Take a deep breath! Certainly, being diagnosed with any cancer can be very scary. So, if you just got diagnosed with  thyroid cancer, let me help walk you through what is going to happen and why. It is very important for you to know what kind of thyroid cancer you have. Most thyroid cancers are very curable, but one kind (anaplastic, which is extremely rare) is very deadly. As such, everything you do and every decision you make will be determined by what type of thyroid cancer you have.

Since the 1970’s, the incidence of thyroid cancer has doubled—doctors are diagnosing it twice as often as they used to. Until recently, thyroid cancer was the fastest growing cancer in the United States, mainly due to our ability to detect these cancers so well (Ultrasound, CT scan, etc.). Thyroid cancer is the 5th most common cancer in women. The vast majority of thyroid cancers, even ones that have spread, however, are very treatable.

The first step towards a cure after being diagnosed with thyroid cancer is to have an expert evaluation and work-up to determine the best thyroid surgery and treatment plan to cure you. Thyroid cancer can almost always be cured with surgery done in expert hands, and is unlikely to shave years off of your life expectancy. This article is going to walk you through all the phases of treatment for 95% of thyroid cancers. I do not want this diagnosis to intimidate or overwhelm you. Let’s go over all the steps and what to expect along the way.

I have been diagnosed with thyroid cancer - Now what?

Evaluation of Your Newly Diagnosed Thyroid Cancer

First things first, you will see a doctor and have a complete medical history and physical exam. Most likely, your thyroid cancer was diagnosed with a needle biopsy (fine-needle aspiration biopsy or FNA). In some cases, the needle biopsy cells were further examined for molecular genetic markers for thyroid cancer to help confirm the diagnosis.

The next step after being diagnosed with thyroid cancer is to have  an ultrasound done by a skilled and experienced team. Thyroid ultrasound is the foundation of a complete thyroid evaluation. Often, an excellent ultrasound is enough to make the diagnosis of thyroid cancer. During the ultrasound, the technician must thoroughly examine the thyroid and all the areas of lymph nodes in both sides of the neck that could possibly be involved with thyroid cancer. If your ultrasound is not comprehensive and does not include this important component, cancer may be missed and left behind after surgery. This would lead to additional thyroid surgery and treatment in the future. The best time to treat thyroid cancer is the first time. As such, a thorough neck evaluation along with ultrasound for diagnosis is paramount.

Ultrasound should be the first imaging test to examine or evaluate a person with thyroid cancer as soon as it has been diagnosed. CT scan, PET/CT scan, and MRI (very rarely) are occasionally needed as well to evaluate and diagnose if the cancer has spread outside of the thyroid and/or neck area. If your doctor is ordering and MRI or PET scan as the first imaging test, you need to get a second opinion from an expert ASAP.

Staging and Imaging for Your Newly Diagnosed Thyroid Cancer

Surgery is the mainstay and foundation of treatment for thyroid cancer, regardless of the stage. For the 2 most common types of thyroid cancer, papillary and follicular thyroid cancer (roughly 95% of thyroid cancers), there are only 2 stages if you are under the age of 55 years- old: Stage I (all the cancer is in the neck) or Stage II (cancer has spread outside of the neck to other organs). For patients older than 55, the staging is as follows:

