ThyCa Announces Three Free One-Day Thyroid Cancer Survivors’ Workshops for April and May 2006

Thyroid cancer patients, families, and friends are invited to three free one-day regional workshops sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Physicians with expertise in thyroid cancer care and research will speak and answer questions at these educational and supportive events.

People at any phase of testing, treatment, or follow-up for thyroid cancer, as well as their caregivers and others interested in thyroid cancer are welcome to attend.

These educational and supportive programs are free of charge. Attendees may register on site at each event. The dates and locations include:

  • Saturday, April 22, 2006—Midwest Thyroid Cancer Survivors’ 2nd Annual Workshop, from 8 a.m. to 5 p.m. at the David C. Pratt Cancer Center, St John’s Mercy Cancer Center, 615 South New Ballas Road, St. Louis, Missouri
  • Saturday, April 22, 2006—New England Thyroid Cancer Survivors’ 5th Annual Workshop, from 9 a.m. to 4 p.m. at the Massachusetts General Hospital, 55 Fruit Street, Boston, Massachusetts
  • Saturday, May 13, 2006—Mid-Atlantic Thyroid Cancer Survivors’ 5th Annual Workshop, from 9 a.m. to 5 p.m. at the Washington Adventist Hospital, 7600 Carroll Avenue, Takoma Park, Maryland (near Washington, DC, and I-495)

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a national nonprofit 501( c) (3) organization providing person-to-person support, local support groups, a free downloadable low-iodine cookbook, a free online newsletter, awareness materials, and other resources to thyroid cancer survivors, their families, and the public at no charge. ThyCa also funds thyroid cancer research grants, sponsors Thyroid Cancer Awareness Month in September, and will hold its 9th annual international conference in Orlando, Florida, on October 27-29, 2006.

For more information, visit www.thyca.org, write PO Box 1545, New York, NY 10159-1545, call toll-free to 877-588-7904, fax to 630-604-6078, or e-mail to thyca@thyca.org.

ThyCa Web Site (www.thyca.org) Offers Information and Support

Patients with thyroid nodules or the most common types of thyroid cancer, as well as their physicians, now have an informative new resource: The American Thyroid Association’s (ATA) updated guidelines for diagnosis of thyroid nodules and treatment of papillary and follicular thyroid cancer and their variants.

The guidelines, pre-published in January 2006 at
(http://www.liebertonline.com/doi/pdf/10.1089/thy.2006.16.ft-1) and in the
ATA journal Thyroid in February 2006, give 85 recommendations, together with background information and more than 300 references.

“On behalf of thyroid cancer patients and families, we congratulate and thank the American Thyroid Association for this valuable new resource for physicians and patients,” said Gary Bloom, Board Chair of ThyCa: Thyroid Cancer Survivors’ Association, Inc.

“ThyCa was proud to provide a grant to ATA to help support the development of these important guidelines,” he added. “Education is central to ThyCa’s mission, and these guidelines will greatly aid patient and caregiver education. We invite thyroid cancer patients and family members to read the guidelines, to aid their communication with their physicians about their diagnosis, treatment, and follow-up monitoring, based on their individual needs.”

The ATA first published guidelines on this topic in 1996. The new guidelines take into account the significant advances in the diagnosis and treatment of both thyroid nodules and differentiated thyroid cancer since then.

ATA’s 10-member Guidelines Task Force, composed of experts in endocrinology, surgery, and nuclear medicine from leading academic and research institutions from across the United States, included five of ThyCa’s medical advisors, as well as three additional thyroid cancer specialists who have spoken at ThyCa conferences. In addition, the authors of the medical literature reviewed to develop the guidelines included more than 40 specialists who have spoken at ThyCa’s annual international conferences and other educational events.

“These new guidelines will help physicians not well-versed in thyroid cancer to better manage their patients,” said ATA Task Force Chair and ATA President-Elect David S. Cooper, M.D., Director of the Division of Endocrinology at Sinai Hospital of Baltimore, Maryland, and Professor of Medicine at Johns Hopkins University School of Medicine. “In addition, for those who are very experienced thyroidologists, the guidelines should help them manage complex cases as well as understand the controversies better and where further research needs to be done.”

The guidelines also address many controversial treatmentissues. These include identifying the most cost-effective approach for diagnostic evaluation of thyroid nodules, the extent of surgery needed for small thyroid cancers, the appropriate use of thyroxine suppression therapy, the role of recombinant human thyrotropin, and the use of radioactive iodine to ablate remnant tissue following
thyroidectomy.

The recommendations also address the importance of the timely and accurate diagnostic evaluation of thyroid nodules to rule out thyroid cancer and on therapeutic strategies for differentiated thyroid cancer, which represents approximately 90 percent of the estimated 26,000 cases of thyroid cancer diagnosed each year in the United States.

The guidelines include hands-on information for the follow up and treatment of thyroid nodules, including the role of medical therapy. The goals of therapy for differentiated thyroid cancer, strategies for staging thyroid tumors, the role of adjunctive external beam radiation and chemotherapy, and long-term management issues are also provided.

“I am gratified that the ATA had the foresight to develop evidence-based guidelines that will enable physicians who care for patients with thyroid disease to do so rationally, judiciously, and cost effectively,” said Dr. Cooper.

The American Thyroid Association is a nonprofit professional medical society composed of physicians and scientists dedicated to enhancing the understanding of thyroid physiology and pathophysiology, improving diagnosis and treatment of thyroid diseases, and promoting the education of physicians, patients, and the public about thyroid disorders.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a national nonprofit 501( c) (3) organization providing person-to-person support, support groups, a free downloadable low- iodine cookbook, a free online newsletter, awareness materials, and other resources to thyroid cancer survivors, their families, and the public at no charge. ThyCa also funds thyroid cancer research grants, sponsors Thyroid Cancer Awareness Month in September, and will hold its 9th annual international conference in Orlando, Florida, on October 27-29, 2006.

For more information, visit www.thyca.org, write PO Box 1545, New York, NY 10159-1545, call toll-free to 877-588-7904, fax to 630-604-6078, or e-mail to thyca@thyca.org.

On Saturday, January 21, 2006, from 10:30 a.m. to 12 noon, Sandra Williams, M.D., endocrinologist, and Jay Roberts, M.D., surgeon, both of the Cleveland Clinic, will speak and answer questions about thyroid cancer treatment and research at HealthPark, Lee Memorial Health System, 9981 South HealthPark Drive, Fort Myers, Florida.

The free program is hosted by the ThyCa Suncoast Thyroid Cancer Support Group, which is affiliated with the national nonprofit ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Fort Myers residents Jan Scheuerman and Sally Fontaine facilitate the support group and invite people at all phases of testing, treatment, and follow-up for thyroid cancer, as well as their families and friends and anyone else interested to attend.

Frank Bireley of Fort Myers, survivor of medullary thyroid cancer, will also speak at the meeting and will tell about his experience in a new clinical trial for this rare type of thyroid cancer. Volunteers will also serve free coffee and muffins to attendees.

For more information or directions to HealthPark, e-mail to suncoast@thyca.org, call Jan Scheuerman at 239-560-8495 or Sally Fontaine at 239-590-0797.

