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Light of Life Patient Programs

August 1st, 2014
Light of Life Foundation partners with New Jersey Shore Medical Center in Central NJ on thyroid cancer.

October 11th, 2014
Light of Life Foundation Patient Educational Program in NYC @ Memorial Sloan Kettering Cancer Center on thyroid cancer.

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Thyroid Cancer Q&A

A cancer on the rise

Thyroid cancer is a cancerous tumor or growth (nodule) located within the thyroid gland.  Thyroid cancer is uncommon, accounting for only about 1 out of every 100 cancers in the United States.  Of these thyroid cancers, 65% to 80% are diagnosed as papillary thyroid cancer, 10% to 15% are follicular, 5% to 10% are medullary, and 3% to 5% are anaplastic.  If you or someone you know has been diagnosed with thyroid cancer, you will be glad to know that the outlook with treatment is usually excellent – most thyroid cancers can be totally removed with surgery.

Thyroid cancer is diagnosed about three times more often in women than men. The reason for this higher rate of thyroid cancer in women is unclear.

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Is thyroid cancer more common now than 10 years ago?

Yes, for reasons that are not quite clear, the incidence of thyroid cancer in women is rising faster than any other cancer in the United States. Some think that the rising incidence is due to the accidental detection and early diagnosis of very small thyroid cancers with widespread use of radiology studies of the head and neck. Other researchers are worried that there is as yet some unknown cause for the rise in thyroid cancer cases.

In 2008, at least 35,000 new cases of thyroid cancer were diagnosed and treated. Because of the excellent overall survival after treatment for thyroid cancer, there are at least 350,000 thyroid cancer survivors living in the United States.

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After initial treatment, are recurrences common?

Unfortunately, yes. While most patients have a very small risk of dying from thyroid cancer, the risk of recurrence can be as high as 30% depending on the specifics of the individual tumor and patient. The good news is that most recurrences appear in lymph nodes in the neck and are usually readily treated with either additional surgery or more radioactive iodine.

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What is the risk of death from thyroid cancer?

With appropriate initial therapy, 30 year survival rates for thyroid cancer are usually more than 90%. The risk of dying from thyroid cancer is highest in older patients (>60 yrs old) with thyroid cancer that either cannot be completely removed surgically or has spread to the lungs or the bones. As noted above, anaplastic thyroid cancer is a much more aggressive tumor than the more common thyroid cancers and is associated with significantly higher disease specific mortality rates.

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How will recurrent thyroid cancer be found?

In the past, radioactive iodine whole body scans were the primary tool used to detect recurrent thyroid cancer. However, the primary tools used today include the blood test marker of thyroid cancer (serum thyroglobulin) and the neck ultrasound. If the serum thyroglobulin is elevated and the disease is not localized with a neck ultrasound, other radiologic studies are often used to identify the site of disease. These studies may include CT, MRI, and/or FDG PET scanning.

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What are the treatment options for recurrent thyroid cancer?

Probably more than 90% of the recurrences in thyroid cancer develop in the neck. Usually these are detected as enlarged lymph nodes that contain thyroid cancer. Large lymph nodes suspected of containing thyroid cancer are removed surgically. Small lymph nodes are less likely to require surgical removal and may be followed with careful observation or a repeat dose of radioactive iodine. Rarely, external beam irradiation is used for an aggressive recurrence that cannot be surgically removed and is unlikely to respond to additional radioactive iodine.

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What is the thyroid gland and what does it do?

The purpose of your thyroid gland is to make, store, and release thyroid hormones into your blood. These hormones, which are also referred to as T3 (liothyronine) and T4 (levothyroxine), affect almost every cell in your body, and help control your body’s functions. If you have too little thyroid hormone in your blood, your body slows down. This condition is called hypothyroidism. If you have too much thyroid hormone in your blood, your body speeds up. This condition is called hyperthyroidism.

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What causes Thyroid cancer?

Usually, we don’t know the specific cause of an individual patient’s thyroid cancer. Thyroid cancer is more likely to occur in people who have undergone radiation therapy of the head, neck, or chest during childhood. Radiation was commonly used before 1960 to shrink enlarged tonsils or adenoids, to treat various skin problems (such as acne), and to reduce an enlarged thymus gland (an organ inside the chest) in infants. Radiation exposure following the Chernobyl nuclear power plant reactor tragedy resulted in nearly 4,000 cases of thyroid cancer in children exposed to the fallout in April 1986.