Papillary and Follicular Thyroid Cancer Diagnosed in Patients 55 years and Older

• Stage I (T1, N0, M0): Any thyroid cancer 2 cm or less across and has not grown outside the thyroid (T1). It has not spread to nearby lymph nodes (N0) or distant sites (M0).
• Stage II (T2, N0, M0): The thyroid cancer is more than 2 cm but not larger than 4 cm across and has not grown outside the thyroid (T2). It has not spread to nearby lymph nodes (N0) or distant sites (M0).
• Stage III: One of the following applies:
• T3, N0, M0: The thyroid cancer is larger than 4 cm across or has grown slightly outside the thyroid (T3), but it has not spread to nearby lymph nodes (N0) or distant sites (M0).
• T1 to T3, N1a, M0: The cancer is any size and may have grown slightly outside the thyroid (T1 to T3). It has spread to lymph nodes around the thyroid in the neck (N1a) but not to other lymph nodes or to distant sites (M0).
• Stage IVA: One of the following applies:
• T4a, any N, M0: The cancer is any size and has grown beyond the thyroid gland and into nearby tissues of the neck (T4a). It might or might not have spread to nearby lymph nodes (any N). It has not spread to distant sites (M0).
• T1 to T3, N1b, M0: The cancer is any size and might have grown slightly outside the thyroid gland (T1 to T3). It has spread to certain lymph nodes in the neck (cervical nodes) or to lymph nodes in the upper chest (superior mediastinal nodes) or behind the throat (retropharyngeal nodes) (N1b), but it has not spread to distant sites (M0).
• Stage IVB (T4b, any N, M0): The cancer is any size and has grown either back toward the spine or into nearby large blood vessels (T4b). It might or might not have spread to nearby lymph nodes (any N), but it has not spread to distant sites in the body(M0).
• Stage IVC (any T, any N, M1): The cancer is any size and might or might not have grown outside the thyroid (any T). It might or might not have spread to nearby lymph nodes (any N). It has spread to any distant sites in the body(M1).

Just Diagnosed with Thyroid Cancer: What Other Tests Do I Need?

Aside from ultrasound, additional imaging tests may need to be done before or after surgery to help with staging and to guide treatment. Most commonly, a CT scan is used for more advanced or aggressive thyroid cancers to evaluate the amount of thyroid cancer in the lymph nodes, the anatomic location, and if any other structures are involved (windpipe, swallowing tube/esophagus, voice box, large blood vessels). CT scan is also good to evaluate larger thyroid cancers to see if they are growing under the collarbone or breastbone (sternum) into the chest cavity. Likewise, CT scan is used to look for spread into distant organs, such as the lungs or brain.

The CT scan produces detailed images of your body. The scanner takes many pictures while you lie on the table. A computer then combines these pictures into images or slices of the part of your body being studied (similar to a loaf of bread) from the bottom of your brain to the middle of your chest. Before the test, you will be asked to receive contrast dye in a vein (intravenous or IV). This helps better outline structures in your body. Be sure to tell the doctor if you have any allergies or have ever had a reaction to any dye used for other imaging studies or scans.

A PET (positron emission tomography) Scan or PET/CT scan can be used before or after thyroid cancer surgery to see if any cancer has spread into lymph nodes, additional structures in the neck, or to other areas and organs of the body. Typically, this scan is used to see if thyroid cancer has spread to other sites in the body outside of the neck or to see if the cancer has come back (recurrence). Often the PET scan is combined with a CT scan to get good pictures for the anatomical location of the thyroid cancer. A radioactive substance (usually a type of sugar related to glucose, known as FDG) is injected into the blood. The amount of radioactivity used is very low. Because cancer cells in the body generally utilize more sugar as their energy source to grow, they absorb more of the sugar than normal cells, and this causes them to light up on the PET scan.

A PET/CT scan in a patient with thyroid cancer spread to the lungs is seen below.

For more information about staging and imaging for thyroid cancer, please visit www.thyroidcancer.com

For more information on diagnostic testing, check out my detailed blog here: 5 Best Ways to Diagnose Thyroid Cancer

Just Diagnosed with Thyroid Cancer: Time for Surgery

Thyroid surgery for thyroid cancer is the mainstay of treatment and cure. So, once you have been diagnosed with thyroid cancer, you can bet there is surgery in your future. There are different types of thyroid surgery performed for thyroid cancer. The training, qualifications, and experience of your thyroid surgeon and their team are crucial for achieving excellent outcomes and almost eliminating complications. Below are the most common and effective surgeries to treat thyroid cancer and what you should expect afterwards.

The thyroid lobectomy or thyroid lobectomy with isthmusectomy (removing half of the thyroid) is typically the "smallest" operation performed on the thyroid gland for thyroid cancer. This surgery involves removing half of the thyroid gland or half of the thyroid and the entire isthmus (the middle part that connects the 2 halves) and is appropriate for many thyroid cancers. The surgery is brief, usually lasting no more than 30-45 minutes, and spares all parathyroid glands (calcium control glands) as well as all important nerves to the voice box (superior laryngeal nerve and its branches and recurrent laryngeal nerve and its branches). Even for larger thyroid cancers, the incision is small and cosmetically designed to be almost unnoticeable.

