Newly Diagnosed with Thyroid Cancer? Your Guide to Next Steps

You’ve just been diagnosed with thyroid cancer. Now what?  To help you figure out your next steps from choosing a surgeon to what to expect in the hospital and during recovery, we spoke with Catherine Sinclair, MD, FRACS, director of the division of head and neck surgery at Mt. Sinai West and an attending surgeon at Mt. Sinai Cancer Centers of New York. Dr. Sinclair, a head and neck surgeon and laryngologist subspecializing in thyroid and parathyroid surgery, head and neck oncological surgery, offers valuable advice and guidance on what to expect when facing thyroid cancer surgery.

thyroid

The Mighty Mouse of Glands

Situated at the base of the neck, the bow-tie shaped thyroid gland consists of two lobes, each less than 2 inches long and attached by a minuscule bridge or isthmus. Although it weighs in at around half an ounce (slightly heavier in males), the thyroid is no lightweight. It’s a powerhouse of a gland producing critical hormones involved in heart rate, blood pressure, body temperature, weight gain and more. And when it’s not functioning properly, problems ensue. While there are many causes of thyroid “dysfunction,” a cancer diagnosis may be the most anxiety-provoking.

This year, roughly 56,870 Americans (42,470 females and 14,400 males) 1, 2 will be diagnosed with thyroid cancer according to the American Cancer Society. The good news is that the prognosis is excellent. Of the four types of thyroid cancer, papillary cancer is the most common accounting for 80 to 90 percent of all cases. And 98 percent of those diagnosed with papillary cancer are cancer-free after five years and almost as many are free of disease a decade after their diagnosis.

Choosing the Surgeon

While the accreditation and skill of a surgeon are always important, in thyroid surgery, both are critical. A surgeon’s hands-on experience performing thyroid surgery and his or her years of practice is critical to a successful outcome. In one recent study, researchers found that patients whose surgeons did fewer than 25 thyroid removal surgeries a year were 1.5 times more likely to have complications. Even that amount is on the low end according to many.

“Thyroid surgery is highly technical,” says Dr. Sinclair.  She strongly recommends that patients seek out a high-volume surgeon who has completed fellowship training in otolaryngology or a general surgeon who has completed an endocrine fellowship. 3

According to Dr. Sinclair, during head and neck or endocrine fellowship training, surgeons have the opportunity to do numerous thyroid operations, “it varies in number but generally well over 50 surgeries in a year,” she says.  4

One of the first questions to ask a potential surgeon is: How many of these types of surgeries have you done in the past year?  Follow that with, “What’s your complication rate? 

Preparing for Your Appointment

  • When you make your appointment, ask how much time the surgeon has booked for the consultation. You want enough time for the surgeon to review the case, perform certain in-office exams and tests and answer your questions thoroughly and patiently. “I always book patients coming for a surgical consult for least 30 minutes and usually 45 minutes,” says Dr. Sinclair.
  •  Make sure that your endocrinologist or primary care doctor has forwarded all relevant medical records and tests including blood tests, ultrasound, and pathology to your surgeon before your consultation. Although many practices now use electronic records that you can access on your smart phone, you may want to have hard copies of your tests with you for easy access.
  • Bring a detailed list of all the medications you’re taking daily or as needed.  This includes any over the counter medications such as vitamins, fish oil (which can thin the blood), ibuprofen, acetaminophen and all prescription pain medications you take. Note the name of the medication, not just the category. For example, if you’re taking blood pressure or diabetes medication, know the name of what you’re taking, not just the category.  

The Consultation

  • Alert the doctor to any chronic medical conditions like diabetes, heart problems, pain conditions etc. and remind him or her of any allergies to medication. While intake forms ask for this information, it’s good to reiterate the information to your doctor.
  • Be honest. Withholding information about medications you’re taking or any medical conditions you have now—or have had in the past—is potentially dangerous. Some chronic conditions such as diabetes or hypertension may affect what medications you can take and which treatments, surgical or nonsurgical, are suitable.
  • Come with a list of questions and don’t be afraid to ask them. And don’t be afraid to call with follow-up questions after the consultation.
  • Always bring someone with you, a family member or friend, who can listen and questions on your behalf. A cancer diagnosis is scary and stressful, says Dr. Sinclair. “And when you’re feeling anxious, it’s difficult to remember and retain everything that’s said. “Having someone with you who’s listening and looking out for you is important.”
  • If you want to tape record the conversation to review later with other family member or for your own peace of mind, let the doctor know up front.

