Botched thyroid surgery maybe worse than cancer | A patient’s story
How often does thyroidectomy result in surgical errors or unwanted outcomes? The answer is much more often than reported. The reported surgical error rate for papillary thyroid cancer is 2 – 3%, however, research reveals errors are nearly six-times that number. Meanwhile, error rate for medullary thyroid cancer is nearly 26%. Unfortunately, there is no legislation that requires accurate reporting of surgical errors, therefore, we cannot know the exact rate. What we know is, thyroid cancer surgery is not as safe as previously reported. And the consequences can be dire.
Botched surgeries vs. unwanted outcomes
For the sake of this article, there is a difference between unwanted outcomes and botched surgeries. The difference lies in which unwanted outcomes can be avoided based on the surgeon’s skill. For example, if the laryngeal nerve is severed during thyroid surgery, an unwanted outcome can be avoided by repairing it. But, repair only happens if the surgeon is prepared, trained, and has the right tools available. Therefore, if the surgeon does not repair the nerve due to lack of skill or training, then it is botched surgery. An alarming statistic, 90% of thyroidectomies performed in the United States are done by surgeons performing fewer than ten surgeries annually. Does this mean all high volume surgeons are skilled? No. The point is, not all surgeons are equal. And, we should call surgical errors resulting from lack of skill or knowledge, exactly what they are, botched surgeries. Some veteran surgeons will say there is simply no excuse for unwanted outcomes or errors resulting from thyroidectomy, even in the most complex cases.*
What are the surgical errors resulting from thyroid surgery and are they avoidable? Below, I will describe the unwanted outcomes in laymen terms. The language is intended to be simple and easy for the patient to understand. This is important because most thyroid cancer patient resources score low for readability. According to research, many thyroid cancer resources get a failing grade when it comes to patient comprehension, including information from Harvard Medical School, NIH (National Institutes of Health) and Mayo Clinic. Today’s thyroid education resources confuse patients.
Under-reporting: as researched by the University of Michigan
A study about the risks of thyroid surgery, by Dr. Megan Haymart and Dr. Maria Papaleontiou, reveals surgical errors are nearly five times what is reported. Their research lists thyroid surgery errors as vocal cord paralysis, calcium impairment, and bleeding. These errors effect the patient for life. We will explore these three errors, along with other consequences of thyroid surgery.
- Vocal cord paralysis: it occurs when the Recurrent Laryngeal Nerve is Injured (RLNI). If the nerve is damaged during surgery, it can be immediately repaired if the surgeon is skilled and prepared. If a damaged RLN is not repaired, it results in lifelong problems for the patient related to swallowing, breathing, and speaking. Patients must screen their surgeon and ask if he/she uses nerve monitor equipment during surgery and if he/she has the right tools and training to repair a damaged RLN. Also, patients should ask the surgeon how many times he/she has damaged the RLN or caused vocal cord paralysis during surgery.
- Parathyroid impairment: This happens when a surgeon injures the parathyroid glands; known as hypoparathyroidism. The result, lifelong symptoms that include tingling in the lips, fingers, and toes; dry hair, brittle nails, and dry, coarse skin; muscle cramps and pain in the face, hands, legs, and feet; cataracts; dental problems; memory loss, headaches, and muscle spasms. And, lifelong dependency on calcium carbonate and vitamin D supplements.
- Bleeding: called neck hematoma, it represents a major concern for surgeons because it can result in severe and even life-threatening complications. In fact, postoperative hemorrhage may result in airway compression and respiratory distress. Bleeding during thyroidectomy puts the RLN and the parathyroid glands at significant risk of injury.
10 additional consequences of thyroid surgery
Risks of thyroid surgery are much greater than the above three surgical errors. Often, patients are surprised by life changes that come with thyroid surgery. These usually come as surprise because patients are told it is the ‘good’ cancer, and that it is easily treated with a low risk surgery and by taking a ‘little’ pill each morning. Most patients are never warned about the serious risks and consequences of thyroid surgery.
