The 5-year survival rate for invasive thyroid cancer is 97.9%, and the 10-year survival rate is more than 95%, according to the National Cancer Institute. This leads some people to refer to it as a "good cancer."
“The idea behind that ‘good cancer’ statement is a positive one,” said study co-author Raymon Grogan, MD, Assistant Professor of Surgery at the University of Chicago Medicine, in Chicago, IL. “It is physicians trying to make people feel better. But, I think it’s had the opposite effect over time.”
The number of thyroid cancer survivors is rising rapidly due to the combination of an increasing incidence, high survival rates, and a young age at diagnosis, according to Dr. Grogan and co-author Briseis Aschebrook-Kilfoy, PhD, Assistant Research Professor in Epidemiology at the University of Chicago Medicine, who lead the North American Thyroid Cancer Survivorship Study (NATCSS).
The incidence of thyroid cancer will double by 2019 and thyroid cancer survivors could soon represent up to 10% of all cancer survivors in the United States, the researchers predicted.
But there’s a difference between surviving and living happily ever after. Once treatment is over, thyroid cancer survivors then face a high rate of recurrence and an anxiety-filled lifetime of cancer surveillance. When the researchers heard clinic patients express these survival concerns firsthand, they sought to study this poorly investigated area.
The investigators recruited 1,174 thyroid cancer survivors whose mean time from diagnosis was 5 years (89.9% were female, average age was 48), and evaluated their quality of life using a questionnaire that assessed physical, psychological, social, and spiritual wellbeing on a 0-10 scale, with 0 being the worst.
Survivors of thyroid cancer reported worse quality of life—with an average overall score of 5.56 out of 10—than the mean quality of life score of 6.75 reported by survivors of other cancer types (including colorectal and breast) that have poorer prognoses and more invasive treatments.
“I think we all have this fear of cancer that has been ingrained in our society,” Dr. Grogan said. “So, no matter what the prognosis is, we’re just terrified that we have a cancer. And, I think this [finding] shows that.”
Thyroid cancer survivors who were younger, female, less educated, and those who participated in survivorship groups all reported even worse quality of life than other study participants. However, after 5 years of survival, quality of life gradually began to increase over time in both women and men, the researchers found.
In order to further understand the psychological wellbeing of the growing number of thyroid cancer survivors, the researchers plan to continue to follow this cohort for the long term.
Dr. Akira Miyauchi
Professor Akira Miyauchi (Figure 1) is President and COO of Kuma Hospital, Center of Excellence in Thyroid Care, Kobe, Japan. He is a Japanese endocrine surgeon, and a pioneer in active surveillance, and visionary in regard to treatment of thyroid cancer. World renowned researcher, and lecturer. As the associate professor of the Department of Surgery, Kagawa Medical University, he proposed and initiated a clinical trial of active surveillance for low-risk papillary micro cancer in collaboration with Kuma Hospital in 1993. In 2001, he was appointed the President of Kuma Hospital. Since then, he has been keen on the study of evaluating treatments for papillary micro cancer, observation versus surgery.
During this episode, the following topics are discussed:
By providing patient an active surveillance brochure prior to FNA, they are more open to not proceeding with surgery for small thyroid cancer management.
Patient voice restores to near normal when repair of laryngeal nerve is done correctly. All surgeons should be executing this to perfection.
When doing next stretches one-day post surgery, patients report feeling much better and less pain, even one year after surgery.
Protocol for delaying surgery depends on the patient’s age. Older patients are less likely to require surgery. 75% of patients will not require surgery for their lifetime.
Akira Miyauchi, MD
35: Rethinking Thyroid Cancer ? When Saying No to Surgery Maybe Best for You with Dr. Allen Ho from Cedars-Sinai in Los Angeles
21: Diagnosed with Thyroid Cancer and You Say No to Surgery with Dr. Louise Davies
50: Regarding Thyroid Cancer, Are You a Minimalist or a Maximalist? with Dr. Michael Tuttle from Sloan Kettering
PAPERS and RESEARCH
Estimation of the lifetime probability of disease progression of papillary microcarcinoma of the thyroid during active surveillance
Comparison of the costs of active surveillance and immediate surgery in the management of low-risk papillary microcarcinoma of the thyroid.
Incidences of Unfavorable Events in the Management of Low-Risk Papillary Microcarcinoma of the Thyroid by Active Surveillance Versus Immediate Surgery
TSH-suppressive doses of levothyroxine are required to achieve preoperative native serum triiodothyronine levels in patients who have undergone total thyroidectomy.
