Frequently Asked Questions
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.
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).
What is different about thyroid cancer in children?
When thyroid cancer is diagnosed in teenagers, it is almost always papillary thyroid cancer. For reasons that are not clear, teenagers and children with thyroid cancer often have lots of neck lymph nodes involved with the thyroid cancer and some even have thyroid cancer spread to the lungs. However, teenagers with thyroid cancer have an excellent overall prognosis and are usually expected to live full productive lives. While recurrence rates are high, the recurrences are usually very treatable with additional surgery and/or radioactive iodine therapy and therefore are not associated with any significant change in overall survival.
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.
How can I get back on with my life?
It is scary to find out you have thyroid cancer. But after you finish your initial treatments 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, make sure to get regular follow-up evaluations with your clinician which will vary depending on your risk of recurrence and your response to initial therapy. 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.
What is new in the ATA 2016 guidelines for thyroid nodules and thyroid cancer?
In 2016, the American Thyroid Association published revised guidelines for the management of thyroid nodules and thyroid cancer. Overall, about 80% of the recommendations remain unchanged from previous editions. Most of the new changes related to their attempts to tailor the recommendations more specificially to the risk of recurrence and death from thyroid cancer for each individual patient. Both using risk estimates at the time of diagnosis but also describing ways to modify those initial risk estimates over time (risk adapted management).
With regard to nodules, the guidelines provided more guidance as to which nodules could be observed and which ones needed to be biopsied based on both the size of the nodule but also the other ultrasonographic features of the nodule.
The guidelines also provided at least 2 other conservative management options for low risk thyroid cancer which included (1) the option of observation rather than immediate surgery for very low risk thyroid cancers confined to the thyroid, and (2) the option of removing only half of the thyroid for selected patients with tumors less than 4 cm that appeared to be confined to the thyroid. Obviously, these conservative management options are not suitable or acceptable for all patients. Therefore, a discussion of the risks and benefits of the specific approach for an individual patients case is mandatory.
With the FDA approval of two new medications for the treatment of radioactive iodine refractory thyroid cancer (sorafenib, and lenvatinib), the 2016 guidelines provided much additional information regarding the use of these types of drugs, proper patient selection, and side effect management.
Why do I need to take thyroid hormone after my thyroid surgery?
As previously mentioned, patients that had their entire thyroid removed start taking thyroid hormone after their surgery. If only half of the thyroid was removed, thyroid blood tests are usually done 4-8 weeks after surgery to determine if the half of thyroid is producing enough thyroid hormone to make you feel normal.
Thyroid hormone pills replace the normal hormones 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. Your goal TSH level will be based on your initial risk assessment and your response to therapy classification. But it is very few patients that require the TSH to be completely undetectable. Most patients initially start with a TSH goal of about 0.1 to 0.5 mIU/L which then changes to 0.5 to 1.5 mIU/L once they demonstrate an excellent response to therapy (remission)
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.
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.
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.
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.
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 usually do not have to use cytomel.
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.
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.
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.
What is the risk of death from thyroid cancer?
With appropriate initial therapy, 30 year survival rates for thyroid cancer are usually more than 95%. 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 (8th edition AJCC stage III or IV). 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.
Social Security Disability Benefits
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
- 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
- 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.
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.