ThyCa Journeys Newsletter, Fall 2002

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ThyCa JOURNEYS

Fall 2002

Support and communication for thyroid cancer survivors and families.

A free publication of ThyCa: Thyroid Cancer Survivors' Association, Inc.

www.thyca.org

IN THIS ISSUE

Editor's Note

ThyCa First Person: My Thyroid Cancer by Burton G. Rosen

Q & A with Bloom, ThyCa Board Chair

Special Thanks

ThyCa's 5th International Conference

Dinner/Grand Auction to Support Thyroid Cancer Research

ThyCa's Book Club

Invitation to Become a Member

Thyroid Cancer Awareness Week

More About This Newsletter and ThyCa

Help Us Help Each Other

EDITOR'S NOTE

Welcome to the Fall 2002 edition of Journeys. As the record-breaking

heat wave on the east coast continues, I'm trying to remind myself that

fall's cooler weather will be here soon. And I'm sure that by that time,

I'll be ready for some warm California sun. As you'll see below, ThyCa's

international conference, this year in Los Angeles, California, is fast

approaching. The list of confirmed speakers continues to grow, and this

year's conference promises to be the best yet.

This edition of Journeys focuses on some of the people who make our

organization what it is. Burton Rosen, a thyroid cancer survivor, shares

his account of diagnosis and treatment. Bloom, ThyCa's national

chairman, answers questions about his involvement in ThyCa and his

experiences as a survivor. And in a new effort to engage our readers,

we're asking you to share some of your favorite publications that have

helped you cope with ThyCa and beyond. I hope that our next edition of

Journeys will be filled with great reading suggestions.

There is also exciting news to report about our local support groups.

With the recent additions of groups in Southern Connecticut, the Twin

Cities, Houston, and Des Moines, ThyCa support groups are now in 27

states and growing! We also have members in 45 states, as well as other

countries.

Our e-mail support groups are also a " hit " and one of ThyCa's e-mail

support groups now boasts more than 750 members, with 1,700 posts in

August alone.

The ThyCa web site is also widely used and receives about 80,000 visits

each month. The web site is updated regularly. Coming soon is the

expanded third edition of the Low-Iodine Cookbook, thanks to our many

fantastic survivor chefs!

Frequent visitors may also have noted the recent addition of an article

by Yolanda Oertel, M.D., on Fine Needle Aspiration of the Thyroid. Dr.

Oertel is a member of ThyCa's Medical Advisory Council.

So as you can see, ThyCa has a lot going on. Be sure to bookmark the

web site, www.thyca.org, to stay in the loop on new ThyCa happenings.

Enjoy the newsletter, and hope to see you in L.A.!

Barbara Weinstein

Editor-in-Chief

ThyCa FIRST PERSON:

MY THYROID CANCER

By Burton G. Rosen

There I was during 1986 at a hospital for a sciatic attack. My Soul

Mate, Ruthie, insisted that they perform an extensive examination, since

I had refused to see a doctor for many years. Yes of course, Soul Mates

are always right, for they found my thyroid cancer tumor hiding under my

very stylish beard deeply imbedded in the trachea.

Well, during these past 16 years I have had two extensive surgeries, in

hospitals in two other states, and radiation at a hospital in a third

state. Three tries with radioactive iodine have not worked for me. So

here I am, my fourth bout, in a clinical trial.

Has it been tough? Yes, especially for Ruth, Gregg, Lesley, Larry and

Dylan. It is always harder for the family standing by. I know the

feeling when Ruth had a mitral valve replacement. But when I think back

over these years so many good times with family and friends, thank God,

how lucky I am. At age 73 I am looking forward to the success of this

clinical trial.

I can only say never, ever give up; there is always something positive

on the horizon.

