ThyCa NEWS NOTES – March 2009

IN THIS ISSUE

Six FREE Spring Workshops — You’re Invited

We’re proud to announce that six free regional workshops are scheduled around the United States for Spring 2009.

These free events offer terrific opportunities to learn from experts and meet and share experiences, and support with other thyroid cancer survivors and caregivers.

  • You may come for part or all of a workshop.
  • Free. Register either online at www.thyca.org or onsite at the workshop.
  • For more information, e-mail to thyca@thyca.org or call 1-877-588-7904.
  • Visit ThyCa’s web site <www.thyca.org> for further details about the speakers, programs, and directions.

Midwest 5th Thyroid Cancer Survivors’ Workshop:
Saturday, April 18, 2009
8 a.m. – 4:30 p.m.
Columbia, Missouri

Medical Professional Speakers:

  • – From University of Missouri Hospital, Columbia, MO:
    • Paul Dale, M.D., Surgical Oncologist
    • Debra Koivunen, M.D., Endocrine Surgeon
    • Daniel Miller, Medical Student
    • Greg Renner, M.D., Head and Neck Surgeon
    • Debbie Ritchie, MSN, APRN, BC, FNP, Advanced ENT Nurse Practitioner
    • Troy Scheidt, M.D., ENT Physician
    • Amolak Singh, M.D., Nuclear Medicine
    • Robert Zitsch, M.D., Head and Neck Surgeon
  • From Johns Hopkins University School of Medicine, Baltimore, MD:
    • Paul Ladenson, M.D., Endocrinologist

Topics: Thyroid Cancer: Questions & Answers • Thyrogen Update • Thyroid Cancer Surgery • Medullary Thyroid Cancer: An Overview and Discussion • Talk with a Pharmacist • Enjoying the Low-Iodine Diet • The Doctor – Patient Relationship • Survivor/Caregiver Support Group Roundtables

New Jersey 3rd Thyroid Cancer Survivors’ Workshop:
Saturday, April 18, 2009
9 a.m. – 3 p.m.
Vineland, New Jersey

Featured Speakers:

  • Andrew Steven Heller, M.D., Surgeon, South Jersey Healthcare/Regional Medical Center in Vineland, NJ, and Kessler Memorial Hospital, Hammonton, NJ.
  • Glenda Smith, M.D. Attending Radiation Oncologist, South Jersey Healthcare System since 2000. Previously she spent 9 years at Temple University as Assistant Professor of Radiation Oncology.
  • Brittany Raup, Personal Trainer, South Jersey Healthcare Fitness Connection.

Topics: Thyroid Cancer Questions & Answers • Thyroid Cancer Surgery • Post Operative Surveillance & Follow-Up Testing • Dealing with Fatigue • Thyrogen • The Doctor-Patient Relationship & Patient Advocacy • Survivor/Caregiver Support Group Roundtables

Vermont/New England Thyroid Cancer Survivors’ Workshop
Saturday, May 2, 2009
Stowe, Vermont
In Conjunction with the Stowe Weekend of Hope

Featured Speakers:

  • Beatriz Tendler, M.D., Endocrinologist, University of Connecticut Medical Center
  • Indukala Doddamane, M.D., Nuclear Medicine Physician, Yale University Medical Center

More details coming soon.

Mid-Atlantic 8th Annual Thyroid Cancer Survivors’ Workshop:
Saturday, May 16, 2009
8 a.m. – 5 p.m.
Takoma Park, Maryland (near Washington, DC, and I-495)

Featured Speakers:

  • Kenneth D. Burman, M.D., Endocrinologist, Washington Hospital Center
  • Nancy Carroll, M.D., Endocrine Surgeon, Washington Hospital Center
  • Matthew I. Kim, M.D., Endocrinologist, Johns Hopkins University School of Medicine
  • Gigi Meinecke, D.M.D., F.A.G.D., Dentist, University of Maryland School of Dentistry
  • Douglas Van Nostrand, M.D., Nuclear Medicine Physician, Washington Hospital Center
  • Marina Zemskova, M.D., Endocrinologist, National Institutes of Health
  • More to be confirmed

Topics: Thyroid Cancer Questions & Answers • Thyroid Cancer Surgery • Radioactive Iodine • Follow-Up Testing in the First Year and Over the Long Term • Living with Thyroid Cancer • Being in a Clinical Trial: Patient’s Perspective • Thyrogen • The Doctor-Patient Relationship & Patient Advocacy • Survivor/Caregiver Support Group Roundtables

San Diego/Southern California Thyroid Cancer Survivors’ Workshop:
Saturday, May 16, 2009
8:30 a.m. – 1 p.m.
San Diego, California
Co-Sponsored by University of California, San Diego, Medical Center and ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Featured Speakers from University of California, San Diego, Medical Center.

  • Ernest Belezzuoli, M.D., Nuclear Medicine Physician
  • Michael Bouvet, M.D., Surgeon
  • Kevin Brumund, M.D., Surgeon
  • Charles Choe, M.D., Endocrinologist
  • James McCallum, M.D., Endocrinologist
  • Deborah Oh, M.D., Endocrinologist
  • Robert Weisman, M.D., Surgeon.

Topics: Introduction/Overview of thyroid cancer • Thyroid ultrasound for diagnosis and followup • Thyroid hormone replacement issues for patients • Neck dissection for thyroid cancer: When do lymph nodes need to be removed? • Radioactive iodine ablation: why, when, who, and how much? • Complications of thyroid surgery • Medullary Thyroid Cancer and MEN2 • New treatment options for thyroid cancer.

Texas/Southwest 3rd Annual Thyroid Cancer Survivors’ Workshop:
Saturday, May 16, 2009
Dallas, Texas

Speakers and Topics to be announced soon.

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Support Group Meetings – Welcome and Invitation

Every month, more than 60 thyroid cancer support groups hold meetings. Support group meetings are open to everyone whose lives have been touched by thyroid cancer.

The meetings offer wonderful opportunities to meet others in person and share experiences, strength, and hope while learning from others with varied situations with their thyroid cancer.

We’re adding new groups regularly, and welcome the newest groups,

  • Dayton, Ohio
  • Newfoundland and Labrador, Canada
  • Marlborough, Massachusetts
  • Greater Lehigh Valley, Bethlehem, Pennsylvania

Click here for a complete list of groups, contact information, and meeting schedules:

www.thyca.org/sg/. Or, if no internet access, call: 877-588-7904

If you’re interested in starting a group in your area, contact support_coor@thyca.org.

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Cancer’s Effect On My Life GoalsBy Travis Huber of Illinois. Excerpted from a longer essay.

Cancer has helped me try harder at my goals in life and it taught me a very important lesson. The most important experience in my life, in which I had no control over, was when I was diagnosed with Thyroid Cancer at age 13. The words that you have cancer struck deeper than any words had ever before. They stabbed into the heart of my dreams like a knife.

They said I would be really exhausted and not have much energy after the surgery. The fact of not being able to have the energy to do sports and have fun all summer at the age of thirteen was not a fun idea. I was not about to let my summer be wasted. I was determined to go to the high school soccer camp that summer.

I went to that soccer camp and worked harder than I ever had before in my life. No one even knew I had just gotten out of surgery. No one helped me and no one gave me any sympathy. I beat my body until exhaustion while in the back of my mind I told my self if I can survive the camp I would defeat cancer. So that’s what I did. I ran my body until it ached and wanted to quit but I still woke up every day at six a.m. to ride my bike across town to the camp. I kept moving forward. There was no other direction but forward; there never is in life.

God taught me a very important lesson with cancer — no matter what happens life can never take away your will to move forward. No other direction but forward its all you can do when life has you down or when you’re on top of the world. In my life this lesson has taught me not to give up on my goals in life to strive for what I deem is important and always keep moving forward.

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Our Free Guestbook

It’s quick and easy to sign up to receive our free online newsletter, plus announcements of ThyCa events and activities. It’s a great way to stay connected to the thyroid cancer community, and to stay up to date on changes in treatments and testing methods, especially if you’re a long-term survivor.

Just fill out our Guestbook form.

To protect each person’s privacy, the mailing list is for the sole use of ThyCa: Thyroid Cancer Survivors’ Association, Inc., and its affiliates. ThyCa does not ever sell, share, or give away any contact information.

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My Experience with CancerBy Brent Lutz, 3-time cancer survivor

Cancer is not something to be taken lightly. It has had a very profound effect on my life. It ruined my plans for after high school. I had always dreamt of joining the military. However, my battle with cancer caused me to become medically disqualified from any and all military service. I was forced to search for other career opportunities.

Radiation and chemotherapy treatment were by far the most difficult parts of dealing with Rhabdomyosarcoma. I was diagnosed with this uncommon type of cancer in February of 1994 before my 5th birthday. I am plagued by the effects of the radiation treatment daily. I lost the use of my right eye due to radiation retinopathy. My thyroid gland was rendered useless. As a result, I am permanently on a thyroid supplement and I must regularly take testosterone medication to ensure that puberty takes place naturally. In addition, I would eventually develop thyroid cancer.

At the age of 12, my thyroid gland became cancerous. The gland was removed and I had radioactive iodine. Radiation treatment had also weakened the structure of my teeth and in the summer of 2006, all of my teeth were removed to make room for implants. Although I was given temporary implants and dentures, they were so painful that I spent roughly two-thirds of my senior year going to school without any teeth. I would not be done with the process until just shortly before my high school graduation in June of 2007.

In addition to this, in February, 2007, I had a thyroid cancer reoccurrence. Combined with the stress of the denture process, and the stress of senior year, this nearly pushed me to the breaking point, but I had no intention of giving in. I fought through it all and had a clean scan in March of 2008. I truly believe that if something doesn’t kill you, it makes you stronger.

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Dentists Support Early Detection

Until we can achieve our ultimate goal of a world without thyroid cancer, our dream and goal is finding all thyroid cancer at Stage I, when it’s easiest to treat.

To achieve this goal, we encourage health care professionals to include a neck check during routine visits, to detect thyroid nodules.

We want to thank the Regional Academy of General Dentistry for DC, Delaware, Maryland and Virginia, with the leadership of Dr. Charles Doring of Rockville, Maryland, for making exhibit space available to ThyCa at their recent meeting in Baltimore. ThyCa representatives Camille Humbles, Deanie Leonard and Gary Bloom handled this exhibit.

While most thyroid nodules are benign, the ones that are cancerous are usually treatable when found early. Dentists have an important role to play in finding thyroid nodules as well as other nodules in the head and head areas. We greatly appreciate this support of awareness and early detection.

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Pediatric Backpacks Reach Families Around the World

Most recently, the free pediatric backpacks have gone to families with a 10-year-old daughter with thyroid cancer in California, the family of a teen with thyroid cancer in Maryland, and the family of a child with thyroid cancer in Michigan.

Since this project began two years ago, backpacks have reached and benefited families throughout the United States, as well as Canada, Philippines, and United Kingdom. Our thanks to Tim Clark of Maine for initiating this important project, and everyone whose generous donations make possible the Pediatric Backpack Project as well as all our free support, outreach, and services.

Read more about Pediatric Thyroid Cancer, as well as the Backpack Project, here.

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ThyCa Exhibits at Major Medical Meetings

As part of our outreach to the medical community, this winter ThyCa has had exhibits at major physicians’ meetings, including the American Thyroid Association National Thyroid Cancer Workshop and the Annual Meeting of the National Comprehensive Cancer Network.

Our Thanks to the sponsors for providing exhibit space and to ThyCa volunteers Christine Ciletti, ThyCa South Florida Support Group Co-Facilitator, and Judy, Linda, Mark, Marta, and Martha, for representing ThyCa at these meetings.

Throughout the year, ThyCa is happy to mail free materials in bulk to health care professionals, hospitals, clinics, and community groups. Our mutual goal is the well-being of all patients and families, with free support and education available to everyone.

For free materials, contact us at thyca@thyca.org or call 1-877-588-7904.

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What’s New on the Web Site?

Our web site has more than 650 pages of content. More than 50 distinguished physicians plus numerous other specialists provide ongoing input and review. We greatly appreciate the wonderful support of these medical specialists.

