About This Booklet
In 2013, about 45,000 women and 15,000 men will be diagnosed with thyroid cancer in the United States. Most will be older than 45.
Learning about medical care for thyroid cancer can help you take an active part in making choices about your care. This booklet tells about…
- Diagnosis and staging
- Follow-up care
- Taking part in research studies
You can read this booklet from front to back. Or you can read only the sections you need right now.
This booklet has lists of questions that you may want to ask your doctor. Many people find it helpful to take a list of questions to a doctor visit. To help remember what your doctor says, you can take notes. You may also want to have a family member or friend go with you when you talk with the doctor—to take notes, ask questions, or just listen.
The thyroid makes hormones:
- Thyroid hormone: The thyroid follicular cells make thyroid hormone. This hormone affects heart rate, blood pressure, body temperature, and weight. For example, too much thyroid hormone makes your heart race, and too little makes you feel very tired.
- Calcitonin: The C cells in the thyroid make calcitonin. This hormone plays a small role in keeping a healthy level of calcium in the body.
Normal thyroid cells grow and divide to form new cells as the body needs them. When normal cells grow old or get damaged, they die, and new cells take their place.
Sometimes, this process goes wrong. New cells form when the body does not need them, and old or damaged cells do not die as they should. The buildup of extra cells often forms a mass of tissue called a nodule. It may also be called a growth or tumor.
- Benign nodules:
- Are usually not harmful
- Don’t invade the tissues around them
- Don’t spread to other parts of the body
- Usually don’t need to be removed
- Malignant nodules (thyroid cancer):
- May sometimes be a threat to life
- Can invade nearby tissues and organs
- Can spread to other parts of the body
- Often can be removed or destroyed, but sometimes thyroid cancer returns
Thyroid cancer cells can spread by breaking away from the thyroid tumor. They can travel through lymph vessels to nearby lymph nodes. They can also spread through blood vessels to the lungs, liver, or bones. After spreading, cancer cells may attach to other tissues and grow to form new tumors that may damage those tissues.
See the Staging section for information about thyroid cancer that has spread.
Types of Thyroid Cancer
There are several types of thyroid cancer:
- Papillary: In the United States, papillary thyroid cancer is the most common type. About 86 of every 100 people with thyroid cancer have this type. It begins in follicular cells and usually grows slowly. If diagnosed early, most people with papillary thyroid cancer can be cured.
- Follicular: The second most common type is follicular thyroid cancer. A little more than 9 of every 100 people with thyroid cancer have this type. It begins in follicular cells and usually grows slowly. If diagnosed early, most people with follicular thyroid cancer can be treated successfully.
- Medullary: Medullary thyroid cancer is not common. About 2 of every 100 people with thyroid cancer have this type. It begins in C cells and can make abnormally high levels of calcitonin. Medullary thyroid cancer tends to grow slowly. It can be easier to control if it’s found and treated before it spreads to other parts of the body.Medullary Thyroid Cancer Sometimes Runs in Families
A change in a gene called RET can be passed from parent to child. Nearly everyone with a changed RET gene develops medullary thyroid cancer. The disease occurs alone, as familial medullary thyroid cancer, or with other cancers, as multiple endocrine neoplasia (MEN) syndrome.
A blood test can usually detect a changed RET gene. If it’s found in a person with medullary thyroid cancer, the doctor may suggest that family members also be tested. For those who have a changed gene, the doctor may recommend frequent lab tests or surgery to remove the thyroid before cancer develops.
- Anaplastic: The least common type is anaplastic thyroid cancer. About 1 of every 100 people with thyroid cancer has this type. Most people with anaplastic thyroid cancer are older than 60. The cancer begins in follicular cells of the thyroid. The cancer cells tend to grow and spread very quickly. Anaplastic thyroid cancer is very hard to control.
Tests and treatment options depend on the type of thyroid cancer.
If your doctor thinks that you may have thyroid cancer, you’ll have one or more of the following tests:
- Physical exam: Your doctor feels your thyroid for lumps (nodules). Your doctor also checks your neck and nearby lymph nodes for growths or swelling.
