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ThyCa News

ThyCa NEWS NOTES - March 2009

03/2009

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..