More than 60 Thyroid Cancer Support Groups in 35 States

Extensive Web Site Now Includes Local Support Group Web Pages; Other Free Resources Help Thyroid Cancer Survivors and Loved Ones

Thyroid cancer, one of the few cancers that is increasing in overall incidence, has a worthy opponent. ThyCa: Thyroid Cancer Survivors’ Association, an all-volunteer nonprofit support organization, offers free local support groups in 61 cities throughout the United States in addition to a wide array of services and resources.

Free support groups and one-to-one support are the backbone of ThyCa, offering survivors, families, friends, and caregivers an opportunity to share their experience in a safe, supportive environment. In addition to local support groups, ThyCa offers e-mail groups plus one-to-one support by e-mail and phone.

An award-winning Web site, www.thyca.org, provides extensive information about thyroid cancer. This month ThyCa introduces customized Web pages, one for each support group. These pages allow local groups to post meeting information and highlight speakers and activities. The Web site offers visitors a menu of resources on thyroid cancer, ways to receive and provide support, a free online newsletter, a free downloadable low-iodine cookbook, news about free educational workshops, information about the annual 3-day international conference for thyroid cancer survivors and caregivers, and links to other sites.

ThyCa volunteers, including the Webmistress, Betty Solbjor of Massachusetts; Los Angeles Support Group Facilitator, Joel Amromin; and ThyCa Support Groups Coordinator, Sara Gorrell Brenner of Virginia, are credited with bringing the local pages to life. “Working with hundreds of other volunteers, Betty Solbjor, Joel Amromin, and Sara Gorrell Brenner represent the heart of ThyCa—survivors who are giving back,” commented Gary Bloom of Maryland, ThyCa Board Chair.

Support groups for thyroid cancer survivors are organized coast to coast by ThyCa: Thyroid Cancer Survivors’ Association, Inc. ThyCa is a national nonprofit, volunteer organization providing services and resources, free of charge, to thyroid cancer survivors and their families.

For more information visit the web site, e-mail thyca@thyca.org, or call toll-free 877-588-7904.

Raleigh’s first support group for thyroid cancer survivors and their families was formed in January 2005 and will meet on the fourth Saturday of each month from 10:30 a.m. to noon.

The Raleigh group meets at the Rex Medical Center Conference Room, 4420 Lake Boone Trail, Raleigh, North Carolina. The next meeting will take place on Saturday, February 26, 2005. Kathryn Wall and Ann Maddox are the group’s facilitators.

The free support group, ThyCa Raleigh, is affiliated with ThyCa: Thyroid Cancer Survivors’ Association, Inc.

“We encourage thyroid cancer survivors in the Raleigh area to attend the ThyCa Raleigh Support Group,” said ThyCa Support Groups Coordinator Sara Gorrell Brenner, who is also a volunteer ThyCa Board Member and Co-Facilitator of the ThyCa Northern Virginia Support Group.

The Raleigh ThyCa Support Group is part of a national network of thyroid cancer support groups organized by ThyCa: Thyroid Cancer Survivors’ Association, Inc. Survivors, families, friends, and caregivers are all welcome to attend the free meetings. To find out more about the Raleigh group, contact Kathryn Wall, 919-848-8694, or Ann Maddox, 910-484-0890 or e -mail to Raleigh-NC@thyca.org.

For more information about ThyCa’s free year-round support services, education, and publications, e-mail tothyca@thyca.org, call toll-free 1-877-588-7904, write to PO Box 1545, New York, NY 10159-1545, or visit the ThyCa web site.

ThyCa: Thyroid Cancer Survivors’ Association is pleased to announce that its Central Pennsylvania ThyCa Support Group will begin holding monthly meetings in Harrisburg starting on February 6, 2005.

This free group will meet on the first Sunday of every month from 1 p.m. to 3 p.m., at the East Shore Area Library, 4501 Ethel Street, Harrisburg, Pennsylvania, behind Colonial Park Mall. The volunteer facilitator is Sylvia Empson and the co-facilitator is Georgy Stevens.

