ThyCa JOURNEYS NEWSLETTER - Fall 2005

IN THIS ISSUE
Letter from the Editor
New Anaplastic Thyroid Cancer Site Launched by ThyCa
ThyCa Expands Grant Awards: Announces Two 2-Year Grants
ThyCa News Nuggets
Dr. Leonard Wartofsky Speaks at ThyCa Support Group Meeting
What’s New on the Web Site
Letter to ThyCa
ThyCa’s 8th International Conference is Just Around the Corner
More about This Newsletter and ThyCa
An Open Invitation from ThyCa
Help Us Help Each Other

LETTER FROM THE EDITOR

I recently got an e-mail from a friend who, after nearly five years, had a recurrence of thyroid cancer. The metastasis was found in his brain and he’s currently undergoing treatment.

It’s crushing to hear of cases such as my friend’s, not only because I feel terrible about his situation, but because on a more selfish (and human) level, it’s what all survivors fear. Learning of others’ recurrence is a stark reminder that the same can happen to any of us at any time. It’s a challenge to be supportive while at the same time maintaining the emotional firewall that prevents us from becoming immobilized by the fear of our own mortality.

My friend’s recurrence means that I have to find a new way to relate to him. His situation is now more urgent than mine. Does that mean that the concerns I have about an upcoming test are less valid? Do I seem petty when sharing my worries about what my tests may find when his have already confirmed the worst? I don’t have any good answers to these questions.

I do know that for all the difficulties thyroid cancer brought to my life, through ThyCa, I have made friends that I count among those closest to me. For that, I am thankful. And so I will continue to do my best to be there for my friends, as I know they will surely be for me.

Be well,
Barbara Weinstein

NEW ANAPLASTIC THYROID CANCER (ATC) WEB SITE LAUNCHED

New ATC Site Educates Patients, Families, Professionals, and Public
About One of the Most Aggressive of All Cancers.

Free Resource, Developed by Survivors and Caregivers, Is Sponsored by
ThyCa: Thyroid Cancer Survivors’ Association.

Anaplastic thyroid cancer is a very rare and highly aggressive cancer. It is difficult to treat and has long been little understood.

Now, the newly launched Anaplastic Thyroid Cancer Web Site gives patients, families, and physicians ready access to key information about this disease, treatments, clinical trials, and critical decisions involved when first diagnosed with anaplastic thyroid cancer. The medical content receives ongoing review and input from ThyCa’s Medical Advisory Council of 22 nationally known thyroid cancer specialists, as well as from additional specialists with expertise in anaplastic thyroid cancer.

The web site’s authors are anaplastic survivors and caregivers whose first-hand experience with this disease led them to choose the site’s 16 topic areas. Many participants in the site’s development lost loved ones to this cancer. Some have taken part in ThyCa’s Anaplastic Thyroid Cancer e-mail support group since it began in 1997.

These volunteers chose topics they most wished they had understood when they or their loved ones were first diagnosed. Twelve of the 16 topics are now on the site; the others will be added this fall. In addition, the site will continue to expand and to add information on treatment, research, and support services.

“I am thrilled to see our ATC-related content on the ThyCa web site, thereby filling a void and heightening ATC awareness for patients, survivors, patients’ friends and families, and physicians,” says Bradley Rubin, ATC caregiver and coordinator of the site development project. “We wanted others to know what we wished we knew. Now, we can share our knowledge more broadly. This web site will continue to grow and will add key information. We invite further contributions. Future submissions can be e-mailed topublications@thyca.org.”

To those who have lost a loved one to this disease, he adds, “you can all take comfort that this journey did not end in vain. We now have the base of a web site that those who follow can use as a starting point to make their unfortunate new journey easier than ours.”

“To those who are seeking support and information as a result of their own battle, or that of a loved one with ATC, welcome to this site and to our e-mail group,” says Cheri Wallace Lindle, ThyCa Board Member and founder in 1997 of the Anaplastic Thyroid Cancer E-mail Support Group. “I cannot thank Brad enough for putting his energy, time, and talent into this project.”

“Because anaplastic is one of the fastest-growing tumors, patients and families need current treatment information right away when they receive the diagnosis,” says Gary Bloom, ThyCa Board Chair. “This site is an important accomplishment and a highly useful tool in anaplastic thyroid cancer management.”

