ThyCa JOURNEYS NEWSLETTER – Spring 2006
IN THIS ISSUE
Letter from the Editor
Chernobyl: 20 Years Later
ThyCa’s 9th International Conference is Just Around the Corner
New Flyers Raise Awareness
ThyCa News Nuggets
ThyCa Supports Research
ThyCa’s Regional Spring Workshops
A Survivor’s Story
An Open Invitation from ThyCa
More about This Newsletter and ThyCa
Help Us Help Each Other
This week, I called my endocrinologist to ask if an unrelated medical procedure I am planning would be detrimental to my status as a thyroid cancer survivor. He assured me it would not. I thanked him and was ready to hang up the phone when he sprang this on me: Dr.: So, you’re due for a blood test soon. Me: Actually, when I had my Thyrogen test in the fall and it was clear, you said I should come back in 12 months. So I have a while before my next test. Dr.: Hmmm. Well, I’d feel more comfortable waiting 9 months than 12 between tests. Why don’t you come back in the summer? Me: OK. Thanks. See you in the summer.
I know my doctor means well. On a rational level, I understand that he wants me to be tested sooner to make sure I’m healthy. And yet….that conversation sent my mind reeling. Was he sending me a message? Does he know something he’s not telling me? Why 9 months and not 12? My neuroses kicked into overdrive.
I can go entire days without thinking about my thyroid cancer experience – and yet one conversation with the doctor and I revert immediately to the patient I was in 1999. But really, I’m a stronger patient these days: I’m better educated, have more support from friends I’ve made through ThyCa, and of, course, I’m older (and hopefully wiser). So I sat on the couch for a little while, thought things over, then strapped on my iPod and went for a walk. And while I can’t say I’ve forgotten about the conversation (after all – I’m writing about it here), I’ve decided that, like Scarlett O’Hara, I’ll think about it tomorrow.
Have a wonderful Spring,
April 26, 2006 marked the 20th anniversary of the Chernobyl nuclear disaster, which sent massive amounts of radiation into the atmosphere, spreading over cities, towns, and farmland in a wide area. The area near Chernobyl, located in Ukraine near the border with Belarus, was evacuated and remains uninhabited today. (Recently, however, the New York Times reported that tours of the Chernobyl area are now being offered.)
Studies show a significantly increased number of thyroid cancer diagnoses among people who were infants or children near Chernobyl in 1986, and thus most susceptible to the effects of the radiation. Some people who were not in the immediate vicinity but ate the produce from farms onto which radiation settled have also demonstrated ill effects.
Events surrounding this year’s 20th anniversary have taken place around the country, and more are scheduled. A special event at the beginning of May will focus on thyroid cancer.
On Monday, May 1, from 9 a.m. to 5 p.m., the Massachusetts Eye and Ear Infirmary in Boston hosted the “Chernobyl Thyroid Cancer Convocation—20 Years After the Disaster.” This event was presented in cooperation with the Children’s Chernobyl Project and ThyCa: Thyroid Cancer Survivors’ Association. The program is free and open to physicians, patients, caregivers, and anyone interested in the connections between the Chernobyl disaster and thyroid cancer.
The day included a discussion of radiation-induced thyroid cancer associated with the Chernobyl nuclear disaster, as well as thyroid cancer treatment and patients’ experiences.
Faculty included Dr. Sergiy Cherenko, Vice Director, Ukrainian Center Endocrine Surgery; Dr. Paul Konowitz, Thyroid Surgeon and Founder, Doctors as Patients; Dr. Stephanie Lee, Endocrinologist, Boston Medical Center; Dr. Virginia LiVolsi, Chair, Pathology Panel, Chernobyl Thyroid Tumor Bank; Dr .Gregory Randolph, Director Thyroid Surgical Division, Massachusetts Eye and Ear Infirmary; and Dr. Elaine Ron, Senior Investigator, National Institutes of Health, Expert in Effects of Ionizing Radiation. Further details are in ThyCa’s Calendar of Events.
In addition, this past winter Chernobyl-related events were hosted by the embassies of Ukraine and Belarus, two countries most affected by the disaster, in Washington, DC. At these and other events, ThyCa: Thyroid Cancer Survivors’ Association has been represented and introduced as a resource for people who have been diagnosed and their families.
One thyroid cancer survivor who came to the United States from Ukraine and has been in touch with ThyCa noted the importance of careful screening for immigrants from the region. She wrote,
“I think it is important to reach out to immigrants from Ukraine, Belarus, and Russia who may have been exposed to radiation from Chernobyl. I was misdiagnosed here, in the U.S. for a lot of years. When I pointed my very enlarged thyroid out to several family doctors, all they did was a blood test, and after it was normal, they send [sic] me on my merry way saying that a lot of middle age women have enlarged thyroids and it is not a problem. Nobody paid any attention that I was from Ukraine and nobody ever told me to investigate further.”
