ThyCa News

ThyCa JOURNEYS NEWSLETTER - Fall 2001

09/2001

IN THIS ISSUE

Welcome Letter 
Welcome New Medical Advisory Council Members 
New Local Support Groups Meet 
E-Mail Support Groups Expand 
Knowledge Is Power: Fourth International Thyroid Cancer Survivors’ Conference Supports and Educates Participants
ThyCa Conference Carries on Despite September 11, 2001 Tragedy 
The ThyCa Conference "Class Reunion"
ThyCa Conference is a Family Affair 
Patient/Physician Communications: Session Highlights 
Aetna Foundation Awards ThyCa Unrestricted Education Grant 
Thank You, Conference Sponsors 
Survivor’s Dramedy Raises Funds for ThyCa 
ThyCa on e-Bay 
ThyCa Research Fund 
About this Newsletter

WELCOME LETTER

Welcome to the second ThyCa Journeys newsletter! The positive responses to the first issue were overwhelming. We hope that you find this newsletter just as enjoyable.

Our 4th International Thyroid Cancer Survivors’ Conference, held this past September, was a huge success. Much of this newsletter is devoted to the Conference--participants, presenters, and knowledge gained. If you attended, hopefully the articles below will bring back some fond memories. If you couldn't make it, hopefully you will be able to get some of the Conference's flavor. We hope to have more session highlights on the web site soon. We also encourage you to come to our 5th International Conference in Fall 2002 in Los Angeles, California, and throughout the year, to take part in the e-mail and local support groups.

Barbara Weinstein Editor, ThyCa Journeys newsletter@thyca.org    

WELCOME, NEW MEDICAL ADVISORY COUNCIL MEMBERS

We are delighted to announce that seven distinguished thyroid cancer specialists have joined ThyCa’s Medical Advisory Council.

  • Jeffrey A. Cooper, M.D. Nuclear Medicine Physician Albany Medical Center, Albany, NY
  • Robert F. Gagel, M.D. Endocrinologist University of Texas M.D. Anderson Cancer Center, Houston, TX
  • Donald Margouleff, M.D., F.A.C.P. Nuclear Medicine Physician North Shore University Hospital, Manhasset, NY
  • Jeffrey F. Moley, M.D. Surgeon Washington University in St. Louis School of Medicine, St. Louis, MO
  • David Myssiorek, M.D. Otolaryngologist Long Island Jewish Medical Center, New Hyde Park, NY
  • Yolanda Oertel, M.D. Pathologist Washington Hospital Center, Washington, DC
  • Carole A. Spencer Ph.D., F.A.C.B. Professor of Medicine, USC Endocrine Services Laboratory, Los Angeles, CA

They join our six other members of our Medical Advisory Council: 

  • Kenneth B. Ain, M.D. Endocrinologist University of Kentucky Medical Center, Lexington, KY
  • Kenneth D. Burman, M.D. Endocrinologist Washington Hospital Center, Washington, DC
  • Paul W. Ladenson, M.D. Endocrinologist The Johns Hopkins Medical Institutions, Baltimore, MD
  • Arturo R. Rolla, M.D. Endocrinologist Beth Israel Deaconess Medical Center, Boston, MA
  • Nicholas J. Sarlis, M.D., Ph.D. Endocrinologist National Institutes of Health, Bethesda, MD
  • Monica C. Skarulis, M.D. Endocrinologist National Institutes of Health, Bethesda, MD

We greatly appreciate the Council's support and guidance, which helps ensure that the medical information we present is accurate and up to date.

NEW LOCAL SUPPORT GROUPS FORM

This fall, thyroid cancer survivors have formed new support groups in several states. The newest groups and their contact e-mail addresses are:

The website Support Section lists all the support groups, as well as meeting times, locations, facilitator phone numbers and e-mails. For information about starting a ThyCa Support Group in your area, e-mail: support_coord@thyca.org.

E-MAIL SUPPORT GROUPS GROWING

ThyCa now has five e-mail support groups for people with every type of thyroid cancer: papillary, follicular, medullary, anaplastic, advanced thyroid cancer, and pediatric thyroid cancer. These groups give thyroid cancer survivors and caregivers everywhere easy access to support and education around the clock, seven days a week.

