Moving on after treatment for thyroid cancer

For many people with thyroid cancer, treatment may remove or destroy the cancer. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about cancer growing or coming back. (When cancer comes back after treatment, it is called recurrence.) This is a very common concern in people who have had cancer.

It may take a while before your fears lessen. But it may help to know that many cancer survivors have learned to live with this uncertainty and are leading full lives. Our document, Living With Uncertainty: The Fear of Cancer Recurrence gives more detailed information on this.

For some people, thyroid cancer may never go away completely. These people may get regular treatments with chemo, radiation, or other treatments to help keep the cancer in check. Learning to live with cancer as a more of a chronic disease can be hard and very stressful. It has its own type of uncertainty.

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.

Most people do very well after treatment, but follow-up care can go on for a lifetime. This is very important since most thyroid cancers grow slowly and can come back even 10 to 20 years after the 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 or destroyed, your doctors might do at least one radioiodine 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 signs the cancer might be coming back. If the results are abnormal, further testing will be done. This usually includes a radioiodine 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 the levels of calcitonin and carcinoembryonic antigen (CEA) in your blood. 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.

Seeing a new doctor

At some point after your cancer is found and treated, you may find yourself seeing 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. Gathering these details soon after treatment might be easier than trying to get them at some point in the future. 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 stayed 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.