If the surgeon is skilled, risks are mitigated. Fortunately, there are a number of highly skilled thyroid surgeons. But, if the surgeon is not skilled, errors and botched surgery spike significantly.
Consequences of thyroid surgery include:
- Residual cancer: with advancements in technology and ultrasound, this should never occur. But, a less skilled surgeon will sometimes leave malignant lymph nodes behind. This will leave the door open for more surgery. A patient may choose to forego a follow up surgery and opt for active surveillance instead (see below).
- Shoulder impairment: very little research and data exists regarding shoulder pain due to thyroidectomy, however, it occurs often and is very painful. On average, 10.2 years after surgery, DTC (differentiated thyroid carcinoma) patients reported a 58.7% prevalence of shoulder pain, which was significantly more than the 13.8% reported by healthy controls. The condition has a dramatic impact on quality of life (QoL).
- Problems swallowing: under-reported in medical journals, but a prevalent problemrelated to thryoidectomy is acid reflux and aspiration, or problems swallowing.
- Breathing problems: this will most often occur when there is damage to the recurrent laryngeal nerve (RLN) which results in paralysis of the vocal cord. The RLN is important for vocalization, breathing and swallowing. Damage to the RLN will result in shortness of breath. Breathing problems may also occur if a clot forms, blocking the air passage, which can sometimes result in death.
- Quality of life (QoL) downgrade: University of Chicago Medicine researchers Briseis Aschebrook-Kilfoy, PhD and Raymon Grogan, MD, say “Often times, family members don’t take thyroid cancer treatment seriously. Society, healthcare professionals, and the media have minimized thyroid cancer, and in return it has made patients feel minimized and alienated.” During their research, findings show a significant downgrade in QoL for patients.
- Financial strain: Dr. Jonas de Souza’s research finds a high rate of financial strain for thyroid cancer patients, including bankruptcy. The rate of financial strain is disproportionately high for thyroid cancer patients compared to other cancers.
- Brain fog: mental health is impacted by thyroidectomy. Research is lacking, however, almost all thyroidectomy patients complain of mental impairment including panic attacks, brain fog, forgetfulness, anxiety, lack of motivation, and difficulty concentrating. Meanwhile, these complaints are discounted by many physicians, further alienating and minimizing the patient.
- Stiff, tight neck: not enough attention is given to the need for neck exercises immediately following thyroidectomy. In Japan, neck exercises are encouraged within 24 hours post surgery. Patients who do so report less stiffness and tightness in years to come. Neck tightness will progressively worsen, year after year, post thyroidectomy.
- Weight gain: studies recognize weight gain in thyroidectomy patients, however, the number of patients complaining of this condition is not accurately represented in research. Meaning, the complaint is often discounted by physicians, including endocrinologists. Many doctors blame the weight gain on diet or menopause. Patients should be told in advance, if a thyroidectomy is performed, it will result in weight gain more often than not. And, in many cases, such weight gain is not due to menopause, diet, or other factors. Instead, it is caused by thyroidectomy and research has yet to determine exactly why.
- Osteoporosis: research confirms a direct correlation between TSH suppression and osteoporosis. I was first alerted to this issue when going for an MRI; my technician said she observed severe osteoporosis in thyroidectomy patients taking Levothyroxine, compared to her ‘control group’ patients, or those not taking synthetic thyroid replacement. Her hypothesis is based on two decades of observations as an MRI technician.
Collateral damage of thyroid surgery: the inevitable
- Scarring: unavoidable. Every patient will have a scar, the severity will depend on genes, skin type, and skill of surgeon. Robotic surgery goes through the armpit and leaves no neck scar, but this type of surgery is not recommended.
- Levothyroxine: after total thyroidectomy, patients will be dependent on levothyroxine for life. Levothyroxine is the number one prescribed drug in the United States. Side effects of include fever, hot flashes, sensitivity to heat, sweating, headache, nervousness, irritability, nausea, sleep problems (insomnia), changes in appetite or changes in weight, changes in menstrual periods, hair loss, and osteoporosis.
