Surgeon error leads to physical harm — and surprise “quality of life” downgrade for many thyroid cancer patients

[IMPORTANT: This article shares my experience with papillary thyroid cancer (PTC). The death rate for PTC is < .01%. Why so low? A study reports nearly one-third of the population dies with PTC cancer, not from it. This means one in three people have thyroid cancer, and probably don’t know it. Meanwhile, it is important to note some rare thyroid cancers are fatal, anaplastic thyroid carcinoma. Yet, most PTC does not kill – there are a few exceptions.]

Due to over-screening, thyroid cancer is detected more often. This leads to unnecessary thyroidectomies if a surgeon is eager to operate without informing the patent of all options. This was my experience with thyroidectomy by Dr. Michael Yeh at UCLA.

Yeh’s eagerness to operate is one of four types of errors committed by thyroid surgeons.

Important for all patients to beware of unqualified surgeons and know that not all surgeons are equal.

What are the four types of errors by thyroid surgeons?

1. Surgeon Physical Harm Error 🛑

Examples of physical-harm errors are:

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 affect the patient for life. We will explore these three errors, along with other consequences of thyroid surgery.

Vocal cord paralysis: 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 often 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 is 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, represents a major concern for surgeons because it can result in severe and even life-threatening complications. Post-operative hemorrhage may result in airway compression and respiratory distress. Bleeding during thyroidectomy puts the RLN and the parathyroid glands at significant risk of injury.

2. Surgeon Error: not fully describing consequences of thyroidectomy 🛑

Many surgeons do not accurately describe the consequences of thyroidectomy. This was the case for me. Every surgeon needs to set clear expectations for the patient to understand the consequences of thyroidectomy, including:

Thirteen Direct Outcomes of Thyroidectomy

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 problem related to the thyroidectomy is acid reflux and aspiration, or problems swallowing.
Breathing problems: this will most often occur when damage to the recurrent laryngeal nerve (RLN) 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, sometimes resulting in death.
Quality of life (QoL) downgrade: University of Chicago Medicine researchers Briseis Aschebrook-Kilfoy, Ph.D. and Raymon Grogan, MD, say “Oftentimes, 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 weight gain on diet or menopause. Patients should be told in advance, if 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.
Scarring: unavoidable. Every patient will have a scar, the severity will depend on genes, skin type, and skill of the 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 depend on levothyroxine for life. Levothyroxine is the number one prescribed drug in the United States. Side effects 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.
The 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 clinic for an ultrasound and CT scans possibly.
RAI: or radioactive iodine. Regardless of revised guidelines recommending against the broad use of RAI, it is overused; some patients are receiving the treatment without necessity. The consequences of RAI can be serious and include:

3. Surgeon Error: not describing “quality of life” downgrade resulting from thyroidectomy 🛑

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.

4. Surgeon Error: not sharing all options for saving the thyroid 🛑

Eager surgeons do not inform patients of options to treat thyroid cancer without surgery. This was the case with my surgeon.

Advice for all patients: before thyroidectomy, consider RFA or active surveillance.

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 maximalists. 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 proceed with a thyroidectomy, they must be cautioned about possible consequences.

RFA⎜laser ablation and no surgery for treating thyroid cancer

It is possible to treat thyroid cancer with no surgery and without removing it.
Click here for additional resources for radiofrequency ablation.

www.rfamd.com

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Dr. Michael Yeh

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ABOUT THE AUTHOR: 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. I was hastily rushed into surgery by an overly eager surgeon. The Doctor Thyroid podcast, hopefully, 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 in this article, 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, and muscle spasms.

What now?

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 the quality of life.

Is thyroid cancer a good one? 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 before surgery. At a minimum, patients should be allowed the opportunity to decide if surgery is in their best interest or if they would prefer active surveillance. At a minimum, patients should be allowed to know the error/success rates of a surgeon. At a minimum, if you suffer 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 philipjames@docthyroid.com. 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 may be accessed on iTunes or here, www.docthyroid.com. Spanish-speaking episodes may be listened to here, www.doctiroides.com.

Listen to Doctor Thyroid on iTunes. Find Doctor Thyroid on Facebook and Twitter.

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I awoke with no voice after thyroidectomy — surgeon error !

I awoke with no voice after thyroidectomy — surgeon error!