The ThyCa Central Pennsylvania Support Group is part of a national network of thyroid cancer support groups organized by ThyCa: Thyroid Cancer Survivors’ Association, Inc. ThyCa Central Pennsylvania is free and open to all thyroid cancer survivors, their families, friends, and caregivers. For more information about ThyCa Central Pennsylvania, please contact the support group facilitator, Sylvia Empson at 717-657-9793 or the co-facilitator, Georgy Stevens at 717-732-2285 or e-mail Central_PA@thyca.org.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a national all-volunteer nonprofit 501(c)(3) organization. ThyCa provides thyroid cancer survivors and their families with free year-round services such as person-to-person and e-mail support groups, a free low-iodine cookbook, free newsletters, and other educational resources. ThyCa also sponsors free regional workshops and an annual international conference. ThyCa is dedicated to providing a supportive and educational community for thyroid cancer survivors, their families, and friends.

For more information about ThyCa’s free services and special events, please visit the ThyCa web site, call toll-free at 1-877-588-7904, write PO Box 1545, New York, NY 10159-1545, or e-mail to thyca@thyca.org.

On January 22, 2005, Orange County will welcome its first Support Group for thyroid cancer survivors and their families. The ThyCa Orange County Support Group will meet at the Hoag Memorial Hospital, Patty & George Hoag Cancer Center Building 41, 2nd Level, Conference Room A, at 4000 W Pacific Coast Highway, Newport Beach, California. The meeting will begin at 10:30 a.m. and will run until noon. Meetings for ThyCa Orange County will be held on the fourth Saturday of each month thereafter. Jeff Klaas will facilitate the group.

The ThyCa Orange County Support Group is part of a national network of thyroid cancer support groups organized by ThyCa: Thyroid Cancer Survivors’ Association, Inc. ThyCa Orange County is free and open to all thyroid cancer survivors, their families, friends, and caregivers. For more information about ThyCa Orange County, please contact the support group facilitator, Jeff Klaas, by phone at 949-500-7086 or e-mail to OrangeCounty_CA@thyca.org.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a national all-volunteer nonprofit 501(c)(3) organization. ThyCa provides thyroid cancer survivors and their families with free year-round services such as person-to-person and e-mail support groups, a free low-iodine cookbook, free newsletters, and other educational resources. ThyCa also sponsors free regional workshops and an annual international conference. ThyCa is dedicated to providing a supportive and
educational community for thyroid cancer survivors, their families, and friends.

On January 27, 2005, Delaware will welcome its first Support Group for thyroid cancer survivors and their families. The ThyCa Delaware Support Group will meet at the Helen F. Graham Cancer Center on the campus of the Christiana Hospital, 4755 Ogletown-Stanton Road, Newark, Delaware. The meeting will begin at 6:30 p.m. and will run until 8:00 p.m.. Meetings for ThyCa Delaware will be held on the fourth Wednesday of each month thereafter. Sharon Ruth will facilitate the group.

The ThyCa Delaware Support Group is part of a national network of thyroid cancer support groups organized by ThyCa: Thyroid Cancer Survivors’ Association, Inc. ThyCa Delaware is free and open to all thyroid cancer survivors, their families, friends, and caregivers. For more information about ThyCa Delaware, please contact the support group facilitator, Sharon Ruth, by phone at 302-454-1987 or e-mail to Delaware@thyca.org. Or contact Cindy Waddington at the hospital 302-733-1000.

On January 8, 2005, Tampa, Florida, will welcome its first Support Group for thyroid cancer survivors and their families. The ThyCa Tampa Support Group will meet at the Tampa Hope Lodge, 12810 Magnolia Drive, Tampa, Florida, located next to Moffitt Cancer Center. The meeting will begin at 10:30 a.m. and will run until noon. Meetings for ThyCa Tampa will be held on the second Saturday of each month thereafter. Cherry Brown will facilitate the group.

