Living as a Thyroid Cancer Survivor

For many people, treatment removes or destroys the cancer. If you’ve finished treatment, you might be relieved. Completing treatment for thyroid cancer can be both stressful and exciting. But you might also find it hard not to worry about your cancer growing or coming back. This is very common concern.

For other people, thyroid cancer might not go away completely, or it might come back in another part of the body. In this case, you might need regular treatments to help keep the cancer under control for as long as possible. Learning to live with cancer that doesn’t go away can be difficult and very stressful.

No matter what your situation is, there are steps you can take to live well, both physically and emotionally.

Follow-up care

Whether or not you’ve completed treatment, your cancer care team will want to watch you closely. It’s very important to go to all follow-up appointments. During these visits, they will examine you and ask about your symptoms. They might also order blood tests or imaging tests such as radioiodine scans or ultrasounds.

This follow-up care 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 cancer care team any questions and to discuss any concerns you might have.

Managing side effects

Almost any cancer treatment can have side effects. Some might last for a few days or weeks, but others might last longer. If you need to take certain medications, like thyroid hormone pills, your side effects may be lifelong.

Some side effects might not even show up until years after you’ve finished treatment.

Don’t hesitate to tell your cancer care team about any symptoms or side effects that bother you. They can help you manage this. It’s also important to let your care team know about any new symptoms, because these could be caused by the cancer coming back or by a new disease or second cancer (see below).

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

Doctor visits and follow-up tests

Your cancer care team will explain what tests you need and how often you need them. Your schedule of doctor visits, exams, and tests will depend on the type of thyroid cancer you’ve had, the original extent of the cancer, how it was treated, and other factors.

Papillary or follicular thyroid cancer

For papillary or follicular cancer, your follow-up will depend largely on the type of treatment you had. Along with regular physical exams, you’ll likely need other tests as well.

If your thyroid gland was completely removed (with a thyroidectomy) and you had radioactive iodine (RAI) treatment, you will likely get a radioactive iodine scan, especially if you are at higher risk for recurrence.

This is usually done about 6 to 12 months later. If the result is negative (that is, if the test doesn’t show any areas taking up iodine), you most likely won’t need further radioactive iodine scans unless you have symptoms or other abnormal test results.

If you had a thyroidectomy without RAI afterward, or if you had a lobectomy (removal of half of the thyroid), then you won’t need a radioactive iodine scan.

Regardless of your initial treatment, you’ll most likely get regular ultrasounds of your neck, usually starting 6 to 12 months after you finish treatment. Your blood TSH level will also be tested regularly. (If you had a thyroidectomy, your thyroglobulin levels will be tested as well.)

If any test results are abnormal, it might be a sign the cancer is coming back, and further testing will be done. This might include a radioactive iodine scan, CT scans, PET scans, other imaging tests, or a biopsy of the suspicious area.

If your cancer does come back, treatment would be as described for recurrent cancer in Treatment of Thyroid Cancer, by Type and Stage.

Medullary thyroid cancer (MTC)

If you’ve had medullary thyroid cancer (MTC), your health care team will check the levels of calcitonin and carcinoembryonic antigen (CEA) in your blood regularly. If these begin to rise, imaging tests such as an ultrasound of the neck, or a CT, MRI, or PET scan may be done to look for any signs of the cancer coming back.

If the tests show recurrent cancer, treatment is as described in Treatment of Thyroid Cancer, by Type and Stage.

Asking your doctor for a survivorship care plan

Talk with your doctor about creating 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 health care team
• A schedule for other tests you might need, such as early detection (screening) tests for other types of cancer, or tests 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

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.

Learn more: Understanding Health Insurance

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 (or have access to) your medical records so you can give your new doctor the details of your diagnosis and treatment.

Learn more: Keeping Copies of Important Medical Records

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

If you have, or had, thyroid cancer, you probably want to know if there are things you can do to lower your risk of the cancer growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements.

Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight may help, but this isn’t clear. Still, we do know that these types of changes can have many positive effects on your health that can extend beyond your risk of thyroid cancer.

Learn more: Cancer Risk and Prevention

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.

In the United States, dietary supplements are not regulated like medicines. They don’t 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 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 thyroid cancer is treated, see Treatment of Thyroid Cancer, by Type and Stage.

For general information on cancer recurrence, see Understanding Recurrence.

Second cancers after treatment

People who’ve had cancer can be affected by a number of health problems, but often a major concern is facing cancer again. Cancer that comes back after treatment is called a recurrence. But some cancer survivors may develop a new, unrelated cancer later. This is called a second cancer.

Unfortunately, being treated for thyroid cancer doesn’t mean you can’t get another cancer. If you’ve had thyroid cancer, you can still get the same types of cancers other people get. In fact, you might be at a higher risk of certain types of cancer, including:

• Breast cancer (in women)
• Prostate cancer (in men)
• Kidney cancer
• Adrenal cancer

Adrenal cancer risk is especially high in people who have had medullary thyroid cancer.

People who have been treated with radioactive iodine also have an increased risk of acute lymphocytic leukemia (ALL), stomach cancer, and salivary gland cancer.

Can I lower my risk of getting a second cancer?

There are steps you can take to lower your risk of getting another cancer and stay as healthy as possible. For example, smoking is linked to an increased risk of several cancers, so if you smoke, stopping might help lower that risk.

To help maintain good health after thyroid cancer:

• Get to and stay at a healthy weight.
• Keep physically active and limit the time you spend sitting or lying down.
• Follow a healthy eating pattern that includes plenty of fruits, vegetables, and whole grains, and that limits or avoids red and processed meats, sugary drinks, and highly processed foods.
• Avoid or limit alcohol. If you do drink, have no more than 1 drink per day for women or 2 drinks per day for men.

Learn more: Eating Healthy and Getting Active

These steps might also lower your risk of many other health problems.

Survivors of thyroid cancer should also follow the American Cancer Society Guidelines for the Early Detection of Cancer, including for breast, cervical, colorectal, lung, and prostate 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, whether that’s from friends and family, religious groups, support groups, professional counselors, or others.

Learn more: Life After Cancer