Free services and resources for thyroid cancer survivors are organized nationwide by ThyCa: Thyroid Cancer Survivors’ Association, Inc. ThyCa is a national nonprofit, volunteer organization providing person-to-person support, support groups, a free downloadable low- iodine cookbook, a free online newsletter, awareness materials, and other resources to thyroid cancer survivors, their families, and the public at no charge. ThyCa also funds thyroid cancer research grants, sponsors Thyroid Cancer Awareness Month in September, and will hold its 9th annual international conference in Orlando, Florida, on October 27-29, 2006.

For more information, visit www.thyca.org, write PO Box 1545, New York, NY 10159-1545, call toll-free to 877-588-7904, fax to 630-604-6078, or e-mail to thyca@thyca.org.

IN THIS ISSUE

Thyroid Cancer Increases Again in 2007
Endocrinologist To Speak at Baltimore Support Group Meeting
Costa Rica’s First Thyroid Cancer Support Group Begins Meeting
New Support for Pediatric Thyroid Cancer Families
     –The Backpack Project
     – LID for Kids
ThyCa Spring Workshops Expand To More New Locations
More Coming Events

Thyroid Cancer Increases Again in 2007
New Record Total Expected; ThyCa Urges Early Detection Through Neck Checks

Thyroid cancer, one of the few cancers that is increasing in incidence, is expected to reach a new record of 33,550 people newly diagnosed in the United States in 2007.

This is 11 percent higher than last year’s record numbers, and about double the number from 10 years ago, according to information from the U.S. Department of Health and Human Services and the American Cancer Society. The number of deaths is expected to increase by 2% over last year, to 1,530 in 2007.

Thyroid cancer is usually treatable when found early.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org) urges everyone to learn about thyroid cancer and to request a neck check at each doctor’s appointment. ThyCa is a national nonprofit 501(c)(3) organization of thyroid cancer survivors, family members, and health care professionals, dedicated to education, communication, support, awareness for early detection, and thyroid cancer research fundraising and research grants.

For free awareness materials and more information about thyroid cancer, 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 www.thyca.org.

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Endocrinologist to Speak at February Meeting of ThyCa Baltimore Support Group

On Saturday, February 10, 2007, Corina C. Fratila, M.D., Endocrinologist, Bay West Endocrine Associates, Baltimore, Maryland, will speak and answer questions about thyroid cancer treatment and research.

The free program will take place from 10:30 a.m. to 12 noon at The Cancer Institute at Sinai Hospital 2402 West Belvedere Avenue, Baltimore, Maryland. The event is hosted by the ThyCa Baltimore Thyroid Cancer Support Group, which is part of the support network of the national nonprofit ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Marion Hammond, ThyCa Baltimore support group facilitator, invites people at all phases of testing, treatment, and follow-up for thyroid cancer, as well as their families and friends and anyone else interested to attend. Sinai Hospital is located in northwest Baltimore, off Northern Parkway, just 3 miles south of the Baltimore County Line. Directions to the hospital are at the end of this newsletter.

For more information, e-mail to Baltimore-MD@thyca.org, or visit the ThyCa Baltimore web page. ax to 630-604-6078, or e-mail to thyca@thyca.org.

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Costa Rica’s First Thyroid Cancer Support Group Begins Meeting

We are excited to welcome Costa Rica’s first thyroid cancer support group. This new group meets monthly in San José, Costa Rica, and is sponsored by ASOCCATI ThyCa Costa Rica in affiliation with ThyCa: Thyroid Cancer Survivors’ Association. The volunteer facilitator is Teresa Saprissa. For more information, e-mail costarica@thyca.org or visit the new group’s web page.

“We are pleased that Costa Rica now has this important new resource,” said ThyCa’s Support Groups Coordinator Sara Gorrell Brenner. “Our support groups help people meet and share experiences, to cope with the challenges of thyroid cancer.”

If you live near a ThyCa support group, we encourage you to attend and meet other thyroid cancer survivors and caregivers in your area. Groups now meet throughout the United States, as well as in Costa Rica and Philippines.

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New Supports Added for Pediatric Thyroid Cancer Famiilies

– The Backpack Project

Dear Friends,

A wonderful caring young teen from Maine, who has thyroid cancer, has developed a wonderful way to help us care for the children going through this disease. Tim is working on his Eagle Scout Merit Badge and came up with this terrific community service project. We at ThyCa are so pleased with his efforts in reaching out to others.

Tim came up with the idea of the ” Backpack Project” with thyroid cancer information and some small gifts to put in the hands of newly diagnosed children and teens. You know the song with the phrase “With a little help from my friends…” Well, cancer makes you friends with a lot of different people! A young lady from Michigan, Paula Langley, Miss Oakland County’s Outstanding Teen, assisted Tim with his effort.

The free backpacks are now available from ThyCa. To request one for a child or teen dealing with thyroid cancer, call 1-877-588-7904 or e-mail to thyca@thyca.org.

I can’t thank Tim enough for his brilliant idea and hard work!

In closing, I want you to keep advocating for your child and to continue spreading the word about ThyCa!

Warmly,
Lauri Huber
Moderator, Pediatric Thyroid Cancer E-Mail Support Group

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– Low-Iodine Diet for Kids — Tips and Recipes

Melissa and Joe from Pennsylvania have told their friends in ThyCa’s Pediatric Thyroid Cancer E-mail Support Group about their little daughter Katie’s battle with thyroid cancer. Katie was 8 years old when diagnosed, and her case was quite advanced. Melissa and Joe did a lot of research and, because they were their daughter’s best advocates, are pleased to report that Katie has made remarkable strides in beating her cancer.

Melissa came up with a kid-friendly Low Iodine Diet for Katie and has graciously allowed ThyCa to share it with everyone. She did a great job, and we’re pleased to announce it’s now available on the Pediatric Thyroid Cancer Web site.

You can also request a copy by sending a SASE to:
ThyCa LID for Kids, P.O. Box 1545, New York, NY 10159-1545

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ThyCa Spring Workshops Expand to More Locations
Learn from Experts
Meet Other Survivors and Caregivers
FREE

We’re excited to announce the expansion of our annual one-day educational workshops for 2007.

These events are FREE. We welcome everyone interested in learning more about thyroid cancer. Each workshop will have physician speakers, plus survivor/caregiver roundtables. You can also pick up free materials from the resource tables. Register on site at the workshop.

Saturday, March 3, 2007
Arizona Thyroid Cancer Survivors’ Workshop
Scottsdale, Arizona
8 a.m. to 4:30 p.m.

Saturday, April 21, 2007
New Jersey Thyroid Cancer Survivors’ Workshop
Voorhees, New Jersey

Saturday, April 28, 2007
Midwest Thyroid Cancer Survivors’ 3rd Annual Workshop:
St. Louis, Missouri
8 a.m.- 5 p.m.

Saturday, May 12, 2007
Mid-Atlantic Thyroid Cancer Survivors’ 6th Annual Workshop
Baltimore, Maryland
8 a.m. to 5 p.m.

New England Thyroid Cancer Survivors’ 6th Annual Workshop
Boston, Massachusetts
Date to be announced.

Texas Thyroid Cancer Survivors’ Workshop
Dallas, Texas
Date to be announced.

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Coming Events — Mark the Dates!

Every Month: Free meetings of local support groups. More than 70 groups throughout the United States, and in Costa Rica and Philippines.

