Why Many Patients are Angry about the NIFTP Reclassification – and why they may be Wrong

Soon after the announcement of a proposal to reclassify a type of thyroid cancer (noninvasive encapsulated follicular variant or EFVPTC) as a non-cancer, there were some angry reactions on the web from thyroid cancer patients.  An article appeared in the New York Times on April 14, 2016 which gave background information about EFVPTC and relayed the main reason that Dr. Yuri Nikiforov, a pathologist at the University of Pittsburgh, had initiated the study which lead to the proposal.  According to Dr. Nikiforov’s statement in the article,  he felt “a responsibility to stop the madness” of over treatment for an indolent tumor.

In a different  article about the reclassification  which came out a few days later in Medscape, Dr. Nikiforov was quoted as saying that many thyroid cancer patients were confused and had not realized that the reclassification only applied to a very specific type of FVPTC, rather than to all thyroid cancers.  This misconception apparently  became a source of anger for a segment of patients who are being treated or followed for various types of thyroid cancer.  On the Thyroid Cancer Survivors’ Organization‘s Facebook page, and other thyroid cancer related Facebook sites, some patients expressed anger and disbelief about the reclassification.  Many were confused; some felt upset about having received unnecessary treatment, and a number distrusted the nomenclature change.

Other patients, such as the thyroid cancer patient and veterinarian, Sarah Boston, were angered by the New York Times article for a different reason.  On her blog, Boston wrote that the New York Times article was actually doing a disservice to thyroid cancer patients because the reclassification only affects approximately 10,000 people a year in the United States.  The remaining thyroid cancer patients must struggle with the public perception of thyroid cancer as “the good cancer”, which might even be exacerbated by the publicity which the reclassification would now receive. Boston  movingly conveyed her experience as a patient with an “imposter” cancer. She did not consider the reclassification as newsworthy and opined that the information about EFVPTC should have remained in the peer-reviewed journal which published it.

As noted in the Pittsburgh Tribune Review, this is the first time that a type of cancer has been reclassified as a non-cancer.  This reclassification could possibly have far-reaching effects for other types of cancer which are also thought to be “overdiagnosed”.  In this respect the reclassification will likely serve as a model for future efforts which will seek to curb the growing problem of indolent tumors.  Therefore, the publication of the NIFTP article is an event which could have very far-reaching consequences beyond the world of thyroid cancer.

Many people have difficulties in understanding the concept of “overdiagnosis”.  The term does not refer, as many think, to the diagnosis of a disease that isn’t there, nor does it mean “misdiagnosis”.   The indolent tumors, such as noninvasive EFVPTC, which are being diagnosed as cancers do meet pathological definitions of cancer.  The problem lies with the growing realization that many of these “cancers” are not destined to progress. This turns the traditional definition of cancer on its head.  The phenomenon of overdiagnosis has been discovered mostly due to epidemiological studies which show steadily rising rates for certain cancers such as thyroid cancer, while the death rate remains the same.

Overdiagnosis hurts patients in two different ways.  First, it hurts the “overdiagnosed” who have been exposed to unnecessary medical interventions and the accompanying psychological harms of a cancer diagnosis.  Secondly, it hurts patients who have a “true” cancer because the overdiagnosed cases are distorting the overall statistics for the specific cancer.  The survival statistics which include the indolent cases will mask the rate for the truly life-threatening and potentially life-threatening cases.  Doctors also will likely make inferences that their interventions are more successful than they actually are.

Many cancer patients, and also the general public, intuitively reject the notion of overdiagnosis. One of the biggest reasons is  the historic concept of cancer as a relentlessly progressive disease which will kill us if  we do not intervene.  The study by Nikiforov et al, which subjected both invasive and noninvasive FVPTC to an unprecedented degree of scrutiny will  likely bring a new public focus to thyroid cancer and to other cancers with similar epidemiological profiles. The concept of cancer reclassification as a tool to counteract overdiagnosis may at first seem antithetical to the goals of the survivors’ organizations which promote disease “awareness”. But in the long run the public perception of thyroid cancer may be transformed, and the disease  taken more seriously once the “imposter” cases have been peeled away.

The literature about thyroid cancer overdiagnosis foreshadows the increasingly contradictory goals of  survivors’ organizations as compared to progressively-minded medical researchers.  Cancer survivors’ organizations have traditionally sought to expand ” disease awareness” by promoting  activities such as “neck checks” for thyroid cancer and mammograms for breast cancer.   But it’s becoming more evident with each passing year that these measures may only be subjecting greater and greater numbers of the healthy to a questionable enterprise.

Attempting to put a lid on the public’s knowledge of important medical advances by confining them to often pay-walled medical journals is both ethically problematic and ultimately harmful to the credibility of survivors’ organizations.  The empowered patient is the informed patient, and the informed patient is less likely to be overdiagnosed and over treated.