Q & A WITH GARY BLOOM, NATIONAL CHAIRMAN

Bloom, ThyCa's Board Chair, has been involved with ThyCa since its

inception. A land resident, is a survivor of papillary

carcinoma with tall cells. 's cancer was misdiagnosed for years, and

he was incorrectly treated for sleep apnea. Since discovery of his

cancer, has had three thyroid-related surgeries, including a total

thyroidectomy and two surgeries to eliminate metastatic tumor. has

also had five radioactive iodine treatments since being diagnosed.

Currently a patient at the National Institutes of Health, is part

of a clinical study that may someday lead to more effective treatment of

thyroid cancer patients.

Journeys: What has the impact of thyroid cancer been on your life?

GB: During the time in my life when I was going through hypothyroid

testing and treatment every 6 months, thyroid cancer physically was my

life. No sooner would I feel 100% then I would begin the slide back into

hypothyroidism. The last couple of years have been easier on me

physically, especially now that I'm followed using Thyrogen instead of

going through withdrawal. I still get to go through the low-iodine diet,

the MRI, and the whole body scans, but the process is not as hard on my

family and me. Beyond that, I stopped being a workaholic for my day job

and spend more time with my family ... a reward in itself. Guess I

learned life is short, and enjoy. I also went back to my growing-up

phase of helping others by becoming active with ThyCa.

Journeys: How did you find out about ThyCa: Thyroid Cancer Survivors'

Association?

GB: I met up with the other founders of ThyCa before the organization

began. I met them through the original Internet e-mail support group.

Most of the other 16 folks instrumental in founding the organization got

together in September of 1998 at the 1st annual survivors' conference. I

wasn't able to go due to a serious illness in my wife's family. When

those folks returned home from the conference they immediately drafted

me to be part of the developing organization. When we incorporated in

March 1999, I became ThyCa's first board chair, a position I'm proud to

say I've held since.

Journeys: What do you feel you get from being part of ThyCa and its

support group?

GB: I get the feeling of belonging to a group, obviously. A group that

deals with our special, significant health issue together. Like so many

when I began down this path, I was alone. I made mistakes because I

didn't know enough. I didn't have all the answers (still don't, of

course), but now, I can reach out to others and compare notes. Beyond

that, I really enjoy offering a shoulder to the next person ... it has

been most satisfying to work with other folks to try and ease the shock

of dealing with thyroid cancer.

Working with others is made more difficult because we are sometimes told

we have 'good cancer.' I've learned that many folks don't take this

disease seriously enough because their physicians have gone to great

lengths to comfort the patient/survivor with this label.

Journeys: What do you think makes ThyCa different from other support

groups?

GB: Our people! We accomplish so much without paid employees.

Everything we accomplish happens because of volunteer enthusiasm! ThyCa

is proof that there is good on the Internet.

Journeys: What changes, if any, has ThyCa undergone in the last year?

GB: ThyCa is always changing. Last year we decided to move our annual

survivors' conference to Los Angeles, California. This was a huge step

for us away from the 'safety' of the core of volunteers on the east

coast. We knew this was a necessary step to further ThyCa's reach and

visibility. We knew we had to bring the conference to a new group of

attendees. The conference is too good an experience to not share with

everyone.

We’re getting close to the 5th Thyroid Cancer Survivors’ Conference, to

be held October 11-13 at the Los Angeles Athletic Club in Los Angeles,

California. Four weeks before the conference begins, we already have

more than 150 registered attendees. For information, please e-mail to

conference@... or to thyca@.... I hope everyone will attend.

The program is fantastic and the conference is a great way to learn and

share regarding our thyroid cancer journey.

Our visibility in the medical community continues to grow. Physicians

are telling their patients about ThyCa. This is our hope. We know that

everyone won't be interested in our services, but we hope everyone has

the opportunity to decide this individually.

Another change for ThyCa involves fundraising. ThyCa has always been

about providing services first. We don't overwhelm people with

solicitations for money. Last year we announced our intentions to raise

money to fund Thyroid Cancer Research. Our dream is to establish a

perpetuating Thyroid Cancer Research Fund. We must help ourselves!

