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.

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Dartmouth’s Louise Davies Publishes Study on Thyroid Cancer Patients who are Self-Described as “Overdiagnosed”

Dr. Louise Davies, a Professor of Medicine at Dartmouth College and the Chief of Otolaryngology and Head & Neck Surgery  at the VA Hospital in White River Junction, Vermont, has published an article  with colleagues about thyroid cancer patients who have described themselves as being “overdiagnosed”.  The article appeared in Journal of the American Medical Association Otolaryngology – Head & Neck Surgery on March 9, 2017.  A podcast interview about the paper is available here.

This qualitative study involved 22 patients who decided to monitor an incidental finding of thyroid cancer rather than to have immediate surgery.  In the JAMA podcast, Dr. Davies describes one of the more remarkable findings of the study as being the isolation that patients felt due to their decision to monitor thyroid cancer.  ” Medical professionals, friends, and internet discussion groups told them (patients) they were “being stupid,” “were wrong,” or were “crazy” to not intervene”, according to the findings. The article also found that such patients are at risk of disengaging  from healthcare.

More information about Dr. Davies’ research can be found at this website:  http://www.louisedaviesmd.us/what-is-over-diagnosis.html

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.

 

NIFTP Full Disclosure: An Ethical Policy that should be Adopted

An article made available prior to copy editing appeared very recently in the medical journal Thyroid.   Entitled The Ethical Implications of the Reclassification of Non Invasive-Follicular Variant Papillary Thyroid Carcinoma , the article is authored by a group from Mt. Sinai Beth Israel Medical Center in New York City, and also a representative of the THANC Foundation.

This piece is of particular interest because in seeming contradiction to some opinions recently expressed in a CAP Today article regarding the NIFTP reclassification,  these authors state that it’s the physician’s” professional duty to make a sincere and reasonable effort to convey (the) information to the affected patients.”

In the aforementioned piece in CAP Today, an online publication of the College of American Pathologists, noted thyroid pathologist Virginia Livolsi stated that she would not go back and review her past cases of EFVPTC that would now likely be reclassified as NIFTP, a non-cancer.  One of the reasons given was that of differences in techniques for sampling encapsulated tumors.  The diagnostic criteria for NIFTP requires that the entire tumor capsule be submitted by the pathologist.  According to Virginia Livolsi, “older literature” called for the examination of ten sections of a nodule as opposed to the entire capsule.  However, her reasoning seems to be contradicted by Gerard Doherty, surgeon and professor at Boston University, earlier in the same CAP Today article.  According to Doherty, “I think expert pathologists have been examining the entire capsule for some time. That’s not to say it’s been universally done…”

Another of Livolsi’s apparent  objections to reviewing past cases of EFVPTC is her belief that a NIFTP diagnosis cannot be retroactive on principle.  With regard to a case of EFVPTC for which her  patient had requested a review, Livolsi states: “I have refused to revise the diagnosis, and I have refused to look back at the slides. That case was signed out in 2012. In 2012, that was the diagnosis.”  Doherty agrees with her in the article, stating, “We don’t see any clinical reason to go back and tell patients that a group of people has suggested we change the name of a low-risk disease they already knew they had. It doesn’t change clinical management at all. Changing the name doesn’t change the follow-up.”

However, the new article in Thyroid opines that with regard to NIFTP: “… the prudent course would be to attend to the requirements of medical ethics.”  In the opinion of the Mt. Sinai team, pathologists are therefore 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.