Thyroid cancer patients report poor quality of life despite ‘good’ diagnosis

Thyroid cancer survivors report poor quality of life after diagnosis and treatment compared with other patients who are diagnosed with more lethal cancers, according to new research from the University of Chicago Medicine.

The findings, published  in the journal Thyroid, shed light on a rarely studied outcome for a growing group of patients who are expected to soon account for 10 percent of all of American cancer survivors.

Thyroid cancer patients have a nearly 98 percent five-year survival rate, according to the National Cancer Institute. More than 95 percent survive a decade, leading some to call it a “good cancer.” But those successful outcomes mean few thyroid cancer survivorship studies have been conducted.
UChicago Medicine researchers Briseis Aschebrook-Kilfoy, PhD, assistant research professor in epidemiology, and Raymon Grogan, MD, assistant professor of surgery, are trying to address that data gap. Together, they lead the North American Thyroid Cancer Survivorship Study (NATCSS).

For their most recent research, Aschebrook-Kilfoy and Grogan recruited 1,174 thyroid cancer survivors – 89.9 percent female with an average age of 48 – from across the U.S. and Canada. Participants were recruited through the thyroid cancer clinics at UChicago Chicago Medicine, the clinics of six other universities, as well as through thyroid cancer survivor support groups and social media.

The researchers then used City of Hope’s Quality of Life thyroid tool, a questionnaire that assesses physical, psychological, social and spiritual wellbeing to measure patient-reported quality of life. They found that thyroid cancer survivors reported an average of 5.56 out of 10 on the scale. That was worse than the mean quality of life score of 6.75 that was reported by survivors of other cancer types (including colorectal and breast cancer) that have poorer prognoses and more invasive treatments.

I think we all have this fear of cancer that has been engrained in our society,” Grogan said. “So, no matter what the prognosis is, we’re just terrified that we have a cancer. I think this shows that.”

After treatment, thyroid cancer survivors face a lifetime of cancer surveillance and an anxiety-inducing high rate of recurrence, which could contribute to their findings.

Aschebrook-Kilfoy and Grogan also found that patients who were younger, female, and less educated, as well as those who participated in survivorship groups, all reported even worse quality of life than other study participants. However, after the five-year mark, quality of life gradually starts to increase over time for both male and female thyroid cancer survivors.

The researchers will continue to track participants to further understand this data.

The goal of this study is to turn it into a long-term, longitudinal cohort,” said Grogan, who hopes to develop a tool that physicians can use to assess the psychological wellbeing of thyroid cancer survivors. “But, there was no way to do that with thyroid cancer because no one had ever studied quality of life or psychology of thyroid cancer before.”

Psychological wellbeing is part of the Institute of Medicine’s recommended survivorship care plans.
Thyroid cancer rates have increased dramatically in the past several decades, climbing about 5 percent a year. A 2011 study by Aschebrook-Kilfoy and Grogan found that thyroid cancer, which is most common in women, will double in incidence by 2019.

The increase that we’ve seen in the U.S. we’ve also seen in a number of countries worldwide,” Aschebrook-Kilfoy said. “And, even in lower incidence countries, you see a similar gender disparity.”
Thyroid cancer is the 8th most-common cancer in the U.S., with about 62,000 new cases diagnosed this year, according to NCI data.

Both researchers believe the rise in thyroid cancer rates could be due in part to more advanced imaging tools that catch cases that might have otherwise gone undiagnosed. They also attribute it to emerging environmental and lifestyle risk factors.

Radiation exposure is one of the main risk factors that is known to cause cancer of the thyroid,” Grogan said. “One environmental hypothesis is that ultra-low doses of radiation over decades could cause some type of change in the thyroid.”

Another common environmental hypothesis: pesticides and other chemicals in the environment have been shown to affect thyroid hormone levels, an area where Aschebrook-Kilfoy has focused much of her research.

Along with that there is literature that shows there’s an increased risk of thyroid cancer with people who are obese,” she said.

Other studies have even shown that proximity to volcanic activity (living in a certain region on the Italian island of Sicily, for example) correlates with an increased risk for the disease. Scientists are still not sure why.

Aschebrook-Kilfoy and Grogan have begun to collect biospecimens and DNA samples from patients, which can be used to further study environmental and genetic risk factors that may account for the increase.

Both researchers hope this study will demonstrate the importance of studying survivorship, especially in thyroid cancer, which may have better patient outcomes but is far from “good.”

