ThyCa News

ThyCa NEWS NOTES - May 2009

05/2009

IN THIS ISSUE


San Francisco/Northern California Free Workshop —You’re Invited

We’re proud to announce another free regional workshop, to be held in Stanford California on July 25th. You’ll find the flyer onwww.thyca.org in the Conferences/Workshops section.

Our free workshops 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 the 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.

San Francisco/Northern California Thyroid Cancer Survivors’ Workshop
Saturday, July 25, 2009
12:30 p.m. — 4:30 p.m.
Stanford, California

Featured Speakers:

  • Haruko Akatsu, M.D., M.S., Endocrinologist, Stanford University Hospital, CA
  • Wen T. Shen, M.D., Endocrine Surgeon, University of California at San Francisco, CA
  • Mike Yao, M.D. ENT, Stanford University Hospital, CA
  • Location: Stanford Cancer Center, 875 Blake Wilbur Drive, Stanford, CA 94305.

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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. Advance registration not required.

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

  • Climax Springs, Missouri
    Sandy Triplett is the volunteer facilitator. This group will hold a start-up meeting on Friday, June 5 at 12 noon. Uzma Khan, M.D., Endocrinologist of the University Medical Center, who participated both at the recent Midwest ThyCa Workshop and the 2008 Thyroid Cancer Survivors’ Conference, will attend the meeting.
       
  • Pacifica, California
    Trish Moran Sholl is the volunteer facilitator.
    The group’s first meeting will be on Saturday, June 6 at 3 p.m.


Go to our Local Support Groups page for a complete list of groups, contact information, and meeting schedules. Or, if you don’t have internet access, call (toll-free): 877-588-7904

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

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Physician To Speak at ThyCa Silicon Valley, California, Support Group, Meeting on June 20

On Saturday, June 20, 2009, at 3 p.m., Haruko Akatsu, M.D., M.S, Associate Professor and Endocrinologist at Stanford Medical School, will be the guest speaker at the meeting of the ThyCa Silicon Valley, California, Support Group. For details and transportation directions, visit the group’s web site .

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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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Medullary Thyroid Cancer Management Guidelines Developed by American Thyroid Association; ThyCa Helps Fund Guidelines Development

New guidelines designed to standardize and optimize the diagnosis, treatment, and monitoring of patients with Medullary Thyroid Cancer (MTC), an uncommon and challenging form of thyroid cancer, have been developed by the American Thyroid Association.

MTC is a complex and often difficult disease that accounts for about 4% of all thyroid cancer cases in the United States. Nearly 25% of cases worldwide are familial and present as an autosomal inherited disorder. In individuals with the inherited form of MTC, a preneoplastic lesion called C-cell hyperplasia will first develop and then progress to an invasive, life-threatening malignancy.

The American Thyroid Association has compiled 122 evidence-based recommendations that cover a range of clinical topics, including diagnosis and therapy for early disease, genetic testing, surgical management, post-surgical treatment and monitoring, management of persistent or recurrent MTC and metastatic disease, and long-term follow-up. The guidelines also propose directions for future research on MTC.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is pleased to have provided an unrestricted educational grant to help support the development of the guidelines. We thank our generous contributors for the donations that made this grant possible. We will soon have a link to these free guidelines on our web site. We also invite our web site visitors to read our special Medullary Thyroid Cancer section within our web site, and which continues to develop and expand.

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ThyCa Will Mail ATA Guidelines to Your Doctor, Free of Charge

Just send us your doctor’s complete mailing address and we’ll be happy to mail, free of charge, the new ATA Medullary Guidelines and the ATA Guidelines for Managing Differentiated Thyroid Cancer (Papillary and Follicular and their Variants). Our web site also has a link to the guidelines, for downloading.

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. Physicians, clinics, hospitals, and community group are major ways that people learn about our free support services, educational resources, and special events.

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

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ThyCa Participates at ASCO Annual Meeting

Our thanks to the American Society of Clinical Oncology for the scholarship support for participation by ThyCa representatives at ASCO’s Annual Meeting, We greatly appreciate this support of our learning about research and clinical advances for the treatment of all types of cancer, and for outreach to the medical community.

Representing ThyCa at this meeting, which runs from May 29, 2009 through June 2, 2009 in Orlando, Florida, are two of ThyCa’s Florida volunteers, Martha Adams and Leah Guljord.