Toward that end we will hold our First Annual Gala Dinner and Grand

Auction Fundraiser to raise money for thyroid cancer research. This

exciting and fun evening will take place at the Los Angeles Athletic

Club, Los Angeles, California, on Friday, October 11th from 6-10 p.m.

For more information, please e-mail Joni Eskenazi at jeskenazi@....

Journeys: What would be your long-term wish for ThyCa?

GB: My wish for ThyCa is that volunteers will always come forward to

help each other. Beyond that, I hope we'll fund the research that

eliminates this terrible disease.

SPECIAL THANKS TO THIS YEAR'S ThyCa BOARD MEMBERS

Bloom, Chair

Ferguson, Assistant Chair

Cherry Wunderlich, Corresponding Secretary

Leah Guljord, Recording Secretary

Ron Grafman, Treasurer

Ric Blake

Joni Eskenazi

Reiser

Betty Solbjor

Stendebach

Kurt , General Counsel

ThyCa's 5TH INTERNATIONAL CONFERENCE

ThyCa's 2002 conference is less than one month away! The three-day

supportive and educational event will draw survivors and family members

from diverse areas and will take place in Los Angeles, California,

Friday through Sunday, October 11-13. By late August registrations had

already come from 21 states, Canada, and the United Kingdom.

Sessions are scheduled to cover every type and aspect of thyroid cancer,

including testing, diagnosis, treatment, survivorship, support, and

caregivers' needs. More than 30 health professionals and thyroid cancer

experts are scheduled to attend this year's conference as presenters.

Currently scheduled presenters include:

B. Ain, M.D., Endocrinologist, University of Kentucky Medical

Center, KY

, M.D., Surgeon, National Cancer Institute, National

Institutes of Health, MD

Tina Anders, ThyCa Volunteer, Colorado

Benesch, ThyCa Volunteer, MD

Brent, M.D., Endocrinologist , UCLA School of Medicine/West Los

Angeles VA, Los Angeles, CA

Campama, Yoga Instructor, NJ

Inder Chopra, M.D., Endocrinologist, UCLA School of Medicine, Los

Angeles, CA

Clayman, D.D.S., M.D., Surgeon, University of Texas M.D.