Aschebrook-Kilfoy et al. Risk Factors for Decreased Quality of Life in Thyroid Cancer Survivors: Initial Findings from the North American Thyroid Cancer Survivorship Study. Thyroid. 2015; doi:10.1089/thy.2015.0098 [Abstract]

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Ionizing radiation exposure promotes fusion oncogene formation

The accident at the Chernobyl nuclear power plant exposed hundreds of thousands of individuals to high levels of ionizing radiation. In the years immediately following the disaster, there was a sharp increase in the number of papillary thyroid cancers (PTC) in patients that were children at the time of the explosion.

In a recent issue of the Journal of Clinical Investigation, James Fagin and colleagues at Memorial Sloan-Kettering Cancer Institute, examined tissues from Ukrainian PTC patients that were children at the time of the Chernobly catastrophe and identified their cancer-driving mutations.

The authors found that the majority of patient tumors had chromosomal rearrangements that resulted in fusion oncogenes. Many of these fusion events promoted upregulation of MAPK signaling, which is a common cancer-associated pathway. In contrast, fusion oncogenes were less common in PCT tumors from patients from the same geographical region, but had not been exposed to radiation.

In the accompanying commentary, Massimo Santoro and Francesca Carlomagno of the University of Naples discuss how this study provides new insight into how ionizing radiation exposure promotes cancer development.

Ricarte-Filho et al., (2013). Identification of kinase fusion oncogenes in post-Chernobyl radiation-induced thyroid cancers. J. Clin. Invest., doi:10.1172/JCI69766 [Article]

Data reaffirms test’s ability to identify benign thyroid nodules

A Gene Expression Classifier test can drastically reduce the problem of unnecessary surgeries in thyroid nodule assessment

The latest study co-led by a CU School of Medicine researcher has confirmed that a Gene Expression Classifier (GEC) test can drastically reduce the problem of unnecessary surgeries in thyroid nodule assessment. These indeterminate nodules are being evaluated with a new molecular diagnostic test that measures the expression levels of 142 genes. This test is able to identify which initially indeterminate nodules are highly likely to be benign, and thus allows patients to avoid unnecessary diagnostic surgery.

This multi-site study co-led by Bryan R. Haugen, MD, professor of medicine and pathology at the University of Colorado School of Medicine provides the first long-term look at how these patients fared, and its findings reaffirm the performance of the Afirma Gene Expression Classifier (GEC). Haugen said “Each year, tens of thousands of patients with thyroid nodules have surgery to remove all or part of their thyroids. This is due to fine needle aspiration (FNA) cell test results that are indeterminate or inconclusive yet raise suspicions for thyroid cancer. Often times, most of these nodules prove to be benign. Our findings suggest that when the GEC identifies an otherwise indeterminate thyroid nodule as benign – which it does about 50% of the time – it is comparable in accuracy to a benign diagnosis by cytopathology, This fact and the degree to which physicians and patients in the study opted against surgery when the molecular test result was benign underscore the test’s potential to drastically reduce the problem of unnecessary surgeries in thyroid nodule assessment.”

Researchers analyzed all patients who had received Afirma GEC testing following indeterminate FNA biopsy results at five academic medical centers between 2010 and 2013. The GEC identified 174 of 339 (51%) indeterminate nodules as benign and, among these, 71 had documented clinical follow-up for an average of 9 months. Of these, only one nodule proved cancerous, demonstrating a very high negative predictive value (NPV) for the GEC. This finding is consistent with results from an earlier prospective, multicenter clinical study. Additionally, in the new study only 6% of patients with nodules identified as benign by the GEC test underwent surgery. This is a substantial reduction compared to traditional surgical rates for patients with cytologically indeterminate thyroid nodules.

Thyroid nodules are common, but only approximately 5-15% prove malignant. Most nodules are evaluated using FNA, with approximately 525,000 thyroid nodule FNAs performed in the U.S. in 2011 to rule out cancer. In most cases, the results are benign, yet in approximately 15-30% of cases the results are indeterminate – not clearly benign or malignant. Because of the risk of thyroid cancer, most of these patients have historically been recommended for surgery to remove all or part of the thyroid to obtain a final diagnosis. However, such indeterminate nodules prove ultimately benign in 70-80% of cases. For these patients, the surgery was not needed and they were unnecessarily exposed to the cost, risk and morbidity of this intervention. Additionally, most patients subsequently require lifelong thyroid hormone therapy.

The study is published online in the Journal of Clinical Endocrinology & Metabolism and its findings were presented recently at the 83rd Annual Meeting of the American Thyroid Association, held in Puerto Rico.

The long-term findings built on the previous study which demonstrates the Afirma Gene Expression Classifier’s accuracy was published in the New England Journal of Medicine.

Alexander et al., (2013). Multicenter Clinical Experience with the Afirma Gene Expression Classifier. JCEM, EPub Ahead of Print, doi:10.1210/jc.2013-2482 [Abstract]