For further information about Chernobyl, its effects, and medical and humanitarian aid being provided to those affected, visit:
- Chernobyl Children Project, USA
- Friends of Chernobyl Centers US (FOCCUS) http://www.madison.com/communities/foccus/
ThyCa’s 9th International Conference will be held October 27-29, 2006, in Orlando, Florida. The conference will feature medical experts, forums for patients and caregivers, roundtables, and a terrific dinner and auction benefiting ThyCa’s research funds. The dinner/auction, chaired by ThyCa volunteer Cheri Wallace Lindle, will be held Saturday, October 28, 2006, from 6 p.m. to 9 p.m. at the Sheraton World, the ThyCa conference hotel in Orlando. The registration form will be on the web site by early May. We’ll add further details throughout the summer and fall.
Raising awareness about thyroid cancer, in order to increase early detection and prompt treatment, is a core element of ThyCa’s mission.
Two new awareness flyers developed by ThyCa volunteers will soon be available on ThyCa’s web site.
The flyers outline the importance of routinely doing neck checks for thyroid nodules, and remind readers of the importance of including a thyroid neck check as part of regular physical exams.
While most thyroid nodules are benign, some are thyroid cancer.
Visit the awareness page on ThyCa’s web site for more information. Help spread the word about thyroid cancer and early detection, through our brochures and spirit items, including ThyCa wristbands, pins, and magnets.
September is Thyroid Cancer Awareness Month, sponsored by ThyCa. Contact us for free materials! Visit www.thyca.org.
A thyroid cancer survivor recently wrote to ThyCa:
“I forwarded the pdf link of the cookbook to various friends who all wanted to help. From the cookbook came three weeks of meals arriving at my doorstep —at a time when I didn’t have the energy to move, let alone stand at the stove or go to the grocery store. Forwarding a link to this site also helped my friends and family understand what I was going through and how to help.”
- New Pediatric Web Site. We’re excited to announce that ThyCa will soon launch our new Pediatric Thyroid Cancer Web Site, as part of the ThyCa web site. We expect to post the first sections of the web site this spring.
- Combined Federal Campaign. We are proud to announce that ThyCa has been accepted by the Combined Federal Campaign, the world’s largest workplace giving campaign. Federal civilian, postal and military employees will now be able to choose ThyCa as a recipient of their workplace donations through the Combined Federal Campaign (CFC). ThyCa’s identification code will be assigned later in the year. Watch for this important information. This federal employees’ charitable giving campaign raises millions of dollars each year for thousands of nonprofits providing health and human services throughout the world.-
- New Support Groups. Welcome to the new local thyroid cancer support groups that have recently begun meeting in three states, and thanks to the wonderful volunteers who stepped forward to form and facilitate these groups. The group initiated by the University of Pittsburgh Medical Center in Pennsylvania is facilitated by Cindy Valko and Ralph Zottola. The new group in Albuquerque, New Mexico, the first in the state, is facilitated by Viktoria Belovarski and Vicki King. Nevada’s first thyroid cancer support group has begun meeting in Las Vegas, and is facilitated by Kathy Cannon and Leigh Ann Hinote.
- New Group in the Philippines. We’re excited to announce the formation of the first-ever thyroid cancer support group in the Philippines. This group began meeting in March at Cebu Doctor’s Hospital in Cebu City, Philippines. The ThyCa Philippines Support Group is affiliated with ThyCa and is the first such group outside of the United States.
- Support Group Web Pages. Each local ThyCa support group has its own page on ThyCa’s web site.
- ThyCa’s email support groups now boast more than 7,400 participants!
- ThyCa in the News. Theresa Missey, co-facilitator of the ThyCa St. Louis Support Group, shared her experience and news about her ThyCa volunteering in a recent issue of the St. Louis Post-Dispatch newspaper. The Society for Women’s Health Research newsletter also had an article about a ThyCa spring workshop.
- National Cover the Uninsured Week is May 1-7, 2006. This annual event raises awareness of the more than 46 million Americans who lack health insurance. As thyroid cancer survivors and their families know, treatment and care of thyroid cancer can be costly. Help ensure that all Americans have the health insurance they need to care for their health by visiting www.covertheunisured.org.