The new site is one of many free education and support services available from ThyCa: Thyroid Cancer Survivors’ Association (www.thyca.org).

ThyCa EXPANDS GRANT AWARDS:ANNOUNCES TWO 2005 GRANTS FOR THYROID CANCER RESEARCH

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is pleased to announce the expansion of its research grant program with the awarding of two 2-year grants, including ThyCa’s first-ever grant for research on medullary thyroid cancer. ThyCa awarded its first and second research grants in 2003 and 2004.

The recipient of the Thyroid Cancer Research Grant is Erich M. Sturgis, M.D., of the University of Texas M.D. Anderson Cancer Center in Houston, Texas. Dr. Sturgis’s research proposal is titled “Radiation Response Genotype and Risk of Papillary Thyroid Cancer: A Case-Control Study.”

The recipient of ThyCa’s first-ever Medullary Thyroid Cancer Research Grant is Matthias Schott, M.D., of the Heinrich-Heine University of Duesseldorf in Duesseldorf, Germany. Dr. Schott’s medullary thyroid cancer research proposal is “Induction of Cytotoxic Immunity in Medullary Thyroid Carcinoma by Dendridic Vaccination.” Both grant recipients will receive a second year of funding pending status reports.

ThyCa’s grants are open to all researchers and institutions worldwide. The grant review and selection process was based on proposals’ scientific merit and was conducted by the scientific review panel of the American Thyroid Association (ATA), the professional association of clinicians and researchers involved in thyroid diseases. The grant fundraising was conducted by the volunteers of ThyCa: Thyroid Cancer Survivors’ Association, Inc. through its ongoing campaign for thyroid cancer research.

Gary Bloom, ThyCa Board Chair, said, "ThyCa is proud to expand ThyCa’s grant award program. We greatly appreciate the volunteer efforts involved in this important effort. We thank the American Thyroid Association for its wonderful support and its members’ commitment to the well-being of thyroid cancer patients.”

“We are excited by the announcement of these new research grants, and wish to thank the many volunteers and donors for their loving and generous support of our research fundraising. This wonderful announcement brings us one step closer to finding cures for all thyroid cancer and a future free of thyroid cancer,” said Joni Eskenazi, ThyCa Board Member and Fundraising Chair.

ThyCa NEWS NUGGETS

• Volunteers around the globe helped raise awareness of thyroid cancer during Thyroid Cancer Awareness Month, with community efforts and extensive media coverage. The awareness efforts continue year-round.
• --The Awareness Wristbands are a big hit! Thousands of thyroid cancer survivors and caregivers are wearing the new teal Thyroid Cancer Awareness Wristbands, as well as giving them to family and friends. The wristbands, as well as ThyCa ribbon pins, magnets, and other Spirit Items are available through the ThyCa web site.
• Missouri’s Springfield News-Leader newspaper had a feature article on thyroid cancer and Alene Miller and Denise Swain, the co- facilitators of the new ThyCa Southwest Missouri Support Group. The article was titled "Lumps, Other Signs Warn of Thyroid Cancer."
• In Texas, Karen G. shared ThyCa with her co-workers. Karen is on the Wellness Committee at the college where she works and plans to display ThyCa materials at the college's October health fair.
• In New Hampshire, Channel 9 News interviewed ThyCa outreach volunteer Debbie Hatfield, and a newspaper carried a feature article about her brother, with links to the ThyCa web site. Spreading information about the importance of early detection, treatment and follow-up is key to overcoming thyroid cancer.
• In Ohio, Stephanie C., Melissa S., and Debbie T. had thyroid cancer awareness displays at homecoming games and are working with their local school district to organize thyroid cancer awareness activities. They are parents of children with thyroid cancer.
• In Arizona, the Arizona Republic newspaper featured thyroid cancer in their “Living” section and quoted ThyCa Volunteer Jo Walker.
• In Colorado, two newspapers, the Rocky Mountain News and the Pueblo Chieftain, had features about thyroid cancer. The Pueblo Chieftain’s article also highlighted the upcoming ThyCa Conference.
• Gloria Keller, 41-year thyroid cancer survivor, retired nurse, and 5-year ThyCa volunteer, gave a presentation during the “Health Check” part of the Sunday service at the Turner African Methodist Episcopal Church in Hyattsville, Maryland. The community coordinator at Holy Cross Hospital, where the ThyCa Washington, DC, support group has been meeting since 1999 arranged ThyCa's participation. On behalf of ThyCa, Gloria gave the church library the reference books “Thyroid Cancer: A Guide for Patients” and “Could It Be My Thyroid?” as well as awareness brochures and flyers about thyroid cancer and thyroid disorders.
• Coping with Cancer magazine's September-October issue has a thyroid cancer article and ThyCa conference announcement. This national magazine is available in physicians’ waiting rooms and other locations.
• ThyCa has exhibited and distributed free awareness and resource materials at more than 40 medical meetings, cancer survivorship events, and community health fairs and programs so far this year. Many thanks to the dozens of ThyCa volunteers helping with this important outreach effort!
• ThyCa continues to make information and other resources available to health care professionals. Volunteers across the U.S. and in other countries have arranged for doctors’ offices and community groups in their communities to display ThyCa materials. Thank you for your wonderful help in spreading the word!
• ThyCa extends a special thank you to the American Thyroid Association for its wonderful support of patient well-being. ThyCa is an active member of the ATA Alliance for Patient Education.
• The expanded 5th Edition, 2005, of ThyCa’s free Low-Iodine Cookbook is now ready and downloadable from the ThyCa web site www.thyca.org. Thank you to the more than 60 thyroid cancer survivors and caregivers who contributed more than 185 original and delicious recipes to share with other thyroid cancer survivors. Download this cookbook free of charge. This free cookbook is also available for photocopying by physicians, other health care professionals, and hospitals, clinics, and community groups.
• ThyCa's E-mail support groups keep growing, and had more than 6,500 participants at the end of September 2005. Our largest group was named an Editor's Pick and given special recognition on the YahooGroups web site in August 2005.
• ThyCa’s web site received more than 250,000 hits in September! See more web site news below, and visit the web site for the latest additions.