- Blood tests: Your doctor may check for abnormal levels of thyroid-stimulating hormone (TSH) in the blood. Too much or too little TSH means the thyroid is not working well. If your doctor thinks that you may have medullary thyroid cancer, you’ll be checked for a high level of calcitonin and have other blood tests.
- Ultrasound: An ultrasound device uses sound waves that can’t be heard by humans. The sound waves make a pattern of echoes as they bounce off organs inside your neck. The echoes create a picture of your thyroid and nearby tissues. The picture can show thyroid nodules that are too small to be felt. Your doctor uses the picture to learn the size and shape of each nodule and whether the nodules are solid or filled with fluid. Nodules that are filled with fluid are usually not cancer. Nodules that are solid may be cancer.
- Thyroid scan: Your doctor may order a scan of your thyroid. You swallow a small amount of a radioactive substance (such as radioactive iodine), and it travels through the bloodstream. Thyroid cells that absorb the radioactive substance can be seen on a scan. Nodules that take up more of the substance than the thyroid tissue around them are called “hot” nodules. Hot nodules are usually not cancer. Nodules that take up less substance than the thyroid tissue around them are called “cold” nodules. Cold nodules may be cancer.
- Biopsy: A biopsy is the only sure way to diagnose thyroid cancer. A pathologist checks a sample of thyroid tissue for cancer cells using a microscope.
Your doctor may take tissue for a biopsy in one of two ways:
- With a thin needle: Your doctor removes a sample of tissue from a thyroid nodule with a thin needle. An ultrasound device can help your doctor see where to place the needle. Most people have this type of biopsy.
- With surgery: If a diagnosis can’t be made from tissue removed with a needle, a surgeon removes a lobe or the entire thyroid. For example, if the doctor suspects follicular thyroid cancer, the lobe that contains the nodule may be removed for diagnosis.
You may want to ask the doctor these questions before having a biopsy:
- Will I have to go to the hospital?
- How long will it take? Will I be awake? Will it hurt?
- Are there any risks? What is the chance of infection or bleeding afterward?
- Will I have a scar on my neck?
- How soon will I know the results? Who will explain them to me?
- If I do have cancer, who will talk to me about the next steps? When?
If the biopsy shows that you have cancer, your doctor will need to learn the extent (stage) of the disease to help you choose the best treatment.
The stage is based on the size of the nodule and whether the cancer has invaded nearby tissues or spread to other parts of the body. Thyroid cancer spreads most often to nearby tissues in the neck or to lymph nodes. It may also spread to the lungs and bones.
When cancer spreads from its original place to another part of the body, the new tumor has the same kind of cancer cells and the same name as the original tumor. For example, if thyroid cancer spreads to the lungs, the cancer cells in the lungs are actually thyroid cancer cells. The disease is metastatic thyroid cancer, not lung cancer. It’s treated as thyroid cancer, not as lung cancer. Doctors sometimes call the new tumor in the lung “distant” disease.
Staging may involve one or more of these tests:
- Ultrasound: An ultrasound exam of your neck may show whether cancer has spread to lymph nodes or other tissues near your thyroid.
- CT scan: An x-ray machine linked to a computer takes a series of detailed pictures of your neck and chest area. A CT scan may show whether cancer has spread to lymph nodes, other areas in your neck, or your chest.
- MRI: MRI uses a powerful magnet linked to a computer. It makes detailed pictures of your neck and chest area. MRI may show whether cancer has spread to lymph nodes or other areas.
- Chest x-ray: An x-ray of the chest can often show whether cancer has spread to the lungs.
- Whole body scan: You may have a whole body scan to see if cancer has spread from the thyroid to other parts of the body. You get a small amount of a radioactive substance (such as radioactive iodine). The substance travels through the bloodstream. Thyroid cancer cells in other organs or the bones take up the substance. Thyroid cancer that has spread may show up on a whole body scan.
Treatment options for people with thyroid cancer are…
You'll probably receive more than one type of treatment. For example, the usual treatment for papillary thyroid cancer is surgery, thyroid hormone treatment, and radioactive iodine therapy. External radiation therapy and chemotherapy are not often used for people with papillary thyroid cancer.