Cancer Center, Houston, TX

, M.D., Endocrinologist, Sinai Hospital of Baltimore,

Baltimore, MD; Secretary, American Thyroid Association

, M.D., Surgeon, University of Texas M.D. Cancer

Center, Houston, TX

Alan P. Farwell, M.D., Endocrinologist, UMass Memorial Medical Center,

Worcester, MA; Chair, Patient Education and Advocacy Committee, American

Thyroid Association

Francis, M.D., Ph.D., Endocrinologist, Uniformed Services

University of the Health Sciences, MD, and Walter Medical Center,

Washington, DC

F. Gagel, M.D., Endocrinologist, University of Texas M.D.

Cancer Center, Houston, TX

Gelep, Product Manager, Genzyme Therapeutics, Cambridge, MA

Leah Giordano, ThyCa Volunteer, New York

Gross, ThyCa Volunteer, Pennsylvania

Leah Guljord, Coordinator, ThyCa Support Groups and Editor, ThyCa

Low-Iodine Cookbook, FL

Jon Guljord, ThyCa Volunteer, FL

Haugen, M.D., Endocrinologist, University of Colorado Health

Sciences Center, Denver, CO

Jerome Hershman, M.D., Endocrinologist, UCLA School of Medicine, Los

Angeles, CA

Mark Hiepler, Esq., Attorney, Insurance Issues, Hiepler & Hiepler,

Oxnard, CA

Hull, ThyCa Volunteer, California

Irion, Co-Facilitator, AOL Thyroid Cancer Mutual Support

Group, PA

Mark Irion, ThyCa Volunteer, PA

Kloos, M.D., Endocrinologist, Ohio State University, Columbus, OH

Marvin E. Krakow, Esq., Attorney, Employment Issues, Los Angeles, CA

P. Larsen, M.D., Endocrinologist, Brigham and Women’s Hospital,

Boston, MA

Lee, M.D., Ph.D., Endocrinologist, Boston Medical Center,

Boston, MA

Mandel, M.D., Endocrinologist, Hospital of the University of

Pennsylvania, Philadelphia, PA

Margouleff, M.D., Chief of Nuclear Medicine, North Shore

University Hospital, Manhasset, NY

McDermott, M.D, Endocrinologist, University of Colorado Health

Sciences Center, CO

Peggy Melton, ThyCa Volunteer, Texas

Gretchen Norling, ThyCa Volunteer, KY

Oertel, M.D., Pathologist, Armed Forces Institute of Pathology,

Washington, DC

Yolanda Oertel, M.D., Pathologist, Washington Hospital Center,

Washington, DC

Kathleen Rand, ThyCa Volunteer, NV

Vera Ray, Facilitator, ThyCa Medullary Thyroid Cancer E-Mail Support

Group, GA

D. Ringel, M.D., Endocrinologist, Washington Hospital Center,

Washington, DC

Arturo R. Rolla, M.D., Endocrinologist, Beth Israel Deaconess Medical

Center, Boston, MA

M. Sara Rosenthal, Ph.D., Author, The Thyroid Sourcebook, Ontario, Canada

J. Sarlis, M.D., Ph.D., Endocrinologist, National Institutes of

Health, Bethesda, MD

Pam Schultz, R.N., Ph.D., Program Director for Endocrinology, University

of Texas M.D. Cancer Center, Houston, TX

Rena Vassilpoulou-Sellin, M.D., Endocrinologist, University of Texas

M.D. Cancer Center, Houston, TX

Marilyn Sherman, ThyCa Volunteer, CA

I. Sherman, M.D., Endocrinologist, University of Texas M.D.

Cancer Center, Houston, TX

Singer, M.D., Endocrinologist, USC Ambulatory Care Health Center,

Los Angeles, CA; President-Elect, American Thyroid Association

Smyers, National & World Champion Triathlete, MA

Betty Solbjor, ThyCa Webmistress & Reiki Practitioner, MA

Carole Spencer, Ph.D., F.A.C.B., Professor of Medicine, University of

Southern California, Los Angeles, CA; President, American Thyroid

Association

Stendebach, Conference Coordinator and Thyroid Cancer Song

Composer, TX

R. Tuttle, M.D., Endocrinologist, Memorial Sloan-Kettering

Cancer Center, New York, NY

Van Nostrand, M.D., Nuclear Medicine Physician, Washington

Hospital Center, DC

Leonard Wartofsky, M.D., Endocrinologist, Washington Hospital Center,

Washington, DC

Rose Weckerle, ThyCa Volunteer, MI

Barbara Weinstein, Editor, ThyCa Journeys, Washington, DC

Lawrence Wood, M.D., Endocrinologist, Massachusetts General Hospital,

Boston, MA

Cherry Wunderlich, ThyCa Volunteer, MD

The conference will be held at the Los Angeles Athletic Club (LAAC),

located in the heart of L.A. The club features old-world charm and

conference participants staying on site have access to all amenities and

health club facilities. In addition to the conference itself, attendees

will have the opportunity to take in some of the sights of L.A.

including the B.B. King Blues Club, the Universal Amphitheater, Hard

Rock Cafe and Olvera Street, the " Birthplace of Los Angeles. " Olvera

Street is part of one of the oldest communities in the county and

includes a Mexican marketplace. Hockey fans can take in a game at the

Staples Center and movie fans can take a tour of Universal Studios. For

fun in the warm California sun, Venice Beach is just a short drive away.

In addition, the National Graves Disease Foundation will be holding its

annual patient/family conference on the same weekend as ThyCa's

conference, also in Los Angeles. The Foundation's website,

www.ngdf.org, has more information on the programs they have planned.

