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Support and communication
for thyroid cancer survivors and families.
from the Editor
This edition of Journeys features a variety of stories, including one about a family's experience with thyroid cancer. This is a sampling of the amazing examples of courage that anyone whose life has been touched by the disease has seen.
As ThyCa has grown, we have expanded our work to increase education about thyroid cancer and to fund thyroid cancer research. But at our core, ThyCa exists to support survivors and caregivers through the sharing of experiences—face to face, on-line, and in print.
The process of living with and beyond a thyroid cancer diagnosis is a rollercoaster of emotions. The overwhelming fear in diagnosis; the anger and resentment that comes with illness; the sense of determination and strength during treatment; the joy of a clean scan; and the anxiety that still accompanies a blood test after years of survivorship.
If I had the choice, I would not choose to relive my thyroid cancer diagnosis. But at the same time, many of the people to whom the disease connected me—doctors, nurses, friends, and colleagues—would not otherwise have come into my life. By sharing my rollercoaster of experiences and learning from theirs, my life has been immeasurably enriched. So I urge you, when ready, to share your thyroid cancer story—with ThyCa, family, friends and strangers.
by Lauri Huber, Morton, Illinois
What we all thought was a harmless bump that the doctor/ surgeon/ Otolaryngologist, removed from our 13-year-old son Travis’s neck was now, the doctor told us, “more complicated than we expected.” Those words flooded my mind over and over and over.
As we tucked Travis in that night, I recalled the day we brought this sweet boy of ours into this world. His name means “traveler of the crossroads” and he was living up to that as well. It was time to wait out one of the longest nights of John’s and my life.
We proceeded to schedule the next surgery. “Thyroidectomy.” Boy, I was rapidly increasing my word power: Papillary Carcinoma, Thyroidectomy, Ablation, etc.
Our family has learned to cherish each day as a precious gift. Cancer totally skews our perception. I believe for the better. Mortality is now more evident, life’s choices more relevant, and whom we choose to spend time with is viewed and treasured differently.
Travis has been very optimistic and mature in dealing with his diagnosis. We are so proud of how brave and courageous he’s been.
Cancer has made us “friends” with a lot of different people. Our voyage has included some very incredible individuals. Some are Travis’s medical team; his doctors have been great. One doctor phoned and ended up hearing all about our insurance woes and hassles. He patiently listened as I had a meltdown and offered to do what he could to straighten things out. And he did, going above and beyond the call of duty. Many of the nurses have treated Travis like a person and not just a patient. They were considerate and took my concerns seriously and therefore made a huge difference.
Cancer survivors and those who’ve gone through cancer with a loved one have offered shoulders to cry on, outstanding advice and true understanding while sharing our pain.
There have been many kind and caring people who decided to come alongside us, just to ease our journey, like the young soccer coach in town who took it upon himself and organized a fundraiser (with help from his soccer kids) to assist us in paying for medical bills.
And last but not least, we can’t forget our faithful family and friends. They brought us meals, phoned, e-mailed, stopped by, prayed for us, sent cards of well wishes, just to name a few acts of genuine love and support. All have made the voyage bearable. God has brought each of these people into our lives for a purpose. We may never know “why” this side of heaven. But, we do know that these very unfortunate circumstances have allowed us to be blessed by so many. Learning to receive the blessings has not been easy. Believe me, it’s much easier to give than to receive.
(Our thanks to Lauri for permission to publish these excerpts from her longer article about the Huber family's experience. We’re grateful that she’s become a ThyCa volunteer and is involved in ThyCa outreach in her community in Illinois)
ThyCa recently announced the expansion of our research grant program. New funds are available in 2005 to support a research project focusing on Medullary Thyroid Cancer. Medullary Thyroid Cancer topics include research on pathogenesis, clinical aspects of the disease, or treatment of Medullary Thyroid Cancer, which is one of the rarer types of thyroid cancer. The grant funds are available to researchers at any hospital or research institution.
ThyCa awarded its first research grant in 2003 and its second research grant in 2004. In 2005, ThyCa is offering two research grants.
Grant applications for the 2005 grants were submitted to the American Thyroid Association and are being reviewed by the ATA’s experts. ThyCa Board Chair Gary Bloom said, “Through expanded research, we hope to achieve our goal of a cure for all thyroid cancer and a future free of thyroid cancer."
Cover the Uninsured Week 2005 takes place May 1- 8, 2005. Activities around the USA focus on the 45 million Americans without health insurance. The week has support from a wide variety of organizations, including business, labor, faith community, medical, and other organizations. Details are at www.covertheuninsuredweek.org.