Radiation that is used in diagnostic x-rays (for example, x-rays used by dentists or CT scans of the neck/chest) is not connected with thyroid cancer. However radiation treatments to the head and neck that is still being used as therapy for malignancies in childhood and early adult life can be associated with an increased risk of development of thyroid cancer many years later. Thyroid cancer is also more likely to occur if you have a family member who has had thyroid cancer. However, thyroid cancer can occur in anyone.

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Is thyroid cancer hereditary?

As a general rule, the common forms of thyroid cancer (papillary and follicular) are not thought to be hereditary. However, some studies do suggest that perhaps as many as 3-4% of patients with thyroid cancer have more than 2 first degree relatives with thyroid cancer suggesting that it can occasionally be hereditary within a family. As of now, there is no specific genetic test that can be used to look for hereditary thyroid cancer of the papillary and follicular types.

For papillary and follicular thyroid cancer, we do not routinely recommend special screening or additional testing of family members beyond routine thyroid blood tests and a physical examination of the thyroid.

As discussed above, medullary thyroid cancer can be hereditary in as many as 25% of patients diagnosed. The genetic cause is well known and can be evaluated using a commercially available blood test (RET proto-oncogene).

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How is thyroid cancer diagnosed?

Thyroid cancer is often discovered by patients themselves. You may see or feel a lump or nodule on the front of your neck, or your doctor may notice a nodule during a routine physical examination.

The most common initial finding is the appearance of a painless mass in the lower anterior neck in the region of the thyroid gland. In most cases the thyroid function is normal when measured by blood tests.

Usually the diagnosis of thyroid cancer is suspected because a nodule or mass is detected in the front of the neck. In most cases, a needle biopsy of the nodule is needed to obtain cells for careful evaluation under a microscope. In most cases, microscopic analysis of the cells obtained from a needle biopsy can readily determine if a nodule is benign (not cancer) or malignant (cancer). While thyroid blood tests are usually done to evaluate the function of the thyroid, and a thyroid ultrasound is often done to evaluate the structure of the thyroid gland, neither of these types of tests are sufficient to confidently determine if a thyroid nodule is benign or malignant.

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Can thyroid cancer be detected with a blood test?

No. Despite extensive research, there is no single blood test that can accurately detect or diagnose thyroid cancer. The usual thyroid function tests are almost always normal in patients with thyroid cancer. Therefore, normal thyroid blood tests do not rule out a thyroid cancer.

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Are radioactive iodine thyroid scans used to diagnose thyroid cancer?

If the thyroid blood tests are normal, radioactive iodine scans are seldom used today in the evaluation of thyroid nodules. Radioactive iodine scans of the neck will document the location and general size of the isotope-concentrating thyroid but not as precisely as will an ultrasound. The portion of the gland which does not concentrate the radioisotope will not be visualized. It does provide a measure of the gland’s ability to “pick-up” or concentrate the radioactive isotope, a gross measure of thyroid function.

Most thyroid tumors, benign and malignant, will not concentrate the isotope but, on the contrary, a small portion of tumors that do so may be malignant. Thus, the radioactive isotope scan provides little help in distinguishing between benign and malignant tumors.

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What is a thyroid ultrasound (US)?

A thyroid ultrasound is a sound wave picture (like a radar) of the thyroid. It is usually the best test to evaluate the size and structure of the thyroid. Since the test uses sound waves (and not radiation) it is very safe and can be used repeatedly without complications.

In addition to evaluating the thyroid gland, ultrasonography is now commonly used during follow up to detect recurrent thyroid cancer in the neck.

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What is FDG PET scanning?

FDG PET scanning is a newer testing modality in which radioactive sugar (FDG) is detected using a special scanner (PET scan). FDG PET scanning is particularly good at localizing thyroid cancer that no longer concentrates radioactive iodine. In young patients, FDG PET scanning is rarely required since the thyroid cancer in young patients usually concentrates radioactive iodine very well and seldom uses enough glucose to allow detection with the PET scanner. Conversely, more poorly differentiated thyroid cancers that often arise in older patients often fail to concentrate radioactive iodine and since they use more sugar than the surrounding normal cells are often readily detected with FDG PET scanning.

It is important to note many other benign and malignant conditions can also cause nodules and lymph nodes to concentrate high levels of glucose and therefore may be positive on the FDG PET scan. Therefore, biopsy of lesions found on the PET scan are usually required before one can be certain that the lesion found is actually thyroid cancer.

