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.