Our Thyroid Cancer Awareness Brochures featuring actress Catherine Bell are reaching people around the world—through physicians' offices, community groups, and person-to-person sharing.
By sharing her thyroid cancer story for ThyCa, Catherine Bell is greatly benefiting our public awareness and early detection messages, and is helping connect people with our free support services, publications, and educational events.
These Awareness Brochures are available, free of charge, to physicians, hospitals, community groups, and individuals.
If you would like
a brochure, please send us your mailing address. E-mail email@example.com,
fax to 1-630-604-6078, call 1-877-588-7904, or write to ThyCa Brochures,
PO Box 1545, New York, NY 10159-1545.
ThyCa’s annual Rally for Research has become a hit around the globe! Each year, people committed to fighting thyroid cancer through increased research gather for special fundraising events. Activities include car washes, bicycle rides, bake sales, marathons, golf tournaments, card parties, fashion shows, dinner parties, walks, runs and direct solicitations—all terrific ways to raise funds for research!
The 2005 Rally for Research day is Sunday May 15, 2005! If you’re not able to join in the Rally on that day, pick another day – we’re happy to include your special event as part of our 2005 Rally!
For more information, visit www.thyca.org/rally.htm.
* * * * * * * * * *
Spring 2005 featured several outstanding Rally for Research events!
Congratulations to the wonderful volunteers who organized events this spring!
Donate any time to the Rally for Research. Visit our web site for details.
* * * * * * * * *
Our Special Thanks....
.... to all the dedicated volunteers who organized wonderful Rally Events in 2004 to support ThyCa's Research Funds:
Read more about the Rally events on our web site.
MAKING THE LOW-IODINE DIET A LITTLE MORE TASTY
The low-iodine diet, recommended by thyroid cancer specialist physicians for use before radioactive iodine scans and treatment, requires that patients reduce their levels of iodine intake. Because iodine is found in many common foods as well as prepared foods, patients must often prepare their own meals.
ThyCa’s free Low-Iodine Cookbook helps those on the diet discover their inner Julia Child, with recipes for tasty appetizers, soups, entrees, desserts and snacks.
Leah Guljord, ThyCa Spacecoast Support Group Facilitator and ThyCa's Assistant Board Chair, is the cookbook’s editor. Thirty-six thyroid cancer survivors contributed delicious recipes.
ThyCa recently received the email below from Krista, who found ThyCa’s low-iodine cookbook available free for downloading atwww.thyca.org
“I just wanted
to thank ThyCa for the cookbook. I recently had to do the diet/hypothyroid
period for the THIRD and HOPEFULLY LAST time and using the cookbook
really helped me this time! My husband and I made the meatloaf, which
I ate with fresh tomatoes on top and it was excellent! We also enjoyed
the chewy oatmeal cookies, wacky cake and the basic bread recipe allowed
me to have toast and croutons! It was much less worse this time and
I am really grateful that this cookbook is out there! Thank you so
The cookbook is free. You can download it from our web site <www.thyca.org>. Our volunteers are now working on the expanded 5th edition. It will have lots of varied new recipes contributed by thyroid cancer survivors and caregivers. We’ll post it on our web site, free for downloading from anywhere in the world.
New Local ThyCa Support Groups.
ThyCa’s local support groups keep growing and growing! New groups have recently begun in Newark, Delaware; Orange County, California; Huntsville, Alabama; Harrisburg, Pennsylvania; Raleigh, North Carolina; Birmingham, Alabama; Waterloo, Iowa; Sacramento Valley, California; Springfield, Missouri; and Cincinnati, Ohio.
Interested in learning more? Visitwww.thyca.organd click on “Support Groups” to find the location nearest you!
Midwest ThyCa Workshop Draws Participants from 7 States.
Thyroid cancer patients, caregivers, and friends from 7 states attended the free one-day workshop held on April 16, 2005, in St. Louis, Missouri, sponsored by ThyCa: Thyroid Cancer Survivors' Association, Inc.
ThyCa's St. Louis Support Group co-facilitators, Theresa Missey and Sandy Triplett, together with other St. Louis and national ThyCa volunteers, organized the workshop. The more than 60 attendees ranged from children through seniors, from people diagnosed two weeks earlier to survivors of more than 30 years. They came from Arkansas, Illinois, Kentucky, Michigan, Missouri, Ohio, and Utah.