The ThyCa Tampa Support Group is part of a national network of thyroid cancer support groups organized by ThyCa: Thyroid Cancer Survivors’ Association, Inc. <www.thyca.org>. ThyCa Tampa is free and open to all thyroid cancer survivors, their families, friends, and caregivers. For more information about ThyCa Tampa, please contact the support group facilitator, Cherry Brown, by phone at 863-687-3821 or e-mail to Tampa-FL@thyca.org.

IN THIS ISSUE
Letter from the Editor
Attendees Said…
Some Session Notes:
–Future Treatments
–Doctor-Patient Communications
Thank You
The 2005 Conference
Also Coming in 2005+
Become a ThyCa Member
About This Newsletter and ThyCa
Help Us Help Each Other
An Open Invitation from ThyCa

LETTER FROM THE EDITOR

Welcome to this special post-conference issue of ThyCa Journeys. Our 2004 conference held in Deerfield, Illinois, was a terrific success, drawing more than 400 attendees.

Unfortunately, work commitments prevented me from attending the ThyCa conference. In fact, I was running another conference in New York. Sadly, while I was there, it was announced that U.S. Supreme Court Chief Justice William Rehnquist had been diagnosed with thyroid cancer. As everyone wondered what the diagnosis meant for the Chief Justice’s health, my status as a thyroid cancer survivor meant that I became the go-to person for information about thyroid cancer.

The newspapers were full of the Chief Justice’s diagnosis right after the ThyCa conference weekend. Precisely because of thyroid cancer’s ability to strike anyone at any time, its different forms, varying degrees of severity, and the need for differing types of treatment and further research, ThyCa’s work is so important. ThyCa provides support to the newly diagnosed, individuals going through treatment, survivors and caregivers—helping them all navigate the complex world created by a diagnosis. The annual conference is our flagship event, this year drawing people from 37 states, the District of Columbia, Canada, and the United Kingdom.

If you too were not able to attend the conference, I hope this short newsletter gives you a taste of its spirit and inspires you to try and attend next year’s conference in Denver, Colorado, on October 21-23, 2005. Be sure also to check the ThyCa website www.thyca.org for more information. If you were able to attend, I encourage you to share your experiences with others, letting them know the importance of diagnosis and effective treatment. I look forward to seeing you next year,

Barbara Weinstein
Editor

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ATTENDEES SAID….

“I learned so much!”…..”Always good to see everyone & get new info.” ……”I enjoyed the small roundtables this afternoon.” ……….”Thanks for everything!”…….”Overall excellent presentations….Thanks!” ……. “Great speakers—Great job!” ……..”Excellent speakers” ……”The doctors gave great broad & personal help. They have been terrific. The volunteers are fabulous!!!”…… “I really appreciate the time and opportunity to hear/speak with the doctors in their related fields. It is most enlightening.” ……. “The docs are wonderfully approachable.”

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PRELIMINARY NOTES FROM SOME CONFERENCE SESSIONS
(Our thanks to our volunteer notetakers. We’re developing more conference information for the web site.)

FUTURE TREATMENTS FOR ALL TYPES OF ADVANCED THYROID CANCER(Excerpts from notes on presentations by several physicians.)