The treatment that's right for you depends mainly on the type of thyroid cancer (papillary, follicular, medullary, or anaplastic). It also depends on the size of the nodule, your age, and whether the cancer has spread. You and your doctor can work together to develop a treatment plan that meets your needs.
Your doctor may refer you to a specialist who has experience treating thyroid cancer, or you may ask for a referral. You may have a team of specialists:
- Endocrinologist: An endocrinologist is a doctor who specializes in treating people who have hormone disorders.
- Thyroidologist: A thyroidologist is an endocrinologist who specializes in treating diseases of the thyroid.
- Surgeon: This type of doctor can perform surgery.
- Nuclear medicine doctor: A nuclear medicine doctor specializes in using radioactive substances to diagnose and treat cancer and other diseases.
- Medical oncologist: A medical oncologist is a doctor who specializes in treating cancer with drugs.
- Radiation oncologist: A radiation oncologist is a doctor who specializes in treating cancer with radiation therapy.
Your health care team can describe your treatment choices, the expected results of each treatment, and the possible side effects. Because cancer treatments often damage healthy cells and tissues, side effects are common. These side effects depend on many factors, including the type of treatment. Side effects may not be the same for each person, and they may even change from one treatment session to the next. Before treatment starts, ask your health care team about possible side effects and how treatment may change your normal activities.
At any stage of the disease, supportive care is available to control pain and other symptoms, to relieve the side effects of treatment, and to ease emotional concerns. You can get information about coping on NCI's website at http://www.cancer.gov/cancertopics/coping.
Also, you can get information about supportive care from NCI's Cancer Information Service at 1-800-4-CANCER (1-800-422-6237). Or, chat using LiveHelp, NCI's instant messaging service, at https://livehelp.cancer.gov.
You may want to talk with your doctor about taking part in a clinical trial. Clinical trials are research studies testing new treatments. They are an important option for people with all stages of thyroid cancer. See the section on Taking Part in Cancer Research.
You may want to ask the doctor these questions before treatment begins:
- What type of thyroid cancer do I have? May I have a copy of the report from the pathologist?
- What is the stage of my disease? Has the cancer spread? If so, where?
- What are my treatment choices? Which do you recommend for me? Will I have more than one kind of treatment?
- What are the expected benefits of each kind of treatment?
- What are the risks and possible side effects of each treatment? What can we do to control the side effects?
- What can I do to prepare for treatment?
- Will I have to stay in the hospital? If so, for how long?
- What is the treatment likely to cost? Will my insurance cover the cost?
- How will treatment affect my normal activities?
- What is my chance of a full recovery?
- Would a research study (clinical trial) be right for me?
Most people with thyroid cancer have surgery. The surgeon removes all or part of the thyroid.
You and your surgeon can talk about the types of surgery and which may be right for you:
- Removing all of the thyroid: This surgery can be used for all types of thyroid cancer. The surgeon removes the thyroid through an incision in the neck. If some of the thyroid tissue can't be removed, it can be destroyed later by radioactive iodine therapy. See the Radioactive Iodine Therapy section.
The surgeon may also remove nearby lymph nodes. If cancer has invaded tissue within the neck, the surgeon may remove as much of that tissue as possible. If cancer has spread outside the neck, treatment of those areas may involve surgery, radioactive iodine therapy, and external radiation therapy.
- Removing a lobe: Some people with follicular or papillary thyroid cancer may have a small tumor removed from only part of the thyroid. The surgeon will remove one lobe and the isthmus. See The Thyroid for a picture of the thyroid lobes and isthmus.
Some people who have a lobe removed have a second surgery later on to remove the rest of the thyroid. Less often, the remaining thyroid tissue is destroyed by radioactive iodine therapy.
It's common to feel tired or weak for a while after surgery for thyroid cancer. The time it takes to heal is different for each person.
You may have pain or discomfort for the first few days. Medicine can help control your pain. Before surgery, you should discuss the plan for pain relief with your health care team. After surgery, they can adjust the plan if you need more pain control.
