of thyroid cancer as “the good cancer” most likely emerged because of the excellent prognosis for most (but not all) thyroid cancers. Only recently has there been a recognition “from within” by endocrinologists and surgeons, that doctors should not refer to any cancer as being “good” to their patients.  For example, an editorial was published on this topic by Future Endocrinology in April of this year.

Whether the “good cancer” label is employed because of  over-confidence by doctors in their own interventions, thereby creating an under appreciation of the natural history of papillary thyroid cancer; or perhaps even due to the sexism of many physicians towards their predominantly female population of patients is not entirely clear.  However, the feelings and experiences of thyroid cancer patients have received a great deal of attention in medical journals over the past two or three years.  The dominant finding of most of these academic articles have contradicted  popular perceptions about thyroid cancer.  In fact,  the research has shown that patients suffer both psychologically and physically at a level on par with those who have cancers which are statistically more lethal.  Therefore, an obvious problem of the “overdiagnosis” narrative is that it appears to marginalize thyroid cancer patients at just the time their disease was seemingly gaining greater respect.

It’s deeply questionable, however, whether THYCA’s statement denying “overdiagnosis” will ultimately help this organization or the patients which is serves, especially because most patients being diagnosed today have “small” thyroid cancers.  The overdiagnosis of thyroid cancer, by all appearances, has been accepted as fact by both the World Health Organization and the American Thyroid Association.  Will denying it as a fact make THYCA appear to be anti-science?   Will THYCA now be able to help future patients by providing an unbiased source of information about incidental or non-palpable thyroid cancers?   These are troubling questions that will not be easily answered.

 

The Antidote to Overdiagnosis – Is it Oversight?

 

“I hope that the investigators are successful in their terminology reform efforts, I encourage them to include among their goals the search for a better understanding of why the specialty of pathology was unable to escape from its stubborn devotion to turning lesions with a low or poorly defined risk into cancer. Also, why is there no backup mechanism analogous to the US Food and Drug Administration’s review to detect and respond in a timely fashion to a systemic problem like hazardous diagnostic criteria becoming the standard of care?”

Pathologist and Author,  Elliot Foucar, addressing the work of Laura Esserman et al in The Lancet

 

In 2014, Dr. Laura J. Esserman and colleagues published an influential paper which proposed a new term, IDLE (Indolent Lesion of Epithelial Origin), for many types of indolent tumors which are currently being labeled as “cancers”.  Among a number of cogent points of the article is this one: ” new guidance is needed to describe and label the heterogeneous diseases currently referred to as cancer.”

As noted by  Dr.Elliot Foucar, a retired pathologist who still publishes papers about errors in pathology, it has fallen to researchers outside of the discipline of surgical pathology to call attention to the problem of cancer overdiagnosis.  Foucar blames the failure of pathologists to challenge and police their system of an expert opinion “gold standard” for the intervention by outsiders such as Esserman et al  into the problem of over treatment of indolent tumors which are labeled as cancers.

Since its publication, Esserman’s article has been cited 274 times, and has brought a significant degree of attention to the problem of overdiagnosis.

 

 

THYCA’s Grants are Weighted Heavily to Advanced Thyroid Cancer Cases

The Thyroid cancer Survivor’s Association announced the award of six new research grants for thyroid cancer.  The grants are heavily weighted to benefit patients with advanced thyroid cancer. Although advanced thyroid cancer is a worthy cause that is much in need of research dollars, the fact remains that only two out of the six grants may help with the much publicized problems of thyroid cancer overdiagnosis and over treatment.  These two grants may have applications for risk stratification of patients which could potentially help these lower risk patients to avoid being subjected to unnecessary interventions.

Given that the vast majority of thyroid cancer patients are low to intermediate risk following surgery with very low recurrence rates, it seems fair and ethical for THYCA to award more money and to pay more attention  to efforts which would mitigate the widespread over treatment of these patients.  Thyca’s less than enthusiastic response in handling the NIFTP reclassification may indicate a reluctance to address this pressing problem.

The new profile for the typical case of thyroid cancer is a middle aged woman with a microcarcinoma, as was found in this study from Hughes et al in 2011.  These cases are also among those which are the least likely to benefit from aggressive interventions such as total thyroidectomy and radioactive iodine.

