Chapter 2: Rhonda's Story

Rhonda is no stranger to thyroid disease. She first learned about thyroid disease when she was a teenager. Her mother had Hashimoto's thyroiditis and developed a large goiter, which was surgi­cally removed. Years later, when Rhonda gave birth to a daughter, routine neo­natal tests indicated that her daughter did not have enough thyroid hormone. Further investigation revealed that her daughter had congenital hypothyroidism and a lingual thyroid, thyroid tissue located at the back of the tongue.

We saw a pediatric endocrinologist who started my daughter on thyroid pills when she was three weeks old. At first, I had to crush the pills, put it in apple­sauce, and shove it down her. When she was eighteen months old, she started chewing the pills herself. She was tested constantly. Her lingual thyroid shrank a little, and it put out some [thyroid hormone]. Fortunately, her lingual thyroid did not cause her to develop a speech impediment. I'm real proud of her; she's nineteen years old now and graduated with honors.

Rhonda's past experience dealing with her family's thyroid disease prepared her for what lay ahead. In October of 1988, she noticed a lump on her neck and made an appointment with an endocrinologist.

He more or less dismissed the knot, saying that it was probably just my Adam's apple. But he did do some tests-an iodine uptake and an imaging scan. Then he suggested that I take levothyroxine to shrink the nodule.

I was not pleased with this doctor so I went to [another endocrinologist]. He did a needle biopsy and told me that there was a remote possibility the knot was cancerous, so I was prepared and not upset. I didn't think for one minute that my life was threatened. I had such trust in him.

Rhonda's new endocrinologist examined her and reviewed her old and new studies. He told her that she had thyroid hemiagenesis, Hashimoto's thyroiditis, and thyroid cancer. In February 1989, a surgeon removed her only thyroid lobe and the malignant thyroid nodule.

I was in the hospital four or five days. The worst part was the drainage tube they left in my neck, but I wasn't in any real pain. I had had three C-sections, and this was nothing! I was not hoarse and didn't need calcium, but they checked it frequently.

About six to eight weeks after the surgery, I returned to the hospital for my first radioactive iodine treatment. The whole experience was weird, just weird. The people at the hospital that came into my room had on this strange get-up like a space suit. They unscrewed the cap on this thick cement thing, stuck a straw in it, and said drink it. Then they ran a Geiger counter over me. No one could come to see me. No one came into my room. They put my food on paper plates and left it at the door.

So I just talked on the phone and rested. It was sort of like a mini-vacation. I drank lots of water and ate sour candy to stimulate my salivary glands. The glands did get clogged up on one side, and they had to flush them out several weeks after the treatment. But I didn't have any more problems with them after that. After about a day-and-a-half in the hospital, they let me go home.

I had three children under the age of eight. I called their pediatrician, and he said to stay several feet away from them and not to kiss them for about ten days. I also wore a surgical mask so that I wouldn't sneeze or accidentally spit on them.

By the time I went in for the first radioactive iodine treatment, I was really tired. I couldn't take any thyroid medication until after the treatment. I started taking [levothyroxine], but it took at least six weeks for it to build up. So I was tired for twelve weeks!

Rhonda had a whole body scan nine months later to see if there was any residual thyroid tissue or cancer. In order to prepare for the scan, she had to stop taking all thyroid hormones two weeks before the scan was scheduled. When this scan showed residual tissue, Rhonda checked into the hospital for another radioactive iodine treatment.

This was the first time I got a little worried because someone said that this treatment had to do it-they couldn't give me any more [radioactive iodine]. It wasn't so weird this time in the hospital. I knew what to expect. I took lemon drops with me and sucked on them and drank water all the time. I was really bored. I even went into the bathroom, turned out all the lights, and looked to see if I glowed. I was really dis­appointed that I didn't! When I went home, I stayed away from the kids again, but I wasn't as freaked out about it.

Being off the [levothyroxine] pills was awful! I was so tired. I wasn't employed, but I was an active school volunteer. I decided to keep going instead of lying around the house feeling sorry for myself.

Rhonda's determination to stay active was rewarded when she won the Volunteer of the Year Award at the school her children attended. Her whole body scan the following year was clear (negative).

I finally got back to my oId self. It's been twelve years, and I don't think about it any more. I never really thought of myself as a cancer survivor. I'm not worried about myself because I trust my doctor completely.

Rhonda returns to her endocrinologist annually and takes her levothyroxine as prescribed. Despite having congenital, autoimmune, and malignant thyroid disease, she continues to do well.