It all started with bumps-what I would later learn were actually called nodules-in my neck. A friend at work noticed that my neck appeared swollen, and my mom mentioned to me a few times that the right side of my neck looked bigger than the left. But I dismissed their concern, assuming that what they noticed were just swollen glands from a cold. I had no other symptoms, and I felt good. My annual blood work showed thyroid hormone levels in the normal range, there was no family history of the disease, and I ate healthy foods, exercised, and didn’t drink or smoke. When I looked in the mirror, I didn’t see any real difference, so I let it go-for almost a year.Finally, to ease my mom’s worry and to answer the questions that were beginning to rise in my own mind, I decided to see an endocrinologist. Again the blood work showed no cause for concern-my thyroid hormones appeared normal-but the doctor wanted to do a sonogram, and that’s when he saw three nodules on my thyroid.
Finding three lumps was still no cause for real alarm because up to 95 percent of thyroid growths are benign.1 The only way to get an accurate diagnosis was to have a biopsy by fine needle aspiration. After an outpatient procedure during which the doctor used a very narrow syringe to take cell samples from my three nodules, I had my answer: papillary thyroid carcinoma.
It took me a week to tell my parents and my daughter. I wanted to learn everything about thyroid cancer so that I could answer their questions. I was relieved to learn that my type (there are four types of thyroid cancer) has a high cure rate if detected early and can be easily treated with surgical removal and radioactive therapy.
Having done my research and informed my family, I began treatment: my thyroid gland and several lymph nodes were removed, leaving a pink scar on my throat. The temporary aftereffects of surgery included a sore throat, neck numbness, difficulty talking, and a change in my tone of voice. I have also undergone body scans and two radioiodine treatments.
After my diagnosis, I went from not knowing much about what a thyroid gland does, to being in awe of its importance, to worrying about how I would function without one.
And since that time, I’ve come to know quite a bit about this small but significant gland. I’ve learned that thyroid cancer is actually a growing trend, and women especially should be aware of symptoms and treatment options. Here’s what you need to know.
The Mighty Little Thyroid
Located just below the Adam’s apple and wrapped around the windpipe, the butterfly-shaped thyroid gland regulates the body’s metabolism, which controls virtually every cell, tissue, and organ in the body. The thyroid absorbs iodine from consumed food and uses it (through its follicle cells) to manufacture the thyroid protein thyroglobulin and two main hormones, thyroxine (T-4) and triiodothyronine (T-3), which control body temperature, heart rate, blood pressure, and weight.1 The thyroid gland (through its parafollicular, or C, cells) also produces calcitonin, a hormone that helps regulate calcium in the blood. Four or more tiny parathyroid glands on its surface make parathyroid hormone, which helps the body maintain a healthy calcium level.2
A Rising Star
New cases of thyroid cancer are increasing at a rapid rate-faster than any other type of malignancy, according to the National Cancer Institute (NCI), which estimates over 40,000 individuals will be diagnosed in the United States in 2019 with women three times more likely to be diagnosed than men.3
Why the increase? Some experts attribute the rise to various factors, from exposure to high levels of radiation from X-ray therapy in the mid-1900s to the aftereffects of nuclear contact.2 This means baby boomers are especially at risk. Richard Hellman, MD, FACP, FACE, president of the American Association of Clinical Endocrinologists, attributes the rise to a combination of better diagnostic capabilities, increased awareness, and atmospheric radiation: “Radiation, testing, and genetics are only a small part of the story, but those exposed need to be watched closely since most forms are slow growing.”
Although thyroid cancer is essentially symptomless, as in my case, if you see or feel any lumps in the neck area or experience prolonged hoarseness, don’t put off seeking an appointment with an endocrinologist or thyroidologist. Once you’ve seen the specialist, the process of diagnosis might involve a number of tests, including a thyroid ultrasound, blood tests, fine needle aspiration biopsy, nodule biopsy, a radioactive iodine uptake (RAI-U) nuclear scan, and magnetic resonance imaging (MRI).
An RAI-U nuclear scan is usually performed before any biopsy and involves taking a small amount of radioactive iodine to scan the body for “cold” spots. (Nodules that absorb less substance than the thyroid tissue around them are called cold nodules and may be cancerous.)2 Although routine thyroid blood tests (checking for abnormal levels of thyroid-stimulating hormone (TSH) in the blood) did not result in an abnormal reading for my type of thyroid cancer-papillary-in some cases blood work can indicate the possibility of another type of thyroid cancer: medullary. If the doctor suspects medullary cancer, additional blood work will check for high levels of calcitonin, which is unique to all the thyroid cancers that can occur.
How Many Thyroid Cancers Are There?
