Ethics, Transparency, and “The Good Cancer”

 

If someone were to compile a list of phrases guaranteed to bring an emotional reaction from thyroid cancer patients, at the top of the list would be, “The Good Cancer”.   Internet patient forums and columns across the web are rife with anecdotes about the use of this expression by medical professionals and the subsequent confusion and distress which it causes in the afflicted.  Those who have been diagnosed and treated for this condition will typically relate that, for them, thyroid cancer is “anything but good”. This is in spite of the generally high survival rate for papillary thyroid cancer, its most common form.   Among the many reasons given by patients for the label’s inappropriateness are the necessity of lifelong hormone replacement therapy, inconvenient (and sometimes incapacitating) follow-up testing and the specter of “recurrence” that is never completely lifted; all of these oftentimes experienced by younger women in the prime of their lives.

How could any of these things be considered as “good”?  Indeed, a recent journal article from Otolaryngology –Head and Neck Surgery , found that  more than half of thyroid cancer patients experience a level of distress that “does not correlate” to their prognosis.  One wonders if this finding is suggestive of patient “over-reaction” or whether an alternative explanation is more plausible.  Perhaps not surprisingly, there is evidence in support of the latter explanation.  According to many experts, thyroid cancer patients who are lower on the risk spectrum are being subjected to  an outmoded and increasingly discredited treatment paradigm.  Many of these patients are not even aware that they are likely being over treated.

Alongside the voluminous research literature on the pathological definitions and best treatment of thyroid cancer over the past forty or fifty years, a parallel universe of articles warning of “over diagnosis” has also emerged.  Generally corresponding to the advent of FNA (fine needle aspiration) biopsies and ultrasound technology, the incidence of the disease has been noted to have had a 4.6 fold increase since 1973, mostly in small papillary cancers, with a coexistent stable mortality rate. For some authors, this suggests the detection of a disease reservoir that has always been present, yet has gone undetected.  Other studies have found that pathological definitions have been expanded, particularly for low-grade encapsulated tumors which in the past would have been diagnosed as adenomas. Additionally, thyroid cancer pathology has been plagued by problems of inter-observer diagnostic disagreements and a lack of expert consensus, even extending to doubts about the existence of a reliable “gold standard” for diagnosis . All of these factors lead to serious questions about the underlying rationales and even the appropriateness of current diagnostic criteria and subsequent treatment protocols for thyroid cancer, particularly for those  deemed as “low risk” with a very low recurrence rate and very high survival rate.

Critiques of the  standard of care for papillary thyroid cancer have historically focused upon extent of surgery and have  questioned whether radioactive iodine ablation should be routine for low and intermediate risk patients as defined by various staging schemes for the disease.  In the past, follicular and papillary thyroid cancers have been grouped together for treatment and statistical purposes, perhaps inappropriately , and in the USA, mostly only the smallest cancers have been spared from total thyroidectomy and radioactive iodine treatment.  Just as the burgeoning number of cases and high survival rates for prostate and breast cancers precipitated a questioning of treatment modalities and scrutiny of histopathological thresholds for those diseases, thyroid cancer has increasingly been placed under a similar umbrella of suspicion by epidemiologists and some clinicians.

Until fairly recently, medicine has espoused an attitude of paternalism with presumptions that the superior medical knowledge of physicians qualifies them to make authoritarian and opaque decisions in service to the patient’s best interest. The foundation of medical decision-making resides in the discipline of Pathology. The “faceless” nature of  transactions between pathologists and patients means that this aspect of patient care effectively operates in a shadow zone.  Typically (and sometimes even by legal mandate), the pathologist makes his or her diagnosis in the relative obscurity of the laboratory; leaving the nuances of transmission to the surgeons and clinicians who interface with patients.  In this regard, the specialty of pathology and its often subjective diagnostic thresholds has been insulated from oversight, and driven by “expert” opinion. With a few exceptions, most of its recent critics have originated from outside its purview.  Elliot Foucar, a pathologist from New Mexico, wrote in The Lancet that the “Gold Standard” of expert pathological opinion had failed to adapt to the newer epidemiological data which has revealed the deleterious effects of cancer screening and new detection technologies on unsuspecting patients.

But who decides which opinions are “expert”?  In this vein, it seems self-evident that a “gold standard” which is based upon such expert opinion cannot be immune to political machinations within a given field.  Perhaps with this problem in mind, a new proposal to reclassify a type of thyroid cancer was recently published in JAMA Oncology and its recommendations were subsequently accepted by the World Health Organization.  The reclassification was unique because of its adoption of an evidence based approach in order overturn  the “expert opinion” diagnostic standard for malignancy.  It’s thought that this bold initiative will likely serve as a model for similar reforms in other overdiagnosed subtypes of cancer.  The impetus for renaming a type of encapsulated thyroid cancer (noninvasive encapsulated follicular variant, or N-EFVPTC) as NIFTP  reportedly came to fruition when the University of Pittsburgh Pathologist, Yuri Nikiforov was motivated to act on the dilemma  of over treated patients with N-EFVPTC at his institution. As an “adaptation” to recent insights about thyroid cancer, it was both a deeply ethical response and a blueprint for accountability in medicine.

As epidemiological and other research data show, the detested “Good Cancer” label for papillary thyroid cancer is used by doctors because of its generally  indolent nature, but is also very likely  attributable to an exaggerated confidence in their own interventions.  A perfect storm of early detection dogma, enthusiasm for new technologies, and artificial  shifts in diagnostic thresholds was mostly ignored until an article by Esserman et al garnered a great deal of media attention in 2014.  The reclassification of a type of thyroid cancer to benign NIFTP is a startling leap towards more accurate diagnoses.    But a permanent retirement of “The Good Cancer” label can only come about when its roots are laid bare for  patients to see.  The roots may begin with pathology but they extend to patients kept in the dark about doubts regarding the extent of surgery ( or even the necessity of surgery), and the appropriateness  of RAI ablation and therapy.  Transparency from medical professionals about conflicting evidence is an ethical responsibility that will help patients make decisions and possibly alleviate their distress.

 

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