Surgery for thyroid cancer removes the cells that make thyroid hormone. After surgery, most people need to take pills to replace the natural thyroid hormone. You'll probably need to take thyroid hormone pills for the rest of your life. See the Thyroid Hormone Treatment section.
If the surgeon removes the parathyroid glands, you may need to take calcium and vitamin D pills for the rest of your life.
In a few people, surgery may damage certain nerves or muscles. If this happens, a person may have voice problems or one shoulder may be lower than the other.
You may want to ask the doctor these questions before having surgery:
- Which type of surgery do you suggest for me?
- Do I need any lymph nodes removed? Will the parathyroid glands or other tissues be removed? Why?
- What are the risks of surgery?
- How many surgeries for thyroid cancer have you done?
- How will I feel after surgery? If I have pain, how will it be controlled?
- How long will I have to be in the hospital?
- What will my scar look like?
- Will I have any lasting side effects?
- Will I need to take thyroid hormone pills? If so, how soon will I start taking them? Will I need to take them for the rest of my life?
- When can I get back to my normal activities?
Thyroid Hormone Treatment
After surgery to remove part or all of the thyroid, most people need to take pills to replace the natural thyroid hormone. However, thyroid hormone pills are also used as part of the treatment for papillary or follicular thyroid cancer. Thyroid hormone slows the growth of thyroid cancer cells left in the body after surgery.
Although thyroid hormone pills seldom cause side effects, too much thyroid hormone may cause you to lose weight and to feel hot and sweaty. Too much thyroid hormone may also cause a fast heart rate, chest pain, cramps, and diarrhea. Too little thyroid hormone may cause you to gain weight, feel cold and tired, and have dry skin and hair. If you have side effects, tell your doctor. Your doctor can give you a blood test to make sure you're getting the right dose of thyroid hormone.
You may want to ask the doctor these questions before taking thyroid hormone:
- Why do I need this treatment?
- What will it do?
- How long will I be on this treatment?
Radioactive Iodine Therapy
Radioactive iodine therapy with I-131 is a treatment for papillary or follicular thyroid cancer. It kills thyroid cancer cells and normal thyroid cells that remain in the body after surgery.
People with medullary or anaplastic thyroid cancer usually do not receive I-131 therapy. These types of thyroid cancer rarely respond to I-131 therapy.
For one or two weeks before treatment, you will need to be on a special diet. Avoid fish (especially shellfish), seaweed, iodized salt, milk, yogurt, ice cream, bacon, ham, and other foods with iodine. Do not take vitamin pills or drugs that have iodine.
Because some imaging tests (such as CT scans) use iodine in the contrast material, tell your doctor if you had a CT scan or other imaging test in the past 6 months.
For the treatment, you will swallow one or more capsules or a liquid that contains I-131. Even people who are allergic to iodine can take I-131 therapy safely. I-131 goes into the bloodstream and travels to thyroid cancer cells throughout the body. When thyroid cancer cells take in enough I-131, they die.
Many people get I-131 therapy in a clinic or in the outpatient area of a hospital and can go home afterward. Other people have to stay in the hospital for one day or longer.
Most radiation from I-131 is gone in about one week. Within three weeks, only traces of radiation remain in the body.
During treatment, you can help protect your bladder and other healthy tissues by drinking a lot of fluids. Drinking fluids helps I-131 pass out of the body faster.
Some people have mild nausea the first day of I-131 therapy. A few people have swelling and pain in the neck where thyroid cells remain. If thyroid cancer cells have spread outside the neck, those areas may be painful too.
You may have a dry mouth or lose your sense of taste or smell for a short time after I-131 therapy. Gum or hard candy may help.
A rare side effect in men who receive a high dose of I-131 is loss of fertility. In women, I-131 may not cause loss of fertility, but some doctors advise women to avoid getting pregnant for one year after a high dose of I-131.
Researchers have reported that a very small number of patients may develop a second cancer years after treatment with a high dose of I-131. See the Follow-up Care section for information about checkups after treatment.
Because a high dose of I-131 also kills normal thyroid cells, you'll need to take thyroid hormone pills after this treatment to replace the natural hormone.
You may want to ask the doctor these questions before having I-131 therapy:
- Why do I need this treatment?
