Joan Shey's Story
I have been a thyroid cancer survivor for 14 years now. It has been a long, tough journey from the start.
In 1993, I saw my gastroenterologist for an unrelated problem. During the examination, he found a lump in my neck that he thought might be a nodule on the thyroid. Tests revealed this nodule to be cold (my reading taught me what that meant: CANCER). After an ultra-sound and a blind needle biopsy, however, two more physicians reassured me it was not cancer after all.
I started Synthroid and watched for two years. But I couldn’t get rid of the worry. After many requests for another ultrasound, my doctor finally agreed. I wasn’t on the table for long before it was mentioned that the nodule was suspicious and that lymph nodes seemed to be involved. I left angry and scared. I was 43 years old, married with two children aged 13 & 17. I had cancer and I didn’t want to die.
A head and neck surgeon at a major cancer center performed a thyroidectomy and removed 39 lymph nodes in my neck. Each year since that 1995 surgery, I have received six weeks of treatment with I-131 for metastasies in my lungs. These six weeks each year are very difficult. Without thyroid hormone I feel depressed, bloated, tired, and worried about the outcome of the tests to come.
My doctor saw how difficult it was for me to be hypothyroid. He told me that a drug soon would be available that would allow me to stay on Synthroid during my dosimitry scans. So I waited for the day when Thyrogen would be available. Finally, in 1998, it was and it made a tremendous difference in the way I felt. But I still have the stress of the scanning and the low-iodine diet.
Not a day goes by that I don’t think about my cancer. For the first two years, I knew no one else with thyroid cancer and felt very much alone with it. There were no support groups for thyroid cancer patients. I tried a cancer group, but felt that our treatments were not the same, so it was of no comfort to me. The next time I saw my doctor, I expressed how alone I felt, and said that other patients must feel the same way. At that moment my foundation was formed. I called it The Light of Life Foundation for Thyroid Cancer. Oncologists who specialize in thyroid offered their guidance and support as members of the Board of Directors.
In 1997, I started the Light of Life Foundation with a mission to educate and provide support to thyroid cancer patients and to promote public awareness of this growing disease*. Many people, then and now, do not know that thyroid cancer exists, or what the thyroid is. My hope is to change that, through the Foundation, so that others will not remain undiagnosed and go through treatment alone.
In the past ten years, the Light of Life Foundation has made great strides. We hold monthly support groups, and have created a video library of entertaining movies to help patients during isolation treatment. The foundation also provides patients in isolation undergoing radioactive iodine treatments with baskets containing a glow-worm doll that glows in the dark, the symbol of our foundation. The baskets contain lemon candies to keep salivary glands working, and a book. Patients’ response has been very moving. Patients feel that they are not alone during this very trying time, even though they are isolated and hypothyroid.
Along with the dieticians at my cancer center, I created a low-iodine cookbook, now available in several medical centers, for patients’ use during periods of scanning. It offers suggestions about what they can prepare to eat healthfully during this time. I had found the required low-iodine diet very difficult, and I was afraid to eat something that might throw my scans off. Most patients take their diet very seriously; it is the one thing they can do to participate in receiving the best treatment possible. Only a patient can understand this.
An annual educational symposium is also part of our mission. We feel there are great benefits to bringing physicians, patients, and families together into an intimate setting to discuss issues that concern us, and to learn about new treatment advances.
We also established The Light of Life Foundation Thyroid Cancer Fellowship at Memorial Sloan-Kettering Cancer Center. Each year, we raise monies to fund a fellow to learn alongside an interdisciplinary team of leaders in endocrinology, head & neck surgery and nuclear medicine so that they can return to their institutions with an advanced understanding of treating thyroid cancer. We also support thyroid cancer research through a fund we established for the development of new diagnostic and treatment approaches. We will continue to help support these studies.
In 1999, The Light of Life Foundation Medical Advisory Board also established an esteemed annual award to be given to the most outstanding physician in Thyroid Cancer research worldwide.
With the continued support of patients, doctors, hospitals, Abbott Laboratories and Genzyme Corporation, we hope to reach many more patients and institutions in support of thyroid cancer patients and their treatment. The Light of Life Foundation has lit up many lives, especially my own. I am not alone anymore, and this sense brings me much comfort. I hope in turn, I can bring much comfort to others.
Best regards and thank you for visiting!
Light of Life Foundation, Inc.
PO Box 163
Manalapan, NJ 07726
* 1935: 1.3 cases per 100,000 population; 1991: 5.8 cases per 100,000. American Cancer Society CA-Cancer Journal for Clinicians, Vol. 50, pages 7-33, January 2000.