ThyCa NEWS NOTES – August 2008

In This Issue

September Is Thyroid Cancer Awareness Month: Help Raise Awareness!

Free Downloadable Tools and Tips Available at www.thyca.org

While many cancers are decreasing in incidence, thyroid cancer is one of the few cancers continuing to increase, with a new record total of 37,340 people expected to be diagnosed in the United States in 2008. When detected early, most thyroid cancers are treatable; however, some are aggressive and difficult to treat. These are some of the many reasons why ThyCa: Thyroid Cancer Survivors’ Association, Inc. sponsors Thyroid Cancer Awareness Month each September.

This month will highlight the year-round activities of ThyCa volunteers to:

  • increase thyroid cancer education;
  • raise awareness of the importance of early detection, treatment, and lifelong monitoring;
  • inform the public about ThyCa’s free information, resources and support; and
  • raise awareness of the need for more thyroid cancer research.

The message for Thyroid Cancer Awareness Month is “Find It Early.” When detected early, most thyroid cancers are treatable. Early detection is the key to improving outcomes. Patient and caregiver education is also important, because thyroid cancer requires lifelong monitoring as recurrences can occur even decades after the diagnosis and initial treatment.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org) encourages people to ask for a neck check each time they visit their doctor.. Signs to discuss with the physician include a lump or fullness in the neck, lymph node swelling, difficulty breathing or swallowing, or voice changes.

“Health care professionals are essential to the detection of thyroid cancer,” says ThyCa Executive Director Gary Bloom of Olney, Maryland, himself a thyroid cancer survivor. “Done properly, a neck check can be as simple as touching the neck and watching the patient swallow. This can be done very quickly and won’t cause any delays for the medical office, but that minute could make all the difference in the world when it comes to diagnosing thyroid cancer. Most thyroid cancer is treatable if found early, but some types are very aggressive and difficult to treat.”

ThyCa invites everyone interested to help with thyroid cancer awareness efforts in their communities. A few of the activities already organized:

  • In Virginia, a ThyCa volunteer is organizing a thyroid cancer awareness exhibit for her workplace.
  • In South Carolina, a thyroid cancer survivor who is a dental hygienist will give awareness materials to accompany the neck checks that the dentist routinely does for thyroid nodules and other conditions.
  • In Colorado, Linda and Carl Allphin, facilitators of the ThyCa Southern Colorado Support Group, sent public service announcements and a press release, available on ThyCa’s web site, to radio stations and newspapers.
  • In New Jersey, Michael Dubrow, facilitator of the ThyCa Central New Jersey Support Group, organized a thyroid cancer awareness materials display in conjunction with a physician’s talk on “Troubled Thyroid” at the Robert Wood Johnson Center for Health and Wellness in Hamilton.
  • In California, Joel Amromin, Bart and Shilo Bartlett, and Riva Goldman are representing ThyCa at the nationally televised Stand Up To Cancer event being broadcast Friday, September 5th on ABC, CBS and NBC.
  • In West Virginia, thyroid cancer survivor, John Breen of WDTV News Channel 5, recorded public service announcements, available on www.thyca.org, for thyroid cancer awareness as well as for the 11th International Thyroid Cancer Survivors’ Conference.
  • In the District of Columbia, a nursing instructor and students are distributing awareness materials to health displays and bulletin boards in apartment complexes.
  • In Ohio, a volunteer is passing out brochures at her office, a housing organization.
  • In South Carolina, a thyroid cancer survivor plans to give a presentation on thyroid cancer awareness and distribute awareness materials to the attendees in the community group.
  • Throughout the United States, volunteers in ThyCa-affiliated thyroid cancer support groups are reaching out to local media to spread the message of early detection and lifetime monitoring,
  • Around the world, throughout the year, people are requesting free materials from ThyCa to raise awareness in their countries.