DR. LEONARD WARTOFKSY SPEAKS AT ThyCa SUPPORT GROUP MEETING

Nearly 50 thyroid cancer survivors and caregivers packed the meeting room in Silver Spring, Maryland, at the September 17, 2005, meeting of the ThyCa Washington, D.C. Support Group, where the guest speaker was Leonard Wartofsky, M.D.

Dr. Wartofsky is President-Elect of The Endocrine Society, past president of the American Thyroid Association, and Director of Medicine at Washington Hospital Center in D.C. Dr. Wartofsky, a world- renowned authority on thyroid cancer and thyroid disorders, is editor of the medical textbook “Thyroid Cancer: A Comprehensive Guide to Clinical Management” and the co-editor of the patient and caregiver reference book “Thyroid Cancer: A Guide for Patients.”

Dr. Wartofsky discussed TSH suppression recommendations and how they depend on individual patient circumstances, with the TSH level appropriate for the patient’s stage of the disease, considering the relative risks and benefits involved. He answered numerous questions, noting that a home-based TSH test can detect TSH greater than 5, but it’s not sensitive enough for the careful titration in the tight TSH range sought for thyroid and thyroid cancer patients.

He also discussed Thyroglobulin (Tg) as a marker for common types of thyroid cancer just as PSA is for prostate cancer. Asked about Tg levels, he noted that for people with a thyroid gland, the Tg range is 3-40 nanograms. After thyroid surgery the Tg range is 1-5. If radioiodine is totally effective, the Tg is close to 0, the goal.

WANT TO HELP OTHERS BUT NOT SURE HOW TO START? HELPFUL TIPS FOR THYROID CANCER AWARENESS, SUPPORT, AND INFORMATION

• Share your thyroid cancer story with others. Tell others about the free education and support available from ThyCa: Thyroid Cancer Survivors’ Association, Inc. Services include local support groups in 35 states, one-to-one support matched by diagnosis, e-mail support groups, free downloadable Low-Iodine Cookbook, free awareness brochures, and more
• Visit the Thyroid Cancer Awareness Month web page. Download flyer titled "About Thyroid Cancer." It describes signs and symptoms to discuss with the physician, ThyCa's free services, and more.
• E-mail thyca@thyca.org with your mailing address and we'll mail you free awareness materials to share with your friends, relatives, community groups, and physicians.Tell others about the 9th International Thyroid Cancer Survivors’ Conference in Orlando, Florida on October 27-29, 2006.
• 'Wear, share, and display the Thyroid Cancer Awareness Wristband, Pin, Magnet, or other Spirit Items.

