THYCA INC and the “Myth” of Overdiagnosis

The foremost patient advocacy organization for thyroid cancer in the United States is THYCA INC.  According to its web site, THYCA was founded in 1998, by a group of thyroid cancer survivors and has a mailing address in New York City.  At the time of the group’s founding, there was little information about thyroid cancer available to the public, and apparently there were no support groups.  In 1998, there were approximately 14,000 cases of thyroid cancer in the United States, making it a rare malady at that time.  Nowadays, there are approximately 63,000 cases per year, with thyroid cancer being the fifth most common cancer in women.  The dramatic rise in the number of cases has been attributed mostly to the advent of neck ultrasounds and FNA biopsies by endocrinologists, but also to changing pathology thresholds.  Because the mortality rate for thyroid cancer has remained flat, many doctors and also health organizations such as WHO have posited that the increasing incidence can be attributed to “overdiagnosis”.  Overdiagnosis generally refers to diagnoses that provide little or no net benefit to the patient and which may in fact be harmful both physically and psychologically.  With respect to their pathology, these tumors meet the textbook definition of cancer, yet they are deemed as very unlikely to harm their hosts.

Generally, “overdiagnosis” is said to apply to small papillary thyroid cancers, especially those under  1 or 2 cm which do not exhibit invasive properties.  However, larger noninvasive thyroid cancers may also be candidates for being overdiagnosed.  This was illustrated recently by the NIFTP reclassification, whereby a type of non-invasive thyroid cancer was reclassified as a non-cancer or “borderline” tumor by a multidisciplinary group of pathologists, surgeons and endocrinologists, and reported in the New York Times. There is a general trend today by academic thyroidologists to identify indolent types of thyroid cancer which do not require the radical treatments that were routine in the past, such as total thyroidectomy and routine RAI ablation. But not every case of thyroid cancer is “overdiagnosed”.

About 10% or so of papillary or follicular thyroid cancers may become resistant to RAI treatments  (also known as non-avidity) and persist in the body.  These are the more unusual cases which may eventually prove fatal to patients.  Other types of thyroid cancer, such as  medullary and anaplastic are considered to be serious forms and are also much more rare.  All in all, there are approximately 1800 deaths from thyroid cancer in the USA each year, with about half of these attributed to the papillary or follicular types. Most deaths from thyroid cancer occur in older individuals, although there are rare fatalities among younger patients as well.  The 2015 Guidelines for thyroid cancer by the American Thyroid Association attempt to address overdiagnosis through the implementation of measures designed to reduce the number of ultrasounds and biopsies for patients and also by encouraging the use of a unique risk stratification scheme at the time of diagnosis. There are also efforts underway to identify both indolent and aggressive  tumors according to their molecular characteristics.

THYCA as an organization tends to publicize the more aggressive cases and types of thyroid cancer to the public.  For example, it recently posted an emotionally affecting video about RAI resistant disease to its Facebook page.  The video depicts many graphic surgical images and also memorializes patients who have died of thyroid cancer.  The struggles of these patients and their families are real and should not be minimized; however the fact remains that the vast majority of thyroid cancer patients will never experience their tribulations.  It is these “low risk” patients who have been the subject of controversy about overdiagnosis within medicine.  Because of their sheer numbers (they now constitute the majority of differentiated thyroid cancer patients), they are likely to be exposed to outreach material by THYCA and other similar groups which have in recent campaigns referred to  overdiagnosis as a “myth”.

The motivation to refer to overdiagnosis as “myth” appears to be rooted in a selective use of facts, such as the aforementioned video; but also data on the lived experience of thyroid cancer patients irrespective of what their individual prognosis might be.  Interestingly, one of the rationales which drove the reclassification of noninvasive follicular variant to NIFTP was the psychological impact of a cancer diagnosis on patients which was viewed as being disproportionate to their “benign” outcomes.  Because the concept of overdiagnosis relies upon counter-intuitive  notions about cancer, many patients become indignant when they see articles about thyroid cancer overdiagnosis in the mainstream media, regardless of their actual risk level.

Numerous medical professionals have fallen into the habit of referring to thyroid cancer as “The Good Cancer”; a state of affairs which has made Thyroid Cancer patients of all risk levels and types feel marginalized.   Media campaigns by THYCA to fight the “Good Cancer” perception, have influenced academic studies which have subsequently demonstrated that thyroid cancer patients suffer as much from their diagnoses as do those with other cancer types.  This mixture of circumstances has contributed to opposition by patient advocacy groups such as THYCA to academic and popular media reports about overdiagnosis. For a variety of reasons,  the “cancer” experience is lived by patients on an emotional level that does not always correspond to the facts of their prognosis and likelihood of survival.  In this sense, the world of thyroid cancer patients is influenced by motivations and  medical  controversies of which they are sometimes unaware. For one, there is the motivation of THYCA and other groups to raise awareness and patient dignity, but also to fund research for the deadly but less frequent forms of this disease.  Concurrently,  there is a movement in medicine to curb “overdiagnosis”.   Caught in the middle of these conflicting forces is the “low risk” patient who is also most at risk of being over treated and therefore subjected to unnecessary psychological harm.

Turning overdiagnosis into a “myth”, in contradiction to both the World health Organization and the American Thyroid Association is not only anti-science, but  effectively works against the best interests of many patients whom THYCA  purports to educate and help.

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’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.

 

 

 

 

 

 

 

 

 

 

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.