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What is the Thyroglobulin (Tg) blood test?

A thyroglobulin test is a blood test that measures the amount of thyroglobulin, a protein that stores thyroid hormone, in your blood. Thyroid cells are the only cells in your body that make thyroglobulin. So if thyroglobulin shows up in your blood test, then you know that normal thyroid cells or thyroid cancer cells are present somewhere in your body. Since thyroglobulin is made in the normal thyroid, it cannot be used to diagnose thyroid cancer. However, after surgery to remove the thyroid and radioactive iodine therapy to destroy any residual thyroid cells, the serum thyroglobulin should be nearly zero in cured patients. A detectable or rising serum Tg after initial therapy may indicate persistent thyroid cancer.

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What are anti-thyroglobulin antibodies?

As many as 20-25% of thyroid cancer patients have an antibody in their blood stream that is directed at the thyroglobulin protein. While the antibody itself does not cause any medical problems, it does interfere with the testing procedure that we use to measure the serum thyroglobulin. If anti-thyroglobulin antibodies are present, the value obtained for serum thyroglobulin is unreliable. In most cases the anti-thyroglobulin antibodies make the measured serum thyroglobulin appear lower than it really is. This could make it look like someone is cured (very low measured serum thyroglobulin) when the actual serum thyroglobulin is quite elevated.

The gradual disappearance of anti-thyroglobulin antibodies is a good sign and usually indicates the patient is cured of thyroid cancer. However, it may take years for the anti-thyroglobulin antibodies to gradually resolve.

The method of testing for thyroglobulin may vary slightly from laboratory to laboratory. To minimize the variability of results based on differences in laboratories and methodology, your doctor will recommend being consistent with the laboratory where you have your thyroglobulin measured.

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What is a biopsy?

If the nodule is large enough to warrant additional evaluation, a fine needle aspiration biopsy (FNAB) is often used to learn whether a thyroid nodule is benign or cancerous. With this test, a very small needle is inserted through the skin into the thyroid nodule in order to remove samples of tissue or fluid, which are then analyzed in a lab. The test is fast, safe, and usually causes little discomfort with some patients reporting a feeling of pressure to the area during the procedure.

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Do all thyroid nodules require fine needle aspiration biopsy?

No. As a general rule, thyroid nodules less than 1 cm (approximately ½ inch) can be followed with observation without the need for fine needle aspiration. These small nodules are often found incidentally on CT, MRI or neck ultrasound done for some other reason. They are very common and are rarely thyroid cancer. Therefore, in the absence of other high risk features, these small nodules are usually observed with a repeat thyroid ultrasound in 6-12 months reserving biopsy for those few nodules that increase in size over time.

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What if the biopsy shows that my nodule is cancerous?

The primary treatment of choice for most thyroid tumors is surgical removal. Once the examination is complete and surgery is indicated, an experienced thyroid surgeon should be consulted. This may be a general surgeon, an otolaryngologist (ear, nose and throat specialist) or endocrine surgeon, usually a general surgeon who has confined his/her practice to the treatment of endocrine tumors. In general, the more experienced the surgeon in the management of thyroid tumors, the more sophisticated and knowledgeable he or she is in the decision making, surgical technical ability and pre- and post-operative patient care.

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What are the risks of thyroid surgery?

Like any major surgery, thyroidectomy is not without risks. These will be explained in great detail to you by your surgeon. In addition to the risks of bleeding and infection that are common to most surgeries, there is the risk of damaging the nerves that control the voice box and the glands that keep the serum calcium normal (parathyroid glands). In experienced hands the risk of permanent nerve damage is less than 1 % and the risk of permanent parathyroid gland injury is less than 10%. Postoperatively, temporary changes in the voice and low serum calcium levels are common and usually resolve over several weeks to months.

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How important is the microscopic evaluation of the thyroid cancer that is removed by the surgeon?

The pathologic microscopic examination of any thyroid surgical specimen is very important and demanding. There are multiple pitfalls encountered in deriving a precise and accurate diagnosis. That diagnosis significantly impacts upon subsequent investigation, treatment and ultimate prognosis. The more experienced the pathologist, the more likely the diagnosis will be accurate and complete.

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Once my surgery is over, is my cancer gone forever?