Most thyroid cancers will be ‘cured,’ but only time will tell which.
Studies confirm that early detection reduces the likelihood of fatality.
Thyroid cancer is an unpredictable disease, and can come back.
Treatment goal: disease free. If not disease free, next goal may be: curable in 10 years.
Molecular biology is providing a new avenue to developing very selective drugs.
Cancer is a disease of genes. When we can do better gene analysis, we can provide better prognoses and targeted therapy.
Future strategies will emphasize identification and targeting of what’s broken in the cancer cell.
An effective treatment should target multiple factors, such as angiogenesis and growth stimuli. Attacking only one of the pathways is not likely to be entirely successful. Groups of therapies should be tailored on a patient by patient basis.
Options For Treating Thyroid Cancer:
- -Surgery—Generally the 1st option
- -Radioactive Iodine (RAI) (for papillary, follicular, and variants)
- -TSH suppression (for papillary, follicular, and variants)
- -Beam radiation
- -Chemotherapy
- -Emerging therapies
- -Molecular targets (e.g., oncogenes, tumor suppressor genes, cell cycle processing, cell survival, metastasis)
- -Immunotherapy (e.g., vaccines)
- -Gene therapy (e.g., corrective, cytoreductive, immunomodulatory)
The basic standard armanentarium includes surgery, RAI (for papillary, follicular, variants), TSH suppression (for papillary, follicular, variants), and beam radiation.
Drug Development Process
- Pre-clinical laboratory studies.
- Animal studies that test for safety and efficacy.
- . Human clinical trials. Phase 1: Escalating doses in 1 to 30 patients to test safety and establish maximum safe dose. Phase 2: 30 to 100 patients to test both safety and efficacy using safe doses determined in phase 1. Phase 3: Hundreds to thousands of patients. Comparison to a placebo or gold standard. Determines statistical efficacy for FDA
Clinical Trials List: www.clinicaltrials.gov

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DOCTOR-PATIENT COMMUNICATIONS(Excerpts from notes on presentations by several physicians.)

Informed Consent
- \ It is the foundation of ethical medicine, including the right to refuse treatment.
- Patients should hear a range of options for treatment as part of the informed consent process. Signing the consent form acknowledges the receipt of such information, which may be delivered verbally or on paper.
- For research, there are much higher standards, which must be spelled out on the written consent form.
Doctor’s responsibility:
- Do what is right for the patient.
- Empower and respect your patients with enough information to let them make decisions.
- Fight for the patient against the medical bureaucracy.
Let your doctor know what’s helpful and what’s not helpful in communications.
The most important words of medicine that a doctor must learn? “I don’t know” (not “I don’t care to know”).
You change car mechanics; don’t put up with a doctor you can’t talk to.
Tell your doctor: I like you, I respect you, and want to build a relationship. I would like to establish a good relationship and restore my health. But you are not there for a conversation; you are paying for a service.
Be realistic; it’s a contractual relationship. You want it to work for you, in order to get good results.

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THANK YOU TO OUR CHICAGO HOSTS!
Especially Allison Hoffman and Jeni Ton, ThyCa Chicago Support Group Facilitators, and their families, and Jenny Elrod and her family, who stored dozens of boxes of our conference supplies in their garage.

THANK YOU, CONFERENCE VOLUNTEERS!
We couldn’t have done it without you.

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THE 2005 CONFERENCE: DENVER, COLORADO!

The 8th International
Thyroid Cancer Survivors’ Conference
October 21-23, 2005
Sheraton Denver West Hotel
360 Union Boulevard
Lakewood, Colorado
Tell your friends and family—help spread the word.
Visit the ThyCa web site for updates—www.thyca.org

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ALSO COMING IN 2005:

Support Group Meetings, sometimes with guest speakers
New ThyCa Support Groups in California, Delaware, Florida, New Hampshire, and Ohio. Also, new ThyCa groups recently began meeting in Louisiana, Tennessee, and Texas
Free Spring Workshops: Already scheduled for April in Baltimore, Maryland, and St. Louis, Missouri
Thyroid Cancer Awareness Month: September 2005

For details about these, our newest medical advisors, and more, visit www.thyca.org

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BECOME A THYCA MEMBER

While all our support services are free of charge, ThyCa needs your help to continue and grow. This is how your membership helps us continue helping you and others who may find themselves on the same journey.

Please help us continue to support you and everyone else who has been diagnosed with thyroid cancer.

For your convenience, you can become a member on our web site by going to www.thyca.org and clicking on Membership. You can join online, or print out and mail the membership form. Do it today!

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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 and session notes from 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, and communication for thyroid cancer survivors, their families, and friends.

