'I Don't Want to Die': Surprising Fears About Thyroid Surgery

Interviewer: Angela M. Leung, MD, MSc; Interviewees: David C. Lieb, MD; Lilah F. Morris-Wiseman, MD


May 12, 2020

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A young patient in a thyroid cancer chat room discussed his surgery that was planned for the next day: "I'm very scared. I don't want my life to really end tomorrow."

As endocrinologists, we frequently talk to patients who need thyroid surgery. We talk about how thyroid cancer is slow-growing and how most cases are successfully treated with surgery. We discuss surgical risks like voice changes and the need to take pills every day to replace the thyroid's function and/or to supplement calcium. We tell them that they will quickly be able to resume normal activities. We ask them if they understand and tell them not to worry. But are we asking the right questions? Do we know what's really worrying patients?

One study found that patients having thyroid surgery were most worried about voice changes, complications from surgery, and pain far more than they worried about returning to daily activities. Although deaths related to thyroid surgery are uncommon (approximating 7 deaths per 10,000 operations), patients may feel like their lives may be permanently altered from a surgery that we perceive as routine. So how do we best address these concerns?

Angela M. Leung, MD, MSc, spoke with David C. Lieb, MD, an endocrinologist, and Lilah F. Morris-Wiseman, MD, an endocrine surgeon, about their experiences. They shared some common patient worries they have encountered and tips to improve the clinician-patient relationship while managing thyroid disease.

What are some common concerns that patients have when they need thyroid surgery?

David C. Lieb, MD

Lieb: I've found that patients in my practice worry about some of the same things I imagine that I would worry about: cost of treatments, surgical risks, thyroid hormone replacement after surgery, etc. Patients often have concerns that I might not realize, including changes in their voice that they may experience and how it may affect their work, and the appearance of their neck after surgery. I try to approach this head-on by asking open-ended questions about their specific fears related to surgery, potential complications, and medications. Asking "What worries you the most?" is a helpful way to start an individualized conversation that focuses on the patient's concerns.

I find that this helps to set expectations. I take patients through what they will experience before, during, and immediately after hospitalization: How long can they expect to be in the hospital? Who will be the members of their hospital care team? Will there be medical students, residents, and fellows involved in their care? How often will they have blood work—such as calcium levels—checked, and what will we do with the results? I do my best to consider their specific worries and go into detail regarding how those concerns will be addressed and mitigated.

Lilah F. Morris-Wiseman, MD

Morris-Wiseman: As an endocrine surgeon, I frequently encounter patients who have a lot of questions about their upcoming thyroid surgery. With any thyroid surgery, patients worry about needing to commit to taking thyroid hormone replacement indefinitely. We know that there is an effective medication that "replaces" thyroid function with one pill a day (levothyroxine, or LT4), but this concern may be the most common area of disconnect between patients and physicians because many patients have considerable symptoms after surgery, even with "normal" labs.

Patients do worry about how they will feel after thyroidectomy. There is a subset of patients with hypothyroidism who have substantial symptoms despite being on appropriate thyroid hormone replacement therapy that results in normal thyroid function (as determined by TSH levels). One study found that patients taking LT4 for any reason who had resulting normal TSH values had significantly more difficulties with memory, word finding, generalized aches and pains, ability to think clearly, and clumsiness compared with controls. Feeling tired or lethargic and gaining weight are the most significant symptoms in patients with normal thyroid function on LT4. Many patients report feeling the need for new treatments for hypothyroidism.

Public chat rooms on thyroid disease are filled with patients commenting that doctors are "looking only at the labs" and not listening to them about their symptoms. One patient told me, "I went to every specialist I was sent to. I did everything they asked. No one would listen." Similarly, a chat room comment reads, "Unfortunately, there are so many [doctors who]... will tell you 'your numbers look fine' and leave it at that. Never mind that you are having multiple symptoms that [say] otherwise."

In a 2018 study, 81% of surveyed patients had switched doctors at least once because they were not satisfied with the treatment they were receiving, and 54% had switched doctors at least twice. In this regard, physicians need to find balance between rigidity in following evidence-based guidelines and really listening to patients' symptoms and working with them in a shared decision-making model.

What about patients' worry regarding their thyroid cancer? What is our understanding in this area?

Lieb: A recent study found that patients at low risk for recurrence of their well-differentiated thyroid cancer were worried about dying from their disease. And it wasn't a small percentage; about 40% were worried about dying from low-risk thyroid cancer. Furthermore, almost 60% of patients were worried about their family members being at risk of developing thyroid cancer.