In cases of small thyroid cancers confined to the thyroid, surgery alone has a very high cure rate. When the thyroid cancers are larger, or spread outside the thyroid gland, the risk of recurrence can vary between 5-30% depending on the specifics of the individual tumor and patient.

Sometimes thyroid cancer can come back or spread to other parts of the body – even many years after surgery. That is why your doctor needs you to come in for regular checkups especially in the first 5 to 10 years after your surgery.

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How is tc typically treated AFTER SURGERY?

While nearly all patients with thyroid cancer require thyroid surgery, the use of other treatments is quite variable and depends on the specifics of each individual tumor and patient. Most patients will require thyroid hormone replacement in the form of a single pill that needs to be taken daily. Often radioactive iodine is used to destroy any residual microscopic thyroid cancer that was not visible to the surgeon at the time of the operation.

Chemotherapy and/or external beam irradiation is rarely used in papillary or follicular thyroid cancer.

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What is radioactive iodine?

Radioactive iodine is one of the principal tools used for both treatment and detection of persistent/recurrent disease. The normal thyroid cell (and most thyroid cancers) need iodine to make thyroid hormone. Thyroid cells have a highly specialized pump that actively concentrates iodine inside the thyroid cell. Since the pump cannot differentiate normal iodine from radioactive iodine, the radioactive iodine pumped into the cell can be used in very small doses to localize and identify thyroid cancer anywhere in the body and can be used in larger doses to destroy those same cells.

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Why do I have thyroid tissue left after my surgery?

Depending on the specific details of your thyroid cancer presentation you and your surgeon will have decided on only half or on complete removal of your thyroid gland. The usual surgery is complete removal of the thyroid gland. Despite the term “complete” and despite expert surgical skills the surgeon will usually leave behind a small amount of thyroid tissue and cells to avoid injuring important structures, namely the nerve that control your voice box and the parathyroid glands which help maintain normal calcium levels in your blood.

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What is the usual follow up in the first 2 years after diagnosis and treatment?

After appropriate thyroid surgery, a decision is made regarding whether radioactive iodine therapy is needed. If needed, this usually happens about 1-3 months after surgery.

If all goes well, the usual follow up pattern is to see the endocrinologist and thyroid surgeon about every 6 months for the first 2 years. At each visit blood tests are drawn to check the thyroid hormone levels, thyroglobulin and thyroglobulin antibodies. Often times serum calcium and PTH is measured if there was any problem with the calcium levels in the immediate post-operative period.

Usually a neck ultrasound is done 1 and 2 years after surgery to rule out recurrence in the neck. Whole body radioactive iodine scans are no longer routinely performed on every thyroid cancer patients, but may be done in patients at higher risk of persistent/recurrent disease.

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What is the usual long term follow up?

With our modern follow up tests, most significant recurrences are detected within the first 2 years of diagnosis and treatment. Therefore, patients who have no evidence of disease at the 2 year point are often seen yearly with blood tests (TSH, Free T4, thyroglobulin, anti-thyroglobulin antibodies) and the occasional neck US (every few years). If the serum thyroglobulin remains essentially undetectable, other radiology tests or nuclear medicine tests are usually not required. However, thyroid cancer recurrence may be detected as late as decades after the initial treatment and appropriate follow-up should be lifelong.

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What is multidisciplinary management?

The treatment of thyroid cancer is often a cooperative effort requiring several different specialists including endocrinologist, nuclear medicine expert, medical and radiation oncologist in addition to the primary care physician and surgeon. Treatment must be individualized at multiple points along the patient’s course, depending upon the nature and extent of the tumor, while not excluding factors of the patient’s general health, both physical and psychological, age and wishes. The complex management of the more aggressive tumor may require several different treatment modalities to provide the patient the best chance of cure with the best quality of life. The importance of one physician who is knowledgeable and sophisticated in the management of thyroid cancer to act as the captain of the ship, directing the treatment and enlisting the aid of other disciplines when and if necessary, cannot be overemphasized. Most, but not all, patients will do well if the disease is detected early and managed appropriately and carefully.

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Types of TC

There are different variants of papillary and follicular (well differentiated) thyroid cancer that are classified based on the characteristics the pathologist sees under the microscope when he or she examines your thyroid tissue samples. Variants are tall cell, insular, columnar and hurthle cell carcinomas. The prognosis and follow-up may vary slightly depending on the variant but overall the treatment and management of these tumors is similar.