We update and expand the web site every week. Thank you to our Web team, Betty Solbjor and Joel Amromin; our Publications Committee members; and our Medical Reviewers.

Visit us often for the latest information updates, the schedules of local support group meetings, and news about special events, or to get involved.

And let us know if you have ideas for additional web site content, as well as additional questions to be answered by physicians. E-mail your ideas to thyca@thyca.org. This is our web site, and it benefits from everyone’s contribution. It’s also a great way to start being involved!

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Become a ThyCa Member!

Help us sustain, strengthen, and extend our services. We invite you to join ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Your membership dues will support ThyCa’s efforts to reach and serve other survivors and their families around the world.

You may join as a one-year member ($25), two-year member ($45), or lifetime member ($225).

For our secure online Membership form and our mailed Membership form, visit our Membership page.

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Low-Iodine Recipe of the Month

Making No-Knead Bread
Contributed by Nan Fremont of Maryland

Nan learned about this bread from New York Times food columnist Mark Bittman and Jim Lahey of the Sullivan Street Bakery in Manhattan, NY.

Ingredients:
3 cups of regular all-purpose flour
1/4 teaspoon instant yeast
1 and 1/4 teaspoon non-iodized salt
Corn meal, wheat bran or flour for dusting

In a large bowl mix 3 cups of all-purpose flour, 1/4 teaspoon instant yeast and 1 and 1/4 teaspoon salt. Add 1 1/2 cups water and stir briefly so it comes together into sticky dough. Don’t knead! Cover and let it rest for at least 12 hours at a warm room temperature.

Preheat the oven to 500 or even 515 degrees as well as a heavy 6 to 8 quart covered pot (cast iron, pyrex, or enamel).

The dough’s surface will have bubbles. Dump the dough onto a floured board. The stringy texture is from the gluten. Sprinkle the dough with flour and pat it lightly into a circle. Fold the edges to the center a couple of times to make a ball. Put the dough seam-side down on to a tea towel dusted with wheat bran, cornmeal or flour, and sprinkle some on top.

Invert the dough into the heated pot, cover it with the lid and bake for thirty minutes. Take the lid off and bake for another twenty minutes until the crust is nice and brown. Turn the bread out of the pot and let it cool.

Nan writes: “First, thanks for your work on the cookbook. I eat a mostly vegan diet usually, and I found the veggie, bean, lentil, grain and salad stuff great. Especially helpful were tips on freezing meals and components ahead of time.”

“I was diagnosed and treated a year ago, and am coming up on my first year whole body scan, started thinking about food prep in advance.”

Thank you, Nan! We’ll let people know about this recipe in the next edition of the FREE Downloadable Low-Iodine Cookbook.

We invite everyone to discover 30 delicious bread recipes in the free ThyCa Cookbook. Regular breads, specialty breads, quick breads and muffins, and more. Some are made with breadmaking machines. All the recipes are the favorites of some of our ThyCa volunteers, who are sharing them with everyone, to make the low-iodine diet easy and tasty.

Download the 6th edition of the Low-Iodine Cookbook, with more than 250 favorite recipes from more than 100 generous volunteers. The Cookbook is also available in Spanish

This free cookbook is a wonderful help when you’re preparing to receive radioactive iodine for treatment or testing. The recipes are also great for family meals and for potlucks, any time.

If you’d like to contribute your favorite recipe or tip to the cookbook’s next edition, send it to recipes@thyca.org.

One-Page Summary- Low-Iodine Diet Guidelines: English  Spanish

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Volunteers Step Up Support for 2009 Rally for Research

Thanks to generous contributions and special fundraising events, ThyCa will award new thyroid cancer research grants in support of our goal of cures for all thyroid cancer and a future free of thyroid cancer, for the 7th year in a row.

Special thanks to the volunteers who have organized special events for April. Two examples are:

On Saturday, April 25, 2009, Ken Pelt is celebrating his 50th Birthday with a fundraiser Casino Night in Wisconsin. “Raise the Stakes in the Fight Against Thyroid Cancer” will start at 6 p.m. at Davian’s Banquet & Conference Center in Menomonee Falls, Wisconsin. Ken will accept donations to raise much needed funds for thyroid cancer research.

On Sunday, April 26, 2009, Chris and Sal Prestano are hosting the Butterfly Effect: Brunch and Fundraiser in Atlantic City starting at 12:30 p.m. to raise much needed funds for thyroid cancer research. You’re welcome to participate and can register for the event by going to: http://www.butterflyeffect09.org/atlanticcity.htm or by making a donation in honor of this fun and important event.

Thank you so much, Ken, Chris, and Sal, for your terrific support! Please let us know about your fundraising event.

Everyone is invited to support these events, which combine fun, fundraising, and support of our research mission. You may donate online in tribute to a special event, and note the event in the tribute line on the form. There are also other ways to support the Rally for Research and the quest for cures.

For details about the Rally for Research, these and other special events, ThyCa’s past and future Research Grants, and ways to support the Rally, visit the Rally for Research page

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Welcome New Board Member Louise Samuel

We are pleased to welcome longtime ThyCa Volunteer Louise Samuel of Pennsylvania to the ThyCa Board of Directors. Many of you have met Louise, her husband Bob, and their daughter Kim at our conferences and workshops. They’ve been enthusiastic ThyCa volunteers for many years. Louise and Kim are the Co-Facilitators of the ThyCa Southern New Jersey Support Group and organizers of the New Jersey Thyroid Cancer Survivors’ Workshop, being held this spring on Saturday, April 18.

In addition to her involvement with our support services and events, Louise is active in our Publications Committee and also, from her experience and perspective as caregiver, is coordinating the development of the Caregivers’ Web site to be added to www.thyca.org. Welcome, Louise!

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Thank You, Leah Guljord

ThyCa: Thyroid Cancer Survivors’ Association, Inc., is proud to name Leah Guljord as a Board Member Emeritus in recognition of her many years of outstanding service and contributions to ThyCa as board member, in addition to her numerous other ThyCa roles. You all know Leah as editor of our free downloadable Low-Iodine Cookbook, to which she has contributed many of her own wonderful recipes.

In addition, Leah coordinates our Membership Committee, encouraging people to become ThyCa members to help sustain and strengthen our services, and our Spirit Items Committee. Each year many thousands of new people wear and give the Thyroid Cancer Awareness Wristbands, Pins, Shirts, and other spirit items, thereby helping others become aware of thyroid cancer and the importance of early detection and treatment, as well as the availability of free support services and educational opportunities. Behind the scenes, Leah also maintains our mailing lists and distributes messages, helping spread the word about services, events, and free resources for the public and for everyone whose life has been touched by thyroid cancer. We are pleased to honor Leah in this way.

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Cure Today Magazine Article Focuses on Thyroid Cancer

The latest issue of Cure Today Magazine has an article about thyroid cancer, titled “The Good Cancer?” noting that this term really doesn’t fit thyroid cancer. We’re pleased to see that the article emphasizes how varied the situations are with thyroid cancer, and its emphasis on the key role of clinical trials for finding new treatments for the many people whose thyroid cancer does not respond to the usual treatments.

The article features ThyCa Volunteer Julia McGuire and also includes a note about ThyCa, to help connect people with our free services and resources. The article also quotes two of ThyCa’s medical advisors, Stephanie Lee, M.D,, Ph.D., of Boston University Medical Center, and Steven I. Sherman, M.D., of the University of Texas M.D. Anderson Cancer Center. ThyCa helped provide information and interview suggestions . We welcome media contacts and are glad to arrange interviews and provide information for media coverage of this important topic.

You can read the online article at:http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/983

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Want To Volunteer?

We welcome new volunteers at any time. To learn about volunteer opportunities, visit our Volunteer page. You can sign-up to volunteer online using our guestbook.

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Thank You From ThyCa!

We believe that no one should have to be alone when facing thyroid cancer.

Our free support services are offered with this as our main goal.

We thank everyone for giving your time and talents to making possible our free services, publications, and events.

We’re grateful to you for reaching out to others worldwide, to help connect them with ThyCa’s many free support services and educational resources.

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You’re Invited To These Upcoming Thyroid Cancer Events!

  • Thyroid Cancer Support Group Meetings in Your Community
  • Free One-Day Regional Workshops. Watch the web site www.thyca.org for details. Workshops are planned for:
    • – Columbia, Missouri
    • Dallas, Texas
    • San Diego, California
    • Southern New Jersey
    • Stowe, Vermont
    • Takoma Park, Maryland, near Washington, DC
    • with more possibilities …
  • The 12th International Thyroid Cancer Survivors’ Conference
    October 16-18, 2009
    Boston, Massachusetts
    Sheraton Ferncroft Hotel in Danvers
    Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Visit our Conferences page for details. Download the conference flyer and help spread the word.

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Every Day…

Every day, thousands of people with thyroid cancer, and their families, receive support, education, and hope from ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Your generous support is what makes it possible to sustain, strengthen, and expand our services and outreach.

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Ask ThyCa

If you have questions about thyroid cancer, please send them to thyca@thyca.org and we’ll answer your question in an upcoming newsletter as well as adding to our web site content.

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About ThyCa NEWS NOTES
Copyright (c) 2009 ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Thank you to our writing, editing, and proofreading team for this issue of the newsletter: Nan Fremont, Leah Guljord, Lauri Huber, Travis Huber, Brent Lutz, Pat Paillard, Cherry Wunderlich, and Gary Bloom.

Your suggestions for articles are welcome. The deadline for articles and news items is the first day of each month.

Please share News Notes with your family and friends. For permission to reprint in another electronic or print publication, please contact us at outreach@thyca.org.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a national non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals.

We are dedicated to support, education, and communication for thyroid cancer survivors, their families and friends, as well as to public awareness for early detection, treatment, and lifetime health monitoring, and to thyroid cancer research fundraising and research grants.

Contact us for free awareness materials and information about our free services and special events. E-mail thyca@thyca.org, call 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit our website..

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is pleased to announce that six distinguished physicians have been named to its Medical Advisory Council, which now has 28 members.

These specialists are involved in thyroid cancer treatment and research at major centers in several states and France. They include two endocrinologists, two medical oncologists, and two surgeons,

  • Bryan McIver, M.B., Ch.B., Ph.D., Endocrinologist, chairs the Thyroid Group within the Division of Endocrinology at Mayo Clinic in Rochester, Minnesota. Dr. McIver directs a research laboratory and has extensive experience treating patients with aggressive cancers such as anaplastic thyroid cancer and other advanced thyroid cancers.
  • Mira Milas, M.D., Endocrine Surgeon, Cleveland Clinic Foundation, Cleveland, Ohio, is also Associate Professor at the Cleveland Clinic Lerner College of Medicine. She is also involved in research as well as in training other medical professionals. She served on the faculty for the course Advances in Diagnostic and Interventional Endocrine Neck Ultrasound, sponsored by the American Association of Clinical Endocrinologists.
  • Scot C. Remick, M.D., Medical Oncologist, is Director of the Mary Babb Randolph Cancer Center at West Virginia University, Morgantown, West Virginia, following his work with numerous cancer clinical trials at the Case Comprehensive Cancer Center, Cleveland, Ohio. He currently directs a Phase III study assessing a potential new treatment for anaplastic thyroid cancer.
  • Martin J. Schlumberger, M.D., Institut Gustave Roussy, University Paris Sud, Paris, France, is Professor of Oncology and Chairman of the Department of Nuclear Medicine and Endocrine Oncology, where he is involved in treatment and research related to advanced thyroid cancer.
  • Manisha H. Shah, M.D., Medical Oncologist, Ohio State University, Columbus, Ohio, is involved in research and clinical trials of new treatments for medullary and anaplastic thyroid cancer, and for metastatic papillary and follicular thyroid cancer unresponsive to radioiodine.
  • Samuel A. Wells, M.D., Surgeon and specialist in Medullary Thyroid Cancer, is Professor of Medicine at Washington University School of Medicine in St. Louis, Missouri, as well as Executive Director of the International Thyroid Oncology Group, following his prior positions at Duke University School of Medicine, Durham, North Carolina.

The 28 members of ThyCa’s Medical Advisory Council are world- recognized experts in the field of thyroid cancer. The advisors provide valuable counsel and support ThyCa’s goals in education, treatment, and research.