- Medical Meetings and Cancer Screenings. ThyCa is raising awareness about its services at medical conventions across the country. ThyCa has had a presence at the following events, including the American Thyroid Association Spring Meeting, American Association of Clinical Endocrinologists Annual Meeting, and the Society of Nuclear Medicine regional meeting. An exhibit is also planed for the annual meeting of The Endocrine Society in June. In addition, ThyCa has helped with community cancer screenings in Louisiana and Maryland, Cancer Awareness Day at University of Cincinnati Medical Center in Ohio, another Cancer Awareness events in Ohio and Vermont, and the Coping with Chemo program in Washington, DC. If you know of an event in your community and you’d like to see ThyCa there, let us know!
- Web Site. ThyCa’s web site keeps growing! Among the recent new additions to the site:
- Radioiodine Ablation and Treatment for Papillary and Follicular Thyroid Cancer. The question and answer format provides easy-to-understand information from Douglas Van Nostrand, M.D, Nuclear Medicine Physician and a ThyCa medical advisor.
- The Anaplastic Thyroid Cancer page has added the story of Dan in New Hampshire.
- A “Care of the Caregiver” page has been added, written by Pattie Scott.
Plus many more additions to the web site.
- ThyCa’s web site received 328,608 hits in March 2006—a new record high!
- From the Mailbox. Some notes recently received:
- “I just wanted to thank ThyCa for the cookbook. I recently had to do the diet/hypothyroid period for the THIRD and HOPEFULLY LAST time and using the cookbook really helped me this time! My husband and I made the meatloaf, which I ate with fresh tomatoes on top and it was excellent! We also enjoyed the chewy oatmeal cookies, wacky cake and the basic bread recipe allowed me to have toast and croutons! It was much less worse this time and I am really grateful that this cookbook is out there! Thank you so much!”
- “I would like to say your information has been the most extensive and informative information I have received. I would like to thank you for providing such a helpful site.”
- “I know I have thanked you several times already, but, thanks to you again! You have no idea how important and how comfortable it is to have a resource such as yours right at my fingertips.”
- “a million thanks = ) hi there — i just wanted to let you all know that i think you run a fantastic website. i don’t know what i would have done without it! THANK YOU!”
Proposals for the newest research grants sponsored by ThyCa are now being reviewed. The grant awards will be announced later this year. The two 2-year grants are open to all researchers worldwide on all types of thyroid cancer: papillary, follicular, anaplastic, medullary, and their variants.
A panel of thyroid cancer experts from the American Thyroid Association (ATA), the professional association of clinicians and researchers concerned with thyroid diseases, is selecting the grant recipients. One grant will fund a research project focusing on papillary, follicular, or anaplastic thyroid cancer.
The other grant will support a project focusing on medullary thyroid cancer.
Our thanks to all our donors. Your generosity has made these grants possible. We all share a goal—to find cures for all thyroid cancer, for a future free of thyroid cancer.
On April 22, 2006, thyroid cancer survivors and caregivers from numerous states gathered in St. Louis, Missouri, and Boston, Massachusetts, for ThyCa’s Midwest and New England workshops. This was ThyCa’s second Midwest Workshop and our fifth New England Workshop.
Thank you to the physicians, social worker, and pharmacist who spoke at these workshops, and to the ThyCa volunteers who led roundtables and helped in many other ways.
On Saturday, May 13, 2006, five physicians spoke and answered questions at ThyCa’s 5th Annual Mid-Atlantic Thyroid Cancer Survivors’ Workshop in Takoma Park, Maryland. Speakers included Kenneth D. Burman, M.D., Endocrinologist; Bruce J. Davidson, M.D., Otolaryngologist; Jacqueline Jonklass, M.D., Endocrinologist; Yolanda C. Oertel, M.D., Cytopathologist; Marina S. Zemskova, Endocrinologist. The workshop also included roundtables led by survivors, caregivers, and a social worker.
Congratulations and thanks to ThyCa volunteers Theresa Missey and Sandy Triplett, who coordinated the Midwest Workshop; Ric Blake, Jessica Jones, and Judy Kaplan, who coordinated the New England Workshop; and Gary Bloom, Sara Brenner, Marion Hammond, and Cherry Wunderlich, coordinators of the Mid-Atlantic Workshop.
ThyCa volunteers who helped with all three workshops included ThyCa’s Web site coordinators Joel Amromin and Betty Solbjor; as well as outreach volunteers Debbie Hatfield, Lauri Huber, and Nathania Heckert. Special thanks as well to all of ThyCa’s Publications, Outreach, and Toll-Free Number volunteers around the country.
Brushing my teeth one February night in 1999, I tilted my head to the right and noticed an unfamiliar lump protruding from my neck, slightly left of center and about an inch above the clavicle.