This surgery is beneficial because half of a healthy thyroid is saved allowing for natural thyroid hormone production. Additionally, thyroid lobectomy involves less surgery since only 1 side of the neck is operated on (therefore, risks of the surgery are decreased). At our center, the lymph nodes that are located behind and around the thyroid are routinely removed as well for thyroid cancers. Numerous studies have shown that up to 30% of thyroid cancers have spread to lymph nodes at the time of diagnosis and surgery. Expert evaluation and complete removal of all cancer with the first surgery are extremely important to avoid complications and leaving cancer behind.

Total Thyroidectomy is designed to remove all of the thyroid gland. This is the operation of choice for most thyroid cancers which are moderate to large in size. This surgery is not long, usually lasting no more than 60-75 minutes, and spares all four parathyroid glands and all the nerves to the voice box (both superior laryngeal nerves and their branches and recurrent laryngeal nerves and their branches). Even for larger tumors, the incision is usually small and always cosmetically designed to be almost unnoticeable.

A total thyroidectomy is also the operation of choice for thyroid cancers that are present in both halves of the thyroid. Additionally, if there is enough spread of thyroid cancer to lymph nodes in the neck, you will also need the entire thyroid gland removed to cure the cancer. Again, the lymph nodes behind and around the thyroid that can be involved with thyroid cancer are routinely removed to ensure complete cure. Complete thyroid removal is even riskier than thyroid surgery for half the thyroid. This is because both sides of the neck are worked on, exposing all 4 parathyroid glands as well as all the nerves to the voice box to potential damage. Thus, total thyroid removal should only be done by high-volume, experienced surgeons at busy centers such as ours. For more information about thyroid cancer surgery, check out our detailed blog here: Thyroidectomy for Thyroid Cancer the Big Picture

Total thyroidectomy with lymph node dissection (removal) is done for thyroid cancers that have spread to lymph nodes in the side of the neck (on the left, right, or both) or to the lymph nodes in the center of the neck around and behind the thyroid. The lymph nodes of the body function similar to a charcoal filter system. Thyroid cancer cells can get caught within the filter but the body has no means of removing the captured cells. The cells are basically then stuck in the lymph node and they begin to grow in that location. The lymph node areas of the neck can be divided into three basic areas:

1. The central neck (the lymph nodes beneath and surrounding the thyroid gland, breathing tube (trachea) and swallowing tube (esophagus)
2. The lateral neck [the side of the neck along the outside portion of the major veins and arteries of the neck (internal jugular vein and carotid arteries)]
3. The posterolateral neck (the very back side of the neck- rarely involved by thyroid cancer)

Thyroid cancer surgery must address the lymph node areas that are known to contain cancer as well as those that are at significant risk of having thyroid cancer. This type of the thyroid cancer surgery is termed comprehensive compartmental dissection. Comprehensive does not mean destructive by any means. These lymph node surgeries remove lymph nodes and fatty tissue and spare all major nerves, blood vessels and muscles. They have essentially no cosmetic or functional impact other than a fine scar line.

As noted above, the lymph nodes at risk or involved with thyroid cancer in the center part of the neck are routinely removed at our center to ensure a cure. The lymph nodes in the side of the neck (lateral compartment) are removed with a thyroid cancer surgery known as a “modified radical neck dissection” or “lateral neck dissection” or simply a “neck dissection”. The neck dissection should only be performed in instances of needle- biopsy confirmed thyroid cancer spread to lymph nodes on the side of the neck. The thyroid cancer surgery for spread of cancer to lymph nodes of the side of the neck is not the same modified radical neck dissection as for other cancers that occur in the neck. Thyroid cancer spreads to particular areas of the neck called levels. Removing just some of the lymph nodes has been called “berry picking” and is the wrong surgery! A thyroid cancer surgery expert trained surgeon and experienced to perform neck dissections specifically for thyroid cancer is needed to prevent recurrence or persistent/continued cancer.