Spring 2007: Free one-day regional Thyroid Cancer Survivors’ Workshops.
Details now on the web site. Contact thyca@thyca.org or call 1-877-588-7904

September 2007: Thyroid Cancer Awareness Month. Plus year-round awareness campaigns and free materials

October 19-21, 2007: The 10th International Thyroid Cancer Survivors’ Conference, San Francisco, California

October 20, 2007: The 6th Annual Dinner/Auction to Support Thyroid Cancer Research, San Francisco, California.

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You Can Help Raise Awareness!
Contact us for free thyroid cancer awareness materials! Plastic wallet cards, awareness brochures, flyers for early detection, and more. Support our efforts to raise awareness for early detection, treatment, and lifelong monitoring. E-mail thyca@thyca.org, or call 1-877-588-7904, or fax to 1-630-604-6078.

Copyright (c) 2007 ThyCa: Thyroid Cancer Survivors’ Association, Inc. We encourage you to send these News Notes to your family and friends. For permission to reprint in another electronic or print publication, please contact us.

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 public awareness for early detection, lifetime health monitoring, and thyroid cancer research fundraising and research grants. E-mail thyca@thyca.org, call 1-877-588-7904, or visit www.thyca.org.

IN THIS ISSUE

Letter from the Editor

As I write this, 2006 is just beginning. It’s time to take stock of the last 12 months and think about the year ahead.

Of course, taking stock isn’t relegated to January 1 alone. Birthdays also do the trick. And not surprisingly, so does a thyroid cancer diagnosis. I particularly remember one “ah ha!” moment in the midst of my treatment. I decided that I thought too much about the future. I needed to be more engaged in the present. I’d always wanted to learn to play the piano. Why not do it now? I planned to become more physically fit. No sense delaying. There was little point in putting things off for some amorphous future.

So let’s take stock: This year, I took things for granted. Another 365 days gone, and I still can’t play a note on the piano. I have yet to visit continental Europe, and I worked more than I should have. There’s a list of books I want to read that only gets longer (though I think that’s a good thing).

I’m still putting a lot of things off for that amorphous future. And I’ve decided that’s okay. Thyroid cancer gave me “ah ha!” moments that I wouldn’t trade back. But six years on, few things make me happier than knowing that I am once again taking things for granted. Though this year, I really do plan to start those piano lessons…..

May the New Year bring you health and happiness.
Barbara Weinstein,
Editor

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2005 Conference Overview and Highlights

Highlights from the 8th International Thyroid Cancer Survivors’ Conference in Denver, Colorado, on October 21-23, 2005:

  • More than 400 thyroid cancer survivors, caregivers, and health care professionals gathered from 37 states, District of Columbia, Canada, and the Philippines.
  • Attendees ranged from people newly diagnosed to survivors of more than 30 years, from children through seniors, as well as caregivers. Numerous physicians, nurses, and other medical professionals also attended for the 3 days to share in the conference experience.
  • The 100-plus sessions included 35 physician presentations and Ask-a-Doctor sessions about the latest advances in thyroid cancer care and research, including promising clinical trials. The 22 physician speakers came from the Cleveland Clinic, University of Colorado Health Sciences Center, Duke University, University of Florida, University of Texas M.D. Anderson Cancer Center, Washington University School of Medicine, and other major centers.
  • Featured speakers also included three pharmacists, a dentist, 5 nurses, a dietitian, 3 attorneys, a psychologist, specialists in complementary approaches to well-being, survivors of each type of thyroid cancer (papillary, follicular, medullary, anaplastic, and variants), and caregivers. Also speaking were Denver 7News Anchor Theresa Marchetta and National Memory Champion Scott Hagwood, both of whom are thyroid cancer survivors.
  • Feedback was uniformly positive. Sample comments:
  • Great job EVERYONE!!! We just wanted to let you know how much the conference means to us. We appreciate all the hard work, time and sacrifice by all. It was really worth it,” wrote an attendee from Illinois.
  • This was my first conference and I am so glad that I went,” wrote a thyroid cancer survivor from Nevada. “When I was diagnosed 20 years ago, I felt very alone. Well, I didn’t feel alone this weekend. Everyone (survivors, caregivers, doctors, etc.) was very compassionate.”
  • “This conference has made me look at my disease in a whole new way,” another attendee reported.
  • This unique educational and supportive event is sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org) and organized and run by ThyCa volunteers.

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Dinner/Auction a Big Success

During the Denver conference weekend, Friday evening’s Dinner/Auction to benefit thyroid cancer research drew a large attendance. The evening featured inspirational talks by ThyCa volunteers Jeff Klaas, Bob Legler, and Barbara Gockenbach Mosley. The evening was a tremendous success, netting more than $23,000 for ThyCa’s research funds to support thyroid cancer research grants open to investigators who are less than 6 years from completion of their post-doctoral fellowships and who have never been a principal investigator on an NIH RO1 or equivalent grant.

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Thank You from the 2005 Conference Team

Our volunteer conference team expresses our special thanks to all the conference speakers, the roundtable leaders, and the wonderful ThyCa volunteers who helped before and during our 2005 conference.

We also extend our appreciation to these generous supporters:

  • The conference exhibitors and resource material donors, including the American Cancer Society, American Thyroid Association, Colorado Cancer Control Program, Genzyme, Gilda’s Club of Denver, Mental Health Association of Denver, and National Alliance for Mental Illness Denver Chapter.
  • Massage USA for the free chair massages given during the conference.
  • Denver Reiki Practitioners and Reiki Session Coordinator Betty Solbjor for the free Reiki sessions for conference attendees.
  • Genzyme for providing representatives to answer questions about insurance coverage and access to Thyrogen
  • AstraZeneca for the refreshments at our Volunteer Appreciation Reception and Annual Meeting.

Thank you from our 2005 Conference Planning Team: Tina Anders, Bryan Benesch, Gary Bloom, Cathy Bruce, Jody Campbell, Ron Grafman, Jan Halzel, Cheri Wallace Lindle, Peggy Melton, Pattie Scott, Megan Stendebach, and Cherry Wunderlich

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Come to Orlando, Florida on October 27-29 2006 for the 9th International Thyroid Cancer Survivors’ Conference

For details visit www.thyca..org
Or e-mail to conference@thyca.org

Invitation

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SESSION HIGHLIGHTS

Four-Time National Memory Champion Scott Hagwood Shares Tips that Improve Memory

“We tend to think that we have terrible memories. Actually, they’re extraordinary,” said Scott Hagwood during the session he led at our 2005 conference in Denver.

Scott Hagwood spoke from his own experience. Following his diagnosis with thyroid cancer in 1999, he learned extensive memory techniques to transform himself from mediocre student to international memory champion.

At his conference session, he demonstrated his skills, taking just 82 seconds to memorize 26 cards from a shuffled deck, correctly calling them out as ThyCa Raleigh, NC, Support Group Facilitator Ann Maddox showed the cards, one by one, to the attendees.

He also explained and demonstrated how to use our 3-dimensional spatial sense to improve our ability to remember facts and instructions. Two more of his memory tips:

  • Review what you’ve just leaned after 1 hour, 1 day, 1 week, and 1 month.
  • Learn how to reduce and manage stress, because stress is the main factor that harms memory.

His book “Memory Power” was published in December 2005.

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Care of the Caregiver

(About the author: Patricia Scott, B.S., R.N., M.B.A., started her nursing/research career 20 years ago. She specialized in women’s and infants’ health care at the University of Colorado Hospital, Denver, Colorado, until her husband David was diagnosed with Anaplastic Thyroid Cancer in March 2002. She turned her energy toward learning and researching about thyroid cancer and became her husband’s primary caregiver and advocate, until his passing on February 28, 2003. Patricia continues to be involved as a volunteer for ThyCa: Thyroid Cancer Survivors’ Association, Inc., supporting and helping survivors, caregivers, and families.)