You’ll find instructions for joining these e-mail groups on the Support section of the ThyCa web site.

Also, if you’re an America Online subscriber, you’ll find directions for joining the Monday and Tuesday evening AOL Thyroid Cancer Mutual Support Groups.

CONFERENCE FEATURE SECTION

KNOWLEDGE IS POWER: FOURTH INTERNATIONAL THYROID CANCER SURVIVORS’ CONFERENCE SUPPORTS AND EDUCATES PARTICIPANTS

ThyCa's Fourth International Conference brought 320 survivors, caregivers, and speakers to Chevy Chase, Maryland, September 21-23. Participants came from 28 states, the District of Columbia, and Canada.

The mission of ThyCa: Thyroid Cancer Survivors' Association is threefold:

  1. To educate, so we and our families better understand our disease. 
  2. To participate, so others learn from our experience. 
  3. To communicate, so we and our health-care professionals better understand each others' needs.

The annual ThyCa Conference, together with our web site, support groups, and toll-free number, help accomplish this mission.

During the 50 information and support sessions held during the conference, survivors and caregivers learned from some of the top doctors in the thyroid cancer field. Thyroid cancer specialists attended from major medical centers across the country, including Johns Hopkins, Mayo Clinic, Massachusetts General Hospital, the National Institutes of Health, Uniformed Services University of the Health Sciences, University of Kentucky, University of Texas M.D. Anderson Cancer Center, Washington Hospital Center, and many other centers.

The conference offered sessions related to the four main types of thyroid cancer: papillary, follicular, medullary and anaplastic, as well as the variants and pediatric thyroid cancer. Run entirely by ThyCa volunteers, the event gave participants, who ranged in age from teenagers through survivors in their seventies, the opportunity to learn about testing, diagnosis, treatment, monitoring, self-care for emotional health, research, medications, and insurance issues. Doctors, pharmacists, and other health professionals were on hand to provide information through formal presentations, roundtable discussions, and informal question and answer sessions.

The opening roundtable encouraged participants to share their personal experiences with thyroid cancer. Next, for those new to thyroid cancer, a slide presentation demonstrated the techniques used to diagnose thyroid cancer through fine needle aspiration. An introduction to the basics of treating thyroid cancer was also provided.

Other sessions included information on the latest advances in the treatment of papillary, follicular, medullary and anaplastic thyroid cancer. New developments in the monitoring of thyroid cancer were also highlighted. Conference participants learned the latest information on the use of Thyrogen to test for the recurrence of thyroid cancer without requiring the patient to withdraw from thyroid hormone replacement therapy. Sessions were also devoted to emotional well-being and stress reduction techniques, research tools available to the patient, palliative care, radiation oncology, legal issues, surgical information, the low-iodine diet, family communication, pediatric thyroid cancer, nuclear medicine, pharmaceutical issues, and pregnancy and maternity care.

As always, the ThyCa Conference continued its tradition of recognizing the tremendous work of those who care for thyroid cancer patients and survivors. Several sessions were devoted to the specific concerns and needs of caregivers. Three such sessions were facilitated by Mark S. Irion of Lancaster, Pennsylvania, caregiver to his wife Elizabeth, a thyroid cancer survivor, and Miguel Melendez, of Long Island, New York, caregiver to his wife Abby, a thyroid cancer survivor. In one of these sessions, they were joined by Dr. Paul E. Irion, Elizabeth’s father-in-law. This served as a reminder that cancer impacts all generations of extended families.

Conference sessions were geared toward those with varying levels of knowledge, allowing newcomers as well as longtime survivors and family members to learn new information about the treatment and monitoring of thyroid cancer. Sara Gorrell hoped that what she learned at the Conference would benefit those who attend the Northern Virginia support group, located in Fairfax, and for which she is the facilitator. "The more knowledgeable I am, the more I can help," she said.

