Life After Thyroid Cancer Surgery

Congrats! You have finished the most important step in your thyroid cancer treatment: surgery to remove the disease. Take a few deep breaths and relax. I want to walk you through what your life after thyroid cancer surgery will look like.

Since the 1970’s, the incidence of thyroid cancer has doubled. 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. Overall, the 5-year survival rate for people with thyroid cancer is 98%. The 5-year survival rate is almost 100% for papillary, follicular, and medullary thyroid cancers that have not spread outside of the thyroid gland (localized).

The 5-year survival rate for papillary thyroid cancer that has only spread to lymph nodes or tissue in the neck (regional) is 99%. For follicular thyroid cancer that only involves the neck, the survival rate is 97%. If there is distant spread to other parts of the body (outside of the neck), it is called metastatic disease. The 5-year survival rate for metastatic papillary thyroid cancer is 76%. For metastatic follicular thyroid cancer, the rate is 64%. Medullary and anaplastic thyroid cancers are very rare, making up only 3% of the thyroid cancer cases. They are more aggressive and tend to spread around and outside of the neck more often.

Here are the 4 Most Common Expectations for Your Life After Thyroid Cancer Surgery:

Life after thyroid cancer surgery #1 Quality of Life Expectations

Life after thyroid cancer surgery #2 Thyroid Hormone Supplements

Life after thyroid cancer surgery #3 Follow up Lab Tests and Scans

Life after thyroid cancer surgery #4 Additional Treatments

Below you will read a breakdown regarding the 4 most common expectations for life after thyroid cancer surgery.

Life after thyroid cancer surgery #1 Quality of Life Expectations

Life after thyroid cancer surgery can be tough and worrisome, especially early on. You should not fret about the recovery or thyroid hormone medication. If your thyroid cancer surgery is done at an expert center such as ours, the complication rates are extremely low, and almost everyone recovers quickly and without issue or permanent problems (voice change, issues swallowing, ugly scar, etc.). Your quality of life is very unlikely to be negatively affected by thyroid cancer surgery done correctly in the hands of experts.

Learn more about finding the best thyroid cancer surgeon here.

Finally, there is a lot of misinformation causing worry about being on thyroid medication, particularly about weight gain and fatigue. Thyroid hormone medication and diligent follow-up regarding the dosage and your thyroid hormone levels is critical after your thyroid cancer surgery. As long as the patient is compliant with the necessary medication and follow-up, then their thyroid levels should be appropriate. If your thyroid levels are where they should be, then thyroid medication or thyroid cancer surgery will NOT be the cause of weight gain, fatigue, hair loss, etc. that everyone is concerned about. The reality is, almost everyone on thyroid hormone medication will do great as long as they take the medication as directed, get their thyroid levels checked 1-2 times yearly at a minimum, and maintain a healthy lifestyle. Thyroid hormone medication is very unlikely to cause symptoms, side effects, or a change in your quality of life.

Life after thyroid cancer surgery #2 Thyroid Hormone Supplements

Depending of the type of thyroid cancer surgery you have, you could need thyroid hormone medication. There are numerous formulations and types, but all these medications do a great job at replacing or supplementing the natural hormone your thyroid makes. Low risk thyroid cancers in patients who only have half of their thyroid removed do not need aggressive thyroid hormone suppression (decreasing the thyroid stimulating hormone levels to decrease a chance of the cancer coming back). Many patients who have half of their thyroid removed do not need thyroid hormone supplementation at all. The healthy remaining half of their thyroid makes enough hormone in many instances. If half of your thyroid was removed during your thyroid cancer surgery, you will routinely get your thyroid hormone levels checked to make sure the remaining half of thyroid is making enough thyroid hormone.

