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ThyCa JOURNEYS—Conference Follow-Up Issue
December 2004

Support and communication for thyroid cancer survivors and families. A free publication of ThyCa: Thyroid Cancer Survivors' Association, Inc.

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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