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.

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Ian Hay Addresses “Overdiagnosis” of Thyroid Cancer at the ATA Meeting

Dr. Ian Hay, a renowned expert on thyroid cancer from the Mayo Clinic in Rochester, Minnesota, gave a talk entitled “Changing Attitudes to the Most Common Endocrine Malignancy, T1 PTC” in one of the opening sessions of the 86th annual meeting of the American Thyroid Association in Denver Colorado. The meeting is being held from September 21st through the 25th, and is attended by thyroid experts from all over the world. Dr. Hay’s talk was covered on the Healio website, which gave a summary of what he said.

According to the article, Dr. Hay stated:

“The major burden of overdiagnosis has fallen on women”… “Patients, particularly women, need protection from the harms of unnecessary diagnosis.”

The article from Healio also quotes  Dr. Hay  as stating “smaller thyroid cancers will most likely never result in symptoms or death.”  Within the thyroid cancer medical community, Dr. Hay is probably best known for his research demonstrating a lack of beneficial impact for radioactive iodine ablation on low risk thyroid cancer.  Studies from the Mayo Clinic found that patients with a MACIS score of less than 6 do not benefit from RAI ablation in terms of  their survival or their likelihood of experiencing a recurrence.

A few doctors attending the ATA meeting expressed an apparent dissatisfaction with the word “overdiagnosis” through their Twitter accounts. However, it is uncertain what impact these opinions will ultimately have within the ATA.  One of the motives for the recent reclassification of non-invasive encapsulated  follicular variant to NIFTP was to reduce the psychological impact of a cancer diagnosis on patients.  The issues surrounding patient distress from thyroid cancer have received considerable attention in recent medical literature.

 

Education about Overdiagnosis is Preferable to Claiming it Doesn’t Exist

Recently, the New England Journal of Medicine (NEJM) published an article about the overdiagnosis of thyroid cancer.  The study, which was written by epidemiologists from the World Health Organization found striking evidence for the overdiagnosis of thyroid cancer in many developed countries around the world.  According to the article, and in agreement with many past studies, the introduction of various diagnostic imaging techniques in recent decades has resulted in a “massive” increase in the detection of papillary thyroid cancers, especially smaller cancers.  Besides revealing  a reservoir of  thyroid nodules (most studies estimate that about 5% are cancers) in the population that had previously gone undetected; the technology itself has also made “opportunistic” screening for disease possible. This means that doctors can screen for disease in asymptomatic patients.  Such a program was implemented formally in South Korea, which has been “rewarded” with the highest incidence of thyroid cancer in the world, but without a decrease in mortality rates.

The publication of the NEJM study was covered in the popular press and also by National News outlets such as NBC.  In an unprecedented move, The American Thyroid Association (ATA), published a statement on the overdiagnosis of thyroid cancer which called for fewer biopsies of small thyroid nodules under 1 cm in size as well as “active surveillance” or lobectomy (removal of half the thyroid gland) for some patients with thyroid cancer. These measures are recommended in hopes of uncovering fewer small, asymptomatic thyroid cancers and also in order to reduce over treatment for patients with thyroid cancer.

The chief patient support and advocacy group in the United States for thyroid cancer is THYCA Inc, the Thyroid Cancer Survivors’ Association.  THYCA sponsors many visible events and publications about thyroid cancer, including a yearly conference that is well attended by both patients and physicians.  They also award medical research grants for the different types of thyroid cancer ( Some thyroid cancers are life threatening, although the majority are treatable or apparently may require no treatment). In response to the publicity garnered by the NEJM article, THYCA released a statement which referred to “overdiagnosis” as an erroneous 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.  – Gary Bloom, executive director of THYCA

 

Bloom’s statement appears to be based on a definition of cancer that is increasingly viewed as being anachronistic.  As previously mentioned on this blog, a 2013 editorial by Esserman et al and published in the Journal of the American Medical Association  called for the re-naming of some cancers as IDLE (Indolent Lesion of Epithelial Origin), in order to recognize the heterogeneous nature of tumors which are currently labeled as being cancers. This influential piece has been cited 282 times at this writing.  The newer data which has engendered the literature on overdiagnosis are found in  studies which indicated that cancer screening (early detection) has uncovered many indolent lesions which were not destined to progress and kill their hosts.  Esserman et al write:

Physicians, patients,and the general public must recognize that overdiagnosis
is common and occurs more frequently with cancer screening. Overdiagnosis, or identification of indolent cancer, is common in breast, lung, prostate, and thyroid cancer. Whenever screening is used, the fraction of tumors in this category increases. By acknowledging this consequence of screening, approaches that mitigate the problem can be tested.