Also on the Medical Advisory Council are:

  • Kenneth D. Burman, M.D., Endocrinologist, Washington Hospital Center, Washington, DC
  • Mark S. Chambers, D.M.D., M.S., Dentist/Oral Oncologist, University of Texas M.D. Anderson Cancer Center, Houston, TX
  • Jeffrey A. Cooper, M.D., Nuclear Medicine Physician, Huron Consulting Group, Washington, DC
  • Robert F. Gagel, M.D., Endocrinologist, University of Texas M.D. Anderson Cancer Center, Houston, TX
  • Janis I. Halzel, Pharm.D., Pharmacist, Halzel and Associates, Denver, CO
  • Bryan R. Haugen M.D., Endocrinologist, University of Colorado Health Sciences Center, Denver, CO
  • Paul W. Ladenson, M.D., Endocrinologist, Johns Hopkins Medical Institutions, Baltimore, MD
  • Stephanie L. Lee, M.D., Ph.D., Endocrinologist, Boston Medical Center, Boston, MA
  • Donald Margouleff, M.D., Nuclear Medicine Physician, North Shore University Hospital, Manhasset, NY
  • Ernest L. Mazzaferri, M.D., Endocrinologist, University of Florida Shands Cancer Center, Gainesville, FL
  • Jeffrey F. Moley, M.D., Surgeon, Washington University in St. Louis, School of Medicine, St. Louis, MO
  • David Myssiorek, M.D., Otolaryngologist, New York University Clinical Cancer Center, New York, NY
  • Yolanda C. Oertel, M.D., Cytopathologist, Washington Hospital Center, Washington, DC
  • Matthew D. Ringel, M.D., Endocrinologist, Ohio State University Comprehensive Cancer Center, Columbus, OH
  • Arturo R. Rolla, M.D., Endocrinologist, Beth Israel Deaconess Medical Center, Boston, MA
  • Pamela Schultz, Ph.D., R.N., M.S., Nursing Professor/Researcher, New Mexico State University, Las Cruces, NM
  • Steven I. Sherman, M.D., Endocrinologist, University of Texas M.D. Anderson Cancer Center, Houston, TX
  • Peter A. Singer, M.D., Endocrinologist, University of Southern California Keck School of Medicine, Los Angeles, CA
  • Monica C. Skarulis, M.D., Endocrinologist, National Institutes of Health, Bethesda, MD
  • Carole A. Spencer, Ph.D., F.A.C.B., Thyroglobulin Researcher, University of Southern California Endocrine Services Laboratory, Los Angeles, CA
  • R. Michael Tuttle, M.D., Endocrinologist, Memorial Sloan-Kettering Cancer Center, New York, NY
  • Douglas Van Nostrand, M.D., Nuclear Medicine Physician, Washington Hospital Center, Washington, DC

The Medical Advisors page linked from ThyCa’s web site Home Page gives the names, specialties, and affiliations of all the Medical Advisory Council members: http://www.thyca.org/medical_advisors.htm

More than 50 distinguished specialists provide ongoing review and input for ThyCa’s web site and materials. The web site (www.thyca.org) has more than 650 pages of thyroid cancer information, numerous free downloadable publications, connections with support services and support group meetings, workshop and conference announcements, and other resources.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a national nonprofit 501(c) (3) organization of thyroid cancer survivors, families, and health care professionals, advised by internationally recognized thyroid cancer specialists. The organization is dedicated to support, education, and communication for thyroid cancer survivors, their families and friends.

ThyCa also sponsors Thyroid Cancer Awareness Month, year-round awareness activities, and thyroid cancer research fundraising and research grants.

The 12th International Thyroid Cancer Survivors’ Conference will take place in Boston, Massachusetts on October 16-18, 2009.

For more information about ThyCa’s free support services, education, publications, spring workshops, and annual international conference, 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.

In this issue:

Five FREE Spring Workshops — Preview

Five workshops are scheduled around the United States for Spring 2009.

These free events offer terrific opportunities to learn from experts and meet other thyroid cancer survivors and caregivers.

  • You may come for part or all of a workshop.
  • Free. Register either online or onsite at the workshop.
  • For more information, e-mail to thyca@thyca.org or call 1-877-588-7904.
  • Visit ThyCa’s web site for further details about the speakers, programs, and directions.

Midwest 5th Thyroid Cancer Survivors’ Workshop:

Saturday, April 18, 2009
8 a.m – 4:30 p.m.
Columbia, Missouri

Medical Professional Speakers:

  • From University of Missouri Hospital, Columbia, MO – Paul Dale, M.D., Surgical Oncologist, Debra Koivunen, M.D., Endocrine Surgeon, Daniel Miller, Medical Student, Greg Renner, M.D., Head and Neck Surgeon, Debbie Ritchie, MSN, APRN, BC, FNP, Advanced ENT Nurse Practitioner, Troy Scheidt, M.D., ENT Physician, Amolak Singh, M.D., Nuclear Medicine, and Robert Zitsch, M.D., Head and Neck Surgeon
  • From Johns Hopkins University School of Medicine, Baltimore, MD – Paul Ladenson, M.D., Endocrinologist
  • Topics: Thyroid Cancer: Questions & Answers • Thyrogen Update • Thyroid Cancer Surgery • Medullary Thyroid Cancer: An Overview and Discussion • Talk with a Pharmacist • Enjoying the Low-Iodine Diet • The Doctor – Patient Relationship • Survivor/Caregiver Support Group Roundtables

New Jersey 3rd Thyroid Cancer Survivors’ Workshop:

Saturday, April 18, 2009
9 a.m. – 3 p.m.
Vineland, New Jersey

Speakers and Topics to be announced soon.

Mid-Atlantic 8th Annual Thyroid Cancer Survivors’ Workshop:

Saturday, May 16, 2009
8 a.m – 5 p.m.
Takoma Park, Maryland (near Washington, DC, and I-495)

Physician Speakers Already Confirmed from National Institutes of Health, Bethesda, MD, and Washington Hospital Center, Washington, DC; more to be confirmed

 

San Diego/Southern California Thyroid Cancer Survivors’ Workshop:
Saturday, May 16, 2009
8:30 a.m. – 1 p.m.
San Diego, California
Co-Sponsored by University of California, San Diego, Medical Center and ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Physician Speakers from University of California, San Diego, Medical Center. Ernest Belezzuoli, M.D., Nuclear Medicine Physician, Michael Bouvet, M.D., Surgeon, Kevin Brumund, M.D., Surgeon, Charles Choe, M.D., Endocrinologist, James McCallum, M.D., Endocrinologist, Deborah Oh, M.D., Endocrinologist, Robert Weisman, M.D., Surgeon.

Topics:

  • Introduction/Overview of thyroid cancer
  • Yhyroid ultrasound for diagnosis and followup
  • Thyroid hormone replacement issues for patients
  • Neck dissection for thyroid cancer: When do lymph nodes need to be removed?
  • Radioactive iodine ablation: why, when, who, and how much?
  • Complications of thyroid surgery
  • Medullary Thyroid Cancer and MEN2
  • New treatment options for thyroid cancer.

 

Texas/Southwest 3rd Annual Thyroid Cancer Survivors’ Workshop:
Saturday, May 16, 2009
Dallas, Texas

Speakers and Topics to be announced soon.

top of page

Speaker on Bone Health and Thyroid Cancer

Errol Rushovich, M.D., To Speak on Bone Health Related to Thyroid Cancer at the ThyCa Baltimore Thyroid Cancer Support Group Meeting on Saturday, March 14, 2009, from 10:30 a.m. to Noon
FREE

Bone Health Related to Thyroid Cancer is the topic of a physician’s talk on Saturday, March 14, 2009, in Baltimore, Maryland, at the monthly meeting of the ThyCa Baltimore Support Group of ThyCa: Thyroid Cancer Survivors’ Association, Inc.

The seminar takes place from 10:30 a.m. to noon at The Cancer Institute at Sinai Hospital, 2402 West Belvedere Avenue, located in suburban Baltimore, Maryland, north of the city, inside Interstate 695, just west of Interstate 83, and near Northern Parkway.

The free meeting is open to everyone interested in thyroid cancer, as well as family members and friends.

Guest Speaker is Errol Rushovich, M.D., Medical Director for The Center for Bone Health and Division of Endocrinology at Mercy Hospital in Baltimore. He will speak and answer questions.

Dr. Rushovich is Board Certified in Endocrinology and Internal Medicine and has a special interest in endocrine disorders and implementing preventive strategies. He completed his residency at Mt. Sinai Hospital in Chicago and his fellowship training at the University of Michigan at Ann Arbor. He also held a faculty appointment at Michigan State University.

For more information, contact Vanda White, ThyCa Baltimore Support Group Facilitator at 410-653-3883 or e-mail to Baltimore-MD@thyca.org or to thyca@thyca.org.

top of page

Support Group Meetings – Welcome and Invitation.

Every month, more than 60 thyroid cancer support groups hold meetings. Support group meetings are open to everyone whose lives have been touched by thyroid cancer.

The meetings offer wonderful opportunities to meet others in person and share experiences, strength, and hope while learning from others with varied situations with their thyroid cancer.

We’re adding new groups regularly, and welcome the newest group, the Newfoundland and Labrador ThyCa Group, which will start meeting in St. John’s, Newfoundland, Canada, in April 2009.

Click here for a complete list of groups, contact information, and meeting schedules or, if no internet, call: 877-588-7904

If you’re interested in starting a group in your area, contact support_coor@thyca.org.

top of page

New Locations Added for Phase 3 Clinical Trial for Advanced Medullary Thyroid Cancer

Many investigator locations have recently begun recruiting patients for the XL184 phase 3 clinical trial for advanced Medullary Thyroid Cancer (MTC). This clinical trial is designed specifically for MTC. The drug was “designed” to strategically target different pathways by which MTC cells survive, multiply, or even thrive, while minimizing side effects of the drug that might be caused by unbeneficial traits of the drug.

You can find this and all clinical trials through ThyCa’s Clinical Trials page. This page links to the National Institutes of Health database of clinical trials. It also gives helpful background information about clinical trials, as well as checklists and questions developed by ThyCa volunteers who have taken part in clinical trials.

top of page

Our Free Guestbook

It’s quick and easy to sign up to receive our free online newsletter, plus announcements of ThyCa events and activities. It’s a great way to stay connected to the thyroid cancer community, and to stay up on changes in treatments and testing methods, even if you’re a long-term survivor.

To protect each person’s privacy, the mailing list is for the sole use of ThyCa: Thyroid Cancer Survivors’ Association, Inc., and its affiliates. ThyCa does not ever sell, share, or give away any contact information.

top of page

What’s New on the Web Site?

Our web site has more than 650 pages of content. More than 50 distinguished physicians plus numerous other specialists provide ongoing input and review. We greatly appreciate the wonderful support of these medical specialists.

We update and expand the web site every week. Thank you to our Web team, Betty Solbjor and Joel Amromin; our Publications Committee members; and our Medical Reviewers.

Visit www.thyca.org often for the latest information updates, the schedules of local support group meetings, and news about special events, or to get involved.

And let us know if you have ideas for additional web site content, as well as additional questions to be answered by physicians. E-mail your ideas to thyca@thyca.org. This is our web site, and it benefits from everyone’s contribution. It’s also a great way to start being involved!

top of page

Become a ThyCa Member!

Help us sustain, strengthen, and extend our services. We invite you to join ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Your membership dues will support ThyCa’s efforts to reach and serve other survivors and their families around the world.

You may join as a one-year member ($25), two-year member ($45), or lifetime member ($225).

Click here or our secure online Membership form and out mailed Membership form.

top of page

Low-Iodine Recipe of the MonthContributed by Dana R.

Grandma Sylvia’s Chocolate Macaroons

12 ounces semi-sweet chocolate chips (any without milk fat or salt)
4 egg whites
1 cup sugar
2 teaspoons vanilla
8 ounces shredded coconut (find coconut with no salt)
Pinch of noniodized salt

Preheat oven to 350 degrees. Melt chocolate in double boiler. Whip 4 egg whites until stiff. Put mixer on a slow speed. Add one cup sugar (very gradually!). Add vanilla and salt to the mix. Then the melted chocolate.Then the whole package of shredded coconut. Place a brown paper grocery bag (logo side down) or some parchment paper on top of a cookie sheet. Place dollops of mixture on bag or parchment paper. Bake for 15 minutes. Let cool.