Highlights of the day included physician presentations and Ask-a-Doctor sessions led by Speakers at the St. Louis workshop included James H. Boyd, M.D., St. Louis, MO; Mary K. Debenedetti, R.N., B.S.N., Washington University St. Louis School of Medicine, St. Louis, MO; Susan Larson, M.D., Chicago, IL; Jeffrey F. Moley, M.D., Washington University St. Louis School of Medicine, St. Louis, MO ; and Irini E Veronikis, M.D., Endocrinologist, St. Louis, MO. The day’s programs also included survivor and caregiver roundtables on coping skills and well-being, led by caregivers and survivors of varied types of thyroid cancer.
Mid-Atlantic ThyCa Workshop Held in Conjunction with American Thyroid Association’s Frontiers in Thyroid Cancer Meeting.
More than 140 thyroid cancer patients, caregivers, and friends from 9 states and Alberta, Canada, attended the free one-day workshop held on April 16, 2005, in Baltimore, Maryland, sponsored by ThyCa: Thyroid Cancer Survivors' Association, Inc. Thyroid cancer patients attending ranged from children through seniors, from people diagnosed two weeks earlier to a survivor of 57 years. ThyCa volunteers from Maryland, DC, and Virginia organized the workshop.
The physician speakers included Lisa Boyle, M.D.,Washington Hospital Center, Washington, D.C.; James A. Fagin, M.D., University of Cincinnati College of Medicine, Cincinnati, OH; Gary Francis, M.D., Uniformed Services University of the Health Sciences, Bethesda, MD; Matthew I. Kim, M.D., Johns Hopkins University School of Medicine, Baltimore, MD; Richard T. Kloos, M.D.,The Ohio State University, Columbus, OH; Steven K. Libutti, M.D., National Cancer Institute, National Institutes of Health, Bethesda, MD; Donald Margouleff, M.D., North Shore University Hospital, Manhasset, NY; Matthew D. Ringel, M.D.,The Ohio State University, Columbus, OH; Martin Schlumberger, M.D.,University of Paris –Sud and Institut Gustave Roussy, France, and his associate; and R. Michael Tuttle, M.D.,Endocrinologist, Memorial Sloan-Kettering Cancer Center, New York, NY.
ThyCa Exhibits Around the USA:
This spring ThyCa outreach volunteers are handling exhibits at these and other medical meetings, public forums, and community awareness events:
ThyCa volunteers handling these exhibits and representing ThyCa at these events include Joel Amromin, Gary Bloom, Leah Giordano, Elaine Grant, Evelyn Gross, Leah Guljord, Jessica Jones, Rebecca Lord, Julia Pierson, Lynda Richards, Lexi Robbins, Gail Schuler, Barb Statas, Jaime Toth, Barbara Weinstein, and Cherry and John Wunderlich.
Our exhibits help introduce health care professionals, people with thyroid cancer and their loved ones, and the public to our free awareness materials, support services, and educational events. We thank the organizations that sponsor these events for your support of education and support for thyroid cancer patients and the public.
ThyCa Comments at FDA Workshop on Therapeutic Equivalence of Levothyroxine Sodium Products.
On May 23, 2005,staff of the U.S. Food and Drug Administration (FDA) met with representatives of the American Thyroid Association (ATA), American Association of Clinical Endocrinologists (AACE), and The Endocrine Society (TES). ThyCa presented a statement in support of the concerns of the ATA, AACE, and TES about the FDA method for determining therapeutic equivalence. The ThyCa statement also the noted advice of specialists to avoid changing brands without being re-tested for TSH level. For more details, see our web site’s News section.
Research Funding Advocacy.
ThyCa volunteer Julia Pierson is following cancer research funding issues through the collaborative One Voice Against Cancer as well as other organizations concerned with cancer and cancer research. We'll add more information on our web site. Thank you, Julia!
ATA Alliance for Patient Education
ThyCa is a member of the American Thyroid Association's Alliance for Patient Education and a participant in public forums on thyroid disease held in connection with major medical meetings over the last several years. In April, May, and June 2005 we are participating in public education forums in connection with meetings of the American Thyroid Association, American Association of Clinical Endocrinologists, and The Endocrine Society.
New Magnets and Ribbon Pins Raise Awareness.
Our Thyroid Cancer Awareness Ribbon Pins and Magnets are big hits. The new magnets, available for sale atwww.thyca.orgare 3.5 inches by 8 inches. The new Magnet Ribbon highlights the three thyroid cancer awareness colors: blue/purple, pink, and teal. Thyroid cancer survivor Cherie LC selected this unique combination of colors more than six years ago as part of her volunteer contributions to ThyCa. The colors represent the throat energy center, spiritual influences in healing, and healing and the heart. Visit our web site for details or to order the magnets and pins.
E-Mail Support Groups Grow.
ThyCa’s e-mail support groups now have more than 5,000 participants! With nine groups to choose from, find the one that’s right for you by logging on towww.thyca.organd clicking on “Support Groups.”