- Lifelong inconvenience of blood testing: relatively frequent visits to the laboratory to monitor blood levels for thyroglobulin, TSH, T4, T3, free T3, calcium, and free T4. Along with frequent visits to the the clinic for ultrasound and CT scans possibly.
- RAI: or, radioactive iodine. Regardless of revised guidelines recommending against broad use of RAI, it is overused; some patients are receiving the treatment without necessity. The consequences of RAI can be serious, and include:
Many thyroidectomy patients experience a quality of life downgrade. In some cases, it is only a matter of when. The problem with quantifying QoL, is it is different for each person. In severe thyroid cancer cases, QoL may improve, but these cases are rare. Why is QoL impacted greatly when the thyroid is removed? When answering this, it is important to note the thyroid’s function; it controls the entire body. The thyroid regulates breathing, heart rate, central and peripheral nervous systems, body weight, muscle strength, menstrual cycles, body temperature, and cholesterol levels.
If one canvasses Facebook thyroid cancer support groups, there is an epidemic of thyroid surgery problems. With this being the case, why are some U.S. doctors in such a hurry to perform thyroidectomies?
In Japan, when treating papillary thyroid cancer patients, everything is done to preserve the thyroid. In doing so, it avoids lifelong dependency on thyroid replacement hormone. Even when cancer is present, hemi-thyrodectomy is the typical treatment. Also in Japan, thyroid cancer is often treated with active surveillance, which means observing non-life threatening thyroid cancers instead of removing them. Active surveillance was pioneered almost thirty years ago by Dr. Miyauchi from Kuma Hospital in Kobe. There are over 1000 active surveillance patients in Dr. Miyauchi’s treatment group, and not one has died from thyroid cancer. Furthering this evidence, a Finland study found 35% of people die with thyroid cancer, but not from thyroid cancer. This was discovered while researching cadavers that died from non-thyroid related causes.
Active surveillance⎜the safest surgery is no surgery
Dr. Michael Tuttle from Memorial Sloan Kettering Cancer Center in New York, was the first U.S. doctor to adopt Dr. Miyauchi’s active surveillance protocol. Dr. Tuttle acknowledges active surveillance it is not for everyone; he defines two types of thyroid cancer patients, minimalists and maximalist. Dr. Tuttle says when patients hear the ‘C’ word it creates anxiety. And, some will choose surgery regardless of the option to choose active surveillance. Those who choose surgery no matter what, are called maximalists. Meanwhile, those who choose to defer intervention, or choose active surveillance, are called minimalists.
If a patient chooses to move forward with a thyroidectomy, they must be cautioned about possible consequences.
Advice to patients: profile your doctor
90% of thyroidectomies in the U.S. are performed by doctors doing fewer than ten such procedures annually. The ATA guidelines recommend selecting a surgeon who performs no less than 25 annual thyroid surgeries. Many high-volume surgeons conduct more than 300 thyroidectomies annually. Patients must do their own research, and seek multiple opinions. In some cases, a well researched patient will gain information that is new to their doctor.
“Increasingly, doctors will be humbled by patients knowing something they don’t.” Dr. Louise Davies, The Dartmouth Institute
Maybe, the most important screening method when selecting a surgeon is noting what questions he or she asks the patient. Mainly, if the patient is asked what they do for a livingand what kind of life they want. Cancer free and risking quality of life, maybe less attractive than cancer and maintaining current quality of life, even though no guarantees.
“The first thing we must ask the thyroid cancer patient is, ‘What do you do for a living?’ Don’t let the treatment be worse than the disease.” Dr. Ashok Shaha, Memorial Sloan Kettering
Papillary thyroid cancer is one of the least dangerous cancers – yet the surgery risks can be grave. In an effort to help patients screen a surgeon, Duke University lists 8 Questions a patient should present.