Thyroid cancer may sometimes be more aggressive than ultrasound or CT imaging suggested prior to undergoing surgery. In these cases, an expert surgeon recognizes those "more aggressive" intraoperative findings, such as growth or extension of the cancer outside of the thyroid gland or invasion of the cancer into adjacent structures such as the nerve to the voice box (recurrent laryngeal nerve), breathing tube (trachea), voice box, or esophagus (swallowing tube). He or she must then adapt the thyroid surgery to adequately address the complete removal of the cancer. Unfortunately, occasional thyroid surgeons are commonly unprepared to perform the appropriate surgery, and a subsequent surgery for persistent disease will be required. Complete removal is critical, as leaving cancer behind, particularly on or in the voice box or on the nerve to the voice box, will lead to further surgery that is very difficult or not able to be performed without significant adverse side effects (i.e., partial or complete removal of voice box).

Recovery after thyroid cancer surgery

Being diagnosed with thyroid cancer does not necessarily mean you will have a long hospital stay or prolonged recovery after surgery. Many patients who have thyroid cancer surgery can be discharged the same day. Others that have bigger surgeries need to be monitored overnight in the hospital. Most patients have minimal pain and only use ice, Tylenol, and ibuprofen after surgery to control their pain. At an expert center such as ours, almost every patient wakes up after surgery talking with their same voice, walking, eating, and drinking normally. Voice rest and soft or liquid diet are not necessary. Some patients need calcium and vitamin D temporarily after surgery to allow time for the calcium- control glands (parathyroid glands) to perk back up and start working effectively again after thyroid cancer surgery. You will likely be able to return to work within 1 week and can resume aerobic activity within 48-72 hours after surgery. Heavy lifting or strenuous labor after thyroid surgery should be avoided for at least 1 week, but preferably 3 weeks if possible. The vast majority patients feel almost completely normal and recovered 3-5 days after thyroid cancer surgery.

Additional (Adjuvant) Treatment for Thyroid Cancer

Most patients do not need any further thyroid cancer treatment after expert surgery is done to remove all of their disease. Again, surgery for thyroid cancer is the mainstay of the cure. At a minimum, patients with the 2 most common types of thyroid cancer, papillary and follicular, will undergo thyroid suppression therapy after thyroid surgery (keeping the thyroid stimulating hormone or TSH level low). This helps prevent recurrence.

Some people need radioactive iodine treatment after thyroid cancer surgery. We discuss radioactive iodine, how it works, and who needs it in another blog.

Follow- Up After Thyroid Cancer Treatment

Thyroid cancer treatment follow-up can be performed by surgeons, endocrinologist, oncologists and others. What is most important is that those individuals which are following the thyroid cancer patient are truly experts in the management, evaluation, and treatment of the disease. The Clayman Thyroid Center believes that thyroid cancer patient follow-up is best managed by an endocrinologist with defined expertise in the evaluation, management, and follow-up of thyroid cancer patients. Communication between the endocrinologist, surgeon, radiologists, and other members of the thyroid cancer team is critical. This is the absolute foundation of thyroid cancer treatment at the Clayman Thyroid Center.

After thyroid cancer surgery, your thyroid hormone levels should be checked in 4-6 weeks to see if thyroid hormone medication is needed or if your dose should be adjusted. You should have a complete history and physical exam along with an expert ultrasound done 6 months after thyroid cancer surgery and yearly after that.

The following blood tests are always done routinely (typically twice yearly after the first year) for surveillance and monitoring:

1) Free T4 level: This is the blood level of the major hormone normally produced by the thyroid gland. This is also a direct measurement of the most commonly prescribed thyroid hormone pill, levothyroxine or Synthroid. The dose of thyroid hormone pill will be based upon the blood thyroid stimulating hormone (TSH) level described below.

2) TSH (Thyroid Stimulating Hormone): The potential risk of your thyroid cancer recurring determines the amount of thyroid hormone that will be prescribed to you in the replacement of your thyroid hormone. The American Thyroid Association has guidelines for the blood level of TSH which should be sought based upon the risk of the thyroid cancer recurring. That risk may be low, intermediate, or high, and each is associated with a different range of TSH blood levels.