Although formal screening for thyroid cancer by ultrasound is not currently practiced in the United States as it has been in South Korea, there is little doubt that the use of ultrasound and other imaging techniques have caused most of the increase in the incidence of thyroid cancer.  The recent statement by the ATA which gave credence to the concept of overdiagnosis as it pertains to thyroid cancer is probably tied to the selection of John C. Morris of the Mayo Clinic as itsultrasound president-elect.  Morris has co-authored influential articles about imaging and thyroid cancer; among them is the one cited above. Given the acceptance of the role of imaging and the high likelihood that the discovery of indolent lesions labeled as “cancer” is harming a very significant portion of papillary thyroid cancer patients, it is difficult to see how THYCA’s recent statement is going to help the growing community of thyroid cancer “survivors” both in the United States and in other parts of the developed world  to be informed about the condition, and the likelihood of over treatment.

The concept of “overdiagnosis” as it pertains to thyroid cancer seems to have been first brought forward in the medical literature by Davies and Welch in 2006.  Since that time, and because of the increasing incidence of the disease, the concept has gained increasing credence in academia for thyroid cancers (mostly papillary) as well as other cancer types.  There have also been several studies published finding that “overdiagnosis” is not well understood by  laypeople who have been inculcated by public campaigns which stress the early detection of cancer as being lifesaving.  Most cancer survivors’ organizations, such as THYCA, have relied upon the slogan “early detection saves lives” as part of their awareness efforts  directed at the public.  While THYCA has not promoted the use of ultrasound screening per se as a tool for detection of thyroid cancer, they do promote “neck checks” and urge the public to “catch it early”.  The task of backtracking or qualifying the promotion of “early detection”  as a life-saver may be a formidable one for an organization which has included it as part and parcel of its public outreach.  Any such attempt at clarification would have to include a public education effort aimed at explaining counter-intuitive concepts that can be somewhat difficult to grasp.

A recent article published in the Journal of Evaluation in Clinical Practice, written by Rogers and Mintzger, made recommendations for dealing with overdiagnosis caused by “maldetection”.  Maldetection occurs when “the diagnosis is based on an accepted gold standard test for particular diseases, but the presence of a positive result cannot tell us which individual patients have harmful disease and which patients have non-harmful disease.”  The authors cite papillary thyroid cancer as being a prime example of overdiagnosis occurring as the result of maldetection.  They further opine:

Where there are high rates of maldetection (typified by rapid increases in diagnoses with no associated decreases in mortality), this may be a prima facie reason to: identify relevant drivers and curtail these to the extent possible; rethink the original disease category; or specify intervention thresholds that are distinct from diagnosis (as has occurred with recommendations regarding micro-papillary thyroid cancer).

The recent ATA statement on overdiagnosis coupled with their 2015 Guidelines for thyroid nodules and thyroid cancer  appear to acknowledge that there is  likely “maldetection” occurring within the medical specialties which address the problems of thyroid nodules and thyroid cancer. While an official reclassification of some indolent papillary carcinomas may still be years away, a model has recently been established by the new NIFTP designation for non-invasive encapsulated follicular variant.  The recommendations in the guidelines which limit biopsies for nodules under 1 cm and sanction active surveillance for some small lesions, will likely have an effect of lessening or leveling the incidence of papillary thyroid cancer.  These actions by the ATA can be interpreted by any reasonable person as an acknowledgement of a situation consistent with”overdiagnosis”.

Public misconceptions and misunderstandings about cancer overdiagnosis would therefore seem to be a logical target for the development of educational materials and outreach efforts by patient advocacy organizations such as THYCA.  Interestingly, a surrogate of the THANC Foundation (Thyroid, Head and Neck Cancer Foundation) entered the ethics arena by being  a co-author of a recent article published in Thyroid about the ethical ramifications of the NIFTP reclassification.  The authors of this article recommend that with respect to the reclassification, ” the prudent course would be to attend to the requirements of medical ethics.”  In contrast, THYCA has thus far remained silent on the many ethical issues related to NIFTP, other than stating that past cases of  NIFTP were treated according to the standards of the time.  However, it could and has been argued that medical professionals and others in a position to interact with patients have an obligation to inform them about  ethical  issues such as overdiagnosis as they  pertain to certain kinds of thyroid cancer.