Copyright (c) 2004 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.

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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

Thank you to the volunteers who assisted Barbara Weinstein, Editor, with this issue of ThyCa Journeys: Gary Bloom, Temre Davies, Gloria Keller, M. L. Sprung, Ed Walker, Jo Walker, Cherry Wunderlich, and conference notetakers.

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AN OPEN INVITATION FROM THYCA

ThyCa invites all thyroid cancer survivors, families, and friends to tell your friends and relatives about ThyCa’s free year-round support services and publications, as well as about our conference and other special events. Visit our award-winning educational web site for details

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In 2005, for the third year in a row, a thyroid cancer research grant will be sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc., ThyCa Board Chair Gary Bloom has announced.

The American Thyroid Association(ATA), the professional association of clinicians and researchers concerned with thyroid diseases, will select the recipient of the ThyCa grant. The Call for Proposals and eligibility requirements are available on the ATA web site. Deadline for submission of a proposal summary is January 31, 2005. Authors of selected proposals will be notified by late February and invited to submit complete grant applications that will be due by April 1, 2005,

“Our grants are an important step in ThyCa’s growing efforts to raise funds for research to cure all types of thyroid cancer, which is the most common endocrine cancer. More research on this challenging disease is urgently needed, because it’s one of the few cancers that is increasing in its incidence as well as numbers of deaths. We appreciate the concern and support of everyone in ATA for patients and families who are dealing with thyroid cancer,” said ThyCa Board Chair Gary Bloom.

“We feel excited and honored to support advances in thyroid cancer research,” said ThyCa Board Member and Fundraising Chair Joni Eskenazi. “The funds for our grants are made possible by the generous contributions of our members, families, friends and volunteers, in support of our sponsored Fundraising for Research Events held during the year.”

The first two grants funded by ThyCa: Thyroid Cancer Survivors’ Association, Inc., in 2003 and 2004, were awarded to Xiulong Xu, Ph.D., of Rush-Presbyterian-St. Luke’s Medical Center in Chicago, Illinois, and Sareh Parangi, M.D., Assistant Professor of Surgery at Harvard Medical School, Boston, Massachusetts.

ThyCa is an all-volunteer, national nonprofit 501 (c)(3) service organization of thyroid cancer survivors, families, and health care professionals guided by nationally recognized experts on thyroid cancer. ThyCa’s mission is education, support, and communication for people at all stages of testing, treatment, and follow-up for all types of thyroid cancer, as well as for their families and friends.

Free support services and resources include ThyCa’s award-winning educational web site, seven e-mail support groups, local support groups coast to coast, a Person To Person Network, a toll-free survivors’ telephone number, a free online newsletter, a free downloadable low-iodine cookbook, and regional one-day workshops.

In addition, ThyCa’s annual international conference brings together thyroid cancer survivors, families, and experts in thyroid cancer treatment and research. The 8th International Thyroid Cancer Survivors’ Conference will take place October 21-23, 2005, in Denver, Colorado, at the Sheraton Denver West Hotel.

Information about thyroid cancer, ThyCa’s free support services, and the annual conference is available by writing to PO Box 1545, New York, NY 10159-1545, e-mailing to thyca@thyca.org, or visiting the ThyCa web site.

ThyCa: Thyroid Cancer Survivors’ Association, Inc., is pleased to announce that five thyroid cancer specialists have been named to its Medical Advisory Council: Mark S. Chambers, D.M.D., M.S., Stephanie L. Lee, M.D., Ph.D., Ernest L. Mazzaferri, M.D., Pamela Schultz, Ph.D., R.N., M.S., and Douglas Van Nostrand, M.D.

Dr. Chambers is Associate Professor of Head and Neck Surgery and Radiation Oncology and Deputy Chief of the Section of Oncologic Dentistry and Prosthodontics at University of Texas M. D. Anderson Cancer Center, Houston, where he focuses on oral complications associated with cancer therapy.

