Your Thyroid Cancer Journey: From Diagnosis to Survivorship

What Is Thyroid Cancer?

Thyroid cancer is a type of cancer that begins in the thyroid gland, a butterfly-shaped gland located at the base of your neck. The thyroid gland is responsible for producing hormones that regulate your metabolism, heart rate, blood pressure and body temperature.

There are four main types of thyroid cancer:

• Papillary thyroid cancer: This is the most common type, accounting for about 80% of all cases. It tends to grow slowly and is highly treatable.
• Follicular thyroid cancer: This is the second most common, making up about 10% to 15% of cases. It's also very treatable, especially when caught early.
• Medullary thyroid cancer: This is a rare form that develops in the C cells of the thyroid. It can be associated with genetic syndromes.
• Anaplastic thyroid cancer: This is the most aggressive and rarest type of thyroid cancer. It's challenging to treat and often spreads quickly.

How is Thyroid Cancer Diagnosed?

Diagnosing thyroid cancer typically involves a series of steps to confirm the presence of cancer and determine its type and stage.

• Physical exam: Your doctor will feel your neck for any lumps or nodules on the thyroid gland.
• Ultrasound: This imaging test uses sound waves to create a detailed picture of your thyroid. It helps determine the size, shape and characteristics of any nodules.
• Fine-needle aspiration (FNA) biopsy: A small, thin needle is used to take a sample of cells from the thyroid nodule. These cells are then examined under a microscope by a pathologist to check for cancer.
• Blood tests: These tests measure the levels of thyroid hormones and other substances in your blood to check your thyroid function.
• Genetic testing: If your doctor suspects medullary thyroid cancer, they may recommend genetic testing to check for a mutation in the RET gene, which can be linked to this type of cancer.

How Is Thyroid Cancer Treated?

Thyroid cancer is often highly treatable, and the best course of action depends on the type, size and stage of the cancer, as well as your overall health.

• Surgery: This is the most common treatment for thyroid cancer. The two main types of surgery are:
• Lobectomy: Removal of only the lobe of the thyroid that contains the cancer.
• Thyroidectomy: Removal of the entire thyroid gland.
• Radioactive iodine (RAI) therapy: This treatment uses a pill or liquid containing radioactive iodine to destroy any remaining thyroid tissue or cancer cells after surgery. This is particularly effective for papillary and follicular thyroid cancer because these cells absorb iodine.
• Thyroid hormone therapy: After a thyroidectomy, you will need to take a synthetic thyroid hormone pill daily for the rest of your life to replace the hormones your thyroid gland used to produce. This also helps suppress the growth of any remaining cancer cells.
• External beam radiation therapy: This uses a machine to deliver high-energy radiation to the cancer cells. It's often used for advanced cases, such as anaplastic thyroid cancer.
• Chemotherapy and targeted therapy: These treatments are usually reserved for more advanced cases, such as anaplastic or medullary thyroid cancer that has not responded to other treatments.

What Does Life Look Like with Thyroid Cancer?

Living with thyroid cancer is a journey that extends beyond the initial treatment. It involves ongoing physical and emotional management, as well as a focus on long-term health. The goal is not just to be cancer-free, but to live a full and healthy life.

Side Effect Management With Thyroid Cancer Treatment

Even after successful treatment, you may experience short-term or long-term side effects. Being proactive about managing them can significantly improve your quality of life.

• Thyroid Hormone Replacement: This is a lifelong necessity after a thyroidectomy. Your doctor will carefully monitor your hormone levels with blood tests. It's crucial to take your medication as prescribed. Side effects from hormone imbalance, whether it is too much or too little, can include:
• High levels: Rapid heart rate, anxiety, weight loss or cramps.
• Low levels: Fatigue, weight gain, dry skin or thinning hair.

If you experience these, discuss them with your doctor so they can adjust your dosage.

• Radioactive iodine (RAI) therapy: This can cause temporary or, in some cases, permanent side effects.
• Dry mouth and taste changes: RAI can affect your salivary glands. Sucking on sour candies (like lemon drops) can help stimulate saliva production and provide some relief. Staying hydrated is also very important.
• Fatigue: It's common to feel tired for several weeks or even months after RAI therapy. Listen to your body and prioritize rest.