ThyCa’s web site has several hundred pages of information about all types of thyroid cancer, diagnosis, treatment, research, clinical trials, questions to ask your doctor, local support groups, e-mail support groups, a calendar of coming events, the Rally for Research, and the only annual thyroid cancer survivors’ conference in the world, to be held this year on October 17-19, 2008, in St. Louis, Missouri. Web site visitors can also download ThyCa’s free publications, including awareness flyers, a Low Iodine Cookbook, fact sheets, and online newsletters.

In addition, ThyCa’s web site has a section titled Thyroid Cancer Awareness Month with downloadable flyers entitled, “Find It Early” and “Know the Signs,” a fact sheet titled “About Thyroid Cancer” and more materials. Free awareness brochures featuring actress and thyroid cancer survivor, Catherine Bell, co-star of two hit TV series, “Army Wives” and “J.A.G.,” are also available.

For information and free materials about thyroid cancer, ThyCa’s free support services, and the annual conference, e-mail to thyca@thyca.org, call toll free 1-877-588-7904, fax to 1-630-604-6078, write to PO Box 1545, New York, NY 10159-1545, or visit the web site.

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Clinical Trials News: Another Clinical Trial for Anaplastic Thyroid Cancer

ThyCa’s web site has now added information about a second clinical trial for Anaplastic Thyroid Cancer (ATC). The study title is Phase 1/2 Study of CS-7017, an Oral PPAR Agonist, in Combination with Paclitaxel in Subjects with Advanced Anaplastic Thyroid Cancer.

Our web site also has information about a Phase III ATC Clinical Trial.

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Tap into the Power of Peers

Tap into the “Power of Peers” this October as ThyCa: Thyroid Cancer Survivors’ Association presents a conference of compelling educational sessions with a lineup of renowned thyroid cancer experts.

The Conference offers a unique perspective for individuals living with thyroid cancer as well as for family members or health care professionals looking for ways to best help their loved-ones and their patients by partnering with them on their thyroid cancer journey.

JOIN US:
October 17-19, 2008
St. Louis, Missouri
The 11th International Thyroid Cancer Survivors’ Conference

EXPERIENCE THE POWER OF:

INSPIRATION. Through the unique peer perspectives of fellow survivors and caregivers coping with all types of thyroid cancer.

KNOWLEDGE. Through EDUCATIONAL SESSIONS led by more than 25 internationally renowned experts in thyroid cancer.

SKILLS. Through numerous sessions that offer tools and strategies to survivors, volunteers, advocates, and family members.

UNDERSTANDING, DISCOVERY, and LAUGHTER. Through special sessions led by specialists in coping and complementary approaches.

CONNECTION. Through PEER ROUNDTABLE SESSIONS where peers share ideas and personal strategies based on their experience in a variety of wellness- and coping-focused topics.

ENCOURAGEMENT. Through SUPPORT GROUPS held during the conference to provide a forum for mutual acceptance and self-discovery.

COMMUNITY. Through a conference weekend where you can connect with old and new friends to network and share stories, wellness tips and hope.

Go to www.thyca.org for details and registration.

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Conference Preview: Speaker Introductions

We’re honored to introduce 28 distinguished medical professionals plus numerous other specialists already confirmed for the 11th Annual International Thyroid Cancer Survivors’ Conference, to be held in St. Louis, Missouri on October 17-19, 2008.

This educational and supportive weekend offers more than 100 session choices on the latest in thyroid cancer testing, treatment, and research, plus coping skills sessions and survivor-caregiver peer support roundtables.

