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 other people, the 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.
Follow-up care
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.
Because most people do very well after treatment, follow-up care can continue for a lifetime. This is very important since 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.
Papillary or follicular cancer: If you have had papillary or follicular cancer, and your thyroid gland has been completely removed or ablated, your doctors will do at least one radioactive iodine scan after your initial treatment is complete. 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. 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 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 (recurrent cancer), it would be treated as described in the section, "Treatment of thyroid cancer by stage."
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, 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 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 permanent. 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.
Seeing a new doctor
At some point after your cancer diagnosis and treatment, you may find yourself seeing a new doctor who does not know anything about your medical history. It is important that you be able to give your new doctor the details of your diagnosis and treatment. Make sure you have this information handy:
- A copy of your pathology report(s) 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(s)
- If you were in the hospital, a copy of the discharge summary that doctors prepare when patients are sent home
- If you had radiation therapy, a summary of the type and dose of radiation and when and where it was given
- If you had chemotherapy, 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.
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