Dana says, “This is a Passover recipe from my grandmother. The only alteration for low-iodine is using unsweetened coconut. These are much better than store bought macaroons, and they freeze well after they are baked.”

Thank you, Dana! Your recipe will be added to the next edition of the FREE Downloadable Low-Iodine Cookbook.

Download the 6th edition of the Low-Iodine Cookbook, with more than 250 favorite recipes from more than 100 generous volunteers.

This free cookbook is a wonderful help when you’re preparing to receive radioactive iodine for treatment or testing. The recipes are also great for family meals and for potlucks, any time.

If you’d like to contribute your favorite recipe or tip to the cookbook’s next edition, send it torecipes@thyca.org.

top of page

I Am a Thyroid Cancer SurvivorBy Pat Paillard

I never really thought about my thyroid. I never knew all that it did for me. It controls metabolism and that involves a lot of bodily functions. I didn’t know it could get cancer.

Then, all of a sudden, a doctor told me I had a nodule that was suspicious for papillary carcinoma. Well, I know what carcinoma is and all of a sudden my life changed.

First, I think, you are scared that you have cancer. Then you wonder what it’s going to take to get rid of it forever. You know you will be faced with tests, surgery, treatments, and lots of doctor visits, but nobody tells you all that is involved with thyroid cancer. I was told that my parathyroids could be injured during the thyroidectomy but I would be able to take calcium and Vitamin D for a while to correct that problem if it happened. Well, mine were injured and I have a lifetime of taking lots of calcium and prescription Vitamin D. Sometimes I even get tingling in my feet, hands and lips due to the hypoparathyroidism but nobody told me about that either.

There are a lot of uncertainties with cancer. I can only really speak for the ones involving my kind of cancer. Usually with the most common types of thyroid cancer (papillary and follicular and their variants) you don’t need external radiation, but you may have to take a radioactive material internally. You have to swallow pills or drink a liquid in high doses to kill the remnant thyroid/cancer cells left from your surgery. You become radioactive!

If you have papillary or follicular thyroid cancer, you either receive injections of recombinant TSH (Thyrogen) or else you have to be totally off your thyroid replacement medicine for a while before the radiation (RAI) treatment and scans. If you have to go off your thyroid hormone replacement, you may become so tired you can’t function properly. No one ever told me about this either.

After you have had the surgery, RAI, scans, and replacement therapy you must be screened for the rest of your life to see if the cancer has recurred and if so you go through perhaps surgery, scans, TAI and more treatment again.

We can beat IT but it would be nice to know exactly what we are to face in doing so before we go through any of it.

It’s nice to know that ThyCa is there for us, the thyroid cancer survivors. We can turn to ThyCa for information, support, and much more in our journey with Thyroid Cancer.

Seek out ThyCa, use all the services, come to the conferences, and meet the people involved in this organization.. You will be glad you did. You will become an informed patient and not someone who is frightened of every aspect of this disease. Don’t go through it alone!

top of page

Want To Volunteer?

We welcome new volunteers at any time. To learn about volunteer opportunities, visit our Volunteer page. You can sign-up to volunteer online using our guestbook.

top of page

Thank You From ThyCa!

We believe that no one should have to be alone when facing thyroid cancer.

Our free support services are offered with this as our main goal.

We thank everyone for giving your time and talents to making possible our free services, publications, and events.

We’re grateful to you for reaching out to others worldwide, to help connect them with ThyCa’s many free support services and educational resources.

top of page

You’re Invited To These Upcoming Thyroid Cancer Events!

  • Thyroid Cancer Support Group Meetings in Your Community
  • • Free One-Day Regional Workshops. Watch the web site for details. Workshops are planned for:
    • – Columbia, Missouri
    • Dallas, Texas
    • San Diego, California
    • Southern New Jersey
    • Takoma Park, Maryland, near Washington, DC
    • with more possibilities …
  • The 12th International Thyroid Cancer Survivors’ Conference
    October 16-18, 2009
    Boston, Massachusetts
    Sheraton Ferncroft Hotel in Danvers
    Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Visit the website for details. Download the conference flyer and help spread the word.

top of page

Every Day…

Every day, thousands of people with thyroid cancer, and their families, receive support, education, and hope from ThyCa: Thyroid Cancer Survivors’ Association, Inc..

Your generous support is what makes it possible to sustain, strengthen, and expand our services and outreach.

top of page

Ask ThyCa

If you have questions about thyroid cancer, please send them to thyca@thyca.org and we’ll answer your question in an upcoming newsletter as well as adding to our web site content.

top of page

About ThyCa NEWS NOTES
Copyright (c) 2009 ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Thank you to our writing, editing, and proofreading team for this issue of the newsletter: Leah Guljord, Pat Paillard, Dana R., Cherry Wunderlich, and Gary Bloom.

Your suggestions for articles are welcome. The deadline for articles and news items is the first day of each month.

Please share News Notes with your family and friends. For permission to reprint in another electronic or print publication, please contact us at outreach@thyca.org.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a national non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals.

We are dedicated to support, education, and communication for thyroid cancer survivors, their families and friends, as well as to public awareness for early detection, treatment, and lifetime health monitoring, and to thyroid cancer research fundraising and research grants.

Contact us for free awareness materials and information about our free services and special events. E-mail thyca@thyca.org, call 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit the web site.

ThyCa: Thyroid Cancer Survivors’ Association, Inc., is pleased to announce the formation of Nevada’s second thyroid cancer support group.

The free ThyCa Reno Support Group will meet on the second Tuesday of each month from noon to 1:30 pm starting on Tuesday, March 10, 2009, in the Institute for Cancer Conference Room, 1155 Mill Street, Reno, Nevada.

The monthly meetings are free and open to people at all phases of testing, treatment, and follow-up for thyroid cancer, as well as their family members and friends.

Marta Brown and Marion Hammond, the facilitators of the ThyCa Reno, Nevada, Thyroid Cancer Support Group, invite thyroid cancer patients, families, and friends to attend meetings. To find out more about the new group, contact Marta Brown by phone at 775-677-9710 or 775-815-0739 or Marion Hammond at 775-560-3185, or e-mail to Reno-NV@thyca.org.

This new thyroid cancer support group has its own web page on the support groups section of the ThyCa web, on this page: www.thyca.org/sg/nv_reno.htm. More than 70 other ThyCa support groups, including a group in Las Vegas, Nevada, are also available in communities coast to coast in the United States, as well as in Costa Rica and the Philippines.

Many more free support services and educational resources are also sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc., a national nonprofit 501(c)(3) organization of thyroid cancer survivors, families, and health care professionals, advised by internationally recognized thyroid cancer specialists. ThyCa also sponsors thyroid cancer research fundraising and research grants.

For more information about ThyCa’s free year-round support services, education, publications, and awareness materials, as well as regional workshops and the annual International Thyroid Cancer Survivors’ Conference, e-mail to thyca@thyca.org, call toll-free 1-877-588-7904, write to PO Box 1545, New York, NY 10159-1545 USA, or visit the ThyCa web site.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org) is pleased to announce the formation of the ThyCa Chandler/East Valley, Arizona Support Group.

The free support group meets on the second Thursday of each month from 6:30 to 8:30 p.m. at the Cancer Center at Chandler Regional Medical Center, (Education Room, first floor),1875 West Frye Road, Chandler, Arizona.

The group welcomes people at all phases of testing, treatment, and follow-up for thyroid cancer, as well as their family members and friends.

Joan Hedman is the group’s facilitator. For more information about the group, e-mail Joan Hedman at Chandler-AZ@thyca.org, call 480-917-6930, or visit the group’s web page.. The web page includes transportation directions a link to a map.

Free thyroid cancer support groups are also available in Scottsdale, Arizona and other communities coast to coast in the United States, as well as in in Costa Rica and Philippines. Visit http://www.thyca.org/sg/local.htm to find all groups’ web pages, plus their meeting schedules and more details.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a national nonprofit 501(c) (3) organization of thyroid cancer survivors, families, and health care professionals, advised by internationally recognized thyroid cancer specialists. The organization is dedicated to support, education, and communication for thyroid cancer survivors, their families and friends.

ThyCa also sponsors Thyroid Cancer Awareness Month, year-round awareness activities, and thyroid cancer research fundraising and research grants.

The 12th International Thyroid Cancer Survivors’ Conference will take place in Boston, Massachusetts on October 16-18, 2009.

For more information about ThyCa’s free support services, education, publications, spring workshops, and annual international conference, 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.

In this issue:

Five FREE Spring Workshops — Preview

Five workshops are scheduled around the United States for Spring 2009.

These free events offer terrific opportunities to learn from experts and meet other thyroid cancer survivors and caregivers.

  • You may come for part or all of a workshop.
  • Free. Register either online or onsite at the workshop.
  • For more information, e-mail to thyca@thyca.org or call 1-877-588-7904.
  • Visit ThyCa’s web site for further details about the speakers, programs, and directions.

Midwest 5th Thyroid Cancer Survivors’ Workshop:

Saturday, April 18, 2009
8 a.m – 4:30 p.m.
Columbia, Missouri

Medical Professional Speakers:

  • From University of Missouri Hospital, Columbia, MO – Paul Dale, M.D., Surgical Oncologist, Debra Koivunen, M.D., Endocrine Surgeon, Daniel Miller, Medical Student, Greg Renner, M.D., Head and Neck Surgeon, Debbie Ritchie, MSN, APRN, BC, FNP, Advanced ENT Nurse Practitioner, Troy Scheidt, M.D., ENT Physician, Amolak Singh, M.D., Nuclear Medicine, and Robert Zitsch, M.D., Head and Neck Surgeon
  • From Johns Hopkins University School of Medicine, Baltimore, MD – Paul Ladenson, M.D., Endocrinologist
  • Topics: Thyroid Cancer: Questions & Answers • Thyrogen Update • Thyroid Cancer Surgery • Medullary Thyroid Cancer: An Overview and Discussion • Talk with a Pharmacist • Enjoying the Low-Iodine Diet • The Doctor – Patient Relationship • Survivor/Caregiver Support Group Roundtables

New Jersey 3rd Thyroid Cancer Survivors’ Workshop:

Saturday, April 18, 2009
9 a.m. – 3 p.m.
Vineland, New Jersey

Speakers and Topics to be announced soon.

Mid-Atlantic 8th Annual Thyroid Cancer Survivors’ Workshop:

Saturday, May 16, 2009
8 a.m – 5 p.m.
Takoma Park, Maryland (near Washington, DC, and I-495)

Physician Speakers Already Confirmed from National Institutes of Health, Bethesda, MD, and Washington Hospital Center, Washington, DC; more to be confirmed

San Diego/Southern California Thyroid Cancer Survivors’ Workshop:
Saturday, May 16, 2009
8:30 a.m. – 1 p.m.
San Diego, California
Co-Sponsored by University of California, San Diego, Medical Center and ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Physician Speakers from University of California, San Diego, Medical Center. Ernest Belezzuoli, M.D., Nuclear Medicine Physician, Michael Bouvet, M.D., Surgeon, Kevin Brumund, M.D., Surgeon, Charles Choe, M.D., Endocrinologist, James McCallum, M.D., Endocrinologist, Deborah Oh, M.D., Endocrinologist, Robert Weisman, M.D., Surgeon.

Topics:

  • Introduction/Overview of thyroid cancer
  • Yhyroid ultrasound for diagnosis and followup
  • Thyroid hormone replacement issues for patients
  • Neck dissection for thyroid cancer: When do lymph nodes need to be removed?
  • Radioactive iodine ablation: why, when, who, and how much?
  • Complications of thyroid surgery
  • Medullary Thyroid Cancer and MEN2
  • New treatment options for thyroid cancer.