There are four types of thyroid cancers, and they arise from the two main types of thyroid cells-follicle and C cells. Papillary and follicular thyroid cancers are the most common types and have a high cure rate (97 percent) with proper treatment, which generally includes thyroidectomy and radioactive iodine therapy. Medullary and anaplastic thyroid cancers have a poorer prognosis because, unlike the first two, they are faster growing and tend to be found only after they have spread beyond the thyroid to lymph nodes in the neck and other organs.4 According to the NCI, of the thyroid cancers diagnosed in the United States, 80 percent are papillary, 15 percent are follicular, 3 percent are medullary, and 2 percent are anaplastic.2
Treatment for Thyroid Cancer
The choice of treatment depends on the type of thyroid cancer, the size of the nodule, the patient’s age, and whether the cancer has spread. Thyroid cancer may be treated with surgery, thyroid hormone treatment, radioactive iodine therapy, external radiation therapy, or chemotherapy. Most patients receive a combination of treatments.
For all four types of thyroid cancer, treatment usually starts with a thyroidectomy-the surgical removal of all or part of the thyroid. Nearby lymph nodes and tissue may also be removed if cancer has invaded neck tissue. Some papillary and follicular cancers that are well contained may require only a lobectomy (partial removal of the thyroid), which usually involves removing one of the lobes and the isthmus.
The two most common thyroid cancers also involve follow-up with radioactive iodine, known as I-131 treatment. Thyroid cancer is the only cancer that is remedied in this way because thyroid cells are the only cells in the body that make thyroid hormone by absorbing iodine. Patients are treated with radioactive iodine to kill any remaining thyroid cells after surgery. Even people who are allergic to iodine can take I-131 therapy safely. The therapy is given as a liquid or capsule that zaps thyroid cancer cells throughout the body as it is carried through the bloodstream.5
Medullary and anaplastic cancer cells, however, do not respond to I-131 therapy. External radiation therapy or chemotherapy, or a combination of the two, is the standard treatment for these cancers following surgery. Both of these rare thyroid cancers are unique in their own way.
Medullary tumors, which originate from the parafollicular cells (C cells) that make calcitonin, have a lower cure rate than the two more common thyroid cancers. The 10-year survival rate for medullary thyroid cancer is 90 percent when confined to the thyroid gland, 70 percent with spread to cervical lymph nodes, and 20 percent if spread to distant sites.6 In addition to the usual thyroid cancer follow-ups, patients diagnosed with medullary tumors generally undergo chest X-rays and have the serum calcitonin levels in their blood checked.
Anaplastic thyroid cancer also originates from C cells, and these tumors are generally the most difficult of all thyroid cancers to treat. Typically occurring in older adults (65 and older), anaplastic thyroid cancer is often characterized by a neck mass that is diffused, very hard, and fast growing. This type of cancer requires a tracheostomy (surgically created opening in the neck leading directly to the trachea, or breathing tube) at least 25 percent of the time and has often spread to the lung at the time of diagnosis.5 Battling this cancer requires a very aggressive treatment plan that generally includes external beam radiation, chemotherapy, and more-invasive surgeries.
Since my own thyroid cancer journey began in 2004, I’ve had three body scans and two radioiodine treatments. Although the worst is over, it’s never really over. I will take Synthroid® (levothyroxine sodium) for the rest of my life. This medication supplies the missing thyroid hormones while suppressing the pituitary’s production of TSH, which could possibly stimulate any remaining cancer cells to grow.2 Blood will be drawn every six months to check my thyroid hormone levels, I-131 uptake scans and sonograms will be annual events for years, and more radioactive iodine treatments may be necessary.
In addition to my medical follow-up, and along with the new expertise I’ve acquired in the area of thyroid cancer, I’ve gained something else. I now have a new label to add to those of mom, career woman, writer, partner, and daughter: I’m a cancer survivor. My hope is that my story-and these important facts-will make all women aware of the signs and the symptoms of this often-overlooked cancer.
What’s It Really Like to Be Radioactive?
When one of the last people you will see for days is dressed in a spacesuit-a “Caution Radiation” sticker on his back-and has a Geiger counter hanging from his belt, you know this is not going to be an ordinary experience. Though I had been relatively upbeat since my thyroid cancer diagnosis-throughout testing and treatment that had included sonogram, biopsy, malignancy diagnosis, surgery, and now an increasing feeling of weakness and disorientation from an ever-slowing metabolism as I prepared for radioiodine therapy-the reality of my situation really hit me when that heavy hospital door shut with a deep thud and my days of isolation began. I was alone and scared, with radioactive iodine running through my veins.
When I was settled in the hospital room that would be my cloister for three full days, Mr. “Caution Radiation” handed me a cocktail of radioactive iodine to chug-the same stuff that circled the globe after the Chernobyl meltdown in 1986. I heard clicking noises from the Geiger counter–like machine called a Keithley meter as the radiation safety officer measured my room’s radioactivity while inching closer to the door. He stuck tape to the floor and labeled it with the various levels to warn the nurses. Then it hit me: I’m radioactive!
The instructions were simple: flush out the radioactive iodine by drinking lots of liquids. The more I drank, the quicker I could leave. At first I was looking forward to just lounging and getting away from stoves, computers, career, and parenting. That lasted about four hours. Then I began to feel bloated and nauseated, but there was no pain and I actually didn’t glow in the dark. Somehow I kept down enough liquids over the next three days to be released from the hospital. As proof of the level of radioactivity I experienced, everything I had in that room-underwear, socks, magazines, lotions-had to be destroyed. I was that “hot.”