In general, papillary thyroid cancer has the best overall prognosis (30 year survival rates greater than 90%) with appropriate diagnosis and treatment. Follicular thyroid cancers and medullary thyroid cancers have an intermediate prognosis with 30 year survival rates greater than 75% or so depending on the specifics of an individual patient and tumor. Anaplastic thyroid cancer is one of the most aggressive solid malignancies with one year survival rates that are often less than 10%. However, with appropriate treatment, some patients with anaplastic cancer are long term survivors.

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What is different about medullary thyroid cancer?

Except for medullary thyroid cancer, the other common types of other thyroid cancers arise from a thyroid follicular cell (the normal thyroid cell that concentrates iodine and produces/stores/releases thyroid hormone). Medullary thyroid cancer arises from a different cell type within the thyroid gland (c-cells). These c-cells are neuroendocrine cells that are very different from thyroid follicular cells in that they do not concentrate iodine and they do not make thyroid hormones.

Unlike the other thyroid cancers, medullary thyroid cancer may be part of a hereditary syndrome in which each first degree relative of an affected patient has a 50% chance of developing medullary thyroid cancer. The genetic mutation for hereditary thyroid cancer is now well know and its detection is possible with a commercially available blood test (RET proto-oncogene). Of all the patients with medullary thyroid cancer, only 25% have a genetic syndrome that can be passed through a family. The other 75% have sporadic medullary thyroid cancer that affects only that patient and is not hereditary.

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Whole body scan

Another test that checks for the return or spread of the cancer is called a whole body scan, or WBS. In this test, you will be asked to take a pill or drink with a small, safe amount of radioactivity, called 131I (“eye-one-thirty-one”). After you have taken the pill or drink, you will lie down under a large camera that takes an x-ray picture (scan) of your body. If any thyroid cells are present in your body, they will show up as spots on the film.

It is important to note that this “whole body scan” is only useful for detecting thyroid cancer. Other cancers do not concentrate radioactive iodine and are therefore not detected by radioactive iodine whole body scanning.

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Is radioactive iodine harmful?

Radioactive iodine has been used in thousands of patients with both benign and malignant thyroid disease since the late 1940’s. While multiple, large doses of radioactive iodine appear to very slightly increase the risk of other types of cancers later in life, we do not believe that the usual one or two doses of radioactive iodine used in the typical thyroid cancer patient result in any significant increased cancer risk.

Because the salivary glands in the mouth that make saliva also have the pump that concentrates radioactive iodine, it is quite common to have alterations in taste, pain/discomfort in the salivary glands that develops shortly after taking the radioactive iodine. Less commonly the damage to the salivary glands can be more severe and result in dry mouth. While these salivary gland side effects can develop in as many as 30-40% of patients, they usually resolve, with fewer than 5-6% of patients having persistent problems after RAI treatment.

Radioactive iodine appears to have little, if any, impact on subsequent fertility in either men or women. While we often ask that patients not get pregnant for 6-12 months after a dose of radioactive iodine, we expect normal fertility after the usual one or two doses of radioactive iodine that may be needed.

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Is radioactive iodine treatment required for all thyroid cancer patients?

No. Patients staged as low risk do not significantly benefit from routine use of radioactive iodine therapy in terms of having any meaningful impact on the already very low rates of recurrence and disease specific mortality. Radioactive iodine is only recommended if it is anticipated that treatment will result in decreased recurrence rates, improved survival or a clinically meaningful increased ability to detect and treat recurrent disease.

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What is the criteria for not needing radioactive iodine?

Your doctor will review the details of your thyroid cancer including the size and number of tumors, whether or not it invaded structures outside of the thyroid including blood vessels and lymph nodes, an assessment of the presence or lack of features (variant) that may suggest a more aggressive type of tumor, and consideration of how and where you will be followed for your cancer. Thyroid cancer may be a small size, confined to the thyroid and lack any local invasion/spread or other features that your doctor views as higher risk. When this is the case, your doctor will weigh the potential risks and or benefits of giving you additional treatment with radioactive iodine. If he or she does not see any significant benefit in achieving the goals of radioactive iodine, they will not recommend it.

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What is the goal of radioactive iodine?

(1) The goal of radioactive iodine can vary depending on the patient to whom it is given, but in general it is given for the following: to decrease the risk of recurrence of your cancer by treating any remaining cancer cells and/or tissue left behind after your surgery.

(2) To improve the long-term survival of some patients with thyroid cancer.