Texas/Southwest 3rd Annual Thyroid Cancer Survivors’ Workshop:
Saturday, May 16, 2009
Dallas, Texas

Speakers and Topics to be announced soon.

top of page

Speaker on Bone Health and Thyroid Cancer

Errol Rushovich, M.D., To Speak on Bone Health Related to Thyroid Cancer at the ThyCa Baltimore Thyroid Cancer Support Group Meeting on Saturday, March 14, 2009, from 10:30 a.m. to Noon
FREE

Bone Health Related to Thyroid Cancer is the topic of a physician’s talk on Saturday, March 14, 2009, in Baltimore, Maryland, at the monthly meeting of the ThyCa Baltimore Support Group of ThyCa: Thyroid Cancer Survivors’ Association, Inc.

The seminar takes place from 10:30 a.m. to noon at The Cancer Institute at Sinai Hospital, 2402 West Belvedere Avenue, located in suburban Baltimore, Maryland, north of the city, inside Interstate 695, just west of Interstate 83, and near Northern Parkway.

The free meeting is open to everyone interested in thyroid cancer, as well as family members and friends.

Guest Speaker is Errol Rushovich, M.D., Medical Director for The Center for Bone Health and Division of Endocrinology at Mercy Hospital in Baltimore. He will speak and answer questions.

Dr. Rushovich is Board Certified in Endocrinology and Internal Medicine and has a special interest in endocrine disorders and implementing preventive strategies. He completed his residency at Mt. Sinai Hospital in Chicago and his fellowship training at the University of Michigan at Ann Arbor. He also held a faculty appointment at Michigan State University.

For more information, contact Vanda White, ThyCa Baltimore Support Group Facilitator at 410-653-3883 or e-mail to Baltimore-MD@thyca.org or to thyca@thyca.org.

top of page

Support Group Meetings – Welcome and Invitation.

Every month, more than 60 thyroid cancer support groups hold meetings. Support group meetings are open to everyone whose lives have been touched by thyroid cancer.

The meetings offer wonderful opportunities to meet others in person and share experiences, strength, and hope while learning from others with varied situations with their thyroid cancer.

We’re adding new groups regularly, and welcome the newest group, the Newfoundland and Labrador ThyCa Group, which will start meeting in St. John’s, Newfoundland, Canada, in April 2009.

Click here for a complete list of groups, contact information, and meeting schedules or, if no internet, call: 877-588-7904

If you’re interested in starting a group in your area, contact support_coor@thyca.org.

top of page

New Locations Added for Phase 3 Clinical Trial for Advanced Medullary Thyroid Cancer

Many investigator locations have recently begun recruiting patients for the XL184 phase 3 clinical trial for advanced Medullary Thyroid Cancer (MTC). This clinical trial is designed specifically for MTC. The drug was “designed” to strategically target different pathways by which MTC cells survive, multiply, or even thrive, while minimizing side effects of the drug that might be caused by unbeneficial traits of the drug.

You can find this and all clinical trials through ThyCa’s Clinical Trials page. This page links to the National Institutes of Health database of clinical trials. It also gives helpful background information about clinical trials, as well as checklists and questions developed by ThyCa volunteers who have taken part in clinical trials.

top of page

Our Free Guestbook

It’s quick and easy to sign up to receive our free online newsletter, plus announcements of ThyCa events and activities. It’s a great way to stay connected to the thyroid cancer community, and to stay up on changes in treatments and testing methods, even if you’re a long-term survivor.

To protect each person’s privacy, the mailing list is for the sole use of ThyCa: Thyroid Cancer Survivors’ Association, Inc., and its affiliates. ThyCa does not ever sell, share, or give away any contact information.

top of page

What’s New on the Web Site?

Our web site has more than 650 pages of content. More than 50 distinguished physicians plus numerous other specialists provide ongoing input and review. We greatly appreciate the wonderful support of these medical specialists.

We update and expand the web site every week. Thank you to our Web team, Betty Solbjor and Joel Amromin; our Publications Committee members; and our Medical Reviewers.

Visit www.thyca.org often for the latest information updates, the schedules of local support group meetings, and news about special events, or to get involved.

And let us know if you have ideas for additional web site content, as well as additional questions to be answered by physicians. E-mail your ideas to thyca@thyca.org. This is our web site, and it benefits from everyone’s contribution. It’s also a great way to start being involved!

top of page

Become a ThyCa Member!

Help us sustain, strengthen, and extend our services. We invite you to join ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Your membership dues will support ThyCa’s efforts to reach and serve other survivors and their families around the world.

You may join as a one-year member ($25), two-year member ($45), or lifetime member ($225).

Click here or our secure online Membership form and out mailed Membership form.

top of page

Low-Iodine Recipe of the MonthContributed by Dana R.

Grandma Sylvia’s Chocolate Macaroons

12 ounces semi-sweet chocolate chips (any without milk fat or salt)
4 egg whites
1 cup sugar
2 teaspoons vanilla
8 ounces shredded coconut (find coconut with no salt)
Pinch of noniodized salt

Preheat oven to 350 degrees. Melt chocolate in double boiler. Whip 4 egg whites until stiff. Put mixer on a slow speed. Add one cup sugar (very gradually!). Add vanilla and salt to the mix. Then the melted chocolate.Then the whole package of shredded coconut. Place a brown paper grocery bag (logo side down) or some parchment paper on top of a cookie sheet. Place dollops of mixture on bag or parchment paper. Bake for 15 minutes. Let cool.

Dana says, “This is a Passover recipe from my grandmother. The only alteration for low-iodine is using unsweetened coconut. These are much better than store bought macaroons, and they freeze well after they are baked.”

Thank you, Dana! Your recipe will be added to the next edition of the FREE Downloadable Low-Iodine Cookbook.

Download the 6th edition of the Low-Iodine Cookbook, with more than 250 favorite recipes from more than 100 generous volunteers.

This free cookbook is a wonderful help when you’re preparing to receive radioactive iodine for treatment or testing. The recipes are also great for family meals and for potlucks, any time.

If you’d like to contribute your favorite recipe or tip to the cookbook’s next edition, send it torecipes@thyca.org.

top of page

I Am a Thyroid Cancer SurvivorBy Pat Paillard

I never really thought about my thyroid. I never knew all that it did for me. It controls metabolism and that involves a lot of bodily functions. I didn’t know it could get cancer.

Then, all of a sudden, a doctor told me I had a nodule that was suspicious for papillary carcinoma. Well, I know what carcinoma is and all of a sudden my life changed.

First, I think, you are scared that you have cancer. Then you wonder what it’s going to take to get rid of it forever. You know you will be faced with tests, surgery, treatments, and lots of doctor visits, but nobody tells you all that is involved with thyroid cancer. I was told that my parathyroids could be injured during the thyroidectomy but I would be able to take calcium and Vitamin D for a while to correct that problem if it happened. Well, mine were injured and I have a lifetime of taking lots of calcium and prescription Vitamin D. Sometimes I even get tingling in my feet, hands and lips due to the hypoparathyroidism but nobody told me about that either.

There are a lot of uncertainties with cancer. I can only really speak for the ones involving my kind of cancer. Usually with the most common types of thyroid cancer (papillary and follicular and their variants) you don’t need external radiation, but you may have to take a radioactive material internally. You have to swallow pills or drink a liquid in high doses to kill the remnant thyroid/cancer cells left from your surgery. You become radioactive!

If you have papillary or follicular thyroid cancer, you either receive injections of recombinant TSH (Thyrogen) or else you have to be totally off your thyroid replacement medicine for a while before the radiation (RAI) treatment and scans. If you have to go off your thyroid hormone replacement, you may become so tired you can’t function properly. No one ever told me about this either.

After you have had the surgery, RAI, scans, and replacement therapy you must be screened for the rest of your life to see if the cancer has recurred and if so you go through perhaps surgery, scans, TAI and more treatment again.

We can beat IT but it would be nice to know exactly what we are to face in doing so before we go through any of it.

It’s nice to know that ThyCa is there for us, the thyroid cancer survivors. We can turn to ThyCa for information, support, and much more in our journey with Thyroid Cancer.

Seek out ThyCa, use all the services, come to the conferences, and meet the people involved in this organization.. You will be glad you did. You will become an informed patient and not someone who is frightened of every aspect of this disease. Don’t go through it alone!

top of page

Want To Volunteer?

We welcome new volunteers at any time. To learn about volunteer opportunities, visit our Volunteer page. You can sign-up to volunteer online using our guestbook.

top of page

Thank You From ThyCa!

We believe that no one should have to be alone when facing thyroid cancer.

Our free support services are offered with this as our main goal.

We thank everyone for giving your time and talents to making possible our free services, publications, and events.

We’re grateful to you for reaching out to others worldwide, to help connect them with ThyCa’s many free support services and educational resources.

top of page

You’re Invited To These Upcoming Thyroid Cancer Events!

  • Thyroid Cancer Support Group Meetings in Your Community
  • • Free One-Day Regional Workshops. Watch the web site for details. Workshops are planned for:
    • – Columbia, Missouri
    • Dallas, Texas
    • San Diego, California
    • Southern New Jersey
    • Takoma Park, Maryland, near Washington, DC
    • with more possibilities …
  • The 12th International Thyroid Cancer Survivors’ Conference
    October 16-18, 2009
    Boston, Massachusetts
    Sheraton Ferncroft Hotel in Danvers
    Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Visit the website for details. Download the conference flyer and help spread the word.

top of page

Every Day…

Every day, thousands of people with thyroid cancer, and their families, receive support, education, and hope from ThyCa: Thyroid Cancer Survivors’ Association, Inc..

Your generous support is what makes it possible to sustain, strengthen, and expand our services and outreach.

top of page

Ask ThyCa

If you have questions about thyroid cancer, please send them to thyca@thyca.org and we’ll answer your question in an upcoming newsletter as well as adding to our web site content.

top of page

About ThyCa NEWS NOTES
Copyright (c) 2009 ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Thank you to our writing, editing, and proofreading team for this issue of the newsletter: Leah Guljord, Pat Paillard, Dana R., Cherry Wunderlich, and Gary Bloom.

Your suggestions for articles are welcome. The deadline for articles and news items is the first day of each month.

Please share News Notes with your family and friends. For permission to reprint in another electronic or print publication, please contact us at outreach@thyca.org.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a national non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals.

We are dedicated to support, education, and communication for thyroid cancer survivors, their families and friends, as well as to public awareness for early detection, treatment, and lifetime health monitoring, and to thyroid cancer research fundraising and research grants.

Contact us for free awareness materials and information about our free services and special events. E-mail thyca@thyca.org, call 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit the web site.

In 2009, for the seventh year in a row, ThyCa: Thyroid Cancer Survivors’ Association, Inc. will award new grants for thyroid cancer research, ThyCa Executive Director Gary Bloom has announced.

ThyCa will award two new grants in 2009. Each grant will be for 2 years. One grant will support research on follicular-cell-derived thyroid cancer, including papillary, follicular, anaplastic, and variants. The other grant will support research on medullary thyroid cancer.

The ThyCa Research grants are open to all researchers and institutions worldwide.

An independent expert panel of the American Thyroid Association (ATA) will select the grant recipients. ATA is the professional association of clinicians and researchers concerned with thyroid diseases.

The deadline for submission of a proposal summary to the ATA is January 31, 2009. The ATA Research Committee will rank proposals according to their scientific merit. ATA will notify the authors of selected proposals by early March and will invite them to submit complete grant applications.

“We are grateful all our generous donors and volunteers for making these grants possible,” said ThyCa Executive Director Gary Bloom. “More thyroid cancer research is urgently needed, to better understand thyroid cancer and find cures for all thyroid cancer. We greatly appreciate the ATA’s support in our research grant process.”

The ThyCa grants, begun in 2003, are the first-ever thyroid cancer research grants to be funded entirely by thyroid cancer patients, caregivers, and friends.

ThyCa has awarded its grants to researchers at the following institutions:

  • Cochin Institut, Paris, France
  • Harvard Medical School, Boston, Massachusetts
  • Johns Hopkins University School of Medicine, Baltimore, Maryland
  • Ohio State University, Columbus, Ohio and Medical University of Gdansk, Poland
  • Memorial Sloan-Kettering Cancer Center, New York, New York
  • Rush-Presbyterian-St. Luke’s Medical Center, Chicago, Illinois
  • University Hospital Duesseldorf in Duesseldorf, Germany
  • University of California Los Angeles (UCLA)/Veterans Affairs West Los Angeles Health Care System, Los Angeles, California.
  • University of Texas M.D. Anderson Cancer Center in Houston, Texas

ThyCa has two Research Funds. One fund supports research of follicular-cell-derived thyroid cancer, including papillary, follicular, anaplastic, and variants. The other research fund supports research of medullary thyroid cancer.