Even though my “rays” were acceptable to be out and about, I couldn’t kiss or hug anyone, and I had to stay away from children and pregnant women for at least 10 days. It was especially hard to not touch my cat, Lily, who loves to cuddle. I experienced dry mouth and some hoarseness, but this was for only a few days. There were other precautions: wash my clothing separately, sleep alone, use only disposable dishes and utensils, and flush several times after each bathroom visit. I was also instructed that when traveling, proof of radioactive treatment is needed to show screeners at public areas like airports and subways.
A rare side effect in men who receive a high dose of I-131 is loss of fertility. In women I-131 is not known to cause fertility loss, but some doctors advise women to avoid pregnancy for one year after a high dose of I-131.4
Thyroid Cancer Risk Factors
- Age?Papillary and follicular thyroid cancers can develop at any age but are more common in young adulthood. Sporadic medullary thyroid cancer usually occurs in adults. Multiple endocrine neoplasia (MEN) type 2 syndromes and familial medullary cancer also occur in adults but can affect children and infants as well.
- Race?White Americans have a greater risk of developing thyroid cancer than Black Americans.
- Radiation?People exposed to high levels of radiation are much more likely than others to develop papillary or follicular thyroid cancer. One significant source of radiation exposure can be treatment with X-rays. Between the 1920s and the 1950s, doctors used high-dose X-rays to treat children who had acne, enlarged tonsils, and other problems affecting the head and the neck. Scientists later discovered that some people who had received this kind of treatment developed thyroid cancer.
- Family history of medullary thyroid cancer?Medullary thyroid cancer sometimes runs in families. A change in a gene called RET can be passed from parent to child. Nearly everyone with the changed RET gene develops medullary thyroid cancer. The disease occurs alone as familial medullary thyroid cancer or with other cancers as MEN syndrome. A blood test can detect the changed RET gene. If it’s found in a person with medullary thyroid cancer, the doctor may suggest that family members be tested. For those who have the changed gene, the doctor may recommend frequent lab tests or surgery to remove the thyroid before cancer develops.
- Personal history?People with a goiter or benign thyroid nodules have an increased risk of thyroid cancer.
- Being female?In the United States, women are almost three times more likely than men to develop thyroid cancer.
- Inherited conditions?Papillary thyroid cancer risk increases with Gardner’s syndrome or familial adenomatous polyposis-genetic disorders where precancerous polyps develop throughout the colon and the upper intestine. Having Cowden disease, a rare, inherited disorder that causes lesions on the face, hands, and feet and inside the mouth, can also increase the risk of developing thyroid cancer.
- Iodine?Scientists are currently studying the possible risk factors that iodine might present (whether too little iodine in the diet might increase the risk of follicular thyroid cancer and whether too much may increase the risk of papillary thyroid cancer).2
Although it’s not possible to prevent thyroid cancer, the following measures may reduce or eliminate your risk.
- Preventive surgery?If you’ve inherited a defective RET gene, you may choose to have your thyroid gland surgically removed, even though the gland appears to be healthy. This preemptive approach eliminates the risk of medullary thyroid cancer but doesn’t reduce the likelihood of adrenal or parathyroid tumors in people with MEN type 2 syndromes.
- Potassium iodide tablets?Current government guidelines recommend that people within 10 miles of nuclear power plants be provided with potassium iodide tablets. Taken just before or immediately after exposure to nuclear fallout, potassium iodide protects the thyroid gland from I-131, though not from other radioactive material. Potassium iodide is safe and effective for even very young children when taken in the proper dosage; however, you shouldn’t take potassium iodide if you have multinodular goiter, Graves’ disease, or autoimmune thyroiditis.
- A healthy diet?The American Cancer Society recommends eating at least five servings of fruits and vegetables every day. They contain antioxidants, which protect cells from damage that occurs as a result of normal metabolism. It’s been found that emphasizing unsaturated fats (omega-3 fatty acids) may also help protect against cancer, including cancer of the thyroid.4
Information about how to relieve the side effects of treatment for thyroid cancer and support for those facing a diagnosis are available at www.cancer.gov/cancertopics/coping or by calling the NCI’s information specialists at (800) 4-CANCER [800-422-6237].
- What You Need to Know About Thyroid Cancer. National Cancer Institute Web site. Available at: http://www.cancer.gov/cancertopics/wyntk/thyroid.
- Thyroid Cancer. National Cancer Institute Web site. Available at: http://www.cancer.gov/cancertopics/types/thyroid.
- Tools for Healthier Lives. Thyroid Cancer. Mayo Clinic Web site. Available at: http://www.mayoclinic.com/health/thyroid-cancer/DS00492/CSECTION=4.
- Treatment of Thyroid Cancer by Stage. American Cancer Society Web site. Available at: http://www.cancer.org/docroot/CRI/content/CRI_2_4_4X_Treatment_of_Thyroid_Cancer_by_Stage_43.asp?sitearea=
- Genetics of Medullary Thyroid Cancer (PDQ). National Cancer Institute Web site. Available at: http://www.cancer.gov/cancertopics/pdq/genetics/medullarythyroid/healthprofessional. Accessed September 30, 2008.