Stretching exercises to reduce symptoms of postoperative neck discomfort after thyroid surgery: prospective randomized study.
Improvement in phonation after reconstruction of the recurrent laryngeal nerve in patients with thyroid cancer invading the nerve. Listen to Doctor Thyroid here!
During this interview, Dr. Tuttle discusses the following points:
About Dr. Tuttle, in his words:
I am a board-certified endocrinologist who specializes in caring for patients with advanced thyroid cancer. I work as part of a multidisciplinary team including surgeons, pathologists, radiologists, nuclear medicine specialists, and radiation oncologists that provides individualized care to patients treated at Memorial Sloan Kettering for thyroid cancer.
In addition to treating patients I am also actively researching new treatments for advanced thyroid cancer. I am a professor of medicine at the Joan and Sanford I. Weill Medical College of Cornell University and travel extensively both in the US and abroad, lecturing on the difficult issues that sometimes arise in the management of patients with thyroid cancer. My research projects in radiation-induced thyroid cancer have taken me from Kwajalein Atoll in the Marshall Islands to the Hanford Nuclear power-plant in Washington State to regions in Russia that were exposed to fallout from the Chernobyl accident.
I am an active member of the American Thyroid Association (ATA) and the Endocrine Society. In addition to serving on the ATA committee that produced the current guidelines for the management of benign and malignant nodules, I am also a Chairman of the National Comprehensive Cancer Network Thyroid Cancer Panel, a consultant to the Endocrinologic and Metabolic Drugs Advisory Committee of the FDA, and a consultant to the Chernobyl Tissue Bank.
Dr. Allen Ho is a fellowship-trained head and neck surgeon who focuses on head and neck tumors, including HPV(+) throat cancers and thyroid malignancies. As director of the Head and Neck Cancer Program and co-director of the Thyroid Cancer Program, he leads the multidisciplinary Cedars-Sinai Head and Neck Tumor Board, which provides consensus management options for complex, advanced cases. Ho’s research interests are highly integrated into his clinical practice. His current efforts lie in cancer proteomics, HPV(+) oropharyngeal cancer pathogenesis, and thyroid cancer molecular assays. He has presented his research at AACR, ASCO, AHNS, and ATA, and has published extensively as lead author in journals that include Nature Genetics, Journal of Clinical Oncology, Cancer, and Thyroid. Ho serves on national committees within the ATA and AHNS, and is principal investigator of a national trial on micropapillary thyroid cancer active surveillance (ClinicalTrials.gov ID: NCT02609685). He maintains expertise in transoral robotic surgery (TORS), minimally invasive thyroidectomy approaches, and nerve preservation techniques. Ho’s overarching mission is to partner with patients to optimize treatment and provide compassionate, exceptional care.
Weighing treatment options for thyroid cancer, with deep consideration for the patient’s lifestyle, could become the new norm in assessing whether surgery is the best path.
Dr. Allen Ho states, “if a patient is a ballerina or an opera singer, or any other profession that could be jeopardized due to undesired consequences of thyroid cancer surgery, then the best treatment path maybe active surveillance.” Undesired consequences of thyroid cancer surgery could be vocal cord paralysis, damage to the parathyroid glands resulting in calcium deficiencies, excessive bleeding or formation of a major blood clot in the neck, shoulder nerve damage, numbness, wound infection, and mental impairment due to hypothyroid-like symptoms. Or in the case of a ballerina, undesired scarring could jeopardize a career.
The above risks occur in approximately 10% of thyroid cancer surgeries. Although, some thyroid cancer treatment centers have a much more reduced incidence of undesired consequences, while others much higher.
In order to address the above and remove the risk of thyroid cancer surgery, Cedars-Sinai has become the first west coast hospital to launch an active surveillance study as optional treatment for thyroid cancer. The study includes 200 patients from across the country who have chosen the wait and see approach rather than hurry into a surgery that could result in undesired, major life changes. By waiting, this means these patients will dodge the need to take daily hormone replacement medication for the rest of their lives as the result of a thyroidectomy.
Other active surveillance research
Although this is the first study for active surveillance on the west coast, other studies are ongoing, including Sloan Kettering as directed by Dr. Tuttle, Kuma Hospital in Kobe as directed by Dr. Miyauchi, and the Dartmouth Institute as directed by Dr. Louise Davies.
Dr. Ho says the “de-escalating” of treatment for thyroid cancer will become the new trend. The active surveillance thyroid cancer team at Cedars-Sinai is orchestrated to the patient’s needs, and includes the pathologist, endocrinologist, and surgeon.