To find out more about the ThyCa Research Funds and annual Rally for Research, visit http://www.thyca.org/researchfund.htm.

ThyCa invites everyone to join us in our quest to find a cure for all thyroid cancer.

ThyCa is a national nonprofit 501 (c)(3) service organization of thyroid cancer survivors, families, and health care professionals advised by nationally recognized experts on thyroid cancer. ThyCa is dedicated to education, support, communication, awareness for early detection, and thyroid cancer research fundraising and research grants.

ThyCa sponsors a broad array of free support services and resources, available worldwide. These include ThyCa’s award-winning educational web site with more than 650 pages, the ThyCa Person To Person Network providing one-to-one support matched by type of thyroid cancer, more than 70 local support groups, 10 e-mail support groups for different types and situations with thyroid cancer, and a toll-free survivors’ telephone number.

Further resources include a free monthly online newsletter, the free downloadable Low-Iodine Cookbook, free patient information packets, numerous materials including the cookbook in Spanish, and seminars, one-day educational workshops, and the annual International Thyroid Cancer Survivors’ Conference.

The 12th International Thyroid Cancer Survivors’ Conference will take place October 16-18, 2009, near Boston, Massachusetts, at the Sheraton Ferncroft Hotel in Danvers, Massachusetts.

In addition, ThyCa sponsors Thyroid Cancer Awareness Month plus year-round awareness campaigns. Free awareness and outreach materials are available at any time from ThyCa.

ThyCa also sponsors thyroid cancer research fundraising and research grants, in support of the goal of cures for all thyroid cancer.

Information about thyroid cancer, ThyCa’s free support services and publications, events, and research fundraising and research grants is available by writing to P.O. Box 1102, Olney, MD 20830-1102, e-mailing to thyca@thyca.org, calling 877-588-7904, faxing to 630-604-6078, or visiting the ThyCa web site.

IN THIS ISSUE

ThyCa Plans To Award Two New Research Grants in 2009

In 2009, for the seventh year in a row, ThyCa: Thyroid Cancer Survivors’ Association, Inc. will award new grants for thyroid cancer research, ThyCa Executive Director Gary Bloom has announced.

ThyCa will award two new grants in 2009. Each grant will be for 2 years. One grant will support research on follicular-cell-derived thyroid cancer, including papillary, follicular, anaplastic, and variants. The other grant will support research on medullary thyroid cancer.

The ThyCa Research grants are open to all researchers and institutions worldwide.

An independent expert panel of the American Thyroid Association (ATA) will select the grant recipients. ATA is the professional association of clinicians and researchers concerned with thyroid diseases.

Proposals are due by January 31, 2009. The Call for Proposals and eligibility requirements are available on the ATA web site.

The deadline for submission of a proposal summary to the ATA is January 31, 2009. The ATA Research Committee will rank proposals according to their scientific merit. ATA will notify the authors of selected proposals by early March and will invite them to submit complete grant applications.

“We are grateful all our generous donors and volunteers for making these grants possible,” said ThyCa Executive Director Gary Bloom. “More thyroid cancer research is urgently needed, to better understand thyroid cancer and find cures for all thyroid cancer. We greatly appreciate the ATA’s support in our research grant process.”

The ThyCa grants, begun in 2003, are the first-ever thyroid cancer research grants to be funded entirely by thyroid cancer patients, caregivers, and friends.

ThyCa has awarded its grants to researchers at the following institutions:

  • Cochin Institut, Paris, France
  • Harvard Medical School, Boston, Massachusetts
  • Johns Hopkins University School of Medicine, Baltimore, Maryland
  • Ohio State University, Columbus, Ohio and Medical University of Gdansk, Poland
  • Memorial Sloan-Kettering Cancer Center, New York, New York
  • Rush-Presbyterian-St. Luke’s Medical Center, Chicago, Illinois
  • University Hospital Duesseldorf in Duesseldorf, Germany
  • University of California Los Angeles (UCLA)/Veterans Affairs West Los Angeles Health Care System, Los Angeles, California.
  • University of Texas M.D. Anderson Cancer Center in Houston, Texas

ThyCa has two Research Funds. One fund supports research of follicular-cell-derived thyroid cancer, including papillary, follicular, anaplastic, and variants. The other research fund supports research of medullary thyroid cancer.

To find out more about the ThyCa Research Funds and annual Rally for Research, visit our Reearch Fundspage.

ThyCa invites everyone to join us in our quest to find a cure for all thyroid cancer.

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Welcome to the Newest ThyCa Local Support Group

Welcome to our newest Support Group, ThyCa East Valley (Southern Phoenix), Arizona. The group’s first meeting will be on January 8, 2009. Joan Hedman and Monica Krist are the the volunteer Co-Facilitators.

Communities around the United States and in Costa Rica and Philippines have local thyroid cancer support groups.

You’re cordially invited to contact the group facilitator nearest you and attend meetings, or simply show up. Advance registration isn’t required. At local support group meetings, you have the opportunity to meet and talk with others in your community face to face. The participants share their experiences, strength, and hope. You learn more about your community’s health care resources. You experience camaraderie and connections with others who live near you and are also coping with thyroid cancer.

Family members and friends are welcome to attend. Each local support group is facilitated by one or more ThyCa volunteers.

You’ll find each group’s meeting schedule, location, facilitator contact information, and other details on the group’s web page. The Find Support section of our web site connects you with all the local support groups:

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Bally Total Fitness Reaches Out, Raises Awareness

This fall, Deborah Greger, Senior Group Exercise Director, and Yolanda Roberts of Bally Total Fitness in King of Prussia, Pennsylvania hosted a Pilates event at the club, and helped raise Thyroid Cancer Awareness in conjunction with this event.

Their display of ThyCa materials helped educate attendees about thyroid cancer. Attendees also received flyers, brochures, and our plastic wallet cards.

Yolanda wrote, “I am so grateful and excited to spread the word to all I can.”

Thank you so much, Deborah and Yolanda!

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Our Free Guestbook

To protect each person’s privacy, the mailing list is for the sole use of ThyCa: Thyroid Cancer Survivors’ Association, Inc., and its affiliates. ThyCa does not ever sell or give away any contact information.

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My Story: Merry Christmas, You Have Cancerby Kimberly Koepel, Ohio

My senior year of college, very near Christmas, I found out I had thyroid cancer. One call during my Christmas break changed my life. From taking classes autumn quarter at Ohio State, to a winter filled with doctor’s visits in Wisconsin, cancer didn’t just change my schedule, it changed everything.

Before I got the cancer call, I knew something was wrong. …. I would get frequent headaches…. I also lost my voice frequently, for days at a time.

I live in Ohio. During Christmas break I received all my check-ups at the a clinic in Wisconsin, because I was still under my parents’ HMO insurance and they live in Wisconsin. I decided to make an appointment at the clinic with an ear, nose, and throat specialist, since I was losing my voice so often. Happily, to my surprise, the appointment was made with the same surgeon who removed my tonsils when I was seven.

During my appointment the doctor felt a couple of lumps in my thyroid and scheduled an ultrasound for the same day and made an appointment for me to be seen by an Endocrinologist. This was actually the first time I had seen an Endocrinologist. I strongly suggest that if anyone is experiencing symptoms such as mine, they go to an Endocrinologist, because endocrinologists understand thyroid levels and function. Looking back, I believe I would have saved time and headaches (no pun intended) if I would have been seen by an Endocrinologist from the onset of my symptoms.

…While still in his office, he received the results from my ultrasound, explained to me what he saw, and showed me the nodules on my thyroid and surrounding areas. He explained that nodules could be malignant and a fine needle aspiration would verify if they were. One was scheduled. I was nervous and simultaneously terrified and in denial of the potential results. All of my appointments were in the same day, which happened to be December 22, right before Christmas, and I would not receive the results until after the holiday.

I visited my family in Upper Michigan for Christmas and the trip further delayed the news. My cell phone reception there was so bad that the doctor did not get a hold of me when he first called. I did finally get the call, and inevitability it made me quake and wail, falling into my Grandmother’s arms. During this call I found out my cancer was a mix of Papillary and Follicular and it was decided that my whole thyroid would be removed.

I called friends and family members to tell them the news and found their reactions were mixed. Some were horrified and cried, maybe even screamed a little; some gasped in disbelief; one did not want me to interrupt her dinner. My best friends were there, like they always had been, like I knew they would be.

The next battle was with the insurance company. My diagnosis was made during a break from school, which created a loophole for the insurance company, enabling them to say I was only covered to the end of the holiday break. I wouldn’t be covered unless I returned to classes on January 4th. My surgery was scheduled for January 4th so this was not possible! They also tried to argue that I wouldn’t be a student taking the quarter off to receive treatment in Wisconsin. Eventually they paid for surgery and treatment, perhaps due to their inability to argue with my parents and doctors any longer.

I had my surgery, awoke from the anesthesia cancer free, and stayed in Wisconsin for a month to recover and wait for lab results, doctor’s visits and radioactive iodine treatment. My wait was only two weeks after surgery to receive the RAI because I had been under-medicated in the past and it didn’t take long for me to become completely hypothyroid.

My month in Wisconsin was lonely, I felt sick and tired every day, I sat in the house in the middle of a Wisconsin winter, unable to do anything but count the hours until someone would come home.

A month had passed and it I went back to Ohio. I settled back in to my apartment and still felt lonely. No one could really understand what I had been through and they didn’t even ask what the last month had been like. I had a small number of friends who were actually willing to admit that I had cancer and more who wanted to pretend it never happened. I’m not sure if the ones who tried to pretend were sad, or merely inconvenienced by my inability to party with them. Nevertheless, it hurt.

I hated sitting at home every day. I had ideas of volunteering or painting but I was still really tired. I had insomnia from the changing thyroid levels, so I slept until two or three in the afternoon and then would go to bed at four or five in the morning.

I refused to join a support group or organization, and was still too tired to keep up with my friends which resulted in a lot of nights home alone. I soon became more and more depressed. My doctor even suggested I join ThyCa, and I dismissed him immediately. “I’ve never been a joiner,” I thought to myself. “I can do this on my own, this is just a rough patch.” I should have realized he had seen something that I didn’t, he barely knew me, but I’m pretty sure he saw how lost I was. Cancer is scary and unless all your friends have it too, it’s lonely. Whenever I think about how sad and lonely I was, I wish I had asked for help.

Support groups and organizations are around for a reason. Organizations such as ThyCa help individuals share their experiences that are unique to a thyroid cancer survivor. I wish I would have joined a support group, so I would have had others to share stories or similar experiences. A support group allows people to inspire each other, understand the same sorrow and triumph, cry and conquer together. If there is a wrong way to handle a cancer diagnoses, it is by pretending nothing is wrong.

I am now a proud ThyCa member, and look forward to helping others who are newly diagnosed.

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Low-Iodine Recipe of the MonthContributed by Suzanne Kallick Gilliam

Frozen Banana “Ice Cream”

Peel bananas and cut into one-inch pieces.
Freeze, and then process in a blender or food processor until creamy smooth.

Suzanne writes, “My absolute favorite treat is frozen banana “ice cream.” The consistency is just like an ice cream product. I miss dairy and creamy things the most so for me it’s the best. I sprinkle it with granola or fresh berries.

“I try to have fun with the diet versus treating it as a chore or punishment and try things I might not otherwise — and for me one of the best parts is telling myself that I don’t have to worry about carbs or calories or sugar for these 2 weeks so it’s nice to have a break from that. Thanks for all you do….”

Thank you, Suzanne! Your recipe will be added to the next edition of the FREE Downloadable Low-Iodine Cookbook.

Download the cookbook, with more than 250 favorite recipes from more than 100 generous volunteers.

If you’d like to contribute your favorite recipe or tip to the cookbook’s next edition, send it to recipes@thyca.org.

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Variations on November’s Low Iodine Recipe of the MonthWith thanks again to Liz S., Lafayette, California, for contributing this recipe.