If you have your entire thyroid removed during your cancer surgery, you will be on thyroid hormone medication for the rest of your life. Depending on the type of thyroid cancer and the risk of recurrence, you will have to keep your thyroid stimulating hormone level (TSH) low to help prevent the cancer from coming back (see section above). Initially, you will follow up with your endocrinologist more frequently to make sure your thyroid medication and TSH levels are appropriate for your physiology and TSH suppression. After the first 12-18 months, most patients follow-up 1-2 times annually for thyroid cancer surveillance (observation/investigation) and to check thyroid hormone levels and the medication dosage. Regular follow-up with your thyroid cancer team is crucial. This all may seem a little daunting, but an experienced endocrinologist will help manage your thyroid hormone levels and medication for you along the way.

Life after thyroid cancer surgery #3 Follow up Lab Tests and Scans

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, radiologist, 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.
• 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 duration of cancer-free follow-up.

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 level is termed "undetectable". After your surgery, with or without radioactive iodine treatment, 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.

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, the need for these tests should be determined and ordered by experienced thyroid cancer experts.

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

Check out this post for more information regarding staging and imaging for thyroid cancer along with follow-up.

Life after thyroid cancer surgery #4 Additional Treatments

Most patients with thyroid cancer do not need any further treatment after they have had the appropriate surgery done by an expert thyroid surgeon. The most commonly used treatment after thyroid cancer surgery, however, is radioactive iodine (RAI). This treatment works better the younger the patient is. Iodine is used by normal thyroid cells to make thyroid hormone. Thyroid cancers (papillary and follicular thyroid cancers and some Hurthle Cell cancers) can possess the same type of key hole on the surface of their cell called a symporter (or pump) that allows iodine to be taken into the cell. Although thyroid cancer rarely produces any significant amounts of thyroid hormone itself, it frequently maintains this iodine pump and ability to take up iodine. In the treatment of thyroid cancer, this can be taken advantage of by having the patient swallow an iodine pill that has been radioactively charged.

The thyroid cancer patient swallows a radioactive iodine form of iodine called iodine- 131 (I-131) in a liquid or pill (capsule) form. The radioactive iodine (RAI) is absorbed through digestion and circulated throughout the body in bloodstream. Thyroid cancer cells can pick up the radioactive iodine (if they possess the symporter for iodine) wherever they are located in the body. Once taken into the thyroid cancer cells, the radioactive iodine delivers a local radiation treatment in the area where the iodine is concentrated. Most importantly however, a thyroid cancer diagnosis alone is not an indication for RAI treatment.

Other rare, more aggressive forms of thyroid cancer, such as anaplastic and medullary thyroid cancer, are not treated with radioactive iodine. These are the very infrequent cases when radiation (external beam radiation treatment), chemotherapy (oral or intravenous), or targeted therapy (based on the molecular/genetic profile of the cancer cells) are used in the thyroid cancer treatment. Your endocrinologist will help coordinate these therapies with a medical oncologist (cancer doctor) and the radiation oncologist (radiation treatment doctor) if needed. Skilled physicians in prescribing these medications are required because of the necessity for close monitoring of symptoms, toxicities, and progression of thyroid cancer treatment. Be sure to discuss the risks of these treatments with your endocrinologist or cancer physician.

Summary

Life after thyroid cancer surgery can be overwhelming. Expert thyroid cancer surgery done at a center like ours is the first and most step in your cure, and you have accomplished this! Communication amongst your thyroid cancer team is paramount for your recovery and life after thyroid cancer surgery. Afterwards, an experienced thyroid endocrinologist will help maintain your medication and thyroid hormone levels at the correct dose and concentrations that are optimal for your physiology.

Do not worry! 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. Just focus on your surgical recovery and living your healthiest, best life moving forward! To learn more and become a patient, please see our resources below.

Additional Resources

• Become our patient by filling out the form at this link. 
• Learn more about The Clayman Thyroid Center here. 
• Learn more about our sister surgeons at the Scarless Thyroid Surgery Center, Norman Parathyroid Center, and Carling Adrenal Center
• Learn more about the Hospital for Endocrine Surgery.