The word “extraordinary” comes to my mind, to say the least, whenever I think of a caregiver.

For the most part you inherit this position. It shows up at your doorstep, sometimes unannounced due to a series of circumstances. Or you may freely volunteer for this position.

No matter how you acquire this position, it will partially or totally change your life forever….

Once we’re placed in this position, for most of us, it totally changes the focus of our lives. In other words, we put our needs, wants, goals, and dreams aside, for the needs, wants, goals, and dreams of our loved one.

You sometimes, without even knowing it, become part of that loved one….You eat, sleep, breathe, and feel every physical and emotional change with that person….You become that person’s advocate and put your personal needs aside.

(For the full text of this presentation, visit www.thyca.org and go to the ThyCa Conference 2005 notes and handouts in the Conferences/Workshops section.)

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Notes from Medical Presentations

(The notes below are a small sample of the notes from the 2005 conference. For further details on the topics covered, plus many more topics and session handouts, visit the ThyCa web site. Go to the Conferences/Workshops section and scroll down to ThyCa 2005.)

Notes are grouped by topic. Many notes come from more than one session and speaker, and from several notetakers. Our thanks to the more than 15 volunteers who submitted their notes. It’s not too late to submit your conference notes! You can mail a copy to P.O. Box 1545, New York, NY 10159-1545, fax them to 630-604-6078, or e-mail them to conference@thyca.org. We will continue to add details to ThyCa’s web site www.thyca.org

The notes presented below are intended for educational purposes only. They are not intended, and should not be interpreted, as medical advice or directions of any kind. Any person reading these notes is strongly advised to consult their own medical doctor(s) for all matters involving their health and medical care.)

THYROID CANCER AND TREATMENT: GENERAL COMMENTS

  • There are large thyroid cancer treatment centers throughout the United States.
  • Only a small fraction of thyroid cancer patients are treated by specialists.
  • There’s a real shortage of physicians trained to handle thyroid cancer.

DIAGNOSIS

  • More than half of people over age 50 have a thyroid nodule. Most thyroid nodules are benign, not cancerous.
  • The Fine Needle Aspiration (FNA) takes representative samples from multiple locations. Biopsies are not as effective as FNA. A core biopsy removes only a single chunk, and may miss important areas.
  • It’s often helpful to use ultrasound to guide the Fine Needle Aspiration (FNA). Using ultrasound to guide the needle produces an improvement of one third to a half.
  • Benign is the most common diagnosis after FNA. Overall, about 10% of nodules are cancer.
  • Tissue analysis after surgery: The pathologist determines types, stages, malignancy, spread, presence of other disease, etc. The pathology report will state the type and any variant identified. Hurthle cell is a variant of follicular thyroid cancer (some think it is a separate variety). Variants of papillary thyroid cancer include tall cell, insular, and columnar.
  • Second Opinions on Diagnosis: Your endocrinologist and you are the best people to decide whether a second pathological opinion is needed.

SURGERY

Neck Dissection

  • Adding a central neck dissection to surgery is now a common step. 30% to 50% of patients have lymph node metastases. Central neck dissection adds 30 to 60 minutes to the surgery. It’s done through the same incision made for the thyroidectomy. It may reduce recurrence. It may increase hypocalcemia.
  • The neck has several “compartments” delineated by muscle and other structures. When the surgeon removes lymph nodes, an entire compartment of lymph nodes is removed. The surgeon should not leave some lymph nodes behind. The body has thousands of lymph nodes.

Further Surgery

  • Complex Surgery. Multidisciplinary care is needed when neighboring structures are involved.
  • Re-Operation Principles. The team needs to agree regarding the extent of disease. There should be a complete records review plus biopsy confirmation prior to surgery. There may be a pre-operative laryngoscopy to examine the larynx. A principle regarding surgery is “less is better.”

Voice Issues

  • Voice disorders associated with thyroid cancer may have three types of causes: Presurgical (benign lesions or malignant invasion of the laryngeal nerve or larynx), surgical (intubation trauma, neural trauma sign as ligation or stretching or disruption, and intentional sacrifice of the nerve), and postsurgical (vocal fold trauma/edema or hypothyroidism). Reasons for voice changes that remain after 6 months include damage to strap muscles, laryngeal nerve, or superior nerve.
  • Voice therapy through appropriate exercises can be helpful and maximizes medical treatment before surgical intervention.
  • Treatment options include vocal fold injection with a substance such as gelfoam or collagen or fat (fat injection can be repeated; the fat is taken from the body); thyroplasty (can be adjusted, is reversible; its complications can include migration of the graft and airway compromise); and re-innervation.

PAIN MANAGEMENT

  • Pain is now considered one of the vital signs.
  • Doctors need to aggressively treat pain, because pain becomes a disease in itself. Pain reduces autonomy, hinders functioning, reduces quality of life, and challenges dignity.
  • Untreated pain can also lead to the inability to tolerate the primary therapies.
    -Nobody has to live in out-of-control pain. The three steps in the ladder of pain treatment are:
    (1) for low levels: aspirin and other over the counter medications; anti-depressions, and anti-convulsants;
    (2) when pain is out of control, options include opioids (narcotics) either sustained release or nonsustained release, NSAIDs, and adjuvants;
    (3) for refractory pain, the most extreme pain, which occurs in 15-20% of patients with advanced cancer, options include spinal/epidural opioids, clonidine, local anesthetic, selective nerve blocks, neuroablation procedures, ketamine, or total sedation.

THYROID CANCER RESEARCH: BASIC, CLINICAL, TRANSLATIONAL.

  • Basic research focuses on molecular and cell biology, biophysics, pharmacology, and physiology.
  • Clinical research studies patients. It includes drug trials, clinical outcomes, national and regional tumor registries, population studies, studies on quality of life, and studies on diagnosis.
  • Translational research means going from the lab bench to the patient bedside and back to the lab.
  • Clinical trials are using new agents to treat advanced thyroid cancer.

ANAPLASTIC THYROID CANCER

  • Treat Anaplastic Thyroid Cancer (ATC) as you would treat a heart attack: immediately. The diagnosis should be made quickly if ATC is suspected. Doctors should not say “there’s nothing we can do.” It helps just to have the doctor check on the patient on a regular or daily basis.
  • Advances have occurred in recent years in tracheostomy procedures.
  • External beam radiation therapy has advanced and made treatment more precise.
  • IMRT can target the radiation and has really helped treatment.
  • Doctor-to-doctor calls may be the most effective in getting advice; doctors have both front lines and back lines.
  • ATC needs a team approach; the patient should go to a center where a team works together on ATC.
  • Follow-up for ATC: PET scans are useful. PET scans should be repeated every 3-4 months.
  • For more information, see the ATC web site on ThyCa’s web site: www.thyca.org