"Before last year's conference, I felt like my access to information was limited due to the rarity of my disease," said another attendee. "Coming home from ThyCa armed with all that information gave me a feeling of control over my own destiny. That was a huge comfort. Medullary thyroid cancer is so different from the other thyroid cancer types that it would be easy to leave us out. The fact that ThyCa bends over backwards to provide so much medullary-specific content is amazing! I feel like I've gotten free consultations with all the top experts in the country. Plus, the stories that other people have shared make me feel better prepared for the road ahead. I learned some of the ways my disease might progress, how it feels to go through it, and what people's doctors have advised them. There's not a health plan in the world that could provide that kind of comprehensive and balanced advice."

The ThyCa Conference provided a forum for thyroid cancer patients and survivors to meet and support one another. For more than one participant, the conference was the first opportunity to speak with other survivors who understood the emotions, concerns, and challenges created by a thyroid cancer diagnosis. Above all, the 2001 ThyCa Conference was an opportunity to see people living well as thyroid cancer survivors.

More information and session notes will be posted on the ThyCa website.

THYCA CONFERENCE CARRIES ON DESPITE SEPT. 11 TRAGEDY

On Sept. 11, 2001, thousands of lives were lost in the terrorist attacks on the World Trade Center and Pentagon. As our entire nation experienced the shock of what had occurred, the volunteer organizers of the ThyCa Conference, scheduled to begin just ten days after the attack, reassessed whether the event should be held.

The volunteers agreed to carry on as scheduled. Several days prior to the event, Conference Coordinator Megan Stendebach of San Antonio, Texas, sent an e-mail to the registered participants. "While we are terribly upset about the tragedy, we feel that it is important to carry on with our plans for this supportive and educational gathering. We need to show ourselves and, in some small way, the world, that we are strong and life goes on here in the United States. The victims of this tragedy are very much in our hearts." Megan's e-mail captured the sentiments felt by many of those planning to attend. To honor those whose lives had been lost, the Conference began with a moment of silence.

While circumstances forced some cancellations among those who had been planning to attend the Conference, others were able to rearrange travel plans.

A California attendee reconsidered the logistics of how she and her husband would get to the conference, but did not consider canceling plans to attend. "I remembered how much I got out of last year's Conference, and how much better I felt after coming."

Asked if the trip was worth it, she replied, "Every minute, every penny."

THE THYCA CONFERENCE "CLASS REUNION"

During the 3 day ThyCa 2001 Conference, the atmosphere at times resembled that of a class reunion party. In addition to the many "newbies" who attended, many Conference participants were survivors and caregivers with longstanding ties to ThyCa dating back to its beginnings in 1995.

As old friends saw each other after a year-long separation, other participants finally came face to face with people whom they knew only as e-mail addresses on a thyroid cancer listserv support group.

Leah Guljord of West Melbourne, Florida, has attended all four ThyCa conferences. She came this year "to see my friends, meet the other people that I have met over the past years and to hear what new things the docs have for us."

Evelyn Gross, who facilitates the Philadelphia, Pennsylvania, ThyCa support group, met someone else with thyroid cancer for the first time at the 1999 ThyCa Conference held in Boston, Massachusetts. She has returned each year since.

Another attendee came "to learn more about medullary thyroid cancer from the experts and to get to know people I talk to online every day. The community of folks on the medullary thyroid cancer list is very supportive and this is our once-a-year opportunity to meet each other in person and turn stories into real people. The online relationships are stronger after having the chance to do some in-person bonding."

For Elizabeth Irion of Lancaster, Pennsylvania, the Conference was an opportunity to meet people with whom she had been chatting online for a long time. As a host of the AOL Thyroid Cancer Mutual Support Group, where survivors and caregivers share information and receive support, Elizabeth was finally able to put faces to names she knows from the Monday and Tuesday night chats.

These Thyca veterans are already looking forward to the class reunion of 2002!

THYCA CONFERENCE IS A FAMILY AFFAIR

A thyroid cancer diagnosis can be traumatic for the person in whom the disease is found, but family and friends are also affected. The normal routines of life are disrupted. Throughout the treatment process and the follow-up monitoring, which is a lifelong process, the individual relies on the assistance of others. Family and friends also feel the anger, fears, anxieties, frustration, hopes, and life disruptions that accompany a thyroid cancer diagnosis.