“Strange,” I thought, “I don’t remember seeing this before.”
Several days later, I sat in my primary care physician’s office as she explained that this lump was a thyroid nodule, that it was probably benign but I shouldn’t worry if it was malignant…her father had thyroid cancer and lived a long life with it…it’s a slow-moving cancer…if you have to have cancer, this is the one to have. She was the first of many doctors who would tell me that thyroid cancer was the best cancer to have.
I couldn’t comprehend any cancer as a good one to have, particularly at 26 years of age, but I grasped the implication in the statement: I should consider myself lucky that I wasn’t facing the possibility of something much worse.
A series of ultrasounds and CT scans, two surgeries and several biopsies later, the presence of papillary carcinoma of the thyroid was confirmed.
After surgery and treatment, my doctors continued to assure me that this was “the best cancer to have,” that I need not worry about recurrence, that I could forget about it and move on with my young life.
I did just that until 2003, when, through standard testing and thorough care, a new doctor discovered a recurrence in the lymph nodes of my neck. Shocked to the core, I began to question the message that thyroid cancer is the best cancer to have and to wonder about the experiences of other individuals with thyroid cancer.
I started graduate studies the following year and ultimately focused my research on the experiences of thyroid cancer survivors. Many of the individuals I spoke with stressed the importance of personal advocacy, demanding the best care, and turning to ThyCa and other survivors for support and information.
I’d never felt the need for a support group, perhaps because I had not fully acknowledged that I was a cancer survivor. The research process allowed me to own my thyroid cancer experience, empowered me to be my own advocate, and ultimately led me to attend a local ThyCa support group and to volunteer with ThyCa.
Thyroid cancer may, in terms of treatment and prognosis, be “the best cancer to have” in many cases, but it is a chronic illness and requires vigilant follow-up care. According to the people I’ve talked to, patients sometimes do not feel prepared for the realities of living as a thyroid cancer survivor. ThyCa is a great source of information, not only for the newly diagnosed, but also for everyone facing surveillance testing or unexpected results. The many services, events, and programs offered by ThyCa are as much about giving as receiving.
By attending the local ThyCa support group and volunteering with ThyCa, I am able to share my unique voice, talents and perspective with other survivors. At the same time, I am empowered to be proactive in my own care, to be my own advocate.
Why not give and receive these same benefits and become a ThyCa volunteer today?
ThyCa invites thyroid cancer survivors, families, and friends to spread the word about ThyCa’s free year-round support services and publications, including our award-winning educational web site, our annual conference, and other special events.
If you would like to request ThyCa awareness materials for your medical office, or to give to your community group, your physicians, and your friends and relatives, please send your mailing address to us by e-mail firstname.lastname@example.org, or fax to 1-630-604-6078, or call 1-877-588-7904, or mail to PO Box 1545, New York, NY 10159-1545. We’ll be happy to provide our materials to you.
More ways to help us sustain and strengthen our services — Volunteer, become a member, and support our Rally for Research.
The articles in this newsletter represent the opinions of their authors and are not official positions of ThyCa: Thyroid Cancer Survivors’ Association, Inc. The articles by laypeople do not offer medical advice, as the authors are not doctors and have no medical training. Articles by physicians are educational and not intended to offer medical advice, as physicians cannot diagnose through the Internet. If you have medical questions, please consult with your physician.
ThyCa: Thyroid Cancer Survivors’ Association, Inc. is an all-volunteer nonprofit 501(c)(3) service organization advised by nationally recognized thyroid cancer specialists and dedicated to support, education, and communication for thyroid cancer survivors, their families, and friends.
Throughout the year ThyCa offers free resources, including education through our award-winning web site, our free low-iodine cookbook downloadable from the web site, nine e-mail support groups, local support groups coast to coast and internationally, the Person-To-Person Network for one-to-one support, newsletters, and the survivors’ toll-free telephone number. ThyCa organizes free regional workshops and our annual International Thyroid Cancer Survivors’ Conference.
ThyCa also sponsors Thyroid Cancer Awareness Month in September and provides free year-round awareness materials. In addition, ThyCa sponsors thyroid cancer research fundraising and research grants.
Copyright (c) 2006 ThyCa: Thyroid Cancer Survivors’ Association, Inc. We encourage you to send this newsletter to your family and friends. For permission to reprint in another electronic or print publication, please contact ThyCa.
We want your comments on this newsletter! Do you like it? What would you like us to print? Send your comments to email@example.com or ThyCa: Thyroid Cancer Survivors’ Association, Inc. P.O. Box 1545, New York, NY 10159-1545