(3) To treat and/or detect any thyroid cancer that has spread to other parts of the body. The detection portion requires a whole body scan, which is always done after treatment with radioactive iodine. “Ablating” (eliminating) any remaining normal thyroid tissue may also make future treatments for thyroid cancer more effective.

(4) To aid your doctor in the ability to detect recurrent disease. Radioactive iodine may help, but is not always required, to bring the thyroid cancer marker (thyroglobulin) we measure in the blood to an undetectable level so that if the cancer comes back we see it as a rise in the tumor marker. Thyroglobulin is a protein made by the follicular cells of the thyroid that stores thyroid hormone. Its presence or absence in some patients with thyroid cancer patients may indicate the presence or absence of thyroid cancer, respectively.

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Will this testing have an impact on my life?

Yes. Patients treated with radioactive iodine will be radioactive for several days after treatment. While the specific radiation safety precautions will vary from patient to patient, usually it is necessary to avoid close contact with children and pregnant women for 2-5 days after treatment with radioactive iodine.

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What is Thyrogen?

Thyrogen is just like the TSH that the body produces naturally, although it is made in a laboratory. Because Thyrogen is just like TSH, you do not have to stop taking your thyroid hormone therapy or risk going through weeks of unpleasant symptoms before being tested. You can keep taking your thyroid hormone therapy. In other words, you will not have to become hypothyroid. This is especially important in the first years after thyroidectomy, since patients may require repeated testing for the return or spread of the cancer during this period.

Side effects of taking Thyrogen (thyrotropin alfa for injection) are few and generally mild. Some people experience nausea, headache, weakness, or vomiting after their injection. A few people have experienced itching or rash at the site of the injection. Please see the section entitled ADVERSE REACTIONS in the complete prescribing information. If you experience any side effects or have any questions, contact your doctor.

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Why might it be prescribed?

Effective use of radioactive iodine requires both a low iodine diet and an elevated TSH (thyroid stimulating hormone). We usually recommend a low iodine diet for up to 1 week prior to the use of radioactive iodine in order to deplete the normal iodine from the body: thereby increasing the chance that a thyroid cell will grab onto radioactive iodine rather than normal iodine. Your physician will give you specific instructions on how long to remain on the low iodine diet as well as resources that provide a detailed description of a low iodine diet.

In addition, since thyroid cancer cells often don’t concentrate radioactive iodine as well as normal thyroid cells, we use an elevated TSH level to help stimulate the thyroid cells to concentrate radioactive iodine. In the past, whenever people were tested for the return or spread of thyroid cancer (especially if they had a whole body scan), they had to stop taking their thyroid medication for 2 to 6 weeks before the test. This allowed their body to produce enough TSH to make the tests as accurate as possible. But it also caused patients to become hypothyroid. Plus, even when the testing was done and they started taking their thyroid medication again, many people continued to feel hypothyroid until the level of thyroid hormone in their bloodstream returned to normal. All in all, some people felt the symptoms of hypothyroidism for up to 10 to 12 weeks.

The availability of Thyrogen (recombinant human TSH) allows us a method to raise the TSH through intramuscular injections without having to stop the patients thyroid hormone pills. Therefore, most patients can receive radioactive iodine scanning and initial therapy using Thyrogen rather than going through thyroid hormone withdrawal.

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Why do I need to take thyroid hormone after my thyroid surgery?

As previously mentioned, most thyroidectomy patients start taking thyroid hormone after their surgery. It replaces the hormone that the thyroid gland used to make. Taking thyroid hormone prevents you from experiencing hypothyroidism, which can cause a variety of symptoms, such as depression, difficulty in concentrating, tiredness, forgetfulness, dry skin and hair, puffy face and eyes, inability to tolerate the cold, weight gain, constipation, and heavy menstrual periods in women. These symptoms of hypothyroidism vary from patient to patient.

Another reason to take thyroid hormone after thyroidectomy is that TSH (thyroid stimulating hormone made by the pituitary gland) may cause thyroid cancers to grow. Taking thyroid hormone tablets sends a signal to the pituitary gland to make less TSH.

So, taking the thyroid hormone tablets helps in two ways:

(1) It replaces the thyroid hormone that your body used to make on its own, so that you will not become hypothyroid.

(2) It tells the pituitary to make less TSH, so that if thyroid cancer cells are present, they will have less growth stimulation.