ThyCa has always recognized that the work of caregivers is as important to the recovery and well-being of thyroid cancer patients as is medical treatment. Throughout the weekend, several sessions were geared toward caregivers' needs.

In one session devoted to caregivers' issues, Mark S. Irion and Miguel Melendez, both caregivers themselves, facilitated a discussion that focused largely on coping issues. Participants shared the changes that had occurred within their families as a result of their loved ones’ thyroid cancer and how they struggled to come to terms with those changes.

While some survivors choose to attend the Conference alone to focus on themselves and their well-being, others actively encouraged their caregivers to come. Spouses, parents, adult children, siblings, cousins, and friends took part in the sessions. Survivors used the forum provided by the event to explain to their caregivers the nuances of the physical and emotional toll the disease can take.

"This year my husband came with me. The conference gave him a chance to meet everyone, too, and to hear from experts first hand rather than having everything filtered through me. ThyCa has helped him share my disease with me, first through the mailing list and now through the first hand experiences he's had at the Conference. That, in turn, has made our relationship stronger. So you could say that ThyCa is good for my marriage!" said one thyroid cancer survivor.

One caregiver in attendance commented that she returned home comforted by the idea that such a support system for survivors exists. Seeing so many survivors showed her that people can live full lives after a thyroid cancer diagnosis. Just talking to people and making a connection, she noted, was enjoyable.

CONFERENCE SESSION HIGHLIGHTS: PATIENT-PHYSICIAN COMMUNICATIONS 

Excerpt from handouts provided by Laura R. Cearnal, Patient Representative, National Institutes of Health, Maryland, and Janice Hanson, Ph.D., Uniformed Services University of the Health Sciences, Maryland

Patient Advocacy—What does a patient who advocates for himself or herself do? * Does proactive research * Prepares written questions in advance of appointments * Remembers the patient is the consumer and has options, is not trapped * Becomes empowered; is treated with respect * Listens to the doctor’s questions; they will provide valuable information * Observes his or her own body and symptoms * Coordinates his or her own medical information * Facilitates information exchange between doctors * Prepares mentally for appointments and procedures * Acknowledges the impact of an illness on one’s own life * Acknowledges that he or she is not alone * Seeks support; accepts support * Maintains a medical file * Graphs medical data * Keeps a symptom diary * Prepares a summary to share with doctors * Has realistic expectations * Has patience * Finds a new outlet * Remembers that humor is very important * Takes one step at a time * Stays patient with himself or herself * Is conscientious about medical care and recommendations

Editor’s Note: We will post this session's complete handouts on the web site. Volunteers took notes of many other sessions, too. We hope to post them on the web site soon.

AETNA FOUNDATION AWARDS THYCA GRANT By Hilory Wagner, Aetna

With great pleasure, Aetna and the Aetna Foundation presented an unrestricted educational grant to ThyCa: Thyroid Cancer Survivor’s Association (http://www.thyca.org) to support the Fourth International Thyroid Cancer Survivor’s Conference, held September 21-23, 2001 in Chevy Chase, Maryland.

This award is part of the Aetna Foundation Regional Community Grants Program, which provides support to nonprofit organizations in six regions across the country. ThyCa was one of 11 nonprofit organizations awarded a Mid-Atlantic regional grant this year. In total, the Aetna Foundation awarded $157,000 to these important organizations, including the Cystic Fibrosis Foundation, the Central West Virginia Red Cross, the American Lung Association of the District of Columbia, the Hospice of Prince George’s County and several others.

“We were pleased to see the high quality of the proposals we received and to fund a range of programs that are making a difference in the communities we serve,” said Felicia Norwood, Aetna Mid-Atlantic regional manager. “This is a wonderful opportunity for us to help support the communities where our members live and improve the quality of life for everyone.”

The mission of the Aetna Foundation Community Grants Program is to help advance Aetna’s core value of improving the quality of life in communities where our customers and employees reside, while working closely with Aetna’s business regions. Beyond financial support, Aetna seeks to build strategic partnerships with nonprofit organizations that not only share our commitment to critical social issues, but also welcome Aetna’s participation in grant-related activities. Our philanthropic activities are complemented by employees who, encouraged by Aetna Volunteer Councils, devote countless hours to soup kitchens, schools a community organizations to help those in need.

