Raising Awareness of Medullary Thyroid Carcinoma

Because so few doctors correctly diagnose and treat it, many patients undergo unnecessary surgery, systemic chemotherapy, and radiation therapy.

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Because medullary thyroid carcinoma is so rare, many physicians are not familiar with this sometimes-fatal subtype and misdiagnose it or lump it together with more curable types of thyroid cancer.

Bill McClain

I’m used to having bumps and cysts pop up on my body, so when I felt a lump on the front of my throat, just below my Adam’s apple, I brushed it off. But when it was still there 6 months later, I became concerned and decided to see an ear, nose, and throat specialist.

He performed a fine-needle aspiration biopsy on the thyroid nodule, which caused it to deflate; he said that most nodules are benign and that he was certain mine was, too. His words were reassuring, and after an analysis of the biopsied cells failed to determine whether they were benign or malignant, he did not offer—as he should have—to repeat the procedure or surgically remove the nodule for tissue analysis, simply saying come back if the nodule returned.

Misunderstanding Its Seriousness

When it did grow back 6 months later, I still wasn’t worried that it could be cancer. There is no history of cancer in my family, and it just didn’t occur to me that I could have a serious disease, much less a rare, incurable one. I had a partial thyroidectomy, and when the pathology analysis showed that the tumor was medullary thyroid carcinoma, my surgeon performed a total thyroidectomy. Here is where my story takes an almost deadly turn.

Because medullary thyroid carcinoma is so rare—it makes up just between 1% and 2% of all thyroid cancers1—many physicians are not familiar with this sometimes-fatal subtype and misdiagnose it or lump it together with more curable types of thyroid cancer. When I was diagnosed in 2008, my doctor said I was lucky because “I got the good cancer,” confusing medullary thyroid carcinoma with the two more common thyroid cancers, papillary and follicular; it could be treated with radioactive iodine, my doctor continued, and I would probably be cured.

Curious to learn more about my “good” cancer—of course, there is no “good” cancer—I went online and started doing some research on medullary thyroid carcinoma. I learned that it could not be treated with radioactive iodine and that there was a good chance that my cancer had already spread throughout my body. I found a specialist in medullary thyroid carcinoma, who performed a modified radical neck dissection and removed 35 lymph nodes, 10 of which tested positive for cancer.

I am now on levothyroxine sodium tablets (Synthroid) and have my blood checked every 6 months for elevated levels of the biochemical markers calcitonin and carcinoembryonic antigen. So far, my cancer has remained stable.

Treatment Advances

Medullary thyroid carcinoma is an especially insidious disease because so few doctors correctly diagnose and treat it. The result is many patients undergo unnecessary surgeries and useless rounds of systemic chemotherapy and radiation therapy, neither of which is believed to be an important treatment option for people with medullary thyroid carcinoma.

However, advances are being made in this disease. Since my diagnosis, two tyrosine kinase inhibitors, cabozantinib (Cometriq) and vandetanib (Caprelsa), which stall tumor progression and even shrink tumors in some patients, have been approved by the U.S. Food and Drug Administration for medullary thyroid carcinoma. And in 2015, the American Thyroid Association revised its guidelines for the diagnosis and management of medullary thyroid carcinoma,1 so, hopefully, more patients will be correctly diagnosed and treated early in the course of their disease and have a better shot at a longer and better quality of life.

Living the New Normal

Having this diagnosis has changed my life in profound ways. Perhaps most disturbingly is the effect having cancer has had on my friends and some family members, who are so frightened by the thought of cancer it has caused an estrangement. It has also altered my career trajectory. Trained in strategic planning, until my cancer diagnosis, I was programmed to set long-term priorities and focused my energy on achieving future goals. Now, I’ve shortened those horizons to what I can successfully accomplish today.

I have become a patient advocate and am active in online patient support groups to help newly diagnosed patients with medullary thyroid carcinoma find the resources they need for the best care and to provide reassurance that they, too, can live a long time, perhaps even decades, with this cancer.

Every day I ask myself, did I enjoy the day, was it fulfilling, and did I do my best work? If the answers are yes, I’ve accomplished what I needed to do, and I feel satisfied. Although my life is different now, I’m in a good place. ■


1. American Thyroid Association: Revised American Thyroid Association Guidelines for the Management of Medullary Thyroid Carcinoma. Available at Accessed March 29, 2016.

Bill McClain, coauthor of After the Diagnosis: Medullary Thyroid Cancer Memoirs (Outskirts Press, September 2015), lives in Milford, Connecticut.