- What will it do?
- How do I prepare for this treatment? Which foods and drugs should I avoid? For how long?
- Will I need to stay in the hospital for this treatment? If so, for how long?
- How do I protect my family members and others from the radiation? For how many days?
- Will I-131 therapy cause side effects? What can I do about them?
- What is the chance that I will be given I-131 therapy again in the future?
External Radiation Therapy
External radiation therapy is a treatment for any type of thyroid cancer that can't be treated with surgery or I-131 therapy. It's also sometimes used for cancer that returns after treatment or to relieve bone pain from cancer that has spread.
External radiation therapy uses high-energy rays to kill cancer cells. A large machine directs radiation at the neck or other tissues where cancer has spread.
The treatment usually is given in a hospital or clinic. You may receive external radiation therapy 5 days a week for several weeks. Each treatment takes only a few minutes.
Although radiation therapy is painless, it may cause side effects. The side effects depend mainly on how much radiation is given and which part of your body is treated. Radiation to the neck may cause a sore throat and trouble swallowing. Also, the skin on your neck may become red, dry, and tender.
You are likely to become tired during radiation therapy, especially in the later weeks of treatment. Resting is important, but doctors usually advise patients to try to stay as active as they can.
Although the side effects of radiation therapy can be upsetting, they can usually be treated or controlled. Talk with your doctor or nurse about ways to relieve discomfort. Most side effects go away when treatment ends.
You may find it helpful to read the NCI booklet Radiation Therapy and You.
You may want to ask the doctor these questions before having radiation therapy:
- What is the goal of this treatment?
- Will I need to stay in the hospital? If so, for how long?
- When will the treatments begin? How often will I have them? When will they end?
- How will I feel during treatment? What are the side effects?
- How will we know if the radiation therapy is working?
- Will I be able to continue my normal activities during treatment?
- Are there lasting side effects?
Chemotherapy is a treatment for medullary and anaplastic thyroid cancer. It's sometimes used to relieve symptoms of other thyroid cancers.
Chemotherapy uses drugs to kill cancer cells. Most drugs for thyroid cancer are given directly into a vein (intravenously) through a thin needle, but a new drug for medullary thyroid cancer can be taken by mouth.
You may receive chemotherapy in a clinic, at the doctor's office, or at home. Some people need to stay in the hospital during treatment.
The side effects depend mainly on which drugs are given and how much. For drugs given directly into a vein, the most common side effects include mouth sores, nausea, vomiting, loss of appetite, and hair loss. For the drug given by mouth, side effects include diarrhea, high blood pressure, coughing, and a rash.
Your health care team can suggest ways to control many of these problems. Most go away when treatment ends.
You may want to read the NCI booklet Chemotherapy and You.
You may want to ask the doctor these questions before having chemotherapy:
- What is the goal of treatment?
- What are the risks and possible side effects of treatment? What can we do about them?
- When will treatment start? When will it end?
- How will treatment affect my normal activities?
Before starting treatment, you might want a second opinion about your diagnosis and treatment plan. Some people worry that the doctor will be offended if they ask for a second opinion. Usually the opposite is true. Most doctors welcome a second opinion. And many health insurance companies will pay for a second opinion if you or your doctor requests it. Some companies require a second opinion.
If you get a second opinion, the second doctor may agree with your first doctor’s diagnosis and treatment plan. Or the second doctor may suggest another approach. Either way, you have more information and perhaps a greater sense of control. You can feel more confident about the decisions you make, knowing that you’ve looked at all of your options.
It may take some time and effort to gather your medical records and see another doctor. In most cases, it’s not a problem to take several weeks to get a second opinion. The delay in starting treatment usually will not make treatment less effective. To make sure, you should discuss this delay with your doctor.
There are many ways to find a doctor for a second opinion. You can ask your doctor, a local or state medical society, or a nearby hospital or medical school for names of specialists.
Also, you can get information about treatment centers near you from NCI’s Cancer Information Service. Call 1-800-4-CANCER (1-800-422-6237). Or, chat using LiveHelp, NCI’s instant messaging service.
Other sources can be found in the NCI fact sheet How To Find a Doctor or Treatment Facility If You Have Cancer.