MEDULLARY THYROID CANCER

  • Medullary thyroid cancer patients need long-term follow-up. Lack of monitoring has proved to be detrimental to their health and longevity.
    -Medullary thyroid cancer patients need CT scans and ultrasounds periodically for follow-up monitoring.
  • External beam radiation has been effective in cases of medullary recurrence. Survival rate has increased for these patients with EBRT.
  • Prophylactic (preventive) surgery is now recommended for children shown by direct DNA analysis to have inherited MEN2A, MEN2B, or Familial medullary thyroid cancer.
  • Sporadic and hereditary cases of medullary thyroid cancer have the same protein mutations that allow the pursuit of similar methods for treatment. Phase 1 clinical trials look at the dosage and safety, Phase 2 trials look at whether the drug works, and phase 3 trials compare different drugs and/or different dosages.
  • It’s difficult to conduct effective clinical trials given the rarity of medullary thyroid cancer. Physicians are trying to formulate preventive methods, including thyroidectomy. Also are attempting to improve regulation of the production of calcitonin.
  • A clinical trial with ZD6474 is being done to treat patients with locally advanced metastatic hereditary medullary thyroid cancer. It was well tolerated in oral doses. Adverse events were generally mild. Bothersome complications are diarrhea and dehydration.
  • Medullary thyroid cancer patients met to discuss the development of a medullary thyroid cancer web site to add to the ThyCa web site www.thyca.org, just as has been done for anaplastic thyroid cancer by the participants in ThyCa’s Anaplastic Thyroid Cancer E-mail Support Group.

PAPILLARY AND FOLLICULAR AND THEIR VARIANTS

  • The last 5 years have changed our concepts of long-term care of papillary and follicular thyroid cancer.
  • With the introduction of Thyrogen, there also now are new follow-up tools.
  • There should be lifelong surveillance.
  • Currently, the doses of radioiodine used are often smaller (such as 50 millicuries) than in previous years.
  • Ultrasound is replacing much of the whole-body scan procedures when only the neck area is of concern.
  • A whole-body scan is needed to find distant metastases. Distant metastases show up on a post-ablation whole body scan. Also, Thyrogen can be used to artificially stimulate thyroid cells for a short time to get Thyroglobulin measurements that are more accurate than when the TSH is suppressed.
  • Ultrasound and stimulated Thyroglobulin measurements are better than a whole body scan for detecting disease in the neck. If free of disease, the patient should have a yearly Thyroglobulin measurement. If there is any detectable Thyroglobulin, then ultrasound should be done also. For patients who are TSH-suppressed and high-risk, in general, do TSH-stimulated Thyroglobulin once a year.

Radioiodine (RAI) Ablation

  • Standard dosage of radioiodine for ablation has been reduced to 50 millicuries from 100 millicuries.
  • Radioiodine is not free of risks. This must be considered, especially in patients at low risk of persistent or recurrent thyroid cancer. Even when only given 100 millicuries of radioiodine, 3 per 10,000 can be at risk of leukemia. There’s a linear dose relationship to secondary malignancy.
  • Secondary malignancies are a concern when the dosage of radioiodine is 600-800 millicuries. If a patient receives more than 500 millicuries of RAI, there are higher rates of bladder, colon, breast, and parotid cancers in addition to the added risk of leukemia
  • Which patients should receive RAI? According to the American Thyroid Association guidelines, all patients with Stages III and IV disease, most patients with Stage II, and selected patients with Stage I. For patients with a solitary tumor less than 1 cm to 1.5 cm, radioiodine is of questionable utility.
  • Thyrogen-assisted remnant ablation is recommended by the American Thyroid Association (Thyrogen is approved for use in testing but is not yet approved by the U.S. Food and Drug Administration for use in ablation in the USA); the outcome is equal to using withdrawal from thyroid hormone.
  • The American Thyroid Association also recommends Thyrogen if the patient has other medical issues that make hypothyroidism a risk, or if delayed treatment might be deleterious, or if withdrawal is unable to raise the TSH.

Low-Iodine Diet

  • ATA guidelines recommend the low-iodine diet, which should be under 50 micrograms (mcg) of iodine per day, to increase the effectiveness of the RAI dose.
  • Urine iodine measurement can determine whether patient’s iodine intake could interfere with RAI.
  • ATA recommends 1-2 weeks on the diet; some specialists recommend 2 weeks, especially if given Thyrogen, and also recommend skipping thyroid hormone 2 days before and 2 days after RAI.
  • To stay below 50 mcg per day: Choose foods low in iodine (fresh fruits, fresh vegetables, unsalted nuts and seeds). In moderation, you may eat meat, and breads and cereals. Select foods without iodized salt or sea salt. Avoid seafood, dairy, egg yolks, foods with red dye #3, and processed and fast foods. For more information visit www.thyca.org

Thyroglobulin Testing

  • Wait for 3 months after radioactive iodine to check Thyroglobulin.
  • Using Thyrogen (rhTSH) with the blood test reduces the patient’s exposure to radiation.
  • A doubling of the Thyroglobulin over time indicates disease. Any time there is a 100% increase in Thyrogobulin, it is time for further testing. The time frame of this rising does not matter. What is important is the 100% value increase. This is when it’s time for an ultrasound, CT scan, or PET scan to help determine the cause of this rising Thyroglobulin.
  • A stimulated Thyroglobulin (with TSH raised by Thyrogen or by withdrawal from thyroid hormone) over 2 is cause for more studies, but not necessarily for more treatment.
  • Even with an undetectable Thyroglobulin, Doppler ultrasound can sometimes still find tumors.
  • In a patient with Tg Antibodies, if the Tg Antibody level falls over time, the patient is probably disease-free.

Ultrasound

  • An ultrasound should be one of the first tests in monitoring a patient for recurrence, especially in patients where TgAntibodies are an issue.
  • Ultrasound is much more sensitive than a diagnostic radioiodine whole-body scan.
  • Ultrasound’s advantages include its low cost, that it doesn’t require radiation, and that the clinician can view the tumor in real time.
  • The device needs to be a Power Doppler and Color Doppler in order for the entire spectrum to be seen properly. Doppler ultrasound detects the movement of blood around tumors. Increased blood flow can be a strong marker for a tumor.
  • The scanning procedure should take at least 45 minutes in order to be thorough.
  • A typical protocol is to perform ultrasound scans at 6 months and 12 months after surgery, and then annually for at least 3 to 5 years depending on the risk for recurrent disease. In addition to ultrasound, Thyroglobulin measurements (by blood test) should also be taken regularly.
  • The average ultrasonography technician may be very good at other ultrasounds, but requires special training for thyroid examination.
  • Thyroglobulin plus ultrasound is better than Thyroglobulin alone, because Thyroglobulin can be undetectable with a small positive lymph node.

TSH Suppression in Papillary and Follicular and Variants\

  • The American Thyroid Association recommends a gradation of TSH suppression, not one TSH suppression level for all patients. The reason is to rule out the worst possibilities: osteoporosis is worse than thyroid cancer. If suppressed below 0.1, there also is an added risk of atrial fibrillation, whereas at TSH of 0.2 to 0.3, the patient is free of risk. If a patient is over age 60, suppression to 0.1 triples the risk of atrial fibrillation.
  • About 85% of patients can be kept at 0.5 rather than 0.1. If a patient is “clean” of thyroid cancer (disease free), the TSH can be kept at or just below 0.5. However, high-risk patients need further TSH suppression. About 15% of patients are high risk and need the lower TSH level.