Thank you very much for your support!

WHAT’S NEW ON THE WEB SITE

ThyCa’s web site expands every week, thanks to the wonderful contributions of our web site team: Betty Solbjor, Webmistress since ThyCa’s founding; Joel Amromin, Support Groups Pages and Special Projects Webmaster; more than two dozen Publications Committee Volunteers; and the ongoing input we receive from our 22-member Medical Advisory Council and additional specialists.

A few of the newest additions:

• ThyCa Comments to FDA Workshop on Levothyroxine Sodium Products, Therapeutic Equivalence, and Brand Switching
• ThyCa Announces 2005 Grant Awards
• More than 60 Local Support Groups in 35 States: Each group has its own web page.
• The New Anaplastic Thyroid Cancer Web Site
• And more

A LETTER TO ThyCa
(With our thanks to Peggy for your letter and your permission to share it with our readers.)

My dear girlfriend told me today that she was diagnosed Friday with thyroid cancer and will have full surgery this Wednesday.

After googling and finding your site, I didn't have to go any further to get a complete understanding of what I want/need to know. After reading for 2 hours and printing about 20 pages, I am well prepared to understand her new medical terms, have a basic knowledge, and know how to best be her friend and support during this new time in her life.

Your site was not only comprehensive for a newbie like me, but it was so clearly designed that there was no frustration getting the info.

Thank you for all the time and effort building this sensitive site. I do expect to use it often and help support it.

Peggy Luippold
Texas

ThyCa’s 8th INTERNATIONAL CONFERENCE IS JUST AROUND THE CORNER

The 8th International Thyroid Cancer Survivors’ Conference kicks off in Denver, Colorado on Friday October 21, 2005 and continues through Sunday, October 23rd. The conference takes place at the Sheraton Denver West Hotel, 360 Union Boulevard, Lakewood, Colorado.

ThyCa’s conference is a unique opportunity for thyroid cancer survivors and caregivers to learn and share with others who understand just what you're going through. This year’s conference features 22 distinguished physicians and a total of more than 60 speakers and 100 sessions. We’re excited that people from 35 states, Canada, and the Philippines have already registered. Registration is also available on site at the conference, and walk-in attendees are welcome. Scholarships are available. The registration table opens at 8 a.m. each day.

For the program schedule, complete list of speakers, transportation information, and more details, visit www.thyca.org

ThyCa’s RESEARCH FUNDRAISING DINNER: FRIDAY, OCTOBER 21, 2005 AT THE SHERATON DENVER WEST

The gala Dinner/Auction Fundraiser on Friday, October 21 in Denver helps move ThyCa toward its dream of a cure for all thyroid cancer. You may reserve your tickets for the dinner at the conference. Or, explore the Auction Offerings on the ThyCa web site, and ask a friend who’s attending to bid for you.

Our research grant funding and free support services are made possible by our dedicated volunteers and contributors, this benefit evening, and the many other wonderful Rally for Research events. Thank you to everyone!

MORE ABOUT THIS NEWSLETTER AND ThyCa

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. (www.thyca.org) is an all-volunteer nonprofit 501(c)(3) service organization advised by nationally recognized thyroid cancer specialists and dedicated to support, education, communication, awareness for early detection, and thyroid cancer research fundraising and research grants.

Throughout the year ThyCa offers free resources, including education through the web site, our low-iodine cookbook downloadable from the web site, several e-mail support groups, local support groups coast to coast, the person-to-person network for one-to-one support, newsletters, and the survivors' toll-free telephone number.

Copyright (c) 2005 ThyCa: Thyroid Cancer Survivors' Association, Inc. (www.thyca.org). 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.

AN OPEN INVITATION FROM THYCA

ThyCa invites thyroid cancer survivors, families, and friends to tell their friends and relatives about ThyCa’s free year-round support services and publications, including our award-winning educational web site, our free thyroid cancer awareness brochures, and our conference and other special events.

HELP US HELP EACH OTHER

We want your comments on this newsletter! Do you like it? What would you like us to print? Send your comments to newsletter@thyca.org or ThyCa: Thyroid Cancer Survivors' Association, Inc. P.O. Box 1545, New York, NY 10159-1545

ThyCa: Thyroid Cancer Survivors' Association, Inc. 
Serving the Public Since 1995