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Pediatric Backpacks Reach Families Around the World

Thyroid cancer affects people of all ages, from young children through senior citizens. We are pleased to make free Pediatric Backpacks, filled with useful information for children and their adult caregivers, ThyCa’s free Low-Iodine Cookbook, and Spirit and Gift Items, to families of young people coping with thyroid cancer.

Most recently, backpacks have gone to families in Newfoundland, Canada, and in Kansas and Texas. For more information about Pediatric Thyroid Cancer, and about the backpacks, visit our web site.

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Memorial Golf Tournament Honors Megan Stendebach and Raises $11,000 for ThyCa’s Thyroid Cancer Research Funds

Our thanks to John Oaks of San Antonio, Texas, who once again this spring organized the Megan Stendebach Memorial Golf Tournament to raise funds for Thyroid Cancer Research. John hosted the festivities at his Hangin Tree Saloon in San Antonio, Texas. Megan, a longtime ThyCa volunteer and Board Member Emeritus, initiated this tournament with John Oaks many years ago, and John continued it after she lost her life to cancer last year. Over the years, this wonderful annual golf tournament in San Antonio has raised more than $90,000 for thyroid cancer research.

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Free Patient Information Packets

Would you, or someone you know, like our free Patient Information Packet? Just send an e-mail with your name and complete mailing address to us at thyca@thyca.org, with “patient packet” in the subject, or call us at 1-877-588-7904 and we’ll be happy to mail the packet.

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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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ThyCa Conferences Move Around the Country, Return to Boston for our 12th Conference

ThyCa Conferences have moved around the country, attempting to be nearby members where ever you are.
This year we will complete the circle, meeting once again in Boston.

  1. 1998: Boston, Massachusetts
  2. 1999: Boston, Massachusetts
  3. 2000: Washington, DC (Chevy Chase, Maryland)
  4. 2001: Washington, DC (Chevy Chase, Maryland)
  5. 2002: Los Angeles, California
  6. 2003: Houston, Texas
  7. 2004: Chicago, Illinois
  8. 2005: Denver, Colorado
  9. 2006: Orlando, Florida
  10. 2007: San Francisco, California
  11. 2008: St Louis, Missouri
  12. 2009: Boston, Massachusetts

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2009 Conference Preview— Numerous Speakers Already Confirmed

Speakers from Numerous Medical Centers Confirmed for 12th International Thyroid Cancer Survivors’ Conference

On October 16-18, 2009, you’re invited to the 12th International Thyroid Cancer Survivors’ Conference, to be held just outside Boston, Massachusetts, at the Sheraton Ferncroft Hotel in Danvers.

Highlights of the conference's more than 100 sessions will be more than 40 sessions led by leading physicians. They will explain and answer your questions about the latest advances in treatment, long-term testing and follow-up, recent advances in targeted therapies for people with advanced metastatic disease and rare aggressive variants of thyroid cancer, and what’s happening with clinical trials testing new treatments.

As of early May, we have already confirmed more than 15 physician specialists from these and other leading medical centers. We expect to confirm more speakers soon.

  • Boston University Medical Center, Boston, Massachusetts
  • Brigham and Women’s Hospital, Boston, Massachusetts
  • Children’s Hospital of Boston, Boston, Massachusetts
  • Harvard Medical School, Boston, Massachusetts
  • Massachusetts Eye & Ear Infirmary, Boston, Massachusetts
  • Massachusetts General Hospital, Boston, Massachusetts
  • Mayo Clinic, Rochester, Minnesota
  • Memorial Sloan-Kettering Cancer Center, New York, New York
  • University of Connecticut Medical Center, Storrs, Connecticut
  • University of Florida, Jacksonville, Florida
  • University of Pennsylvania Medical Center, Philadelphia, Pennsylvania
  • University of Texas M.D. Anderson Cancer Center, Houston, Texas

In addition to the physician speakers, we plan also to have more than 30 additional speakers and roundtable leaders who will include other health care professionals, specialists in coping skills and complementary approaches to well-being such as Reiki, survivors of each type of thyroid cancer, as well as caregivers.
For the third year in a row, the conference expects also to offer continuing education credits to nurses. Visit our web site often for updates and details. We’ll soon post the online and mail-in registration forms as well.

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Our 2009 Conference Hotel Features Water Park, Other Attractions, Room Rates of $99 for Single, Double, Triple, or Quad

This year’s conference takes place at the beautiful Sheraton Ferncroft Hotel in Danvers, Massachusetts, on the north shore suburbs of Boston.