Advice to surgeons: set patient expectations and practice ‘shared decision making’
Not all patients are the same. Papillary thyroid cancer is relatively low-risk. Very few people die from it. And thyroid surgery is relatively safe. Yet, before rushing into it, doctors must take the time to ask patients what kind of life they want, and explain repercussions of thyroid surgery. In his book, Being Mortal: Medicine & What Matters in the End by Atul Gawande, the author describes such dialogue as ‘shared decision making’.
“Interpretive doctors ask, ‘What is most important to you? What are your worries?’ Then, when they know your answers, they tell you about the red pill and the blue pill and which one would help you achieve your priorities. Experts have come to call this shared decision making.” Atul Gawande, Being Mortal
According to Gawande, surgeons must ask their patients, “What kind of life do you want?”
Emotional Intelligence – Interpretive Doctors
The best surgeons invest a lot of time conducting pre-surgery consoling, warning of risks, and profiling patients. Much attention must be given to reducing a patient’s anxiety after telling them the ‘C’ word. The best surgeons do not look at a patient as a case with a single approach, instead they provide customized care.
I received a diagnosis of thyroid cancer in 2013. At that time, my career included professional speaking, playing competitive sports, and a high quality of life. I had no symptoms; the 1cm nodule was discovered during an annual physical. When the biopsy revealed cancer, my surgeon created urgency. When I asked if some patients choose to not move forward with surgery, my surgeon responded with a patronizing, “Why would you do that?” Hearing his tone of voice, and hearing him say no one chooses to not move forward with surgery, resulted in being rushed into the operating room. Not once did my surgeon ask what I do for work. Not once did my surgeon ask what I value most in life. Not once was I told about possible complications of thyroid surgery or possible surgical errors. Not once was I told about some patients choosing active surveillance. Instead, my surgeon boasted about the numerous patients that travel from around to see him. He made it sound like he was a world renowned thyroid surgeon. I later learned this claim was embellished as well as his reported volume of surgeries.
If my surgeon asked the right questions, I would be identified as a what Dr. Tuttle describes as a minimalist; foregoing thyroid surgery and choosing active surveillance instead. But I was never asked questions about what I wanted or valued most in life. Asking questions requires emotional intelligence and is the first step of shared decision making.
Emotional intelligence is a skill, and maybe just as important as surgical skill. The combination of both, makes the best surgeons. One without the other, breeds mediocre outcomes, regardless of volume.
“When we as physicians are not able to respond with empathy and openly when patients bring us new medical information, we really miss out. It is important to remember the impact on patients.” Dr. Louise Davies, The Dartmouth Institute
When a surgeon lacks emotional intelligence, and is not capable of asking the right questions or implementing shared decision making, the consequences can be grave. Surgeons must place the patients’ wants first, and not be in a rush to operate. Some surgeons must escape the one size fits all approach when it comes to treating thyroid cancer.
“If all you have is a hammer, everything looks like a nail.” Bernard Baruch
Inevitably, there are situations when thyroid cancer surgery is the only option. But, no matter the severity of thyroid cancer, extensive questions should be asked to the patient prior to surgery. For example, should a surgeon ask the patient for his/her wishes if a nodule is found, that if removed, could jeopardize the RLN? Maybe. Maybe the patient would choose to leave it if voice is more important than cancer free and risk of vocal cord paralysis. If a surgeon lacks the ability to practice shared decision making, then maybe we should consider the addition of an emotional intelligence specialist on all treatment teams. This person would be invaluable in consulting the patient, especially in cases where the surgeon is lacking emotional intelligence (eq). Can eq be learned? In some cases no. Some say it is a skill, just as much as surgery is a skill.
A patient’s story
I host Doctor Thyroid with Philip James; the podcast features interviews with some of the world’s leading thyroid doctors, and is the information I sought when diagnosed with thyroid cancer. The Doctor Thyroid podcast is intended to help others, providing the information needed to help make the most informed decisions possible, easily accessible online and at no cost to the patient.