In an interview with Targeted Oncology®, a sister brand of CURE®, Dr. Noah S. Kalman, a radiation oncologist at Miami Cancer Institute at Baptist Health South Florida, discussed that quality-of-life management during and after thyroid cancer treatment may be challenging, especially because of RAI, which involves a temporary low-salt diet.

“That is probably the most difficult part about the treatment itself and having to follow that diet for a number of weeks,” Kalman said in the interview. “That’s what we get the most complaints about from patients, as it can be very disruptive.”

Surgery: After surgery, you may experience hoarseness or voice changes. This is usually temporary as the nerves near the thyroid gland heal, but for a small number of patients, it can be permanent. A voice therapist or speech pathologist can provide exercises to help. You may also feel a tightness or a pulling sensation around the incision, which can be managed with gentle massage and stretching exercises as advised by your healthcare team.

• Physical activity and diet: Maintaining a healthy lifestyle is a cornerstone of recovery. Regular, moderate exercise can help combat fatigue and improve your mood. A balanced diet can help your body heal and maintain a healthy weight, which is important for your overall well-being.

“If patients do have some issues with treatment, whether it’s dry mouth from the radioactive iodine, some patients can have occasionally some swallowing issues after their thyroid surgery, [but] there are some resources available,” Kalman said. “There are speech therapies, there are medications to help with dry mouth — there are things we can do to help manage some of these patients’ symptoms going forward.”

Emotional Well-Being With Thyroid Cancer

A cancer diagnosis can take a significant emotional toll, and these feelings can persist long after treatment. It's important to acknowledge and address them.

• Mixed emotions: It's normal to feel a mix of relief, fear and anxiety. You may feel pressure to "return to normal," but give yourself time to adjust to your "new normal."
• Anxiety and "scanxiety": Many patients experience anxiety, especially leading up to follow-up appointments and scans. This is often called "scanxiety." Talk to your healthcare team about these feelings. Knowing what to expect during your appointments and understanding your follow-up care plan can help reduce some of this stress.
• Connecting with others: You are not alone in this journey. Connecting with other thyroid cancer survivors through support groups or online forums can provide a sense of community and help you feel understood. Your hospital or a cancer support organization can often provide resources.
• Professional support: If you're struggling with persistent feelings of sadness, depression or anxiety, consider speaking with a therapist or a social worker. They can offer strategies and support to help you cope.

Thyroid Cancer Survivorship and Recurrence

Thyroid cancer generally has an excellent prognosis, and many patients are cured. However, it is essential to be aware of the concept of survivorship and the possibility of recurrence.

• What is survivorship? "Cancer survivorship" begins at the time of diagnosis and continues throughout the rest of your life. It involves managing the physical and psychological effects of cancer and its treatment, as well as focusing on long-term health and well-being. Your oncologist will provide a survivorship care plan, which outlines your treatment history, potential late effects to watch for, and a schedule for your future follow-up care.
• Recurrence: While rare, thyroid cancer can recur, sometimes many years after the initial treatment. This is why long-term follow-up is so important.
• Risk factors: The risk of recurrence depends on factors such as the type and stage of cancer at diagnosis, the size of the original tumor and whether it spread to nearby lymph nodes.
• Signs to watch for: Be vigilant for any new lumps in your neck, a lingering cough, difficulty swallowing or voice changes. Regular follow-up appointments, which may include physical exams, blood tests (for a protein called thyroglobulin) and ultrasounds are designed to detect any signs of recurrence early.
• Treatment for recurrence: If cancer does return, it is often found in the lymph nodes in the neck and can be effectively treated with a second surgery, and sometimes with radioactive iodine or other therapies.

Taking Control of Your Thyroid Cancer Journey

Thyroid cancer has a very high cure rate, especially for the most common types. By understanding your diagnosis and treatment options, you can actively participate in your care and make informed decisions with your medical team. Your journey is unique, and your healthcare providers are your partners in navigating this process. Don't hesitate to ask questions, seek second opinions, and advocate for your health.

This guide is designed to be a starting point. Your personal experience will be unique. By using this information as a foundation for your discussions, you can partner with your oncologist to make the best decisions for your health.

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References

CURE. "Managing Quality of Life After Iodine Treatment for Thyroid Cancer." CURE, Aug. 7, 2024. https://www.curetoday.com/view/managing-quality-of-life-after-iodine-treatment-for-thyroid-cancer