Children and Adolescents with Papillary or Follicular Thyroid Cancer

  • Pediatric thyroid cancer often presents at a more advanced stage than adult thyroid cancer. Up to 80% of children and adolescents with papillary and follicular have lymph node metastases. Up to 20% can have lung metastases. However, the prognosis is still good. Even when there is a recurrence, the outcomes for children and adolescents are very good.
  • Because pediatric thyroid cancer has an excellent survival rate, the treatment goal must be to achieve the highest success rate with the lowest morbidity rate to offset the long-term effects of treatment.
  • Treatment is similar to that for adults. Doctors tend to use lower doses of radioiodine than for adults, with doses given a year apart or more.
  • When becoming hypothyroid for a RAI scan or treatment, or being hypothyroid in general, they may not show any symptoms. They may be fully active despite being hypothyroid.
  • The main follow-up marker for papillary or follicular thyroid cancer in children and adolescents is Thyroglobulin.

American Thyroid Association Guidelines for Differentiated Thyroid Cancer

  • The guidelines will be published in 2006.
  • The guidelines committee of thyroid cancer experts looked at research literature and used a process similar to the process used in the NIH Consensus Development Conferences to determine whether the evidence was good, fair, or insufficient.
  • The recommendations range from A (strongly recommend for) to F (strongly recommend against) and I (no recommendation: not enough data).
    (Follow-up notes on the Guidelines:
    (1) The 10 members of the ATA Guidelines Task Force included 5 ThyCa medical advisors: Bryan R. Haugen, M.D., Stephanie L. Lee, M.D., Ph.D., Ernest L. Mazzaferri, M.D., Steven I. Sherman, M.D., and R. Michael Tuttle, M.D., as well as 3 additional ThyCa conference and workshop speakers: David S. Cooper, M.D., Susan J. Mandel, M.D., and Richard L. Kloos, M.D.)
    (2) The guidelines are being published in the February 2006 issue of the ATA journal Thyroid. In January they were published on the web site of the journal’s publisher, at this location:http://www.liebertonline.com/doi/pdf/10.1089/thy.2006.16.ft-1?cookieSet=1)

PHYSICIANS’ SUGGESTIONS ABOUT PATIENT-DOCTOR RELATIONSHIPS

  • You as the patient are Number One. Each patient has unique circumstances, stories, and experience. Ask questions, ask questions, ask questions!
  • Keep your own file with all your medical records and test results in case you move or change doctors.
  • Doctors need to pay attention to the patient and not just the scans. They also need to pay attention to the patient’s risk level.
  • Doctors are responsible for professionalism, including always doing what is right for the patient, making sure that information is presented, and helping patients cope with the system.
  • Communication methods include office visits, telephone calls (less useful due to time issues), written communication, and e-mail.
  • The C word is stressful; patients need to learn how to cope with it after hearing the results.
  • Make sure all your questions are answered before you leave the doctor’s office.
  • If you’re not satisfied with your current physician, go somewhere else.

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ThyCa News Nuggets

  • Free One-Day Spring Workshops Planned. The Midwest Thyroid Cancer Survivors’Workshop will take place in St. Louis, Missouri, on Saturday, April 22, 2006. The Mid-Atlantic Workshop will take place in the Maryland/Virginia/DC area. ThyCa volunteers are also planning workshops in other locations. Visit our web site and go to the Conferences/Workshops and Calendar sections for more information.
  • More than 60 ThyCa Local Support Groups meet in 35 states coast to coast. Each group has its own web page. Plan to attend a meeting in 2006, or contact the volunteer facilitator nearest you, to become part of your local network of thyroid cancer support. Or, if you’d like help in starting a group, contact our volunteer Support Groups Coordinator Sara Gorrell Brenner.
  • For one-to-one communication and support with a ThyCa volunteer matched with the same diagnosis as you have, contact our Person-To-Person Network. Our TPPN Coordinator Peggy Melton will connect you with a ThyCa volunteer who will be in communication with you.
  • Thank you to our financial supporters during 2005.
  • ThyCa’s members and individual donors
  • The many volunteers who organized special Rally for Research events
  • The following organizations:
    • Genzyme Therapeutics
    • AstraZeneca
    • Abbott Laboratories
    • King Pharmaceuticals
    • KRONUS
  • The grants from organizations are unrestricted educational grants, and the donors are not involved in any decisions about the content of our programs and publications.
  • Congratulations, Karen! We’re proud to announce that Karen Ferguson of South Carolina (near Charlotte, NC) has been named ThyCa Board Member Emeritus. Karen is one of ThyCa’s co-founders and is the ThyCa volunteer who first reached out over the Internet nearly 11 years ago in the spring 1995, to bring thyroid cancer survivors together for the first time. She has been facilitating Monday evening online chats since the fall of 1995. She also facilitates ThyCa Charlotte, NC and volunteers for our Toll-Free Number and our Membership Committee. Congratulations and thank you, Karen!
  • Research Grants for 2006-2007. Two new Thyroid Cancer Research Grants for 2006-2007 will be sponsored by ThyCa: Thyroid Cancer Survivors’ Association. ThyCa’s research grants are open to thyroid cancer researchers and institutions worldwide. We proudly awarded our first research grant in 2003. Our web site has more details about our Rally for Research, our past grant awards, and our 2006-2007 grants.
  • Web Site continues to grow! It has more than 500 pages of thyroid cancer information and received more than 200,000 hits each month during 2005. We thank the dozens of specialists, including the 22 members of our Medical Advisory Council and numerous other physicians and other specialists, who provide ongoing review and input for the web site. The web site is the only resource that receives this ongoing review. We thank also the many volunteers who continue to contribute material for the web site. ThyCa’s web site is expanded every week. Visit it often for the latest information:www.thyca.org.

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More about This Newsletter and ThyCa

The articles in this newsletter represent the opinions of their authors and are not official positions of ThyCa: Thyroid Cancer Survivors’ Association, Inc. The articles by laypeople do not offer medical advice, as the authors are not doctors and have no medical training. Articles by physicians are educational and not intended to offer medical advice, as physicians cannot diagnose through the Internet. If you have medical questions, please consult with your physician.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org) is an all-volunteer nonprofit 501(c)(3) service organization advised by nationally recognized thyroid cancer specialists and dedicated to support, education, communication, awareness for early detection, and thyroid cancer research fundraising and research grants.

Throughout the year ThyCa offers free resources, including education through the web site, our low-iodine cookbook downloadable from the web site, several e-mail support groups, local support groups coast to coast, the person-to-person network for one-to-one support, newsletters, and the survivors’ toll-free telephone number.

Copyright (c) 2006 ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org). We encourage you to send this newsletter to your family and friends. For permission to reprint in another electronic or print publication, please contact ThyCa.

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An Open Invitation from ThyCa

ThyCa invites thyroid cancer survivors, families, and friends to tell their friends and relatives about ThyCa’s free year-round support services and publications, including our award-winning educational web site, our free thyroid cancer awareness brochures, and our conference and other special events.

Your gifts of your time and your financial support help ThyCa sustain our support services, our education and outreach programs, and the continuing expansion of our research grants to support our dream of a future free of thyroid cancer. Visit our web site www.thyca.org to find out ways you can help.

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Help Us Help Each Other

We want your comments on this newsletter! Do you like it? What would you like us to print? Send your comments to newsletter@thyca.org or ThyCa: Thyroid Cancer Survivors’ Association, Inc. P.O. Box 1545, New York, NY 10159-1545

Serving the Public Since 1995

New 5th Edition Now Available at www.thyca.org, ThyCa: Thyroid Cancer Survivors’ Association

More than 60 thyroid cancer survivors have donated more than 185 of their favorite recipes to the newly published 5th edition of the free Low-Iodine Cookbook used worldwide by thyroid cancer patients preparing for the radioiodine scans and treatments often used with thyroid cancer.