You’ll need regular checkups (such as every year) after treatment for thyroid cancer. Checkups help ensure that any changes in your health are noted and treated if needed. If you have any health problems between checkups, you should contact your doctor.
Thyroid cancer may come back after treatment. Your doctor will check for the return of cancer.
Checkups may include blood tests and imaging tests, such as neck ultrasound. The tests depend on what type of thyroid cancer you have:
- Papillary or Follicular: After treatment for papillary or follicular thyroid cancer, people have an ultrasound exam of the neck, a whole body scan, or blood tests to check the levels of TSH and thyroglobulin. If the whole thyroid was removed, very little or no thyroglobulin should be in the blood. A high level of thyroglobulin may mean that thyroid cancer has returned. Before a thyroglobulin test or whole body scan, you’ll need to get a shot of TSH or stop taking your thyroid hormone pill for about six weeks.
- Medullary: After treatment for medullary thyroid cancer, people have blood tests to check the level of calcitonin and other substances. Checkups may also include an ultrasound exam of the neck, a CT scan, an MRI, or another imaging test.
- Anaplastic: After treatment for anaplastic thyroid cancer, people may have imaging tests, such as a chest x-ray or CT scan.
You may want to ask your doctor these questions after you have finished treatment:
- How often will I need checkups?
- Which follow-up tests do you suggest for me? Do I need to avoid iodized salt and other sources of iodine before any of these tests?
- Between checkups, what health problems or symptoms should I tell you about?
Sources of Support
Learning that you have thyroid cancer can change your life and the lives of those close to you. These changes can be hard to handle. It’s normal for you, your family, and your friends to need help coping with the feelings that a diagnosis of cancer can bring.
Concerns about treatments and managing side effects, hospital stays, and medical bills are common. You may also worry about caring for your family, keeping your job, or continuing daily activities.
Here’s where you can go for support:
- Doctors, nurses, and other members of your health care team can answer questions about treatment, working, or other activities.
- Social workers, counselors, or members of the clergy can be helpful if you want to talk about your feelings or concerns. Often, social workers can suggest resources for financial aid, transportation, home care, or emotional support.
- Support groups also can help. In these groups, patients or their family members meet with other patients or their families to share what they have learned about coping with cancer and the effects of treatment. Groups may offer support in person, over the telephone, or on the Internet. You may want to talk with a member of your health care team about finding a support group.
- NCI’s Cancer Information Service can help you locate programs, services, and NCI publications. Call 1-800-4-CANCER (1-800-422-6237). Or, chat using LiveHelp, NCI’s instant messaging service.
For tips on coping, you may want to read the NCI booklet Taking Time: Support for People With Cancer.
Taking Part in Cancer Research
Doctors all over the world are conducting many types of clinical trials (research studies in which people volunteer to take part). Research has already led to advances in the treatment of thyroid cancer.
Doctors continue to search for new and better ways to treat thyroid cancer. They are testing new treatments, especially chemotherapy.
Clinical trials are designed to find out whether new treatments are safe and effective. Even if the people in a trial don’t benefit directly, they may still make an important contribution by helping doctors learn more about thyroid cancer and how to control it. Although clinical trials may pose some risks, researchers do all they can to protect their patients.
If you’re interested in being part of a clinical trial, talk with your doctor. You may want to read the NCI booklet Taking Part in Cancer Treatment Research Studies. It describes how treatment studies are carried out and explains their possible benefits and risks.
NCI’s website includes a section on clinical trials at http://www.cancer.gov/clinicaltrials. It has general information about clinical trials as well as detailed information about specific ongoing studies of thyroid cancer.
NCI’s Cancer Information Service can answer your questions and provide information about clinical trials. Contact CIS at 1–800–4–CANCER (1–800–422–6237) or at LiveHelp.
Another agency of the Federal Government, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), sponsors research studies for people with thyroid cancer and other thyroid diseases. NIDDK’s website is at http://www.niddk.nih.gov.
You can find NCI and NIDDK studies described at http://www.clinicaltrials.gov. This website provides the latest information about federally and privately supported clinical trials.
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