A program schedule and speaker list for the entire three-day conference

are on the web site. There are three ways to register: online at the

ThyCa web site, by U.S. mail using the downloadable form on the web

site, or at the conference itself. Registration opens each day at 8

a.m. See you there!

INVITATION TO SUPPORT OUR

DINNER/GRAND AUCTION

FOR THYROID CANCER RESEARCH

We invite you to join us in honoring our Medical Advisory Council at our

Fundraising Dinner/Grand Auction on Friday October 11, 2002, from 7 to

10 p.m., with early registration beginning at 6 p.m.

This special event takes place at the Los Angeles Athletic Club (LAAC),

our conference headquarters, the evening following the first day of the

5th International Thyroid Cancer Survivors’ Conference.

We are very pleased to announce that due to the generosity of the LAAC

and our dedicated core of volunteers, all net proceeds raised at this

milestone event will go directly to support Thyroid Cancer Research.

We hope you will participate in some or all of the following ways:

-Attend the Grand Auction. Bid on something wonderful and take it home!

-Help us with a donation for the Research Fund.

-Sponsor a friend or family member to attend.

Our web site’s Conference section has details, plus a preview of the

more than 100 terrific offerings donated by individual s and businesses

for the Benefit Auction. Items up for the silent and live auctions

include jewelry, sports equipment, home items, office supplies,

entertainment items, food, and vacation packages.

To support this fundraiser, use the form on the web site. If you have

questions, please e-mail to Joni Eskenazi at jeskenazi@.... Thanks!

ThyCa's BOOK CLUB

No, ThyCa is not striving to replace " Oprah's Book Club. " But we are

asking you to share the titles of some of the books, short stories and

easily available magazine articles that have helped you through your

survivorship.

Many cancer patients (and the world in general!) have been inspired by

Lance Armstrong's four amazing Tour de France victories and his

best-selling autobiography " It's Not About the Bike: My Journey Back to

Life. " Other books about surviving cancer include " Cancervive " by

Nessim and " Time on Fire " by Evan Handler.

Chances are if you found comfort in a good book about the cancer

experience, others will too. E-mail your suggestions to

newsletter@.... The next edition of Journeys will include some of

the books suggested by your fellow readers.

INVITATION TO BECOME A MEMBER

No one should have to face a diagnosis of thyroid cancer alone. ThyCa

welcomes everyone to use our free support services and resources.

We also welcome new members at any time. Your membership will support

ThyCa's efforts to reach other survivors and their families around the

world.

Membership is open to those with thyroid cancer, caregivers, family

members, healthcare professionals and anyone interested in any aspect of

thyroid cancer and supporting the work of the Association.

You will enable us to:

-Maintain our informative website

-Develop and assist local support groups

-Maintain email support networks

-Provide the Person-To-Person Network

-Operate a toll-free telephone number

-Serve as a link between thyroid cancer survivors and other cancer

organizations, as well as endocrine organizations

-Develop and distribute publications

-Participate at endocrine conferences

-Sponsor our annual survivors’ conference

An annual membership is $25, two-year membership is $45, and lifetime

membership is $225. The membership form and other details are available

on our web site. If you have questions, please e-mail our Membership

Team at membership@....

THYROID CANCER AWARENESS WEEK IS SEPTEMBER 16-22

Thyroid Cancer Awareness Week takes place September 16-22, 2002. Our

goal is to help educate the public about thyroid cancer and about:

-the importance of early detection, treatment, and lifelong monitoring

-the availability of free support services and educational resources

-the need for more thyroid cancer research.

ThyCa's web site <www.thyca.org> has free downloadable handouts about

thyroid cancer, the most common endocrine cancer, as well as testing,

treatment, and free support services and publications. Please use these

materials and this newsletter to help spread the word and raise

awareness, both now and throughout the year.

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©(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 © 2002 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@... or ThyCa:

Thyroid Cancer Survivors' Association, Inc. P.O. Box 1545, New York, NY

10159