The past year has been fascinating and highly fruitful year for Dartmouth Institute Associate Professor Louise Davies, MD, MS. A 2017-2018 Fulbright Global Scholar, Davis spent several months in Japan at the Kuma Hospital in Kobe, Japan, studying the hospital's pioneering surveillance program for thyroid cancer. Davies, the chief of otolaryngology-head & neck surgery-at the Veterans Affairs Medical Center in White River Junction, Vermont, has researched U.S. patients' experiences of monitoring thyroid cancers they self-identify as overdiagnosed, and has found that such patients often feel unsupported, even ostracized. Following her stay in Japan, Davies, who also develops and teaches courses in qualitative research methods in Dartmouth Institute's MPH programs, spent several months in the U.K. at the Health Experiences Research Group (HERG) at Oxford University. There, she learned skills that will help her develop web-based materials to raise public awareness about surveillance, surveillance programs, and overdiagnosis in general.
As if the year wasn't packed enough, Davies also visited the site of the Fukushima Daiichi nuclear power plant, site of the 2011 nuclear accident in Japan. Unrelated to her Fulbright work, Davies is a member of an international task force organized through the International Agency for Research on Cancer, a branch of the World Health Organization. The task force will make recommendations on the monitoring of the thyroid gland after nuclear accidents. Learn more about her incredible year and what's next for her research in overdiagnosis!
Q: As a practicing physician, how did your interest in overdiagnosis develop?
A: My interest in over diagnosis grew from my work with Dr. Gil Welch, dating back to 2004. He was and is a mentor to me, and we developed the work on thyroid cancer together. I have always had an interest in making sure that patients receive care that aligned with their values. The problem of overdiagnosis is particularly intriguing because if people do not understand the concept, they may undergo treatment that, had they understood more about their risks, they might not have elected. Finding ways to solve that problem has been a fascinating focus for me.
Q: Is overdiagnosis and/or overtreatment in thyroid cancer on the rise, if so what accounts for this increase?
A: Thyroid cancer incidence has more than tripled in the U.S. over the past 30 years. The majority of the increase has been due to the detection of small cancers, which we know exist as a subclinical reservoir in otherwise asymptomatic people. As more attention has been drawn to the problem of overdiagnosis, the rate of increase has slowed, which has been gratifying to see; although it has not stopped completely or reversed. In the most recent national guidelines on the treatment of thyroid cancer (from the American Thyroid Association), there has been a clear suggestion that treatment should be more conservative for the small cancers that are so commonly detected now. It is not yet clear how much of an impact these new guidelines have had on practice patterns.
Q: You've studied the experiences of patients who are diagnosed with thyroid cancer but choose not to intervene. What are some of the commonalities you've found?
A: The patients who were the first to understand that their small, asymptomatic thyroid cancers picked up incidentally might not need immediate intervention, but instead could be monitored through regular checkups and active surveillance did not receive a lot of support from the medical community. Many managed their cancer by keeping it a secret, which can be stressful in itself, and several stopped getting follow ups-the recommended care if surveillance rather than interventions chosen for a small thyroid cancer. This was a unique group of patients who represented the first people to undertake what is a new and incompletely understood treatment option in the U.S. As such, they are probably more representative of people going against medical convention than thyroid cancer patients who elect to undertake surveillance, per se.
Q: What will/have you been looking for when evaluating the surveillance program at Kuma Hospital? How will you combine this with your own U.S. pilot data?
My goal in going to Kuma Hospital last fall was to understand more about the active surveillance program they have there. They were the first in the world to run such program and collect data on it, and have been doing so since 1993. I wanted to understand their data on active surveillance in more detail. I wanted to understand the patient experience of being on surveillance, and how the program worked operationally. I was able to do all those things and gathered patient experience data through a survey as well as interviews. I also was lucky to get to spend a fair amount of time in the operating room, where I learned a number of new surgical techniques that will advance my own practice in thyroid surgery. My goal is to report what I learned at Kuma Hospital as broadly as possible, so that people in the U.S. begin to feel comfortable adopting active surveillance as a method of managing the early thyroid cancers that are appropriate candidates for surveillance.
What's next for you in overdiagnosis research?
My work on the task force about thyroid monitoring after nuclear power plant accidents has given me a new appreciation for the complexity of public health communication about risk, emergency preparedness, and the problem of over diagnosis when it comes to policy setting. I hope to be able to continue to contribute in other ways to the broader public health discussion about over diagnosis. In my next steps looking at the epidemiology of thyroid cancer, I plan to focus on understanding more about why we see such variation in thyroid cancer incidence across geography, age groups, and gender.