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Are there any special instructions regarding how to take thyroid hormone?

Yes. Thyroid hormone is best taken on an empty stomach at least 30-60 minutes before eating. When thyroid hormone is taken with food or supplements (iron, calcium), it is less well absorbed into the blood stream.

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Are generic thyroid hormone products interchangeable with brand name products?

While generic thyroid hormone products may be acceptable in the treatment of mild hypothyroidism, we prefer the branded products for most patients with thyroid cancer. Consistent use of a single brand minimizes variability between products and yields the most consistent thyroid hormone replacement and TSH suppression which are a critical part of the treatment of thyroid cancer.

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What is armour thyroid?

Armour thyroid is ground up normal animal thyroid gland. It contains several thyroid hormones and is more variable than the more commonly used synthesized thyroid hormone preparations (levothyroxine). Because it is more difficult to tightly control the TSH level with armour thyroid, we prefer thyroid cancer patients use one of the branded levothyroxine products.

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What is cytomel?

Cytomel is the commercial name for the thyroid hormone, T3 (liothyronine). The normal thyroid produces predominantly T4 (levothyroxine) and a very small amount of T3. Most of the T3 used by the body is produced inside the various cells in the body from the T4 that is circulating in the blood stream. The vast majority of patients are very nicely replaced with T4 (levothyroxine) alone. Because T3 is much shorter acting, has more variability, and is produced by each cell from T4, we seldom use cytomel.

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Is thyroid hormone replacement always needed after thyroid surgery?

If the entire thyroid is removed, thyroid hormone treatment will always be required after surgery. In the case of small thyroid cancers, sometimes only half of the thyroid is removed. If only half of the thyroid is removed, thyroid blood tests will be required after surgery to determine if thyroid hormone replacement is required.

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What are the risks of prolonged thyroid hormone suppressive therapy?

Suppression of the serum TSH with thyroid hormone is a part of therapy for most thyroid cancer patients. Most patients can tolerate thyroid hormone suppression for several years with little problems. After several years without evidence of recurrence, the dose of thyroid hormone is often decreased resulting in less TSH suppression.

In young patients this appears to cause little problems. However, in older patients, prolonged thyroid hormone suppressive therapy can be associated with abnormal heart rhythms (atrial fibrillation) and thinning of the bones (osteopenia/osteoporosis). Therefore, it is important to tailor the degree of thyroid hormone suppression to the risk of the cancer keeping the patients other medical problems in mind.

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How can I get back on with my life?

It is scary to find out you have thyroid cancer. But now that you will have surgery to remove the cancer (or you have had the surgery in the past) and you are taking thyroid hormone therapy, your life can just about return to normal. Take good care of yourself by eating well, exercising regularly, and managing stress. Learning relaxation methods, learning to set priorities, and remembering to laugh all help to reduce stress. Take pleasure in doing things that you did before your diagnosis. Most of all, get regular checkups to make sure you remain cancer free. If you find it difficult to have regular checkups for any reason, talk with your doctor or nurse about your concerns.

Remember, you do not have to go through this alone. Talk to family and friends about whatever fears and questions you may have, and consider joining a thyroid cancer support group. At a support group, you will find other people who are willing to share their firsthand experience with thyroid cancer. To find a support group in your area, ask your doctor or nurse, or contact one of the thyroid cancer organizations listed in our links page.

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Will pregnancy increase my risk of recurrence?

We consider pregnancy to be a very mild stimulus to the thyroid (both the normal thyroid and potentially to thyroid cancer cells). Therefore, we prefer if women can wait at least 6-12 months after initial therapy before getting pregnant. That being said, we have had many patients get pregnant in just a few months after surgery and RAI and have completely normal, healthy pregnancies. While the data is somewhat conflicting, there may be a slightly higher miscarriage rate in the first 6-12 months after RAI.

We usually say that pregnancy never made anyone have a recurrence that was not destined to have a recurrence in the years to come. However, it is possible that the mild stimulation of pregnancy may make the recurrence become clinically apparent a little sooner than would have otherwise happened. We have had many women have healthy, uncomplicated pregnancies after therapy for their thyroid cancer.

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How long should I wait to become pregnant after RAI therapy?

Contraception is advised for the first 6-12 months after RAI therapy. There may be a transient effect of RAI on the ovarian/gonadal function immediately after therapy, although this does not seem to have any significance in the long term. In our view, the main reason to avoid pregnancy within the first year after initial treatment is to allow flexibility if additional treatment and/or scans are needed within that time.

