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Joan Shey has been a thyroid cancer survivor for 17 years. In 1997, while in recovery from her thyroid surgery and radiation treatments, Joan created the Light of Life Foundation for thyroid cancer patients to create a support and education network that was not available at the time of her diagnosis. She asked the doctors who saved her life to join her mission. Together, they began distributing gift baskets to patients in isolation, organized support groups, held informational seminars, and sold merchandise to fuel awareness and raise funds for thyroid cancer research. Under Joan’s direction, the foundation, an independent 501(c)(3), has grown into a national and international network of patients and physicians who are bringing attention to the importance of this disease.
In addition, Joan supports a fellowship program in thyroid cancer at Memorial Sloan-Kettering Cancer Center and now has added the University of Pennsylvania Medical Center to the funding program. She also created a Light of Life Facebook support group.
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Interview With a Thyroid Cancer Survivor: Joan Shey
Chances are, you don’t give too much thought to your thyroid on a daily basis. Joan Shey didn’t, either, until she was diagnosed with thyroid cancer. She survived the cancer, and then started the Light of Life Foundation to educate people about thyroid cancer. Learn more about your thyroid and how it affects your health.
What is the thyroid gland and what does it do?
Your thyroid (THY-roid) is a small gland found at the base of your neck, just below your Adam's apple. The thyroid produces two main hormones called T3 and T4. These hormones travel in your blood to all parts of your body. The thyroid hormones control the rate of many activities in your body. These include how fast you burn calories and how fast your heart beats. All of these activities together are known as your body's metabolism. A thyroid that is working right will produce the right amounts of hormones needed to keep your body’s metabolism working at a rate that is not too fast or too slow.
How is thyroid cancer diagnosed?
Thyroid cancer is often discovered by patients themselves. You may see or feel a lump or nodule on the front of your neck, or your doctor may notice a nodule during a regular exam.
The most common finding is a painless mass in the lower anterior neck near the thyroid gland. In most cases, the thyroid function is normal when measured by blood tests.
Usually thyroid cancer is suspected because a nodule or mass is detected in the front of the neck. In most cases, a needle biopsy of the nodule is needed to get cells for careful evaluation under a microscope. In most cases, looking at the cells under a microscope can show if a nodule is benign (not cancer) or malignant (cancer).
While thyroid blood tests are usually done to look at the function of the thyroid, and a thyroid ultrasound is often done to look at the structure of the thyroid gland, neither of these tests can say if a thyroid nodule is benign or malignant.
When did you first discover you had thyroid cancer?
I visited my doctor for an unrelated problem. When he examined my neck, he felt a nodule. I then went for further testing and was told I had a “cold nodule.” A nodule that is cold does not make thyroid hormone. After a time, a fine-needle aspiration biopsy showed that the nodule was thyroid cancer. Cold nodules are not always cancerous, though.
How did your life change with that diagnosis?
It was a very difficult time in my life. I felt scared and depressed. I had to go through extensive treatment for many years. I was a wife and a mother of two children. This added an extra challenge to dealing with my cancer and the treatments.
What was your treatment like?
First, I had surgery to remove the thyroid and the cancer in my neck. Soon after, I was treated with radioactive-iodine [I-131]. During that period, I was taken off my hormone replacement and went on a low-iodine diet before a scanning to see if the cancer had spread to other areas in my body. After the scanning, I was then treated with I-131 and had to spend four days in isolation at the hospital. That treatment made me radioactive and I could not be near my family for those days. It was a difficult process and time for me.
What advice do you have for women who are diagnosed with thyroid cancer?
My advice for others who may be diagnosed with thyroid cancer is to be sure you are treated by a doctor who fully understands how to treat thyroid cancer. It’s important to ask questions if you don’t understand something. Also, don’t be afraid to get a second opinion from another doctor.
Tell us about the low-iodine cookbook you’ve created. Why is it needed?
At the time of my first treatment, I was told I had to go on a low-iodine diet. This meant I could not have any salt in my food in order to have a successful response to my I-131. The reasoning behind this is that without salt in your body, the thyroid cancer cells will absorb the radioactive iodine and kill off the remaining thyroid cancer cells left in your body.
I found the low-iodine diet very difficult to follow because I wasn’t clear on what I could eat. I was given a list of foods to avoid but I decided it would be far easier to have a list of foods I could eat. So, soon after I started the Light of Life Foundation, I worked with another patient, Adele, to create a low-iodine cookbook to help other patients who needed a low-iodine diet before their treatment. I thought putting together recipes would be a big help to them. I know how hard it is to come up with good-tasting foods while on a restrictive diet. Most of these recipes were designed to give flavor, good nutrition, and new ideas of how patients can eat well. Most of what is in this cookbook can be prepared ahead of time and frozen, which may make things easier for patients. One suggestion we have is to make the chicken soup ahead of time, because it can be used to flavor most things during the food preparation.
What is your favorite recipe in the cookbook?
My favorite recipes are the soup and pasta as they are both filling and tasty, even without the salt!
What do you do on a daily basis to stay healthy?
In order to stay healthy I try to eat well, exercise, and stay active with my friends and family. Most importantly, I try to enjoy each day in my busy life. The Light of Life Foundation has been a large part of my life, and I love helping other thyroid cancer patients and their families.
Content last updated January 27, 2012.
Interview contents copyright © 2012, Joan Shey.
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