The new cookbook is downloadable free of charge from www.thyca.org, the web site of the national nonprofit organization ThyCa: Thyroid Cancer Survivors’ Association, which developed the cookbook. The recipe contributors have all used the temporary low- iodine diet themselves, often for a 2-week period before a scan or treatment with radioactive iodine.

A new feature of the cookbook is a one-page guidelines summary in both English and Spanish, also downloadable from the ThyCa web site. The guidelines were provided by thyroid cancer specialist physicians and low-iodine diet researchers who advise ThyCa and speak at the annual international thyroid cancer survivors’ conferences.

“Contributing low-iodine recipes is a way for thyroid cancer patients to do something positive for ourselves and for others,” says cookbook Editor Leah Guljord, West Melbourne, Florida, who is also Assistant Chair of ThyCa’s Board of Directors and Facilitator of the ThyCa Space Coast Local Support Group. “We congratulate and thank all the wonderful volunteers who shared their recipes. These delicious recipes are the volunteers’ family favorites. They provide a great variety of choices for breakfast, lunch, dinner, and desserts, as well as appetizers, snacks, sauces, and spreads.

“We invite everyone to share this free book with their families, friends, and physicians. Physicians, hospitals, and clinics are also welcome to download this cookbook and give copies to their patients.”

The downloadable cookbook is one of many resources and support services available at no charge from ThyCa: Thyroid Cancer Survivors’ Association (www.thyca.org). ThyCa also offers local support groups, one-to-one support through its Person To Person Network, e-mail groups, free one-day regional workshops, annual conferences, Thyroid Cancer Awareness Month, and year-round awareness programs. ThyCa also sponsors thyroid cancer research grants. The Ninth International Thyroid Cancer Survivors’ Conference will feature more than 80 session choices and will take place in Orlando, Florida, on October 27-29, 2006.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is an all- volunteer, non-profit organization of thyroid cancer survivors, family members, and health care professionals, dedicated to education, communication, support, awareness for early detection, and thyroid cancer research fundraising and research grants. For more information, call 1-877-588-7904, send e-mail to thyca@thyca.org, write to PO Box 1545, New York, NY 10159-1545, or visit www.thyca.org.

Expert Panel from American Thyroid Association To Select Grant Recipients; Applications Are Due by January 31, 2006

In 2006, ThyCa: Thyroid Cancer Survivors’ Association, Inc., will continue the expansion of its research grant awards by funding two new 2-year thyroid cancer research grants, ThyCa Board Chair Gary Bloom has announced. The grant awards are open to researchers on all types of thyroid cancer: papillary, follicular, anaplastic, medullary, and their variants.

A panel of thyroid cancer experts from the American Thyroid Association (ATA), the professional association of clinicians and researchers concerned with thyroid diseases, will select the grant recipients.

One grant will fund a research project focusing on papillary, follicular, or anaplastic thyroid cancer. The other grant will support a project focusing on medullary thyroid cancer.

The Call for Proposals and the grant eligibility guidelines will be available on the ATA web site atwww.thyroid.org. The deadline to submit a proposal summary is January 31, 2006. Authors of selected proposals will be invited to submit complete grant applications that will be due in the spring of 2006.

“We’re proud to be in our fourth year of grant awards and to continue expanding our thyroid cancer research grants,” said ThyCa Board Chair Gary Bloom. “There is a great need for more research on this challenging disease, because it’s one of the few cancers that is increasing in both incidence and numbers of deaths. We greatly appreciate our alliance with the American Thyroid Association and the ATA’s support of patient and family well-being.”

“These grants are made possible by the wonderful generosity of thyroid cancer patients, families, and friends,” said ThyCa Board Member and Fundraising Chair Joni Eskenazi. “We extend our special thanks to all our contributors and the volunteers who help throughout the year organizing our fundraising and special events to support our annual Rally for Research.”

The first four grants funded by ThyCa: Thyroid Cancer Survivors’ Association, Inc., beginning in 2003, were awarded to researchers at Rush-Presbyterian-St. Luke’s Medical Center, Chicago, Illinois; Harvard Medical School, Boston, Massachusetts; Heinrich- Heine University of Duesseldorf, Duesseldorf, Germany; and the University of Texas M.D. Anderson Cancer Center, Houston, Texas.

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

Free year-round support services and resources include ThyCa’s award-winning educational web site, a Person To Person Network, local support groups coast to coast, regional one-day workshops, nine e- mail support groups, a toll-free survivors’ telephone number, an online newsletter, and the expanded 5th edition of the free downloadable Low-Iodine Cookbook.

In addition, ThyCa’s annual international conference brings together hundreds of thyroid cancer survivors, families, and experts in thyroid cancer treatment and research. The 9th International Thyroid Cancer Survivors’ Conference will take place October 27-29, 2006, at the Sheraton World in Orlando, Florida.

Information about thyroid cancer, ThyCa’s free support services and publications, and the annual workshops and conference is available by writing to PO Box 1545, New York, NY 10159-1545, e- mailing tothyca@thyca.org, calling toll free 1-877-588-7904, or visiting www.thyca.org.

Where to find grant eligibility details and online application on the American Thyroid Association Web Site:

http://www.thyroid.org/professionals/education/grants.html

OR

  • Go to www.thyroid.org
  • Select Professionals
  • Select research grants
  • Select call for research grants

More than 400 thyroid cancer survivors, caregivers, and health care professionals gathered in Denver, Colorado, on the weekend of October 21-23, 2005, for the 8th International Thyroid Cancer Survivors’ Conference. The conference was sponsored by the national nonprofit organization ThyCa: Thyroid Cancer Survivors’ Association, Inc.

The participants came from 37 states, District of Columbia, Canada, and the Philippines. Thyroid cancer survivors attending ranged from people newly diagnosed to survivors of more than 30 years, from children through seniors. Numerous physicians, nurses, and other medical professionals also attended to share in the conference experience.

Highlights of the conference’s 100-plus sessions included more than 30 physician presentations and Ask-a-Doctor sessions about the latest advances in thyroid cancer care and research, including promising clinical trials. The 22 physician speakers came from the Cleveland Clinic, University of Colorado Health Sciences Center, Duke University, University of Florida, University of Texas M.D. Anderson Cancer Center, Washington University School of Medicine, and other major centers.

Featured speakers also included 3 pharmacists, a dentist, 5 nurses, a dietitian, 3 attorneys, a psychologist, specialists in complementary approaches to well-being, survivors of each type of thyroid cancer (papillary, follicular, medullary, anaplastic, and variants), and caregivers. Also speaking were Denver 7News Anchor Theresa Marchetta and National Memory Champion Scott Hagwood, both of whom are thyroid cancer survivors.

“Great job EVERYONE!!! We just wanted to let you know how much the conference means to us. We appreciate all the hard work, time and sacrifice by all. It was really worth it,” wrote an attendee from Illinois.

“I have learned so much from everyone!” another attendee wrote.