We’re proud that once again we’ve obtained a fantastic special room rate for Conference attendees— $99 plus tax for single, double, triple, or quad rooms. This rate is good for the nights before and after the conference as well. Be sure to reserve your room by late August to get the special rate.

Amenities include an indoor pool, sauna, and steam room; scenic walking and jogging trails surrounding the property; a fully equipped indoor fitness facility; and the new indoor water park, CoCo Key Water Resort. The Water Park makes the Sheraton Ferncroft a wonderful place to come for the whole family. The rate for full access to the Water Park is $30 per person per day.

The Sheraton Ferncroft Hotel is in a convenient location and offers amenities for all ages. The hotel is located 8 miles from historic Salem, 20 miles north of downtown Boston, and close to major interstate highways.

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From the E-Mail Box in May

A few of our recent e-mails…

May 2009…

From Virginia
I have just learned that I have papillary thyroid cancer. I am blessed that the cancer was discovered very early and that my doctor seems very good and listens to me. He recommended that I visit ThyCa.org. This a wonderful website with the good work of so many people. I am grateful that these resources are available to people like me who have learned that they have the disease.

From Ohio
I have a few questions about the spirit/gift/awareness items that you list on your website. Do you still have the wristbands and the beaded bracelets available? I have an employee who is only 24 years old that is battling thyroid cancer. We'd like to do a group purchase in her honor on these items. I am guessing that we'd order about 10-12 total.

From California
I am a volunteer at a hospital Cancer Resource Center and would like to order the ThyCa patient services brochure. If possible I would like to order 40 copies.


From another E-mailer
I'm so grateful that we have this LID cookbook as a resource.

Another…

Thank you so much for the most informative site regarding thyroid cancer. It was most helpful during my diagnosis, surgery, and treatment.

From California
I visited your website today (20 days post total thyroidectomy for papillary thyroid cancer). I would love it if you would send me the info packet mentioned on the web site. I see the endocrinologist for the first time today, expecting to get the lowdown on my RAI schedule. I am sure glad I found ThyCa and the recipes! Thanks to everyone who contributes to this great resource.

From Louisiana
I would be interested in new brochures for our offices. We now have a group of 6 Endocrinologists.

From Virginia
I have just been caught up in a whirlwind of thyroid cancer diagnosis and surgeries, and would love to have a new patient packet. Thank you so much for the information on your website, as well, it has been very helpful.

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Are You a Member? Please Join ThyCa!

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).

Go to r our secure online Membership form and our mailed Membership form.

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Low-Iodine Recipe of the Month

Contributed by Deb S. from Wisconsin

Fried Rice
1 Serving – multiply the recipe to make more servings

1 Tablespoon olive oil
1 Tablespoon chopped onion
1 Tablespoon chopped celery
1 Tablespoon thinly-sliced carrot
1 Cup cooked Basmati rice
2-3 ounces cooked meat (chopped chicken, thinly sliced beef, ground pork, etc.)
2 Tablespoon frozen peas
1 egg white
Noniodized salt to taste

Heat oil over medium heat in 8 inch non-stick skillet. Add onion, celery, and carrot and saute 2-3 minutes. Add rice, meat, and peas and heat through. Move rice mixture to outsides of pan, leaving an empty circle in the middle. Add egg white to middle of pan and stir frequently (stir the egg white only). When egg white is cooked, mix in with the rice mixture and add salt to taste..

Deb writes: “This is a quick and easy meal you can make with ingredients you hopefully have on hand for your ‘lo-io’ diet. I just got done with my low-iodine diet. Your cookbook was very helpful.”

Thank you, Deb! We’ll let people know about this recipe in 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. 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. 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. 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.

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

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Help Support the 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.

You can help support the Rally for Research. For details about the Rally for Research, donation opportunities, special events, ThyCa’s past and future Research Grants, visit the Rally for Research page.

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Want To Volunteer?

We welcome new volunteers at any time. Volunteering for ThyCa is one way to help and support others touched by thyroid cancer, and you feel much better yourself because you know you have helped someone else through something you've been through. Try it; you might like it!

To learn about volunteer opportunities, visit our Volunteer page. You can sign-up to volunteer online using ourguestbook.

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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. Visit our Conferences page for details.
    Stanford, California
    in addition to workshops already held this spring
  • September is Thyroid Cancer Awareness Month, sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. Get free awareness materials year-round from ThyCa.
  • 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.

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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.

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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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: Leah Guljord, Pat Paillard, Barb Statas, Deb S., Jo Walker, 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.


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