Surviving Thyroid Cancer: Follow Up Care

If you have finished treatment, your doctors will still want to watch you closely. It is very important to go to all follow-up visits. During these visits, your doctors will ask about symptoms, do an exam, and might order blood tests or tests such as radioiodine scans or ultrasounds. 

Follow-up is needed to check for cancer coming back or spreading, as well as possible side effects of certain treatments. This is the time for you to ask your health care team any questions or concerns you have.

Because most people do very well after treatment, follow-up care can go on for a lifetime. This is very important since thyroid cancers grow slowly and can come back even 10 to 20 years after first treatment. Your health care team will explain what tests you need and how often they should be done.

Papillary or follicular cancer: If you have had papillary or follicular cancer and your thyroid gland has been removed, your doctors will do at least one radioactive iodine scan after your treatment is complete. This is usually done about 6 to 12 months later. If the result is normal, you will most likely not need further scans unless you have symptoms or other abnormal test results.

Your blood will also be tested for TSH and thyroglobulin. Thyroglobulin is made by thyroid tissue, so after total thyroid removal and ablation it should be at very low levels in your blood. If the thyroglobulin level begins to rise, it may be a sign the cancer is coming back, and further testing will be done. This usually includes a radioactive iodine scan, and may include PET scans and other imaging tests.

For those with a low-risk, small papillary cancer that was treated by taking out only one lobe of the thyroid, a physical exam by your doctor, as well as a thyroid ultrasound and chest x-ray once in a while is typical.

Medullary thyroid cancer: If you had medullary thyroid cancer (MTC), your doctors will check your blood levels of calcitonin and carcinoembryonic antigen (CEA). If these begin to rise, tests such as an ultrasound of the neck or a CT or MRI scan will be done to look for any cancer coming back.

Each type of treatment for thyroid cancer has side effects that may last for a few months. Some, like the need for thyroid hormone pills, may last your lifetime. You may be able to speed your recovery by being aware of the side effects before you start treatment. You might be able to take steps to reduce them and shorten the length of time they last. Be sure to tell your cancer care team about any symptoms or side effects that bother you so they can help you manage them.

Talking to a new doctor:  At some point after your cancer is found and treated, you may find yourself in the office of a new doctor who does not know about your cancer. You need to be able to give your new doctor the exact details of your cancer and treatment. Make sure you have this information handy and always keep copies for yourself: 

  • Copies of your pathology reports from any biopsies or surgeries
  • Copies of imaging tests (CT or MRI scans, etc.), which can usually be stored on a CD, DVD, etc.
  • If you had surgery, a copy of your operative report
  • If you were in the hospital, a copy of the discharge summary that doctors prepare when patients are sent home
  • If you had radiation treatment, a summary of the type and dose of radiation and when and where it was given
  • If you had chemo, a list of the drugs, drug doses, and when you took them
  • It is also important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.

Updated: 09/11/11