Rather than ethics per se, the reasons for THYCA’s objection to the use of the word “overdiagnosis” in describing current trends related to papillary thyroid cancer, appear to be related to protecting the feelings of patients with whom THYCA has interacted as a source of information and support. Gary Bloom’s statement refers to the recent media articles as triggering ” unnecessary upset among people who are currently being treated or have been treated in the past for thyroid cancer.”  While it’s almost certainly true that the reports have caused “upset”,  Bloom’s assertion can be construed as a willingness to shortchange the informational needs of future patients in favor of shielding the current membership.  This arguably opens up all sorts of issues about the responsibility of survivors’ organizations to truthfully meet medical informational needs as well as to offer emotional support.  Furthermore, if the American Thyroid Association has recently acknowledged the ethical dimensions of overdiagnosis by acting on behalf of its curtailment, it begs the question of what organizations such as THYCA would gain by  denying its existence and thus foregoing an opportunity to educate its membership.

Keep reading here for more articles on this topic.

 

 

 

 

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.

Famed Thyroid Pathologist Refuses to Review Possible NIFTP Cases

An article recently appeared in CAP Today,  a publication of the College of American Pathologists about NIFTP, which is a revised designation for a type of thyroid cancer.  Non-invasive encapsulated follicular variant (N-EFVPTC) was reclassified as being nonmalignant, a change which will likely significantly reduce the number of thyroid cancer cases which are diagnosed yearly in the USA and worldwide.

The article gives the views of several well-known pathologists and clinicians about the impact of the reclassification.  Surprisingly, although the reclassification has been touted as being especially beneficial because of its potential to reduce psychological harms to patients, the article suggests that many pathologists and clinicians do not see any reason to inform the thousands of individuals who have already received the N-EFVPTC diagnosis that their “cancer” has been reclassified.

The well-regarded thyroid pathologist and opinion leader, Virginia Livolsi, of the University of Pennsylvania goes so far as to belittle thyroid cancer patients who read the New York Times article about the NIFTP reclassification.  She states:

“They want their tumor from two years ago to be reviewed, which is totally inappropriate”…” Two years ago, the entity and the name did not exist. Patients were treated at the time according to the standards of the time”… “I feel strongly that research results—that’s what these are—do not belong in a patient’s medical record. To go back on the basis of somebody reading something in The New York Times? That’s wrong”.

Ironically, Virginia Livolsi is also quoted in the CAP Today article as having been impressed by a presentation given by Guy Maytal, of Harvard University during the course of the study which resulted in the nomenclature revision for NIFTP.  Dr. Maytal spoke about the psychological impact of a cancer diagnosis. According to the article:

Dr. LiVolsi called Dr. Maytal’s talk “absolutely amazing.”

What could be behind the apparent reluctance of Virginia Livolsi and some other pathologists and clinicians to review past cases of N-EFVPTC and therefore remove the stigma of a cancer diagnosis for these patients?

Keep reading this blog for a future article on this topic.

 

 

 

THYCA’s Feelgood Public Response to the NIFTP Reclassification was Inadequate

THYCA is the acronym for the Thyroid Cancer Survivor’s association. Founded in 1995, its stated mission is to “educate, participate, communicate and support research” in the area of thyroid cancer.  Back in the 1990’s and earlier, thyroid cancer was much rarer than today, and knowledge of the disease was limited.  To that end, THYCA has promoted public awareness and medical knowledge for thyroid cancer which in the past had been considered a rare disease but is now a leading cancer diagnosed in women.

Cancer “awareness”, however, can be a double-edged sword in that awareness activities may become an end in themselves thereby eclipsing the complex realities and heterogeneous nature of cancer.  The Susan G. Komen Foundation has faced criticism over its promotion of mammograms, which have more recently been linked to overdiagnosis and over treatment and are likely saving many fewer lives than had been previously  believed.  Breast cancer awareness activities involving the color pink and merchandise promotion have also been criticized as promoting “survivors” while concealing the realities of those who have either terminal or “overdiagnosed” cases of the disease.  The intimations that mammography has been overly hyped by medical professionals combined with doubts about the public “awareness” campaigns which are spearheaded by organizations such as Komen suggest that there has been simplistic thinking about breast cancer and that a course correction is now underway.