ThyCa's Web Site
Have you visited the ThyCa web site lately? It keeps growing every week. Our web site now has more than 500 pages, plus links to lots more.
ThyCa’s 8th International Conference is still months away--but you don’t have to wait until October to meet up with other survivors, caregivers, doctors, and other experts! ThyCa hosted two regional one-day workshops in April and two more in May.
presentations by physician specialists while learning and sharing
with other thyroid cancer survivors and families in roundtables. These
educational and supportive days welcome people at all stages of testing,
treatment, and follow-up for all types of thyroid cancer. Caregivers,
friends, and everyone interested are also welcome.
Florida Thyroid Cancer Survivors' Workshop
On Saturday, May 7, 2005, the Florida Thyroid Cancer Survivors' Workshop takes place place at the HealthPark, Lee Memorial Health System, Fort Myers, Florida.
The workshop is sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. The workshop coordinator is Jan Scheuerman of Cape Coral, Fla., the facilitator of the ThyCa Suncoast Support Group.
The physician speakers include Ernest L. Mazzaferri, M.D., F.A.C.P., and Robert C. Smallridge, M.D.
Ernest L. Mazzaferri, M.D., F.A.C.P., Endocrinologist, is President-Elect of the American Thyroid Association, the professional association of clinicians and researchers involved in thyroid research and treatment. Dr. Mazzaferri is a specialist in the diagnosis and treatment of thyroid cancer. He has been involved in thyroid cancer care and research for many years. He is Professor of Medicine at the University of Florida in Gainesville, Florida, a staff member of the University of Florida Shands Cancer Center, and Emeritus Professor and Chair of Internal Medicine at The Ohio State University. In 1999 he chaired the National Cancer Center Network panel that issued the most up-to-date guidelines for the investigation and treatment of thyroid nodules and cancer. He is the author of numerous publications for professional audiences.
Robert C. Smallridge, M.D., Endocrinologist, is Professor of Medicine at Mayo Medical School, as well as Chair of the Endocrinology Division at the Mayo Clinic in Jacksonville, Florida. A graduate of the Medical College of Virginia, he completed further training at Grady-Emory University Veterans Affairs Hospitals and Grady Memorial Hospital, Atlanta, Georgia and Walter Reed Army Medical Center, Washington, D.C. The author of many publications, he also is a member of the American Thyroid Association's Publications Committee.
Visit the ThyCa web site <www.thyca.org> for further details.
New Jersey ThyCa Workshop Takes Place Saturday, May 21, 2005
The workshop is being held at The Fitness Connection (formerly The Center for Health & Fitness) in Vineland, NJ 08360
The workshop coordinator is Louise Samuel, Co-Facilitator of the ThyCa Southern New Jersey Support Group.
The workshop features presentations by physician specialists, and question and answer sessions plus survivors and caregiver roundtables. This educational and supportive day is for people at all stages of testing, treatment, and follow-up for all types of thyroid cancer. The workshop also welcomes caregivers, friends, and everyone interested.
Physician speakers include Jay J. Constantine, M.D., Clinical Senior Instructor, Hahnemann University Hospital, Philadelphia, PA, and Clinical Assistant Professor, Temple University School of Medicine. Also speaking at the workshop is Joseph W. Fanelle, M.D., Medical Director, Department of Radiation Oncology, South Jersey Regional Cancer Center and Chairman of South Jersey Healthcare, Vineland, NJ
Survivor/caregiver roundtables are also on the day’s program.
ThyCa’s web site at www.thyca.org has further details.
Since the last issue of ThyCa Journeys, we are pleased to report that five thyroid cancer specialists have been named to ThyCa’s Medical Advisory Council. The Council now has 22 members who provide valuable counsel and support ThyCa's goals in education, treatment and research. The newest members of ThyCa's Medical Advisory Council are:
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.
Help Raise Awareness!
FREE AWARENESS MATERIALS AVAILABLE YEAR-ROUND
ThyCa sponsors Thyroid Cancer Awareness Month. We initiated it in 2000 as Thyroid Cancer Awareness Week and expanded it to include the whole month of September.
Please help spread the word. Tell everyone you know about thyroid cancer and ThyCa.
Share the free awareness materials from our web site. Or contact us and we’ll send a free packet to you. Thank you so much for your support!
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) 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.
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, as well as about our conference and other special events.
We want your comments on this newsletter! Do you like it? What would you like us to print? Send your comments to firstname.lastname@example.org or ThyCa: Thyroid Cancer Survivors' Association, Inc. P.O. Box 1545, New York, NY 10159-1545