When I was diagnosed, thyroid cancer information was not easily available. The result, I was hastily rushed into surgery by an overly eager surgeon. With the Doctor Thyroid podcast, hopefully it helps others avoid a similar fate. The result of my thyroid cancer surgery include the following:
My vocal cord was paralyzed.
Cancer was left behind.
I have calcium impairment.
Additionally, I experience nearly every bad outcome of thyroid surgery listed on this article’s banner image, including shoulder pain, problems swallowing, problems breathing, voice change, stiff neck, tingling in the lips, fingers, and toes, dry hair, hair loss, disappearing eyebrows, muscle cramps, change in vision, dental problems, memory loss, muscle spasms, and thoughts of suicide. Suicide?
Suicide and thyroid surgery
According to data from the SEER database from 1973 to 2011, patients with head and neck cancer are three times more likely to die of suicide than age, race, and sex-matched controls. Suicide rates were highest in patients with hypopharyngeal cancer and laryngeal cancer. The researchers suggest that these cancer sites may be associated with loss of ability to eat or speak, critical functions that are closely linked with quality of life, depression and demoralization. Is there a correlation between RLN injury during thyroid cancer surgeries and suicide rates? Based on past research, we can hypothesize the answer is yes.
Life goes on
I may look ‘normal’ on the outside, yet, like so many other thyroid cancer surgery patients, the battle inside is never ending. Since my thryroidectomy, I feel a steady shrinking and frailty of my body. Compared to pre-surgery, quality of life is not good and includes mental and physical setbacks. If there is a bright side, in this struggle, I feel greater compassion toward others. I am forced to focus on breathing and stretching, and avoid stress and the people and situations that trigger it. The physical challenges created by botched surgery have put me in better touch with my self. I ponder mortality often, and value each day more than ever. Are these benefits of thyroid surgery? No. I could probably receive the same enlightment in other ways, such as yoga retreats and meditation.
My surgeon blamed statistics, not his performance. For a long time, I suffered in silence. Regardless of volume, not all surgeons are skilled or created equal. Not all surgeons have emotional intelligence. And, some surgeons lie about their performance. Is this unethical? Yes. Does it occur? Yes.
Patients must be diligent when selecting a surgeon. Look into the surgeon’s eyes. Measure the surgeon for emotional intelligence. Pay attention to the questions the surgeon asks. Does he or she ask what you do for a living? Find a surgeon that explores all options, considers no surgery as a treatment option, weighs your priorities, and discusses longevity as well as quality of life.
Is thyroid cancer a good one? Absolutely not. Do some surgeons rank high in emotional intelligence and surgical skill? Yes. Are other surgeons relatively unskilled and guilty of numerous botched surgeries? Yes.
Legislation is needed to create accurate, honest, and transparent reporting of surgical errors. Patients have the right to know a surgeon’s performance.
At a minimum, surgeons and treatment teams must share thyroid surgery risks with the patient prior to surgery. At a minimum, patients should be allowed the opportunity to decide if surgery is in their best interest, or if they would be prefer active surveillance. At a minimum, patients should be allowed to know the error/success rates of a surgeon. At a minimum, if you are suffering in silence due to thyroid cancer surgery, know that you are not alone.
What is your story?
Are you a thyroid cancer patient and would like to share your story, good or bad? Are you a doctor who can help patients make better decisions related to thyroid cancer? If you would like to be considered as a guest on Doctor Thyroid, you may contact me directly at [email protected] You may also contact me for general inquiries.
Doctor Thyroid is listened to in over 40 countries, with as many as 20,000 downloads per episode. The audience includes patients, doctors, and researchers. Additional information about Doctor Thyroid and past interviews maybe accessed on iTunes or here, wwww.docthyroid.com. Spanish speaking episodes may be listened to here, www.doctiroides.com.