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.