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Papillary Thyroid Cancer- Long-Term Follow-Up

If you had a papillary thyroid cancer and completed all of your treatment (s), life-long follow-up is strongly encouraged among all experts in thyroid cancer. Written by Gary L. Clayman, DMD, MD, FACS. Dr. Clayman has also written extensively about Papillary thyroid cancer on the EndocrineWeb site here and in multiple highly reviewed medical publications. See his publications here. Last updated October 21, 2018.

You may have heard or experienced one of the following:

  • You have the "good thyroid cancer".
  • You didn't know you had papillary thyroid cancer until after your thyroid surgery.
  • Your papillary thyroid cancer was not completely removed (this is called persistent papillary thyroid cancer).
  • Your papillary thyroid cancer has come back! (this is called recurrent papillary thyroid cancer).
  • Your papillary thyroid cancer is located in other sites of your body other than your neck (this is distant spread of your cancer or distant metastases)
  • You had a papillary thyroid cancer and you underwent removal of half of your thyroid gland -called a thyroid lobectomy.
  • You had a papillary thyroid cancer and underwent removal of all of your thyroid gland.
  • Your blood marker for your papillary thyroid cancer (called thyroglobulin) is elevated.

If you had a papillary thyroid cancer and completed all of your treatment (s), life-long follow-up is strongly encouraged among all experts in thyroid cancer for three reasons:
  • To make sure that your thyroid hormone levels in your blood are at the right level for you! It is possible you may not require any thyroid hormone pill or supplement, however most papillary thyroid cancer patients during follow-up are maintained on thyroid hormone pills. There are several different types of thyroid hormone pills and you should discuss this with your endocrinologist to make sure that you are feeling well and your hormone levels are right for you. Your thyroid hormone should not be too low or too high for your specific needs. The amount of thyroid hormone that you may need may change throughout your lifetime due to many reasons including age, body weight, pregnancy, and more.
  • To determine whether all of your papillary thyroid cancer was completely removed. If papillary thyroid cancer is still evident in your neck following your initial surgery, this is called persistent papillary thyroid cancer. Unfortunately, this is more common than we would like to recognize. Persistent papillary thyroid cancer occurs in nearly 11% of patients with the earliest forms of papillary thyroid cancer. Persistent papillary thyroid cancer is largely preventable in almost all patients. After the initial papillary thyroid cancer surgery, determining whether there is persistent cancer can be difficult because of all the changes associated with the surgery and healing process. Don't worry and don't be in a hurry! But don't make the same decisions that lead you to this issue. Make sure your next evaluation and surgery is performed by a thyroid cancer team that is truly expert in evaluating and managing papillary thyroid cancer. We have written a complete section on persistent papillary thyroid cancer just for you so you can understand this issue and how best to approach it.
  • To determine whether your papillary thyroid cancer has come back. If your papillary thyroid cancer has been gone for a period of time and comes back, this is called recurrent papillary thyroid cancer. We have written a complete section on recurrent papillary thyroid cancer just for you. Important questions that need to be asked:
        a. How old are you?
        b. What does the papillary thyroid cancer look like under the microscope?
        c. Where has the recurrent papillary thyroid cancer found?
        d. What treatment (s) have you had for your papillary thyroid cancer?

For papillary thyroid cancer patients above 55 years of age, early recognition (diagnosis) of the recurrence and the quality of further surgery and other papillary thyroid cancer treatments can effect your ability to be cured and survive your cancer. Therefore, early diagnosis of recurrent papillary thyroid cancer is very important.

Papillary Thyroid Cancer Patient Follow-Up-Who Should Do It?

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

Papillary Thyroid Cancer Follow-Up: Factors Influencing How Often and What Studies Should Be Obtained

Papillary thyroid cancer patients, who have completed treatments, the timing of follow-up appointments and the types of studies obtained in the follow up of their papillary thyroid cancer depends upon:

      1) The age of the papillary thyroid patient-when they were diagnosed.
      2) The papillary thyroid cancer treatment(s) the patient received.
      3) The locations the papillary thyroid cancer was found in the body.
          a. Thyroid gland only
          b. Thyroid gland and neck lymph nodes only
          c. Sites outside of the neck (distant spread of the papillary thyroid cancer).
      4) Whether the papillary thyroid cancer patient was ever considered free of disease.
      5) The papillary thyroid cancer pathology (What was found in the papillary thyroid cancer surgery specimen)? We have written a whole section on this for you to better understand your papillary thyroid cancer. This is called Pathologic Papillary Thyroid Cancer Staging (TNM staging)
          a. How big was the papillary thyroid cancer within the thyroid gland?
          b. What did the papillary thyroid cancer cells look like under the microscope?
          c. Did the papillary thyroid cancer grow out of the confines of the thyroid gland itself?
              i. If it did grow out, what did it grow into?
                  1. The muscle which lays over the thyroid gland?
                  2. The breathing tube (trachea)
                  3. The swallowing tube (esophagus)
          d. Did the papillary thyroid cancer grow into blood vessels or lymphatic vessels?
          e. Did the papillary thyroid cancer grow into nerves or other nearby structures?
          f. Did the papillary thyroid cancer spread into neck lymph nodes?
              i. The lymph nodes along the breathing tube or swallowing tube- called the central compartment lymph nodes?
              ii. The lymph nodes on the side of the neck- called the lateral neck?
          g. Did the papillary thyroid cancer spread to other areas of the body outside of the neck? Meaning is there distant spread of the cancer?

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Papillary Thyroid Cancer Follow-Up: How Frequent and What Studies Should Be Obtained

Follow-up of papillary thyroid cancer patients is usually accomplished by an endocrinologist every six months for the first year and then annually thereafter if there is no evidence of disease.

Every papillary thyroid cancer patient should have the following examinations included in generally every follow-up appointment:
  • Physical examination: This will include examination of the neck and thyroid bed and examination of the voice box if there is concern over changes in voice or swallowing
  • Ultrasound of the neck (see ultrasound of the neck for papillary thyroid cancer)
  • Blood tests for :
        1) Free T4 level: This is the blood level of the major hormone normally produced by the thyroid gland. It is also a direct measurement of the most commonly prescribed thyroid hormone pill, levothyroxine. 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 papillary 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 papillary thyroid cancer recurring. That risk may be low, intermediate or high risk 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 papillary thyroid cancer. The goal is to prevent the growth of papillary 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 papillary 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 papillary 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 papillary thyroid cancer. Sometimes the Thyroglobulin antibodies may disappear over time following surgery for papillary thyroid cancer. Although that does not commonly occur even in papillary thyroid cancer patients which are cured.

Papillary thyroid cancer patients with medium risk or high risk of their cancer recurring may require additional studies including:

      1) Radioactive Iodine Whole Body Scanning: This is generally performed with elevated blood levels of TSH. Elevated TSH levels can be obtained by withholding thyroid hormone and making the patient hypothyroid or by giving the patient TSH injections called Thyrogen. Both methods of raising TSH levels are equal in delivering radioactive iodine. A low iodine diet is required for at least two weeks before this examination.
      2) CT scanning of the neck and or chest: CT scanning of the neck is obtained for papillary thyroid cancer patients when there have been surgical or pathology findings of the papillary thyroid cancer which suggest a high risk of recurrence in locations that ultrasound has limitations. This includes the voice box (larynx), trachea (breathing tube) and esophagus as well as deeper structures in the neck and below the collar bones or chest wall. CT scan of the neck should be obtained with contrast otherwise its use is extremely limited.
      In papillary thyroid cancer patients with lymph node metastases or a history of spread to neck lymph nodes, above 50 years of age, a baseline CT scan of the chest should routinely be obtained and periodically re-examined approximately once every two to three years. The baseline CT scan can be used in comparison if Thyroglobulin levels are shown to be increasing during the period of follow-up or recurrence is ever discovered.
      3) PET/CT scanning: A PET scan is a special imaging study using a specially designed sugar that "lights up" on nuclear imaging and when combined with a CT scan is called a PET/CT scan. Papillary thyroid cancer follow-up may include this scan when there is:
          1) an "angry appearing" papillary thyroid cancer
          2) distant spread in the body of the papillary thyroid cancer
          3) neck recurrence of the papillary thyroid cancer
          4) significant elevation of thyroglobulin levels above what would be anticipated for the known disease
          5) when there is known recurrent cancer but no detectable thyroglobulin.
      4) MRI scanning: MRI scanning is particularly beneficial for examination of the brain and spinal column when there has been a history or concern for involvement of papillary thyroid cancer in those sites. This study does not produce any radiation effect and is given with an intravenous contrast agent called gadolinium. There is no iodine present in gadolinium and therefore it does not conflict with radioactive iodine scanning.