”This was my first conference and I am so glad that I went,” wrote a thyroid cancer survivor from Nevada. “When I was diagnosed 20 years ago, I felt very alone. Well, I didn’t feel alone this weekend. Everyone (survivors, caregivers, doctors, etc.) was very compassionate. It was a wonderful feeling to know that everyone…was there for a common cause…There were recently diagnosed survivors to long-time survivors. I met many wonderful people.”

“This conference has made me look at my disease in a whole new way,” another attendee reported. “It’s been on the back burner for many years, thinking it was gone, and other issues were more important. I was wrong,” another attendee said, “Thank you for the opportunity, experience, education, and excellent networking!”

Another wrote, “A WONDERFUL EXPERIENCE!!! THANK YOU, THANK YOU!!!”

“We thank all our speakers and other volunteers for their generous contributions,” said ThyCa Board Chair Gary Bloom of Olney, Maryland, a ten-year thyroid cancer survivor. “We invite everyone to share what they learned and help raise awareness of thyroid cancer.

“Thyroid cancer is one of the few cancers where the incidence rate is increasing. It’s crucial that we provide education and support for patients and survivors,” said Bloom. ThyCa will use the conference presentations to expand our educational web site, so that people worldwide will benefit from this unique event.

“We invite everyone to attend the 9th International Thyroid Cancer Survivors’ Conference in Orlando, Florida, October 27-29, 2006,” said Bloom. “Throughout the year we welcome everyone to to visit our web site and attend our monthly local support group meetings, as well as our one-day spring workshops already being planned.”

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a national all- volunteer nonprofit 501(c)(3) organization of thyroid cancer survivors, families, and health care professionals, advised by nationally recognized thyroid cancer specialists and dedicated to education, support, communication, awareness for early detection, and thyroid cancer research fundraising and research grants.

For more information about ThyCa’s free year-round support services, education, and publications, e-mail tothyca@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 at www.thyca.org.

Free Resource, Developed by Survivors and Caregivers, Is Sponsored by
ThyCa: Thyroid Cancer Survivors’ Association.

Anaplastic thyroid cancer is a very rare and highly aggressive cancer. It is difficult to treat and has long been little understood.

Now, the newly launched Anaplastic Thyroid Cancer Web Site (www.thyca.org/atc) gives patients, families, and physicians ready access to key information about this disease, treatments, clinical trials, and critical decisions involved when first diagnosed with anaplastic thyroid cancer.

The new web site is sponsored by the national voluntary nonprofit organization ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org). The medical content receives ongoing review and input from ThyCa’s Medical Advisory Council of 22 nationally known thyroid cancer specialists, as well as from additional specialists with expertise in anaplastic thyroid cancer.

The web site’s authors are anaplastic survivors and caregivers whose first-hand experience with this disease led them to choose the site’s 16 topic areas. Many participants in the site’s development lost loved ones to this cancer. Some have taken part in ThyCa’s Anaplastic Thyroid Cancer e-mail support group since it began in 1997.

These volunteers chose topics they most wished they had understood when they or their loved ones were first diagnosed. Twelve of the 16 topics are now on the site; the others will be added this fall. In addition, the site will continue to expand and to add information on treatment, research, and support services.

“I am thrilled to see our ATC-related content on the ThyCa web site, thereby filling a void and heightening ATC awareness for patients, survivors, patients’ friends and families, and physicians,” says Bradley Rubin, ATC caregiver and coordinator of the site development project. “We wanted others to know what we wished we knew. Now, we can share our knowledge more broadly. This web site will continue to grow and will add key information. We invite further contributions. Future submissions can be e-mailed to thyca@thyca.org.”

To those who have lost a loved one to this disease, he adds, “You can all take comfort that this journey did not end in vain. We now have the base of a web site that those who follow can use as a starting point to make their unfortunate new journey easier than ours.”

“To those who are seeking support and information as a result of their own battle, or that of a loved one with ATC, welcome to this site and to our e-mail group,” says Cheri Wallace Lindle, ThyCa Board Member and founder in 1997 of the Anaplastic Thyroid Cancer E-mail Support Group. “I cannot thank Brad enough for putting his energy, time, and talent into this project.”

“Because anaplastic is one of the fastest-growing tumors, patients and families need current treatment information right away when they receive the diagnosis. That is the reason for this web site,” says Gary Bloom, ThyCa Board Chair. “This site is an important accomplishment and a highly useful tool in anaplastic thyroid cancer management.”

The new site is one of many free education and support services available from ThyCa: Thyroid Cancer Survivors’ Association (www.thyca.org).

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is an all- volunteer, non- profit 501(c)(3) organization of thyroid cancer survivors, family members, and health care professionals, dedicated to support, education, and communication, as well as awareness for early detection, and thyroid cancer research fundraising and research grants.

ThyCa also sponsors Thyroid Cancer Awareness Month, and its annual international conference will be held this year on October 21-23, 2005, in Denver, Colorado.

For more information, call ThyCa at 1-877-588-7904, fax to 630-604-6078, send e-mail to thyca@thyca.org or visit www.thyca.org.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is pleased to announce the expansion of its research grant program with the awarding of two 2-year grants, including ThyCa’s first-ever grant for research on medullary thyroid cancer. ThyCa awarded its first and second research grants in 2003 and 2004.

The recipient of ThyCa’s first-ever Medullary Thyroid Cancer Research Grant is Matthias Schott, M.D. of the Heinrich-Heine University of Duesseldorf in Duesseldorf, Germany. Dr. Schott’s medullary thyroid cancer research proposal is “Induction of Cytotoxic Immunity in Medullary Thyroid Carcinoma by Dendridic Vaccination.”

The recipient of the Thyroid Cancer Research Grant is Erich M. Sturgis, M.D., of the University of Texas M.D. Anderson Cancer Center in Houston, Texas. Dr. Sturgis’s research proposal is titled” Radiation Response Genotype and Risk of Papillary Thyroid Cancer: A Case-Control Study.”

Both grant recipients will receive a second year of funding pending status reports.

ThyCa’s grants are open to all researchers and institutions worldwide. The grant review and selection process was based on proposals’ scientific merit and was conducted by the scientific review panel of the American Thyroid Association (ATA), the professional association of clinicians and researchers involved in thyroid diseases. The grant fundraising was conducted by the volunteers of ThyCa: Thyroid Cancer Survivors’ Association, Inc. through its campaign for thyroid cancer research.

Gary Bloom, ThyCa Board Chair, said, “ThyCa is proud to expand ThyCa’s grant award program. We greatly appreciate the volunteer efforts involved in this important effort. We thank the American Thyroid Association for its wonderful support and its members’ commitment to the well-being of thyroid cancer patients.”

“ We are excited by the announcement of these new research grants, and wish to thank the many volunteers and donors for their loving and generous support of our research fundraising. This wonderful announcement brings us one step closer to finding cures for all thyroid cancer and a future free of thyroid cancer,” said Joni Eskenazi, ThyCa Board Member and Fundraising Chair. ThyCa: Thyroid Cancer Survivors’ Association, Inc. is an all- volunteer, non- profit 501(c)(3) organization of thyroid cancer survivors, family members, and health care professionals, dedicated to support, education, and communication, as well as awareness for early detection, and thyroid cancer research fundraising and research grants.

ThyCa also sponsors Thyroid Cancer Awareness Month, and its annual international conference will be held this year on October 21-23, 2005, in Denver, Colorado.

For more information, call ThyCa at 1-877-588-7904, fax to 630-604-6078, send e-mail to thyca@thyca.org or visit www.thyca.org.