Living as a Thyroid Cancer Survivor
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.
For some people, thyroid cancer may never go away completely. These people may get regular treatments with chemotherapy, radiation therapy, or other therapies to help keep the cancer in check. Learning to live with cancer as a more of a chronic disease can be difficult and very stressful. It has its own type of uncertainty. Managing Cancer as a Chronic Illness covers more about this.
If you have completed treatment, your doctors will still want to watch you closely. It is very important to go to all follow-up appointments. During these visits, your doctors will ask about symptoms, examine you, and might order blood tests or imaging tests such as radioiodine scans or ultrasounds. Follow-up is needed to check for cancer recurrence or spread, as well as possible side effects of certain treatments. This is the time for you to ask your health care team any questions you need answered and to discuss any concerns you might have.
Most people do very well after treatment, but follow-up care can continue for a lifetime. This is very important since most thyroid cancers grow slowly and can recur even 10 to 20 years after initial treatment. Your health care team will explain what tests you need and how often they should be done.
Doctor visits and tests
Papillary or follicular cancer: If you have had papillary or follicular cancer, and your thyroid gland has been completely removed or ablated, your doctors may consider at least one radioactive iodine scan after treatment, especially if you are at higher risk for recurrence. This is usually done about 6 to 12 months later. If the result is negative, you will generally not need further scans unless you have symptoms or other abnormal test results.
Your blood will also be tested for TSH and thyroglobulin levels. Thyroglobulin is made by thyroid tissue, so after total thyroid removal and ablation it should be at very low levels or not be found at all in your blood. If the thyroglobulin level begins to rise, it might 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 removing only one lobe of the thyroid, a physical exam by your doctor, as well as a thyroid ultrasound and periodic chest x-ray is typical.
If the cancer does come back, treatment would be as described for recurrent cancer in the section Treatment of thyroid cancer, by type and stage.
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, imaging tests such as an ultrasound of the neck or a CT or MRI scan will be done to look for any cancer coming back. If the tests show recurrent cancer, treatment is as described in the section Treatment of thyroid cancer, by type and stage.
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 be lifelong. 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. Don’t hesitate to tell your cancer care team about any symptoms or side effects that bother you so they can help you manage them.
Ask your doctor for a survivorship care plan
Talk with your doctor about developing a survivorship care plan for you. This plan might include:
- A suggested schedule for follow-up exams and tests
- A list of possible late- or long-term side effects from your treatment, including what to watch for and when you should contact your doctor
- A schedule for other tests you might need, such as tests to look for long-term health effects from your cancer or its treatment
- Diet and physical activity suggestions
Keeping health insurance and copies of your medical records
Even if you’ve finished treatment, it’s very 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.
At some point after your cancer treatment, you might find yourself seeing a new doctor who doesn’t know about your medical history. It’s important to keep copies of your medical records to give your new doctor the details of your diagnosis and treatment. Learn more in Keeping Copies of Important Medical Records
Last Medical Review: March 31, 2016 Last Revised: April 15, 2016