Aetna was proud to play a part in this three-day annual conference, which brought together 320 thyroid cancer survivors, family members, and distinguished speakers from 28 states, the District of Columbia, and Canada. The conference provided support and education for people at all stages of testing and treatment for thyroid cancer, as well as to their families and caregivers. The conference offered leading thyroid cancer experts, invaluable workshops, and skill-building sessions and helped build ThyCa’s outreach effort, as attendees reach a larger network of survivors in their home areas throughout the year.

THANK YOU, CONFERENCE SPONSORS!

Our special thanks to the following organizations. Your grants made the conference possible.

Aetna Foundation American Cancer Society Abbott Laboratories Genzyme Therapeutics KRONUS Monarch/Jones Pharmaceuticals

THYCA CONFERENCE 2002

After four years on the East Coast, we're heading west! The next ThyCa International Conference will be held in the Fall of 2002 in Los Angeles, California. You'll see more information about the 2002 Conference on our web site in the months to come. In the meantime, if you have any suggestions regarding sessions you would like to see, please let us know! E-mail to conference@thyca.org.

SURVIVOR’S “DRAMEDY” RAISES FUNDS FOR THYCA

"Windmills" a "dramedy," is a play by thyroid cancer survivor Jacqueline Miller of California. Following her diagnosis of papillary thyroid cancer in December 1997 as well as a total thyroidectomy and radioactive iodine therapy, Jacqueline began writing this labor of love to give back some of the kindness she received when going through her initial treatments. The play also served as a way to channel her fears and worries during her many 6-month checkups since 1998.

During its four-week run, "Windmills" played to about 400 people, many of whom were cancer patients themselves, as well as physicians, psychologists, and counselors who work with individuals dealing with cancer. The production team of 6 people and cast of 10 offered complimentary tickets to those currently going through cancer treatments. Jacqueline's surgeon even came and was so supportive of the message and cause that he asked for a copy of the play to keep! The production ultimately raised approximately $3,000 for ThyCa!

Jacqueline feels it is a true honor and joy to meet so many incredibly brave people dealing with cancer treatments. She hopes they were able to laugh even a little at the antics and experiences of the characters in "Windmills."

Jacqueline says, "I had so many people who had lost someone to cancer or had cancer themselves come up to me with tears in their eyes, to tell me 'thank you for speaking my words so well.' That truly made me and the entire cast and crew of "Windmills" so grateful to have made "Windmills" a reality."

THYCA ON E-BAY

Now you can indulge your e-Bay obsession guilt-free! Listed on Charity e-Bay as "Thyroid Survivors," ThyCa's first venture into the world of on-line bidding was a fundraising success. We need your help to do it again. If you have merchandise to offer for bidding, please contact Joni Eskenazi, ThyCa Fundraising Chair, at fundraising@thyca.org. Items may include, but are not limited to, event tickets, coins, new legal software in the original sealed package, sports memorabilia (new or vintage) and high quality books. Because of the time and labor involved in posting the items, monitoring the bidding and shipping the items, merchandise must have a minimum value of $35. All proceeds will go to ThyCa.

THYCA RESEARCH FUND

Now that we’ve told you about grants and fundraising, we’ll tell you why we’re raising money! We believe there isn’t enough funded research in thyroid cancer. Consequently, our goal is to raise enough money to fund a perpetual Thyroid Cancer Research Fund. Please give your donations, large and small, to help all of our future good health. ThyCa's mailing address is at the end of this newsletter. For more information, e-mail to boardchair@thyca.org.

BULLETIN BOARD

"Inform ~ Empower ~ Connect!" 2nd Annual Colorectal Cancer Conference for Patients/Survivors, Caregivers, and those that care for them April 19-22, 2002, in Newport Beach, California For more information, contact Colorectal Cancer Network PO Box 182, Kensington MD 20895-0182, phone 301-879-1500, e-mail to SemiColonClub@yahoo.com, web site http://www.colorectal-cancer.net

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, and communication for thyroid cancer survivors, their families, and friends. 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) 2001 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.

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.

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