No Bake Easy Holiday Rum Balls
Makes 24-30 rum balls

1 Cup almond meal (available at health food stores)
1/3 Cup powdered sugar (can use 1/4 Cup powdered sugar and 1/8 Cup Splenda if you wish to reduce the calories
1/4 Cup dark rum
1 teaspoon cocoa powder
1/2 teaspoon vanilla

Mix all ingredients together in a bowl until well blended. Roll in the palm of your hands into ¾ inch to1inch balls. [If the consistency of the dough feels too sticky, you can add a little more almond meal to the dough: If it feels too stiff, you can add a little vegetable oil (1 teaspoon to 1 Tablespoon) or pasteurized egg whites to moisten.]

Optional: The rum balls can be rolled in powdered sugar, cocoa powder, or almond meal for a different look and taste.

Put balls into a covered container and refrigerate for up to two weeks.

A ThyCa volunteer writes: “The Rum Balls I made, from the last newsletter, were eagerly and speedily consumed at the gathering this past weekend. I used imitation rum flavoring at the request of one of the co-hosts, as her kids were coming. Added a bit of water, plus the suggested oil. I ground up almond slivers from the regular grocery. Also rolled the balls in the almond meal. Yum!”

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ThyCa Is In the Combined Federal Campaign (CFC)

ThyCa’s CFC # is 11675

ThyCa: Thyroid Cancer Survivor’s Association is in the world’s largest workplace giving campaign – the Combined Federal Campaign.

Federal civilian, postal, and military employees are now able to choose ThyCa as a recipient of their workplace donations through the Combined Federal Campaign (CFC). This federal employees’ charitable giving campaign raises millions of dollars each year for thousands of nonprofits providing health and human services throughout the world. Our thanks to everyone who has donated to ThyCa through the Combined Federal Campaign.

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Have You Visited the Web Site Lately?

Our web site has more than 650 pages. More than 50 distinguished physicians plus numerous other specialists give ongoing input and review. We greatly appreciate the wonderful support of these medical specialists.

The web site expands nearly every week. Visit www.thyca.org often for the latest information updates, the schedules of local support group meetings, and news about special events.

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Become a ThyCa Member!

We invite you to join ThyCa: Thyroid Cancer Survivors’ Association, Inc., to help us sustain, strengthen, and extend our services.

Your membership dues will support ThyCa’s efforts to reach and serve other survivors and their families around the world.

You may join as a one-year member, two-year member, or lifetime member.

For our online and mailed membership forms, go to our Membership page.

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Want To Volunteer?

We welcome new volunteers at any time. To learn about volunteer opportunities, visit our Volunteer page:

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Thank You From ThyCa!

We believe that no one should have to be alone when facing thyroid cancer.

Our free support services are offered with this as our main goal.

We thank everyone for giving your time and talents to making possible our free services, publications, and events.

We’re grateful to you for reaching out to others worldwide, to help connect them with ThyCa’s many free support services and educational resources.

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Every Day…

Every day, thousands of people with thyroid cancer, and their families, receive support, education, and hope from ThyCa: Thyroid Cancer Survivors’ Association.

Your generous support is what makes it possible to sustain, strengthen, and expand our services and outreach.

It only takes a minute to make a secure donation online in support of ThyCa’s work (or you are welcome to donate by mail), so click here to give.

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You’re Invited To These Thyroid Cancer Events!

  • Thyroid Cancer Support Group Meetings in Your Community
  • Free One-Day Regional Workshops. Watch the web site for details. Workshop planning has already begun for Spring 2009 for Texas/Southwest in Dallas, Texas, and the Mid-Atlantic (near Washington, DC).
  • The 12th International Thyroid Cancer Survivors’ Conference
    October 16-18, 2009
    Boston, Massachusetts
    Sheraton Ferncroft Hotel in Danvers
    Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Visit our web site for details. Download the flyer and help spread the word.

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Ask ThyCa

If you have questions about thyroid cancer, please send them to thyca@thyca.org and we’ll answer your question in an upcoming newsletter as well as adding to our web site content.

Thank you to everyone for your wonderful support. On behalf of everyone in ThyCa, we wish you all the best for the holiday season and New Year.

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ThyCa NEWS NOTES
Copyright (c) 2008 ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Thank you to our writing, editing, and proofreading team for this issue of the newsletter: Pat Paillard, Gary Bloom, Suzanne Kallick Gilliam, Kimberly Koepel, Liz S., and Cherry Wunderlich.

Your suggestions for articles are welcome. The deadline for articles and news items is the first day of each month.

Please share News Notes with your family and friends. For permission to reprint in another electronic or print publication, please contact us at outreach@thyca.org.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a national non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals. We are dedicated to support, education, and communication for thyroid cancer survivors, their families and friends, as well as to public awareness for early detection, treatment, and lifetime health monitoring, and to thyroid cancer research fundraising and research grants.

Contact us for free awareness materials and information about our free services and special events. E-mail thyca@thyca.org, call 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit our web site..

IN THIS ISSUE

More Than 80 Local Support Groups Serve Survivors and Caregivers

Welcome to our newest Support Group, ThyCa Solano County, California. This new group meets in Benicia, California.

The ThyCa Midsouth Group in Memphis, Tennessee, has a new schedule for its 2009 meetings.

These and more than 80 other communities around the United States and in Costa Rica and Philippines have local thyroid cancer support groups .

You’re cordially invited to contact the group facilitator nearest you and attend meetings. At local support group meetings, you have the opportunity meet and talk with others in your community face to face. The participants share experiences, strength, and hope. You learn more about your community’s health care resources. You experience camaraderie and connections with others who live near you and are also coping with thyroid cancer.

Family members and friends are welcome to attend. Each local support group is facilitated by one or more ThyCa volunteers.

You’ll find each group’s meeting schedule, location, facilitator contact information, and other details on the group’s web page. The Find Support section of our web site connects you will all the local support groups.

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Person-To-Person Network Serves Survivors Around the Globe

Thyroid cancer survivors around the United States and around the globe receive one-to-one support through ThyCa’s Person To Person Network.

Our Person to Person Network volunteers believe that no person should have to face thyroid cancer alone. We are a support network of thyroid cancer survivors who support the emotional and psychological needs of people with thyroid cancer, as well as their families and caregivers.

We match people with thyroid cancer as closely as possible with a volunteer who has experience with the same form of thyroid cancer.

Volunteers answer questions based on their own experiences and offer insights on how they are coping with thyroid cancer. They offer an empathetic listening ear to others in the same situation. Volunteers do not give medical advice or medical opinions of any kind. They are not health professionals and do not offer guidance for individual situations. They simply share their experiences and offer emotional support.

The Person to Person Network offers this support service free of charge.

Peggy Melton, facilitator of the ThyCa Dallas, Texas, Support Group, is ThyCa’s Director of the Person To Person Network.

Wherever you are around the world, we will try to find a volunteer to share and offer support. To find out more and ask to be matched to a volunteer, visit our Person to Person Network page.

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Genetic Factors and Papillary Thyroid Cancer—An Update on Research Funded by ThyCa

Your Research Fund Donations Are Making a Difference!

ThyCa Grant Recipient Krystian Jazdzewski, M.D., Ph.D., and his research team are searching for genetic factors that predispose those to papillary thyroid carcinoma (PTC). This topic is important because an inherited predisposition to differentiated thyroid cancer is very strong, one of the highest of all cancers (3- to 8-fold higher risk for first-degree relatives than in general population).

2007 ThyCa Grant Recipient and 2008 ThyCa Grant Renewal Recipient
Krystian Jazdzewski, M.D., Ph.D
Assistant Professor, Medical University of Gdansk, Poland
Visiting Scientist, The Ohio State University, Columbus, Ohio
Project: The Role of miR146a in Papillary Thyroid Carcinoma

Research Summary
Papillary thyroid carcinoma (PTC), the most common form of thyroid cancer (accounting for 80% of thyroid cancers) seems to frequently cluster in families.

First-degree relatives have a 3-fold to 8-fold increased risk of developing the disease. Even though this suggests a strong genetic component, researchers have so far been unable to identify specific genes that contribute to the cause of PTC.

Krystian Jazdzewski and his colleagues have been funded by a ThyCa grant to try to find an answer.

Jazdzewski reasoned that if a traditional mutation affecting the structure or function of a gene could not be found, perhaps the problem had to do with how the genes were being regulated such as being turned off and on.

His research identified a variant in the DNA that reduces the quantity of a molecule called miR-146a, which is needed to regulate other genes. He and his colleagues show that when miR-146a levels fall, the genes TRAF6 and IRAK1, involved in tumor promotion, are not inhibited as efficiently as is normal, leading to a greater risk of cancer.

This heritable variant is the first example of a molecularly defined predisposition to PTC. The authors suggest that targeting miR-146a might be a new approach to PTC therapies.

Their findings were recently published in prestigious journal The Proceedings of National Academy of Sciences of USA: “Common SNP in pre-miR-146a decreases mature miR expression and predisposes to papillary thyroid carcinoma” by Krystian Jazdzewski, Elizabeth L. Murray, Kaarle Franssila, Barbara Jarzab, Daniel R. Schoenberg and Albert de la Chapelle

This research has the potential to help identify patients who might be at greater risk of developing PTC, and also may help identify new treatment-related targets.

ThyCa grants fill an important gap in thyroid cancer research, enabling scientists to pursue experiments that might otherwise go unfunded. Sometimes the research is a stepping stone to other studies; frequently, the results have immediate impact.

The knowledge and expertise gained contributes to a better understanding of thyroid cancer and treatment of people affected by the disease.

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Hope and Help When Anaplastic Thyroid Cancer StrikesBy Brad Rubin

When Anaplastic Thyroid Cancer (ATC) strikes, a patient and their friends and families are instantly thrown into a chaotic world. In this world, we often find physicians who have never heard of ATC, let alone have the experience to treat it.

We find that although most types of thyroid cancer are generally treatable when detected early, there is very rare form called ATC with sobering survival statistics. We find few Internet references and research papers. We feel very alone in this world. We are scared.

But, thanks to the commitment of an online community of 550 people subscribed to an e-mail list who are all citizens of this new world where lives have been touched by ATC, and with the help of thyroid cancer specialist physicians, there now exists an entire web site dedicated to this rare and horrible disease.

While all members of the online community share the ATC experience, everyone’s journey is different.

Unfortunately, we find that most ATC journeys end in death (and their loved ones agonize over what could have been done differently). Occasionally, a journey does not end and life continues (and survivors wonder what they did to be so fortunate).

Some ATC patients are very young and are in otherwise robust health, while others are struggling with other health issues. Some have small children. Some have wonderful support systems, while others are traveling alone.

Some are getting treatment at facilities with world-class cancer care, while others are struggling to find expertise in a remote corner of the world.

Some are too scared, while others are not scared enough, to battle urgently and aggressively. Some question conventional medicine whose answers are not good enough, while others fear questioning physicians at all. Some seek information, some seek support, some come to grieve, and some just seek prayers.

Some ATC survivors see their mailing list participation as a way to pay the community back for their good fortune. Others see their participation as a way to exercise their power to make a positive difference in the face of the lack of power to save their loved one.

Some ask many questions, others provide many answers, and a great many just lurk and take comfort in the fact that they are not alone and that others have taken and are taking their same journey.

This ATC community began in 1997 when Cheri Lindle of Oklahoma reached out over the Internet after her stepfather Bob Collins was diagnosed with thyroid cancer. You can read their family story on the ThyCa web site.

Cheri met others over the Internet, and started an e-mail group for families coping with ATC. Since its creation on June 3, 1999, the ATC mailing list community has shared 9,100 messages, averaging about 3 messages per day. A total of 2,700 of these messages have appeared in the last year, so we are now averaging over 7 messages per day.

Although this community is made up of people of all walks of life, backgrounds, experiences, and belief systems, they have come together, enabled by Internet technology with support from Yahoo! and ThyCa, to form a vibrant, knowledgeable, supportive, responsive, and respectful community.

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From Our E-Mail Inbox

–From Indiana
I am a Thyca survivor now for 6 months. I am 20 years old and attend a Community College in Indiana. I would like to get some of these brochures and pass them around at my school and in my community. I believe that this is something that everyone should know about. Thank You.