• In low-risk patients, the 2015 American Thyroid Association Guidelines recommend that the goal for initial TSH level usually be 0.5 to 2.0 mU/L, which is within the normal range. For some patients, the goal is 0.1 to 0.5 mU/L, which is just below or near the low end of the normal range.
• In intermediate-risk patients, the initial TSH goal is 0.1 to 0.5 mU/L. This goal may change to a normal range of TSH following long term follow-up and no detectable thyroglobulin.
• For high-risk patients, the thyroid hormone dose will be high enough to suppress the thyroid stimulating hormone (TSH) below the range that is normal for someone not diagnosed with thyroid cancer. The goal is to prevent the growth of thyroid cancer cells while providing essential thyroid hormone to the body. At first, TSH levels will probably be suppressed to below 0.1 mU/L. The level may later change to 0.1 to 0.5, depending on your body's response to the treatment and time.

3) Thyroglobulin: Thyroglobulin is a protein produced by thyroid cells (both thyroid cancer and normal cells). After removal of the thyroid gland, thyroglobulin can be used as a "cancer marker." Its number should be as low as possible. Sometimes this is termed "undetectable". After your surgery with or without radioactive iodine, it may take months or even years for the thyroglobulin number to come down to zero or undetectable. A detectable thyroglobulin test indicates that either thyroid cancer cells or normal thyroid cells are still present in your body. Depending on the level of thyroglobulin in your blood, your doctor may want to monitor you more closely with other tests or scans and/or prescribe additional treatment. If you had a thyroid lobectomy rather than a total thyroidectomy, your remaining thyroid lobe will almost always produce some amount of Thyroglobulin. However, it is still helpful to follow your Thyroglobulin levels over time. If significant changes in Thyroglobulin levels occur over time, your doctor may recommend further imaging studies to locate the source. From time to time, your doctor may recommend what is called a "stimulated Thyroglobulin" measurement. This means that your TSH is elevated, by withdrawal from thyroid hormone or by receiving injections of the drug called Thyrogen, and then your Thyroglobulin is measured. Thyroglobulin testing can be more accurate when your TSH level is elevated.

4) Thyroglobulin antibody: Some people produce a very large protein that for some reason recognizes the normal thyroglobulin protein as being "abnormal". These very large proteins are called anti-thyroglobulin antibodies. These are not harmful, but are a sign of an autoimmune disease where the body recognizes itself as being abnormal. The presence of Thyroglobulin antibodies makes Thyroglobulin a largely useless blood test for monitoring thyroid cancer. Sometimes the Thyroglobulin antibodies may disappear over time following surgery for thyroid cancer.

Additional blood tests that are used to monitor medullary thyroid cancer are calcitonin and CEA (carcinoembryonic antigen).

Imaging tests such CT scan, PET/CT scan, and radioiodine scan are used if there is an aggressive cancer with high risk of coming back (recurrence) or if there is evidence of a recurrence. In these cases, further imaging studies are done to look at the neck and other areas of the body where cancer may spread. Again, these need for these tests should be determined and ordered by experienced thyroid cancer experts.

Summary

Being diagnosed with thyroid cancer is scary—but if you know what is going on, and know that almost everybody can be cured, then you can make good decisions about finding your expert surgeon and getting this over with. Try to relax and take a deep breath. Very few of these cancers need to be treated emergently and almost all are curable. Most important, you need to find an expert team with experience in thyroid cancer surgery to spearhead your cure. Every decision you make regarding your thyroid cancer treatment starts with the diagnosis and is then determined by the type of thyroid cancer you have. Our team of thyroid cancer experts is here to help and guide you every step along the way and will be there for you after you are cured. To learn more and become a patient, please see our resources below.

Additional Resources

• Become our patient at www.thyroidcancer.com/become-a-patient
• More about the The Clayman Thyroid Center at www.thyroidcancer.com
• Learn about the Hospital for Endocrine Surgery