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. This is very common concern if you have had cancer.

For other people, thyroid cancer may never go away completely, or it might come back in another part of the body. These people may get regular treatments with chemotherapy, radiation therapy, or other therapies to help keep the cancer under control for as long as possible. Learning to live with cancer that does not go away can be difficult and very stressful.

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 and to discuss any concerns you might have.

Almost any cancer treatment can have side effects. Some may last for a few weeks to months, but others might last a long time. Some side effects might not even show up until years after you have finished treatment. It’s important for all thyroid cancer survivors to let their health care team know about any new symptoms or problems, because they could be caused by the cancer coming back or by a new disease or second cancer.

Most people do very well after treatment, but follow-up care is very important since most thyroid cancers grow slowly and can recur even 10 to 20 years after initial treatment.

Doctor visits and follow-up tests

Your health care team will explain what tests you need and how often they should be done. Your schedule of doctor visits, exams, and tests will depend on the original extent of your cancer, the specific type of thyroid cancer you had, how it was treated, and other factors.

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 regularly 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 in your blood at all. 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, routine physical exams by your doctor, thyroid ultrasounds and thyroid blood tests are typical.

If the cancer does come back, treatment would be as described for recurrent cancer in 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 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 early detection (screening) tests for other types of cancer, or test to look for long-term health effects from your cancer or its treatment
• Diet and physical activity suggestions that might improve your health, including possibly lowering your chances of the cancer coming back
• Reminders to keep your appointments with your primary care provider (PCP), who will monitor your general health care

Keeping health insurance and copies of your medical records

Even after 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.

Can I lower the risk of my cancer progressing or coming back?

If you have (or have had) thyroid cancer, you probably want to know if there are things you can do that might lower your risk of the cancer growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements. Unfortunately, it’s not yet clear if there are things you can do that will help.

Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight is important. We know that these types of changes can have positive effects on your health that can extend beyond your risk of cancer.

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of thyroid cancer progressing or coming back. This doesn’t mean that no supplements will help, but it’s important to know that none have been proven to do so.

Dietary supplements are not regulated like medicines in the United States – they do not have to be proven effective (or even safe) before being sold, although there are limits on what they’re allowed to claim they can do. If you’re thinking about taking any type of nutritional supplement, talk to your health care team. They can help you decide which ones you can use safely while avoiding those that might be harmful.

If the cancer comes back

If your cancer does come back at some point, your treatment options will depend on the where the cancer is, what treatments you’ve had before, and your current health and preferences. Treatment options might include surgery, radiation therapy, chemotherapy, targeted therapy or some combination of these. For more on how recurrent cancer is treated, see Treatment of Thyroid Cancer, by Type and Stage.

For more general information on recurrence, see Understanding Recurrence.

Second cancers after treatment

People who’ve had a thyroid cancer might still be at risk of getting some other types of cancers. Learn more in Second Cancers After Thyroid Cancer.

Getting emotional support

Some amount of feeling depressed, anxious, or worried is normal when thyroid cancer is a part of your life. Some people are affected more than others. But everyone can benefit from help and support from other people, whether friends and family, religious groups, support groups, professional counselors, or others. Learn more in Life After Cancer.