Q&A: Anaplastic thyroid cancer

If you or a loved one has been diagnosed with anaplastic thyroid cancer, it may be hard to find others who’ve received the same diagnosis. That’s because anaplastic thyroid cancer is only diagnosed in about 500 to 800 patients in the United States each year -- most age 60 or older.

And, because anaplastic thyroid cancer is extremely rare, there’s limited reliable information on this disease.

To help, we spoke with Maria E. Cabanillas, M.D. Below, she explains the basics of anaplastic thyroid cancer diagnosis and discusses the latest treatment advances.

How is anaplastic thyroid cancer diagnosed?

Anaplastic thyroid cancer is typically diagnosed by removing and examining a small sample of a patient’s tissue, known as a biopsy. But because biopsied cells can appear in a variety of shapes and forms, diagnosis can be difficult and often inaccurate.

The pathology report may not always use the words “anaplastic thyroid cancer.” If you see another term, such as “undifferentiated,” “dedifferentiated,” “sarcoma of the thyroid,” “sarcomatoid,” “squamous,” “spindle cell” or “giant cell” on the report, you may want to seek a second opinion from an thyroid cancer expert before starting treatment.

How is anaplastic thyroid cancer typically treated?

When the tumor is isolated to the thyroid gland, we find the most success with surgery. But anaplastic thyroid cancer spreads quickly, and surgery is often not an option. In these cases, the treatment is usually radiation to the neck. It can be administered with chemotherapy to make it more effective. In patients who’ve had surgery, radiation is used to prevent the cancer from returning. In those who haven’t had surgery, radiation is used to shrink the tumor and/or prevent it from growing.

Anaplastic thyroid cancer can lead to hoarseness, shortness of breath and choking-like symptoms since the tumor can start to overwhelm the closing of the trachea, called asphyxia. If breathing becomes difficult, we may conduct a tracheostomy (also called tracheotomy). This is where we create an opening through the neck into the trachea to insert a breathing tube below the tumor, but we try to avoid this when possible since it diminishes quality of life and may delay treatment.

When anaplastic thyroid cancer has spread outside of the neck, treatment is more challenging. The doctor and patient must balance the immediate need to prevent the cancer from causing asphyxia and the need to treat the cancer’s spread. This life-threatening dilemma requires an individualized plan developed by an expert in treating anaplastic thyroid cancer, along with the patient and his or her family.

What causes anaplastic thyroid cancer?

Some genetic mutations in the tumor can cause cells to grow out of control, leading to cancer. Anaplastic thyroid cancer patients commonly have the BRAF, RAS, p53 and PI3K mutations.

This is why genetic testing of the tumor is important. It tells us if your tumor has a targetable mutation (particularly BRAF), meaning there’s a drug designed to target the particular gene mutation that’s fueling the tumor’s growth. This is known as precision medicine. Knowing if you have a gene mutation early will also help us determine if there’s a clinical trial for you.

What research for anaplastic thyroid cancer is currently underway?

At MD Anderson, we’re constantly working to advance anaplastic thyroid cancer care through clinical trials. In fact, we’re getting ready to open a clinical trial that will explore precision medicine for anaplastic thyroid cancer treatment. Enrolled patients will all receive immunotherapy plus a targeted therapy based on the patient’s tumor mutation.

What’s your advice for someone recently diagnosed with anaplastic thyroid cancer?

I have three main pieces of advice. One, speed is critical when it comes to anaplastic thyroid cancer treatment. Be a firm advocate for speed during your diagnosis so that all options can be examined and the best treatment decisions can made before it’s too late.

Second, see an anaplastic thyroid cancer expert. Ask how many anaplastic thyroid cancer cases your doctor has treated. If it’s fewer than 20 cases, seek a second opinion from an expert in treating anaplastic thyroid cancer.

Third, ask your doctor about clinical trials. Not only can you help future patients by advancing our understanding of a rare disease, but your clinical trial participation may save your own life. That’s because clinical trials give you access to investigational drugs, which may be better than the standard of care drugs.

Request an appointment at MD Anderson online or by calling 1-877-632-6789.