In another study of patients with a low risk for recurrence and mortality from thyroid cancer, almost a quarter of those surveyed overestimated their risk for recurrence and 12.5% overestimated their risk of dying from thyroid cancer. The authors noted that having a lower education level (less than a high school diploma) was associated with patients overestimating their risk for recurrence. Hispanic ethnicity was also associated with a higher likelihood of overestimating recurrence risk.

Knowing this information has changed my approach to patient care and counseling. I discuss family history with all of my patients and ask if they have children or siblings about whom they may be worried. With attention to their specific type of thyroid cancer, I review the risks for those individuals in their family and how they may need to be screened. At each visit, I reassess each patient's risk for recurrence of cancer, and if it's low I tell them so.

I increase the time between blood thyroglobulin measurements and neck ultrasounds in patients who have had an excellent response to therapy, in accordance with American Thyroid Association guidelines. Unnecessary lab testing and imaging lead to more worry with no proven benefit.

Morris-Wiseman: A common source of patient worry is indeed related to thyroid cancer recurrence or death. Fortunately, most thyroid cancers are slow-growing and treatable; only a small number of patients with differentiated thyroid cancer have recurrence or die of their disease.

I recall evaluating a new patient to my practice, a healthy woman in her early 40s who had had curative surgery for papillary thyroid cancer 6 years earlier. When I discussed the normal results of her labs and ultrasound, showing no evidence of disease, she shed tears of relief.

To my surprise, despite the excellent prognosis and long-term absence of disease in most cases, patients do worry. In a study of nearly 1000 Canadian thyroid cancer survivors, younger age (≤ 50 years old) and current disease status (suspected or proven recurrent disease) were associated with the greatest cancer-related worry despite the fact that younger patients are far less likely to die of thyroid cancer than older patients.

This recognition of patient worry has led me to talk to patients more about their concerns and provide education about prognosis but to not discount their fears. Hearing that thyroid cancer is a "good cancer" or "no big deal" may be dismissive of a patient's anxiety.

What are key issues that patients must understand postoperatively before they are referred back to the endocrinologist for long-term management?

Lieb: After surgery for thyroid disease, whether benign or malignant, patients need to understand how to take thyroid hormone properly and how to recognize symptoms of hypoparathyroidism and hypocalcemia. I'm fortunate to work with a great group of thyroid surgeons who involve us in our patients' care before, during, and after hospitalization. Caring for a patient with thyroid disease truly requires a multidisciplinary team approach, and communication is crucial.

Morris-Wiseman: I follow many of my patients with thyroid cancer before and after surgery. Continuity of care is critical. When I receive a pathology report for cancer, I call and discuss my thoughts on management with the endocrinologist. Being able to tell the patient that their treating physicians have discussed their case is critical. Providing additional disease-related education has been shown to improve thyroid cancer survivors' actual and long-term perceived medical knowledge.

Because patients may not completely comprehend or remember everything we discuss, I offer resources for additional information, including free materials from ThyCa.org or the American Thyroid Association patient education website.

Have you seen higher levels of concern from patients about their thyroid disease during the COVID-19 pandemic?

Lieb: The COVID-19 pandemic has understandably increased my patients' worries and concerns. Patients with smaller thyroid cancers may find that their surgery is being delayed, as hospitals are having to prioritize which patients undergo surgery. This can lead to significant anxiety. Some individuals who have had thyroidectomies and are on thyroid hormone replacement have questions about their work and how safe it is to carry out their daily activities. Patients are also worried about having enough medication to get them through our current crisis. The American Thyroid Association has addressed these concerns on its COVID-19 FAQ page.

What would be your top points to convey to the primary care community on their comanagement of patients with thyroid disease?

Morris-Wiseman: Many of my patients are referred directly from primary care physicians after an ultrasound or a biopsy. For a patient to hear that they have a mass on their thyroid or to receive a biopsy report with the word "atypia" provokes a lot of fear. We know that thyroid nodules are very common and most are not cancer; the majority of thyroid cancers are slow-growing. Patients get frustrated and worried when a referring physician defers any and all discussion of results to the surgeon.

Many of the patients I evaluate don't need any surgery. I hope primary care physicians feel comfortable reassuring the patient or calling me to discuss the referral and what information they can provide to the patient.

Lieb: I think the most important thing is for everyone to realize that we are a team and that communication is key. Specialists need to talk with primary care physicians and vice versa. Patients with thyroid disease often have many concerns that we may not have considered. We need to ask our patients what worries them most and then do our best to mitigate those fears.

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