  • MEDICAL PROFESSIONALS AND OTHER SPECIALISTS
  • Oralia V. Bazaldua, Pharm.D., FCCP, BCPS, Pharmacist, University of Texas Health Science Center at San Antonio, TX
  • James H. Boyd, M.D., Surgeon, St. John’s Mercy Medical Ctr, St. Louis, MO
  • Marcia S. Brose, M.D., Ph.D., Medical Oncologist, University of Pennsylvania, Philadelphia, PA
  • Rebecca Brown, M.D., Endocrinologist, University of Chicago Medical Center, Chicago, IL
  • A. Cahid Civelek, M.D., Nuclear Medicine Physician, University of Louisville, Louisville, KY
  • Kevin Ferris, M.S.W., L.C.S.W., C.M.C.,Wellness Community, St. Louis, MO
  • Perry W. Grigsby, M.D., Nuclear Medicine Physician, Washington Univ. School of Medicine, St. Louis, MO
  • Elizabeth Grubbs, M.D., Surgeon, University of Texas, M.D. Anderson Cancer Center, Houston, TX
  • Ian D. Hay, M.D., Ph.D., Endocrinologist, Mayo Clinic, Rochester, MN
  • Mimi Hu, M.D., Endocrinologist, University of Texas, M.D. Anderson Cancer Center, Houston, TX
  • Uzma Khan, M.D., Endocrinologist, University of Missouri, Columbia, MO
  • Paul R. Krakovitz, M.D., Otolaryngologist, Cleveland Clinic Foundation, Cleveland, OH
  • Bryan McIver, M.D., Ph.D., F.R.C.P., Endocrinologist, Mayo Clinic, Rochester, MN
  • Mira Milas, M.D., Endocrine Surgeon, Cleveland Clinic Foundation, Cleveland, OH
  • Jeffrey F. Moley, M.D., Surgeon, Washington University School of Medicine, St. Louis, MO
  • David Myssiorek, M.D., F.A.C.S., Otolaryngologist, New York University Cancer Center, New York, NY
  • Robert G. Oesch, Esq., Attorney, Riezman Berger, P.C.,Clayton, MO
  • Ron Rain, D.Min., Wellness Community, St. Louis, MO
  • Elizabeth Reinsch, Ph.D., A.C.S.W./ L.C.S.W., University of Missouri Extension, St. Louis, MO
  • Scot C. Remick, M.D., Medical Oncologist, Mary Babb Randolph Cancer Center, Morgantown, WV
  • Matthew D. Ringel, M.D., Endocrinologist, Ohio State University College of Medicine, Columbus, OH
  • Joseph Scharpf, M.D., Surgeon, Cleveland Clinic Foundation, Cleveland, OH
  • Pamela Schultz, R.N., Ph.D., Endocrine Research Nurse/Educator, New Mexico State Univ, Las Cruces, NM
  • Steven I. Sherman, M.D., Endocrinologist, Univ. of Texas, M.D. Anderson Cancer Center, Houston, TX
  • Edward B. Silberstein, M..D., Nuclear Medicine Physician, University of Cincinnati, Cincinnati, OH
  • Jennifer A. Sipos, M.D., Endocrinologist, University of Florida Shands Cancer Center, Gainesville, FL
  • Julie Ann Sosa, M.D., M.A., Surgeon, Yale University School of Medicine, New Haven, CT
  • Beatriz Tendler, M.D., Endocrinologist, University of Connecticut Health Center, Farmington, CT
  • R. Michael Tuttle, M.D., Endocrinologist, Memorial Sloan-Kettering Cancer Center, New York, NY
  • Irini E. Veronikis, M.D., Endocrinologist, St. Johns Mercy Medical Center, St. Louis, MO
  • Steven G. Waguespack, M.D., Endocrinologist, Univ. of Texas, M.D. Anderson Cancer Center, Houston, TX
  • Christopher Wolken, D.D.S., Dentist, St. Louis, MO
  • and more to be confirmed

For conference questions, or to volunteer, e-mail to conference@thyca.org.

We look forward to seeing you in St. Louis!

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What’s New on the Web Site?

Our award-winning web site www.thyca.org received more than 330,000 hits in July.

Every week, and sometimes more often, our web site adds information pages and free resources for survivors, caregivers, professionals, and the public. Thank you to Webmistress Betty Solbjor of Massachusetts, Webmaster Joel Amromin of California, the members of ThyCa’s Publications Committee, and the more than 50 thyroid cancer experts who give review and input to the web site.