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What treatments are available if RAI is no longer working?

In the past, the treatment options were very limited and not very effective. Usually some combination of chemotherapies (e.g. doxorubicin or platinum based regimens) would be offered with realistic success rates of less than 5-10%. In the past 5 years, there has been an explosion in the number of target therapies that are being used in thyroid cancer. Many of these newer agents (e.g. sorafenib, motasenib, axitinib) are demonstrating some degree of clinical benefits in as many as 50-70% of patients with advanced, progressive, metastatic thyroid cancer.

While these new targeted agents are not as toxic as traditional chemotherapy, they are not without side effects. The side effects appear to be dose related and are reversible when the medication is stopped. The most common side effects include high blood pressure, rash, fatigue and diarrhea.

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Thyroid Cancer and Social Security Disability Benefits

Thyroid cancer takes several forms and the type you have determines the treatment method. The symptoms, complications, and treatment side effects vary as well. While the most aggressive forms certainly prevent employment, any thyroid cancer can affect your ability to work. If your illness or your required treatments make it impossible for you to maintain gainful employment, then you may be able to receive benefits through the Social Security Administration’s (SSA’s) disability programs.

SSA Disability Programs

Disability benefits are available through two separate programs. Medically qualifying for both is the same, but each has its own technical requirements:

  • Social Security Disability Insurance (SSDI) – provides monthly benefits to disabled workers that meet medical and work history or work credit requirements. The work credits necessary to qualify vary dependent upon your age at the time you become disabled, but most applicants need to have worked for five of the past ten years. Work credits accumulate as you pay Social Security taxes on your earned income over the course of your employment.
  • Supplemental Security Income (SSI) – monthly benefits to disabled individuals of any age who meet medical eligibility and “financial need” criteria. The SSA looks at income and assets, but only counts some finances toward eligibility and there are no work history requirements for this program.

For both of these programs, you must have a medical condition that prevents gainful employment. Thyroid cancer can qualify for Social Security Disability (SSD), though the type and stage of cancer and the treatments required all play a part in the SSA’s determination on your eligibility.

Medically Qualifying for Benefits with Thyroid Cancer

The SSA recognizes cancer as a potentially disabling condition, but not all types and grades of cancer “automatically” meet eligibility requirements. Thyroid cancer appears as a listed condition in the Blue Book, which is the SSA manual of disabling conditions. To meet this listing, your cancer must either be:

  • Papillary or Follicular Carcinoma that:
    • has metastasized beyond regional lymph nodes
    • AND
    • recurs or advances after initial treatment with radioactive iodine.
  • Medullary Carcinoma (a carcinoma from a particular type of cell) that has metastasized beyond regional lymph nodes
  • OR
  • Anaplastic Carcinoma, which is thyroid cancer with a poor prognosis due to its aggressive nature.

Your medical records are the key to approval for SSD benefits. They should contain a formal diagnosis and show you’re receiving ongoing care from a qualified physician. A thorough medical history is necessary, including a date of diagnosis, diagnostic evaluations, treatment records, and documentation of the symptoms and complications of your illness and treatments.

Qualifying Without Meeting a Listing

If you’re unable to meet the Blue Book listing for thyroid cancer, you may still be able to receive benefits. Qualifying without meeting a listing requires that the SSA examines your “activities of daily living” or ADLs. This is done through a “residual functional capacity” (RFC) analysis.

RFC evaluations are primarily completed via additional questionnaires the SSA mails to you. You may also be required to attend an appointment for an independent evaluation by a contracted physician. While it is more complex and takes longer, you can still be approved for benefits if your RFC shows you are severely limited by your thyroid cancer and required treatments.

Compassionate Allowance

Certain disabilities are included in the SSA’s Compassionate Allowance (CAL) program. This initiative is designed to expedite the review of applications filed for terminal illnesses and other aggressive and inherently disabling conditions. Anaplastic carcinoma is among the CAL program’s “automatic approval” list. If you file for benefits for this type of thyroid cancer, your application will be fast tracked through the review and approval process and the amount of medical evidence required is kept to a minimum.

Submitting an Application

SSDI and SSI have separate application processes.

  • With SSDI, you can apply online or in person at the local SSA office. Online applications are completed via the SSA’s website.
  • SSI applications require a personal interview with an SSA representative. This is usually done at the local branch office.

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