Life-Altering
“Having a diagnosis of thyroid cancer, even with usually a very good prognosis, can be life-altering, said Caitlin P. McMullen, MD, a head and neck cancer specialist at Moffitt Cancer Center, Tampa, Florida.
Most papillary thyroid cancers are cured with surgery alone, sometimes followed by radioactive iodine, she said in an interview. “The surgery involves removing half (lobectomy), or sometimes all (total thyroidectomy), of the thyroid gland.” Patients with lymph node involvement have a longer surgery that includes lymph node removal.
Many patients must also remain on medication permanently to replace their thyroid hormone, she continued. And, after treatment is complete, “patients require regular follow up with bloodwork and imaging for many years to ensure the cancer does not return.”
“Repeated visits, medications, and testing can also result in financial toxicities and repeated disruptions for patients,” she added. “These downstream effects of a thyroid cancer diagnosis can significantly alter a patient’s life.”
Kaniksha Desai, MD, Endocrinology Quality Director at Stanford University School of Medicine, Palo Alto, California, said in an interview that thyroid cancer treatments carry some risks that shouldn’t be overlooked and may affect recovery for years. These include:
- Recurrent laryngeal nerve damage: Thyroid surgery can lead to vocal cord paralysis, affecting speech and swallowing.
- Hypoparathyroidism: Postsurgical damage to the parathyroid glands can cause long-term calcium regulation problems resulting in pain and emergency department visits as well as lifelong supplementation with calcium and vitamin D.
- Radioactive iodine (RAI) treatment: RAI can have side effects such as dry mouth, tear duct obstruction, salivary gland dysfunction, and an increased risk of secondary cancers.
- Psychosocial Impact: Being told they have cancer can create significant psychological distress for patients, including fear of recurrence, body image concerns, and anxiety, all of which persist even with a “good prognosis.”
Fidler-Benaoudia’s studies focused specifically on the psychosocial impact on younger patients. “Facing a cancer diagnosis at a young age really forces the person to hit the ‘pause button’ – they may need to take a break from school or work, and it may impact their relationships with their family and friends.”
“Even if their cancer has a very high survival rate, when a young person receives a cancer diagnosis they are often facing their own immortality for the first time, which can be very distressing,” she said. Many of her study participants also struggled to maintain appropriate thyroid hormone levels with medication, which left them feeling tired, losing hair or gaining weight. The surgery itself “can leave a substantial scar on the throat that is visible unless purposefully covered with clothing or accessories,” she noted. “We found that this scar impacted quite a few survivors’ body image.”
Awareness, Education
Two recent studies pointed to the need for clinicians to be aware of their patients’ reactions to a thyroid diagnosis. Susan C. Pitt, MD, associate professor of surgery and director of the endocrine surgery health services research program at the University of Michigan, Ann Arbor, and colleagues reviewed the literature on patient perception of receiving a thyroid diagnosis and found, “Fear and worry about cancer in general and the possibility for recurrence contribute to lasting psychological distress and decreased quality of life. Patients’ perceptions of their diagnosis and resulting emotional reactions influence treatment decision making and have the potential to contribute to decisions that may over-treat a low-risk thyroid cancer.”
In another recent study, Pitt and colleagues assessed fear of thyroid cancer in the general US population and found that close to half of 1136 respondents to an online survey had high levels of thyroid cancer-specific fear, particularly women and those under age 40. “Because disease-specific fear is associated with overtreatment, targeted education about the seriousness, incidence, and risk factors for developing thyroid cancer may decrease public fear and possibly overtreatment related to ‘scared decision-making,’” the authors concluded.
McMullen added, “Taking the time to educate the patient on the diagnosis, prognosis, and treatments can provide reassurance without being dismissive. Most patients are very receptive and understanding once things are explained thoroughly and their questions are answered. We find that factual information can be even more reassuring for patients than saying, ‘This is a good cancer.’”
Desai advised, “Clinicians should acknowledge the spectrum of experiences patients may have.” They should provide empathy and reassurance as well as personalized discussions regarding prognosis and treatment options. In addition, “they should focus on survivorship care by addressing both the long-term and short-term effects on health and lifestyle that can occur post treatment,” as well as the possible need for mental health support.
“I heard many times in residency that, ‘if you had to have cancer, have thyroid cancer,’ ” Malini Gupta, MD, director of G2Endo Endocrinology & Metabolism, Memphis, Tennessee, and vice chair of the American Association of Clinical Endocrinology’s Disease State Networks, said in an interview.
“One should not want any cancer,” she said. “There are some very aggressive tumor markers in differentiated thyroid cancer that can have a worse prognosis. There are many aspects of thyroid cancer treatment that cause anxiety and a stress burden. Recovery varies from person to person.”
“There needs to be education across all sectors of healthcare, particularly in primary care,” she added. “I personally have medullary thyroid cancer that I found myself while fixing my ultrasound. There are many aspects to survivorship.”
Fidler-Benaoudia, Schulte, McMullen, and Desai declared no competing interests. Gupta is on the speaker bureau for Amgen (Tepezza) and IBSA (Tirosint) and is a creative consultant for AbbVie.
A version of this article first appeared on Medscape.com.