Dr. Lee is Director of the Endocrine Clinics at Boston Medical Center, Boston, Massachusetts, and Associate Professor of Medicine at Boston University Medical School. A member of the American Thyroid Association’s Executive Council, she has conducted research on the low-iodine diet.

Dr. Mazzaferri is an endocrinologist who has specialized in thyroid cancer treatment and research for many years, first at Ohio State University Medical School and now at the University of Florida Shands Cancer Center, Gainesville, Florida. He is a member of the Executive Council of the American Thyroid Association.

Dr. Schultz is Associate Professor of Nursing at New Mexico State University, where she conducts research on patients’ experiences with medullary thyroid cancer. Previously, she was Program Director for Endocrinology at the University of Texas M. D. Anderson Cancer Center.

Dr. Van Nostrand, Director of Nuclear Medicine at Washington Hospital Center, D.C., has served as Clinical Professor at Uniformed Services University of Health Sciences in Bethesda, Maryland. Editor of five books for physicians, he is also lead editor of the book “Thyroid Cancer: A Guide for Patients.”

All five specialists have been speakers at ThyCa’s annual international thyroid cancer survivors’ conferences.

“We are grateful to these distinguished individuals for accepting our invitation to join ThyCa’s Medical Advisory Council,” said Gary Bloom, ThyCa Board Chair and thyroid cancer survivor. “Our medical advisors provide valuable counsel to ThyCa and support our goals in education, treatment, and research.”

ThyCa: Thyroid Cancer Survivors’ Association, Inc., is a national all-volunteer nonprofit 501(c)(3) organization that provides a network of services and resources for thyroid cancer survivors and their families at no charge. ThyCa’s free services include local support groups coast to coast, nine e-mail support groups, person-to-person support, a free low-iodine cookbook, a free online newsletter, an award-winning educational web site, Thyroid Cancer Awareness Month, and workshops and conferences.

For more information about thyroid cancer, ThyCa’s free year-round services and resources, and the workshops and conference, write to PO Box 1545, New York, NY 10159-1545, call toll-free 1-877-588-7904, e-mail to thyca@thyca.org, or visit the ThyCa web site at www.thyca.org.

On January 8, 2005, Columbus, Ohio will welcome its first Support Group for thyroid cancer survivors and their families. The group, ThyCa Columbus, is affiliated with ThyCa: Thyroid Cancer Survivors’ Association, Inc. The free group will meet at the Village Victorian Health Center Boardroom, which is located on the first floor of the facility. The meeting will begin at 10:30 a.m. and run until noon and will subsequently be held the second Saturday of every month. Erin and Ed Kagel will facilitate the group.

“We are thrilled to provide a resource for support to thyroid cancer survivors and their families in the Columbus area,” said ThyCa Support Groups Coordinator Sara Gorrell Brenner, who is also a volunteer ThyCa Board Member and Co-Facilitator of the ThyCa Northern Virginia Support Group. “I have complete confidence in Erin and Ed Kagel, and they will do a great job facilitating the group.”

“We encourage thyroid cancer survivors in Columbus to make a New Year’s Resolution to attend the ThyCa Support Group,” concluded Brenner.

The Columbus ThyCa Support Group is part of a national network of thyroid cancer support groups organized by ThyCa: Thyroid Cancer Survivors’ Association, Inc. Survivors, families, friends, and caregivers are all welcome to attend the free meetings. To find out more about the Columbus group, e-mail columbus-oh@thyca.org or call 614- 436-5411.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a national all-volunteer nonprofit 501(c)(3) organization of thyroid cancer survivors, families, and health care professionals, advised by nationally recognized thyroid cancer specialists and dedicated to support, education, and communication for thyroid cancer survivors, their families, and friends. For more information about ThyCa’s free year-round support services, education, and publications, e-mail to thyca@thyca.org, call toll-free 1-877-588-7904, write to PO Box 1545, New York, NY 10159-1545, or visit the ThyCa web site.