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Help Support the Rally for Research 2008

More research for cures for all thyroid cancer is urgently needed. We are proud to have awarded new research grants in 2008, as well as continuation grants.

ThyCa’s research grants are open to researchers and institutions worldwide.

Wherever you are, you can help. If you’re coming to St. Louis for the Conference, you are cordially invited to join us at our annual Dinner/Auction Research Fundraiser. The reservation form is on our web site.

Or, if you can’t come to St. Louis, you’re welcome to donate an item for the auction, or sponsor someone to attend, or make a direct donation to ThyCa’s Research Funds.

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Awareness Story: How My Thyroid Cancer Was DiscoveredBy Karen, New York, New York

In early 2008 I was suffering from post-concussion syndrome and my neurologist sent me for a routine MRI. That’s when I found out I had multiple nodules on my thyroid.

In May 2008 I had a biopsy done and was told I had papillary cancer. I never thought a 23-year-old, athletic female with no history of thyroid cancer in her family could get it. True, I have been hypothyroid in the past, but this…this is cancer.

In June 2008 I had a total thyroidectomy and during that surgery my right vocal cord nerve was cut. Since then I have had a very difficult time speaking. Soon I will have radioactive iodine treatments to eliminate the cancer. I want to urge everyone to get routine checks done and don’t wait. You don’t have to have a history of cancer in your family to get it. This can happen at 0any age!

Thank you, ThyCa
!by Pat Paillard

I was at work when I got my diagnosis. My doctor had called and I had to ask what the biopsy showed. I was told, “Suspicious for Papillary Carcinoma.” That was all, no explanation, just that “it” needed to come out. I asked, “The nodule or the whole thyroid?” and was told the entire thyroid.

Well, I had never even heard of thyroid cancer, didn’t know the thyroid could get cancer, and never heard of anyone having this disease.

When I got home I went on the Internet and the first site that came up was ThyCa. Wow, what a lot of information I now had. I wanted to know everything about this thyroid cancer and was very informed when I left the Internet.

I subsequently joined ThyCa and am very glad I did. I continue to be amazed at how much is offered from this group. I attended the conference last year and was very pleased with the sessions and speakers and how friendly everyone was. I encourage everybody to attend this year’s conference, because you will come away from it with information you never knew existed and perhaps some new friendships as well.

Don’t be alone with this disease. Share your experience with it, either by the Internet or in person at the conferences or at the monthly support group meetings. You are not alone, and with ThyCa you will never be alone. Come and join us!

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Low-Iodine Recipe of the MonthBy Jill W., New Orleans, Louisiana

I am on a low-iodine diet to prepare for the radioiodine treatment (I am having it in 1 1/2 weeks). This is a recipe that I really liked to make previously, and I made some modifications to make it low-iodine friendly. It is really tasty – even my non-thyroid impaired boyfriend loved it!

Charlie’s Chicken Salad

Non-iodized (non-sea) salt
3 or 4 boneless, skinless chicken breasts
3/4 Cup chopped celery
1 1/2 Cups seedless red grapes, halved
1/2 Cup unsalted, raw pine nuts
3/4 Cup Russ’s Blender Mayonnaise (on page 18 of the www.thyca.org free low-iodine cookbook)
Mrs. Dash brand seasoning blend (I used the original blend, but any one would work)

Poach the chicken breasts in water seasoned with non-iodized salt. Once chicken breasts have cooled, shred chicken into small pieces. Season chicken with Mrs. Dash brand seasoning blend (whichever you prefer) and salt to taste. Coat chicken with Russ’s Blender Mayonnaise. Combine with celery, grapes, and pine nuts. Refrigerate until cool for best results. Eat “as is,” or on Matzo crackers, or with No-Yolks brand egg white pasta. Makes 4-6 servings.