Pre-operative in-office Evaluations

Ultrasound:  Dr. Sinclair believes that during the consultation, the surgeon should do an ultrasound, in addition to any you may have had prior, specifically to visualize the lymph nodes. “Ultrasound is very operator-dependent,” says Dr. Sinclair. “By doing it yourself, you can really look at the nodes and see if they look healthy or suspicious.” Lymph nodes that look abnormal on a pre operative ultrasound will be biopsied intraoperatively and, if cancerous, removed.

Flexible laryngoscopy:  All thyroid surgery patients should have their larynx (voice box) examined prior to and after surgery to determine that the vocal chords vibrate normally, says Dr. Sinclair. In a flexible laryngoscopy, a thin, flexible viewing tube (called a laryngoscope) is passed through the nose and guided to the vocal cords. The examiner can then see the cords and assess health and strength and record what is seen. Another way to examine the larynx is mirror laryngoscopy. In this century-old method, the doctor uses a small, angled, dental-like mirror and a light source to visualize the vocal cords.

Surgical Options: Lobectomy vs. Total Thyroidectomy

Whether or not you and your surgeon decide on lobectomy or total thyroidectomy (or a variation of these procedures) depends on a combination of factors including the type of cancer, the size of the nodules, and evidence of spread to nearby lymph nodes or more distant metastases.

Lobectomy is the surgical removal of one lobe of the thyroid gland A lobectomy may be considered for low-risk patients with a single cancerous thyroid nodule under one centimeter, no evidence of disease or nodules in the other lobe and no involvement of the lymph nodes in the neck, says Dr. Sinclair. Patients sometimes choose a lobectomy to avoid the need for daily oral thyroid hormone replacement medication. Patients who choose lobectomy over total thyroidectomy will need to be closely monitored to make sure that cancer hasn’t recurred or spread and understand that they may need another surgery down the road.

Total thyroidectomy is the removal of both lobes of the thyroid and the isthmus. “Generally for thyroid cancer, except for select patients, we do recommend a complete thyroidectomy,” says Dr. Sinclair.  While surgical risks (discussed below) are minimally higher with a total thyroidectomy, it is the standard of care and for most thyroid cancer patients, the benefit of removing the thyroid completely and lessening the chance of recurrence or metastases outweighs the uncertainty that the cancer may spread requiring another surgical procedure.

A thorough discussion with your surgeon will help you decide the option that’s best for you.

Inpatient or Outpatient

The extent of the surgery usually dictates the appropriateness of inpatient or outpatient surgery. Compared with total thyroidectomy, a lobectomy carries a lower risk of laryngeal problems or significant postoperative hypocalcemia (see below). Moreover, a lobectomy has a smaller operative field than a total thyroidectomy thereby reducing the risk of a postoperative hemorrhage.  With a lobectomy patients are usually released a few hours after surgery. 10

Because a total thyroidectomy increases the risk of postoperative hypocalcemia (hypoparathyroidism), damage to the vocal cords or both, your doctor might admit to the hospital or more likely convert you from an outpatient to an inpatient after the surgery as deemed necessary for patient safety.  Some surgeons do release total thyroidectomy patients after surgery provided they stay in a hotel close by.

Risks

Beyond normal surgical risks such as bleeding or infection, thyroid surgery carries two potentially serious risks.

1.  Damage to the recurrent laryngeal nerve is a worrying risk of thyroid surgery. The recurrent laryngeal nerve (RLN) is a branch of a nerve that supplies sensation to the muscles of the larynx or vocal cords. Humans have a right and left LRN. If damaged during the surgery, the patient’s ability to speak or swallow can be compromised.  Dr. Sinclair strongly believes that intraoperative neuromonitoring (IONM), the use of electrophysiological methods such as electromyography during surgery, reduces the risk of nerve damage and minimizes the chances that the patient will end up with persistent postoperative hoarseness or permanent changes in the sound and quality of the voice. 10

“Neuromodulation doesn’t tell you where the nerve is; it’s not a substitute for knowing your anatomy,” says Dr. Sinclair. “[But] it allows you to monitor how the nerve is reacting to the surgery.” With neuromodulation, if the recurrent laryngeal nerve is stimulated or disturbed, an electrical impulse is detected by the monitoring technician who alerts the surgeon. If the monitoring detects a disturbance, the surgeon knows that “the nerve is not liking whatever maneuver we’re using at the time and we can alter our approach to minimize the chance of ongoing insult to the nerve.” 2, 6 ,8

