Joan's Story

As one of the first thyroid cancer patients treated with radioactive iodine, sixty-eight-year-old Joan offers a fascinating insight into the treatment of patients with thyroid cancer fifty years ago. Her story also underscores a very important lesson for current thyroid cancer patients.

In 1948, when I was sixteen years old, I became extremely tired. I was so tired, I couldn't ride my bicycle. I was living in South Jersey at the time, and, when the local doctors could not find out what was wrong with me, they told my mother to take me to Philadelphia. The doctors there put me in the hospital for three months solid without letting me go home. The hospital got to be my home! My family was afraid I was going to die.

I had thyroid cancer, but you couldn't see or feel it. It didn't show up in any blood work. [My thyroid gland] was almost completely removed during surgery.

In 1949, Joan's surgeon performed a thyroidectomy and bilateral radical neck dissections to remove as much of her thyroid gland and as many lymph nodes in her neck as possible. Today, patients rarely have radical neck dissections.

They probably cut more out than needed to be. After the surgery, the doctor told my mother that I would never talk again because half of my voice box was para­lyzed from the surgery. My mother responded, "But, Doctor, she was just talking to me!" I haven't had any trouble with my voice. The doctors also said that I would never be able to work. That's how they thought in those days. I worked for forty-five years-from the time I was seventeen until I retired a few years ago. For seventeen years, I worked two jobs a day!

I had [external-beam] radiation to my neck daily for a while. In 1957, I also drank some clear liquid like water that came from Oakridge; I called it an iodine cock­tail in the journal I kept. I remember that they said it was only good for twenty-four hours, so I had to get to the hospital right away when they got it from Tennessee.

Remember how in the movies they'd show a patient sitting in an amphitheater surrounded by doctors in white coats? Well, I was one of those patients. I was kind of a guinea pig then. They were still leaming about thyroid cancer and radioactive iodine. The machines they used to treat me had big dials. I remember being in a lab where they were experimenting on white mice. It was like science fiction compared to today.

They didn't put me on thyroid medication right away because they wanted to see what I did on my own with­out the stuff. At some point, they put me on natural animal thyroid, but my body rejected it, so they put me on [synthetic levothyroxine].

I would go to the thyroid clinic and see so many patients who looked horrible because they wouldn't take their medicine like they were told. You know, as a teenager, you're so weight-conscious. I weighed myself all the time, and, if I gained even a couple of pounds, I would lose it right away instead of letting it add up on me. I followed what the doctor ordered right to the letter.

Back then, they put me on a high dose of [levothyrox­ine]. They thought that would prevent the cancer from coming back. Eventually, they discovered I was developing osteoporosis as a result of taking so much thyroid medication. They put me on several medications; one was a prescription vitamin D. Now I take half of [the levothyroxine] I used to take. I continued to see an endocrinologist once or twice a year.

After her thyroidectomy in 1949, Joan continued to lead a very productive life despite mastectomies in 1986 and 1996 for breast cancer. In 1999, fifty years after the initial treatment of her thyroid cancer, a chest x-ray revealed a growth the size of a quarter in her lung.

I didn't worry about cancer. I had no idea it could return. I thought they got it all out and that was that. When I was sixteen, they told me that a piece of my thyroid fell in my lung. It didn't cause any trouble, so they left it alone. So one-and-a-half years ago, it decided to grow. I was really scared this time. Maybe it was because I was older and lived by myself.

I went to [a hospital], and [my surgeon] took out a fourth of a lobe in my lung; it was cancer. When tests showed that it was thyroid tissue, they were glad that it was [metastatic] thyroid cancer, not lung cancer and not from my breast cancer. I didn't have to have chemotherapy. I never, never had chemotherapy for any of my cancers.

After my lung operation, I had a thyroid scan-my first since 1957. Some thyroid tissue showed up in my neck, so I drank radioactive iodine, and that got rid of it. Back then in 1957, they used to take you off thy­roid [medication before performing a thyroid scan] and didn't give you anything to help you through it. It was awful; I got so tired. I kept working, but I couldn't even remember how to get home one day. That didn't happen this time. They gave me something to get through this period. Technology is so much better these days.

Joan received 200 millicuries of radioactive iodine in December of 1999. Sixteen months later, her thyroglobulin was elevated to 16.7 ng/ml while taking enough levothyroxine to suppress her TSH. Elevated thyroglobulin in patients with a suppressed TSH suggests the presence of residual thyroid tissue or recurrent thyroid cancer. Joan's repeat with­drawal scan in May of 2001 was negative, but her thyroglobulin was elevated to 126 ng/ml off of levothyroxine, very suggestive of either residual or recurrent cancer. In November of 2001, her thyroglobulin remained elevated at 15.7 ng/ml while her TSH was suppressed on levothyroxine. She is awaiting a repeat withdrawal scan, a PET scan, and, possibly, another radioactive iodine treatment.

Treating patients with an elevated thyroglobulin and a negative scan presents a challenge-there is no consensus among physicians concerning the best treatment for patients like Joan.

I never knew all this would happen. I just took one day at a time. I just lived. My advice to other thyroid cancer patients is to do exactly what the doctor tells you. Follow his instructions, take your medicine, and keep your appointments.

Joan's story highlights the fact that thyroid cancer generally grows very slowly. Most importantly, her story makes it clear that long-term follow-up of patients with thyroid cancer is necessary. Recurrences can occur long after apparently successful initial treatment, although the overwhelming majority of patients with thyroid cancer do well and are usually cured.