Although funding research for Advanced thyroid cancers is an eminently worthy cause, it is troubling that a situation analougous to “robbing Peter to pay Paul” has been allowed to develop within the primary organization for Thyroid cancer survivors in the United States.

 

 

 

 

 

 

 

 

 

 

NIFTP: Primum Non Nocere – First Do No Harm

The Journal of the American Thyroid Association, Thyroid, has published an editorial ahead of print entitled:  Changing the Cancer Diagnosis:  The Case of Follicular Variant of Papillary Thyroid Cancer-Primum Non Nocere and NIFTP.   Although the full editorial is not currently available to the public, the first page can be viewed on the Journal’s website.

The authors of the editorial are also among the authors of the JAMA article which proposed the reclassification of N-EFVPTC to NIFTP.  They are Steven Hodak of NYU Langone; R. Michael Tuttle of Memorial Sloan Kettering Cancer Center; Guy Maytal of Massachusetts General Hospital and Harvard Medical School;  Yuri Nikiforov of UPMC Pittsburgh; and Gregory Randolph,  Of The Massachusetts Eye and Ear Infirmary, Mass General and Harvard Medical School.

The editorial states that for many thyroid cancer patients, physicians may be violating the important dictum in medicine, “First, do no harm.”  This is because recent studies have indicated that thyroid cancer imposes significant financial and emotional burdens on patients which have apparently gone largely unacknowledged until now.

Instead of recognizing these burdens, physicians have traditionally relied upon a policy of “social utilitarianism”, meaning trying to to the most good for the greatest number of patients through the implementation of cookie cutter treatments.  Under this philosophy, both high and low risk patients have received almost identical interventions for thyroid cancer.

The editorial appears to make a strong case that pathologists, endocrinologists and surgeons who are involved in the field of thyroid cancer have an ethical obligation to their patients with respect to NIFTP.  This means not only an obligation to reduce harm through implementation of the reclassification, but an additional moral imperative to go back and correct past harms by reviewing cases which were classified as N-EFVPTC over the years.

Potential NIFTP Patients: Your Pathologist May not Feel an Ethical Obligation to Review Your Case

A blog was published on Medscape by the pathologist Thomas Wheeler in which he seems to opine that it’s optional for pathologists to inform recent patients with non-invasive encapsulated FVPTC that their “cancer” has been reclassified, and also unnecessary for them to undertake an investigation into potential cases which are not considered to be “recent”.  Entitled ” Thyroid Cancer Yesterday, Benign Thyroid Today!“,  the blog post appears to criticize the principle author of the JAMA article which called for the reclassification of  N-EFVPTC, Yuri Nikiforov.  Nikiforov stated in a New York Times article that he felt there was an ethical obligation to inform impacted thyroid cancer patients that their cancer had been reclassified to a non-malignant condition.

Thomas Wheeler’s article, which is potentially disturbing to affected patients, can be found on Medscape by running a google search on the article’s title.  A free membership to Medscape may be required to view the article which includes a poll of pathologists. According to the poll,  many pathologists do not have firm plans to review past cancer cases that may not be considered as malignant under the new diagnostic criteria.

Given recent research which quantified the deleterious psychological impact of a thyroid cancer diagnosis, why would some pathologists not feel obligated to “correct” the record for NIFTP cases which are on their books as “cancer” diagnoses?  A portion of the reason may be purely logistical in nature.  It is likely that in many older cases, the original samples are no longer available for re- evaluation.  In other instances, there simply may not be enough resources within a department to undertake a comprehensive review.  For these types of situations, the responsible pathologists may feel it’s better to “let sleeping dogs lie.”

But in his post, Dr. Wheeler mentions another possible reason for not evaluating past cases that could be reclassified as NIFTP.  He writes, “if on review another expert did not consider that the nuclear features were diagnostic of EFVPTC even by the old criteria, that would be problematic”.  He is concerned that EFVPTC’s checkered history of “diagnostic disagreements” will come back to haunt pathology departments, creating embarrassment and other possible repercussions.  There may be a modicum of validity to his concerns. However the implication that some pathologists would be willing to let a patient go on believing that they had “cancer” rather than owning up to the uncomfortable truth makes it appear that the professionals involved are more interested in covering for themselves and their colleagues than they are in patient care.