While Dr. Sinclair feels “very strongly that nerve monitoring should be used in all thyroid surgeries,” she recognizes that there are very experienced, highly- regarded surgeons who don’t use neuromodulation during surgery.  And while nerve monitoring is not mandatory, some studies have shown that “outcomes may be optimized when you have intraoperative information about that nerve. IONM provides an added layer of comfort and confidence for both surgeon and patient,” says Dr. Sinclair. 2, 5, 7, 8

2. Hypocalcemia is a drop in blood calcium levels. During thyroid surgery, the parathyroid glands that lie behind or sometimes within the thyroid gland can be irritated or damaged. In cases where the parathyroid glands sit within the thyroid, they may need to be transplanted to another area in the neck.  Although the likelihood of permanent injury to these tiny glands is less than 3 percent, a permanent injury would result in hypoparathyroidism requiring the patient to take daily calcium and vitamin D supplementation.

The incidence of acute hypocalcemia following a complete thyroidectomy is difficult to determine. An article published in Gland Surgery, (February 2015) found that the incidence of temporary hypocalcemia ranged from from19% to 38%.  However, the authors note that because reporting and follow-up aren’t consistent, the incidence of chronic hypocalcemia (hypoparathyroidism) may be higher.

There are a number of ways of managing calcium after the surgery. Some surgeons believe in intraoperative and postoperative parathyroid hormone assay tests to guide them as to who will and who will not need calcium.  Other surgeons, including Dr. Sinclair, place patients on oral calcium supplements immediately after surgery, monitor calcium levels while the patient is in the hospital and prior to discharge and then wean patients off after a week or so.  “The cost of putting someone on calcium supplements after surgery is less than running all these parathyroid hormone assays during and after surgery,” says Dr. Sinclair. And because the body excretes excess calcium, supplementation doesn’t typically cause problems. “Usually, after a week, patients can be weaned off calcium supplementation,” explains Dr. Sinclair.

Pain control and planning ahead. Discuss the medications you take regularly with your surgeon and make sure that he or she—or the resident assisting the surgeon—enters all the medications you may need into your hospital record or chart. Because hospitals need to track and enter into their record every medication you receive while an inpatient, the hospital strongly discourages and may prohibit your bringing in your own prescriptions, even for medications you take routinely. This means that a physician needs to write orders for everything done and dispensed during your hospital stay be it a narcotic or a throat lozenge. (Trust us, you’ll want throat lozenges.)

And speaking of pain relief, it’s especially important to discuss your pain relief plan with your doctor before surgery. Inform your doctor if a particular pain medication doesn’t work for you. Also, discuss a backup plan in case a medication isn’t effective, if you’re unable to swallow oral medications or if you become nauseous from a particular medication. “Usually, I try to have people on oral pain medication right away,” says Dr. Sinclair. “And I like to have a backup of an intravenous medication in case they are too nauseous to take the oral medication,” she adds.

Recovery

Pain in the neck: By far the most common post-surgical complaint is a raw, tender and painfully sore throat and hoarseness caused by intubation and the surgery itself. Usually both resolve after a couple of days. However, the level of inflammation in and around the surgical area can fluctuate. “Mild hoarseness that fluctuates for up to three months is not uncommon and doesn’t connote a nerve injury,” reassures Dr. Sinclair.  In addition, you may experience tightness around the incision that can last for days or months. After a week or so, you’ll be advised to massage the area and apply Vitamin E oil, Mederma or another scar minimizing balm.

Replacement thyroid hormone: Although residual thyroid hormone circulates for up to six weeks, most surgeons start patients on levothyroxine, a synthetic thyroid hormone, after a total thyroidectomy. “Many patients are very concerned about gaining weight after surgery,” notes Dr. Sinclair, “So by starting them on levothyroxine, we minimize the chance that weight or other issues associated with low thyroid function (hypothyroidism) will occur.”

Comfort and confidence

Depending on your geographic location, insurance plan and other circumstances, finding a high volume, skilled thyroid surgeon may take some time and sleuthing.  But the effort is well worth it. Equally important is finding a surgeon who inspires confidence and who explains clearly and patiently all procedures, answers your questions during the consultation and is available to answer any questions that come up after the consultation. 

Updated on: 08/31/17

Thyroid Surgery Guidelines for Voice Preservation

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