–From Colorado
I am not in the medical field, however, I have my own business and would like to pass these brochures out to clients.

— From Illinois
I am a thyroid cancer survivor since 1999, I just received your packet with thyca info, I would like to help with giving out free brochures and any other materials about thyroid cancer.

— From Pennsylvania
I am a nuclear medicine and internal medicine physician with a thyroid clinic that treats and follows up patients with thyroid cancer. Would you please send me patient packets of educational materials.

–From Michigan
I am an Avon Representative and a thyroid cancer survivor – I am interested in receiving free brochures so I may include them with my Avon brochures and as well as passing them on to my friends and family.

— From Indiana
Can you send me a few brochures? I am president of a women’s sorority (30 members), and recently diagnosed with thyroid cancer. Just wanted to educate them.

–From California
I left my doctor’s office sort of reeling from the unexpected cancer news and with a handful of papers.
When I finally had a chance to look at the list of what I could and could not eat, it seemed daunting.
Your cookbook recipes are marvelous and so very appreciated. I have also found information about radioiodine treatment, which I didn’t know and I now need to call my doctor about. The websites and printed material she provided don’t even compare. Thank you so much.
Trying to figure out what is happening, how to deal with it, and what to expect is a whole lot easier with your website. You can bet I am going to print off some info and tell my doctor that the next patient she sends home with this diagnosis should also get YOUR web link.
Again, tremendous thanks.

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Our Free Guestbook

To receive our free online newsletter, plus announcements of ThyCa events and activities, fill out ourGuestbook form.

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ThyCa Is In the Combined Federal Campaign
ThyCa’s CFC # is 11675

ThyCa: Thyroid Cancer Survivor’s Association is in the world’s largest workplace giving campaign.
Federal civilian, postal, and military employees are now able to choose ThyCa as a recipient of their workplace donations through the Combined Federal Campaign (CFC). This federal employees’ charitable giving campaign raises millions of dollars each year for thousands of nonprofits providing health and human services throughout the world.

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Low-Iodine Recipe of the MonthContributed by Liz S., Lafayette, California

Here is a perfect recipe for this time of year

No Bake Easy Holiday Rum Balls
Makes 24-30 rum balls

1 Cup almond meal (available at Trader Joe’s or health food stores)
1/3 Cup powdered sugar (can use 1/4 Cup powdered sugar and 1/8 Cup Splenda if you wish to reduce the calories)
1/4 Cup dark rum (preferably Myers)
1 teaspoon cocoa powder
1/2 teaspoon vanilla

Mix all ingredients together in a bowl until well blended. Roll in the palm of your hands into ¾ inch to1inch balls. (If the consistency of the dough feels too sticky, you can add a little more almond meal to the dough: If it feels too stiff, you can add a little vegetable oil (1 teaspoon to 1 Tablespoon) or pasteurized egg whites to moisten.)

Optional: The rum balls can be rolled in powdered sugar, cocoa powder, or almond meal for a different look and taste.

Put balls into a covered container and refrigerate for up to two weeks..

Liz says, “This is a low-iodine version of a holiday favorite that I made up when I was on the low iodine diet.”

Thank you, Liz! Your recipe will be added to the next edition of the FREE Downloadable Low-Iodine Cookbook.

Download the cookbook, with more than 250 favorite recipes from more than 100 generous volunteers.

If you’d like to contribute your favorite recipe or tip to the cookbook’s next edition, send it to recipes@thyca.org.

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Have You Visited the Web Site Lately?

Our web site has more than 650 pages. More than 50 distinguished physicians plus numerous other specialists give ongoing input and review. We greatly appreciate the wonderful support of these medical specialists.

The web site expands nearly every week. Visit www.thyca.org often for the latest information updates, the schedules of local support group meetings, and news about special events.

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Become a ThyCa Member!

We invite you to join ThyCa: Thyroid Cancer Survivors’ Association, Inc., to help us sustain, strengthen, and extend our services.

Your membership dues will support ThyCa’s efforts to reach and serve other survivors and their families around the world.

You may join as a one-year member, two-year member, or lifetime member.

For our online and mailed membership forms, visit our Membership page.

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Want To Volunteer?

We welcome new volunteers at any time. To learn about volunteer opportunities, visit our Volunteer page.

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Thank You From ThyCa!

We believe that no one should have to be alone when facing thyroid cancer.

Our free support services are offered with this as our main goal.

We thank everyone for giving your time and talents to making possible our free services, publications, and events.

We’re grateful to you for reaching out to others worldwide, to help connect them with ThyCa’s many free support services and educational resources.

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Every Day…

Every day, thousands of people with thyroid cancer, and their families, receive support, education, and hope from ThyCa: Thyroid Cancer Survivors’ Association. Your generous support is what makes it possible to sustain, strengthen, and expand our services and outreach.

It only takes a minute to make a secure donation online in support of ThyCa’s work (or you are welcome to donate by mail), so click here to give.

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You’re Invited To These Thyroid Cancer Events!

  • Thyroid Cancer Support Group Meetings in Your Community
  • Free One-Day Regional Workshops. Watch the web site for details
    Workshops already being planned for Texas/Southwest in Dallas, Texas, and the Mid-Atlantic (near Washington, DC).
  • The 12th International Thyroid Cancer Survivors’ Conference
    October 16-18, 2009
    Boston, Massachusetts
    Sheraton Ferncroft Hotel in Danvers
    Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Visit our website for details.

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ThyCa NEWS NOTES
Copyright (c) 2008 ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Thank you to our writing, editing, and proofreading team for this issue of the newsletter: Pat Palliard, Gary Bloom, Brad Rubin, Liz S., and Cherry Wunderlich.

Your suggestions for articles are welcome. The deadline for articles and news items is the first day of each month.

Please share News Notes with your family and friends. For permission to reprint in another electronic or print publication, please contact us at outreach@thyca.org.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a national non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals. We are dedicated to support, education, and communication for thyroid cancer survivors, their families and friends, as well as to public awareness for early detection, treatment, and lifetime health monitoring, and to thyroid cancer research fundraising and research grants.

Contact us for free awareness materials and information about our free services and special events. E-mailthyca@thyca.org, call 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit our website.

Other Specialists Will Also Speak; Plus Survivors and Caregiver Roundtables

Thyroid cancer survivors and families from around the United States, as well as Canada and Netherlands will be gathering in St. Louis, Missouri, on October 17-19, 2008, to learn from physician specialists about the latest research in thyroid cancer, during the 11th International Thyroid Cancer Survivors’ Conference.

The conference is sponsored by the national nonprofit organization ThyCa: Thyroid Cancer Survivors’ Association, Inc. Thyroid cancer is the most common endocrine cancer and is ranked the number one cancer in incidence growth in women and number three in men.

Speakers at the more than 100 sessions at the Sheraton Westport Hotel/Lakeside Chalet at 191 Westport Plaza, St. Louis, include 25 leading physicians who will lead 43 sessions, plus 15 other specialists, including 2 dentists, a pharmacist, mental health professionals, 3 attorneys, financial specialists, and other specialists in coping skills and well-being, as well as thyroid cancer survivors, and caregivers. There are sessions about each type of thyroid cancer (papillary, follicular, medullary, anaplastic, and variants), for people of all ages at all phases of testing, treatment, and follow-up.

This educational and supportive event is FREE to anyone who requests a scholarship. Walk-in attendees are welcome. Discounted hotel rooms are available.

The following are a few selected sessions at the conference. For the complete program schedule and further conference details, visit ThyCa’s web site, call 1-877-588-7904, or e-mail to thyca@thyca.org orconference@thyca.org.

  • Ask a Doctor: How to Choose a Thyroid Surgeon, Questions to Ask, and Key Issues in Thyroid Surgery and Recovery. Joseph Scharpf, M.D., Surgeon, Cleveland Clinic Foundation, Cleveland, OH
  • Staging and Prognostic Systems: What Do They Mean For Patients Living with Thyroid Cancer. R. Michael Tuttle, M.D., Endocrinologist, Memorial Sloan-Kettering Cancer Center, New York, NY
  • Thyroid Cancer Overview, Treatment, and Post-Operative Surveillance, Including Thyroglobulin and Thyroglobulin Antibody Testing. Matthew D. Ringel, M.D., Endocrinologist, Ohio State University College of Medicine, Columbus, OH
  • Ask an Endocrinologist About How Doctors Manage Thyroid Cancer in the Short Term and Over the Long Term. Steven I. Sherman, M.D., Endocrinologist, Endocrinologist, University of Texas, M.D. Anderson Cancer Center, Houston, TX
  • Introduction to a New Blood Test That Will Detect the TSH Receptor Messenger RNA, Making It a Marker of Thyroid Cancer Cells Circulating in the Blood. Mira Milas, M.D., Endocrine Surgeon, Cleveland Clinic Foundation, Cleveland, OH
  • Follow-up of Patients with Well-Differentiated Thyroid Cancer. Irini E. Veronikis, M.D., Endocrinologist, St. John’s Mercy Medical Center, St. Louis, MO
  • Managing Papillary Thyroid Cancer and Elimination with Ethanol Ablation of I-131 Resistant Residual Neck Nodal Disease. Ian Hay, M.D., Ph.D., Endocrinologist, Mayo Clinic, Rochester, MN
  • Ask a Surgeon about Medullary Thyroid Cancer Treatment Options. Jeffrey F. Moley, M.D., Surgeon, Washington University School of Medicine, St. Louis, MO
  • Medullary Thyroid Cancer: Novel Therapies Discussion. Julie Ann Sosa, M.D., M.A., Surgeon, Surgeon, Yale Univ Sch of Medicine, New Haven, CT
  • Anaplastic Thyroid Cancer, New Treatments on the Horizon. Bryan McIver, M.D., Ph.D., Endocrinologist, Endocrinologist, Mayo Clinic, Rochester, MN
  • An Oncologist Discusses Targeted Therapies for Advanced Thyroid Cancer. Marcia S. Brose, M.D., Ph.D., Medical Oncologist, Univ. of Pennsylvania, Philadelphia, PA
  • Questions About Pregnancy and Parenting When Dealing with Thyroid Cancer. Rebecca Brown, M.D., Endocrinologist, University of Chicago Medical Center, Chicago, IL
  • Managing Thyroid Cancer for Those Diagnosed Before Age 18: Answering Your Questions About Treatment, Testing and Research. Paul R. Krakovitz, M.D., Otolaryngologist, Cleveland Clinic Foundation, Cleveland, OH
  • The Increasing Incidence of Differentiated Thyroid Cancer, and Managing It in the First Few Years After Diagnosis. Jennifer A. Sipos, M.D., Endocrinologist, Endocrinologist, University of Florida Shands Cancer Center, Gainesville, FL
  • Patient/Physician Relationships: Effective Communication and Coordination. Steven G. Waguespack, M.D., Endocrinologist, Univ. of Texas, M.D. Anderson Cancer Center, Houston, TX, and Sandy Triplett, ThyCa Volunteer, MO.
  • How the Medical Team Deals with Pain Management When Coping with Cancer. Teresa L. Deshields, Ph.D., Psychologist, Psycho-Oncology Service, Barnes-Jewish Hospital, St. Louis, MO
  • Treatment Issues Common to Many Types of Cancer, and the Roles of Medical Oncology, Hematology, Nuclear Medicine, and Internal Medicine. Edward B. Silberstein, M.D., Nuclear Medicine Physician, Internist, Medical Oncologist, Hematologist, University of Cincinnati, Cincinnati, OH
  • Ask an Attorney about Legal Issues Related to Social Security and Disability Laws. M. Julie Shanahan, Esq., Attorney, Crowe & Shanahan, St. Louis, MO
  • Financial Wellness During Cancer. Kevin Ferris, M.S.W., L.C.S.W., C.M.C., Wellness Community, St. Louis, MO
  • Coping with Cancer. Shannon Nanna, Psy.D., Psycho-Oncology Psychologist, Siteman Cancer Center, Barnes Jewish Hospital, St. Louis, MO

PLUS more than 80 additional sessions

For details, visit ThyCa’s web site or e-mail to conference@thyca.org.