Thank you, Jill! 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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Coming Events

– Each Month: Meetings of Local Thyroid Cancer Support Groups. More than 70 groups. Meetings are held in states coast to coast, as well as Costa Rica and Philippines.. Each group has its own web page. These meetings are wonderful ways to talk with other survivors and caregivers face to face.

  • September 2008: Thyroid Cancer Awareness Month. Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. Find out how you can help raise awareness for early detection, and connect others with ThyCa’s free services, resources, and events.
  • Friday, Saturday, Sunday, October 17, 18, and 19, 2008: St. Louis, Missouri. The 11th International Thyroid Cancer Survivors’ Conference. Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. Conference location: Sheraton Westport Hotel, 191 Westport Plaza, St. Louis, MO 63146. Learn from experts and share experiences with others coping with thyroid cancer. More than 80 session choices: The latest research, advances in treatment and follow-up, insurance and employment issues, and coping skills for well-being. More than 50 speakers will include leading physicians and other specialists. The hotel has arranged special room rates of $99 for conference attendees for single, double, triple, or quad rooms.
  • Saturday, October 18, 2008 from 6 p.m. to 9 p.m.: St. Louis, Missouri.
    ThyCa’s 7th Annual Dinner/Auction to Support Research. Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. To be held in conjunction with the 11th International Thyroid Cancer Survivors’ Conference. At the Sheraton Westport Hotel, 191 Westport Plaza, St. Louis, MO 63146.

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Every Day….

Thousands of people receive help and hope from ThyCa.

What ThyCa Can Do For You:

  • Give free information and numerous downloadable publications on thyroid cancer
  • Offer support via the Internet, local support group meetings, and person-to-person contacts
  • Supply materials on thyroid cancer that you can’t find elsewhere
  • Offer you an annual conference and regional workshops where you can meet other survivors, get answers to your questions about thyroid cancer, treatments, medications, and more, from doctors who are approachable and experts in thyroid cancer
  • Make available to you, via the internet, printable flyers, articles, and newsletters that give the latest information on thyroid cancer
  • Have people available who have been through this disease and are very willing to share their experiences and help you out

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Do You Want To Make More People Aware of Thyroid Cancer?

We encourage you to share your story/experience since your diagnosis of thyroid cancer with us. We will include short vignettes in upcoming issues of the Newsletter in recognition of Thyroid Cancer Awareness Month and our year-round awareness activities.

Help ThyCa raise awareness in this way. You will become someone who is informing others about a disease that is rarely discussed in the media but should be because it is one of the cancers that is on the rise. Its number is growing.

If everyone knew the signs; knew what to expect before, during and after treatment; and requested a thorough “neck check” from their physician, maybe everyone would be diagnosed at an early stage.

If community in general becomes more aware of thyroid cancer, perhaps we will also have more Thyroid Cancer Research.

Send your story to publications@thyca.org. Help us “get the word out!”

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Get Involved— Five More Ways You Can Help:

  1. Tell others about www.thyca.org and our toll-free survivors’ line 1-877-588-7904
  2. Raise Awareness of Thyroid Cancer—Get Free Materials
  3. Volunteer: We’ll help you find an activity to match your time and talents!
  4. Become a ThyCa Member: We welcome Annual, Two-Year, and Lifetime Members. Thank you to all.
  5. Donate: Make your tax-deductible donation by mail or online, or give a tribute gift in honor of someone special.

Special Thanks to the hundreds of wonderful volunteers who help ThyCa throughout the year.

You are bringing help and hope to people worldwide by raising awareness, and sustaining and extending our outreach, support services, and special events, as well as fundraising to strengthen our services and support for thyroid cancer research for cures for all thyroid cancer.

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

Thank you to Pat Palliard, Gary Bloom, Karen (NY), Jill W., and Cherry Wunderlich, for writing, editing, and proofreading this newsletter.

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

We invite you to send News Notes to 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..