Thyroid cancer has been oft touted as the most rapidly rising cancer for women in the United States.  Although a few studies have asserted that there has been a concomitant “true” increase in incidence, it has now been generally accepted that the dramatic rise in cases is overwhelmingly attributable to opportunistic detection methods and most likely a lowering of diagnostic thresholds by pathologists.  A striking illustration of this reality came to public attention with the recent reclassification of a type of thyroid cancer to a non-cancer, as reported by the New York Times.  Since the identification of noninvasive EFVPTC as a type of thyroid cancer first identified by pathologists in the 1980’s, cases had increased sharply and diagnostic thresholds appeared to drop in a haphazard manner.  Although many pathologists had long suspected that noninvasive EFVPTC was an extremely indolent tumor,a few experts had encouraged an expansion of diagnostic criteria.  In the United States and elsewhere, there are no formal oversight or quality control mechanisms  on the validity of expert opinion in cancer pathology.  Because of this situation a few experts can operate as gatekeepers for an entire disease domain in a largely unchallenged manner. Consequently, it took many years for someone to finally initiate and organize a nomenclature revision for noninvasive EFVPTC. During this period, however, a number of academic articles were published which suggested that the tumor now designated as NIFTP was a problematic diagnostic category.

Although a representative from THYCA, medullary cancer survivor Kathyrn Wall, is listed as a co-author of the JAMA article which proposed the reclassification of noninvasive FVPTC to NIFTP; the THYCA organization had never previously publicized the pending reclassification, nor had it shared any articles about the controversies surrounding the tumor on its official website.  Nothing has yet been published by THYCA about Wall’s participation in the study, nor what type of input she contributed to it.  On the day the study was published (April 14th, 2016), a post appeared on THYCA’s Facebook page announcing the reclassification and which stated in part:

We know many people will be upset that they received RAI as part of their treatment for their encapsulated Follicular Variant of Papillary Thyroid Cancer. Please keep in mind that the care you received was considered the correct standard of care at the time. The care we received has helped contribute to the research which has led to this important change and hopefully many more changes in our care to come.

This comment, appearing in conjunction with the publication of the JAMA study, surely glosses over important facts surrounding NIFTP as a reclassified type of thyroid cancer.   The diagnostic standard for this tumor, although heavily influenced by the opinions of a few “expert” pathologists such as Virginia Livolsi of UPENN, had been contentious for a number of years and as such there was no “standard of care” for the administration of radioactive iodine that had been proven as beneficial or widely recommended. Perhaps more troubling, and given THYCA’s participation in the two- year reclassification effort, its official announcement can be viewed as a lapse in its stated mission to empower patients through “education” and communication.  Had THYCA truly been interested in educating patients with EFVPTC, it had the option of providing information about the tumor on its website or at its annual conferences which are held at various locations in the USA and which are usually well attended by experts on thyroid cancer.  Instead, it held back critical information in favor of promoting “awareness” about thyroid cancer and calling for neck checks. Subsequently, most patients with this diagnosis were taken by surprise when the reclassification was announced.  Many of those that had been treated with radioiodine  may have been spared this intervention had they known of the pending downgrade of EFVPTC by a panel of expert pathologists.

Although THYCA receives donations for its activities from Drug Companies and other corporations, it relies heavily on patient membership in order to support and publicize its awareness activities and to fund research grants.  To this end, THYCA’s web site and other educational materials have usually emphasized that thyroid cancer is the “fastest growing cancer” because the number of cases has been increasing every year for several decades.  Because of the NIFTP reclassification and also other developments, the total number of thyroid cancer cases in the United States and worldwide can now be expected to fall significantly.  Logically, this means that THYCA’s membership is likely to drop because of past cases of thyroid cancer that will now be reclassified and future cases that will no longer be diagnosed as malignant.  Aside from the possible negative financial consequences to THYCA, the reclassification of EFVPTC is also likely to impact the reputation of thyroid cancer itself as serious type of cancer that is worthy of public awareness.

More and more frequently, we are seeing examples of physicians who are becoming attuned to the harms of cancer overdiagnosis, both psychological and physical.  Patient advocacy and awareness organizations have an ethical responsibility to incorporate this growing trend into their activities and materials and to thereby stop promoting uncritical attitudes about cancer as a homogeneous condition.  While it is surely laudable to educate and support those who are suffering from true cancers, it should not be considered expedient for patient advocacy organizations to gloss over or withhold vital information from those patients who are potentially being over treated because of their own ignorance about their condition.