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In her own words: living with thyroid cancer

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Cherry lives in Bethesda, Maryland, where she works as a writer and editor. She is a thyroid cancer survivor and now serves as a support volunteer, Board Member, and Corresponding Secretary for ThyCa: Thyroid Cancer Survivors’ Association. Inc.

What was your first sign that something was wrong? What symptoms did you experience?

In April 1999, I brushed my hand along my neck and noticed a bulge on one side. I did not feel any pain or other symptoms. At first, I did not realize that the lump was in my thyroid gland. However, I started reading medical articles about thyroid issues, although cancer was not at all on my mind.

What was the diagnosis experience like?

From the time I found the big lump, the whole diagnostic process took two and a half months. It was often confusing, as I knew little about the thyroid.

First, after examining the neck nodule, my primary physician referred me to one of her colleagues who was more knowledgeable about thyroid issues. The other physician probed deeply into my neck, which was not painful, and found two additional smaller nodules in my thyroid gland. This was followed by a neck scan at a nearby hospital, which indicated no problem.

Just to be sure, I made an appointment with an endocrinologist who specializes in thyroid disorders. He told me that most people with thyroid nodules have normal thyroid function; that most nodules are benign, not cancer; and that the key test needed to determine whether or not there was thyroid cancer was a fine needle aspiration (FNA). This is the use of very fine needle/syringe to take samples of cells from the nodules. This procedure felt somewhat like having a few lengthy injections. The FNA results were “suspicious” for thyroid cancer—not benign, but not a definite thyroid cancer either.

My endocrinologist recommended surgery and referred me to three experienced thyroid surgeons. I met with two of the surgeons. Both recommended removal of my entire thyroid gland (thyroidectomy). The surgery lasted 3 to 4 hours. The sections of thyroid tissue taken at the time of the surgery looked benign to the physician. So I left the hospital feeling relieved that I had no cancer.

However, a few days later the final pathology analysis revealed that one of the smaller nodules was papillary thyroid cancer, the most common type and a type with a high long-term survival rate. Fortunately it was found at an early stage. So my endocrinologist met with my husband and me to discuss the next phase of treatment.

What was your initial and then longer-term reaction to the diagnosis?

My initial reactions were fear and worry. It was scary to hear that I needed surgery for cancer. My father had died of cancer when he was 43. I had never had surgery and didn’t know what to expect. I also felt confused and alone in learning about thyroid cancer. I had known many friends and relatives with other cancer, but nobody with thyroid cancer. I wondered what to say to my family and friends. I also worried about how much time I might have to take off work and other activities and whether I would be able to continue working. All the medical appointments, tests, and treatments seemed overwhelming at first, taking lots of time.

Overall, I feel mostly positive emotions. I am glad that I am receiving care from a wonderful thyroid cancer specialist who has educated me well. At first, it was hard to adjust to taking a thyroid replacement pill every day and to the fact that I will need lifetime monitoring, because thyroid cancer can recur even decades after the initial diagnosis. But I mainly feel tremendous relief that my thyroid cancer was found at an early stage and was highly treatable. I have had two clean follow-up scans, plus blood tests also showing that I have no disease. So it is very unlikely that I will die of my thyroid cancer.

I also feel immense gratitude for the wonderful support I have received from my family, my friends, and the many other thyroid cancer survivors whom I have met through ThyCa: Thyroid Cancer Survivors’ Association, Inc.

How is thyroid cancer treated?

Treatment and follow-up testing and monitoring are individualized to the patient and depend on the type of thyroid cancer, the tumor size and other characteristics, and patient factors such as age at the time of diagnosis.

For my particular papillary thyroid cancer, the three treatments included (1) surgery to remove the thyroid gland; (2) a dose of radioactive iodine (I-131) about 2 months later to destroy the remaining thyroid tissue left after the surgery; and (3) a daily thyroid hormone replacement pill at a dose high enough to suppress my blood level of TSH (thyroid stimulating hormone) to the range that is “normal” for someone who has a thyroid gland.

My follow-up testing and monitoring will be lifelong. That way, any recurrence (unlikely in my case) can be treated promptly. For me, this includes (1) periodic blood tests; (2) periodic whole-body scans using a small tracer dose of radioactive iodine; and (3) periodic neck ultrasounds/sonograms. There are other tests that are used for other situations and types of thyroid cancer.

Did you have to make any lifestyle or dietary changes in response to thyroid cancer?

For a temporary period before my radioactive iodine treatment and follow-up scan a year later, I followed a low-iodine diet, using guidelines from my endocrinologist and the cookbook developed by my friends in ThyCa. Right before and for quite a while after the treatment, and until my medication dose reached the appropriate level after some dose adjustments, I felt extreme fatigue. I had to cut back on activities and sleep much more than usual during these months.

For a few days after the radioiodine treatment, I had to use isolation precautions to avoid exposing others to the radioiodine.

Also, I have to remember to take a daily thyroid hormone pill. There are details to remember about storing and taking the pill, such as storing it at room temperature and keeping it away from heat and humidity when I am traveling.

In addition, although other people I’ve met haven’t had this effect, I’ve found that I continue to need more sleep than before and that it makes a difference in my energy level if I have even a short nap. So I try to have a consistent sleeping pattern.

Overall, I now pay more attention to my nutrition and exercise (walking) than I did before. These aren’t part of my thyroid cancer treatment, but I think they have improved my overall health.

Did you seek any type of emotional support?

Yes. Right after my surgery, a friend who had another kind of cancer told me about ThyCa: Thyroid Cancer Survivors’ Association, Inc. ( www.thyca.org ). I immediately joined a local group and an e-mail support group. It was wonderful being in the same room with others who were living with thyroid cancer, and to hear their experiences. People listened to everyone’s experiences, questions, and concerns. Sometimes there were tears; sometimes we laughed. Everyone is warmly welcomed.

In the years since, many other survivors have continued to give me encouragement, information, suggestions for coping, and understanding. I keep learning more about the disease.

A few months after my treatment I became a volunteer for ThyCa as well, and greatly enjoy being in communication with volunteers from all around the U.S. and correspondents from around the world. I’ve also attended the last three Thyroid Cancer Survivors’ Conferences, sponsored by ThyCa and held each Fall. These have been fantastic learning and sharing experiences, with presentations by leading thyroid cancer experts and round tables and sharing with other thyroid cancer survivors. I’ve met people with every type of thyroid cancer, in all age groups from children through seniors.

Does thyroid cancer have any impact on your family?

Yes, I believe so. We shared in the initial worries. We’ve learned together about this disease. The biggest impacts were for my husband and me. After my surgery and during the times that I was extremely tired, he did extra chores and driving. My extended family, including my mother and my in-laws, also felt the worry and then the relief when they saw how well I was doing. My health became a major focus of the family for a long time. Now it is part of my life, but not my whole life, and is no longer the main focus of my family, I’m glad to say.

What advice would you give to anyone living with thyroid cancer?

Learn all you can about your type of thyroid cancer and its management, be in communication with others with thyroid cancer, and take advantage of the free support and education from ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org).

As told to Diane Voyatzis, RD

Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.

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