ThyCa News

ThyCa NEWS NOTES - May 2011

05/2011

In This Issue:


Finding Treatment Clinical Trials

Clinical trials try to find better ways to prevent, diagnose, or treat cancer.

Treatment clinical trials are currently under way for new treatments for people whose advanced and aggressive thyroid cancers are not responding to currently available therapies.

Here are a few questions to ask:

  • What is the purpose of the study?
  • Why do researchers think the approach may be effective?
  • Who will sponsor the study?
  • Who has reviewed and approved the study?
  • How are study results and safety of participants being checked?

Find more questions to ask, tips, and links to current clinical trials for thyroid cancer, in the Clinical Trials section of our web site.

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Learn From Experts at Free Workshop on Saturday, June 11

Saturday, June 11, 2011, 8 a.m. – 5 p.m. Silver Spring, Maryland.
Mid-Atlantic Thyroid Cancer Survivors’ Workshop. Sponsored by ThyCa: Thyroid Cancer Survivors' Association, Inc.

Speakers include:

  • Andrew J. Bauer, M.D., COL MC USA, Endocrinologist, Walter Reed National Military Medical Center and Uniformed Services University, Bethesda, MD, and The Thyroid Center, Children’s Hospital of Philadelphia, Philadelphia, PA
  • Kenneth D. Burman, M.D., Endocrinologist, Washington Hospital Center, DC
  • Bruce Davidson, M.D., Otolaryngologist (Surgeon), Georgetown University Medical Center, DC
  • Gary L. Francis, M.D., Ph.D., Endocrinologist, Virginia Commonwealth University, VA
  • Jacqueline Jonklaas, M.D., Endocrinologist, Georgetown University Medical Center, DC
  • Gigi Meinecke, D.M.D., F.A.G.D., Dentist, University of Maryland School of Dentistry, MD
  • Janet Papirmeister, B.N, R.N, Cancer Patient Navigator, Shady Grove Adventist Hospital, MD; plus a panel on complementary approaches to well-being
  • Douglas Van Nostrand, M.D., Nuclear Medicine Physician, Washington Hospital Center, DC

Walk-in attendees are welcome. Come for all or part of the day. Thyroid cancer survivors, their families, caregivers, and friends are invited to attend. Register either online in advance or onsite on the day of the workshop. Visit ThyCa's web site Conference/Workshops section for further details about the speakers, program, and directions.

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Pathologist To Speak on June 7

On Tuesday, June 7, from 6:30 p.m. to 8:30 p.m. Amir Kendy, M.D., Pathologist, will speak and answer questions at the meeting of the ThyCa Rockville, Maryland, Support Group. This event is free. Visitwww.thyca.org/sg/md_rockville/ for details.

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Cancer Legal Rights Conference on June 24

Learn about your legal rights as a cancer patient at the free one-day conference in Chicago, Illinois, sponsored by the Cancer Legal Rights Center. More information is in ThyCa’s Events Calendar and atcancerrightsconference.org.

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Thyroid Cancer Patient Surveys

Importance, Early Results, Future Needs
By David Myssiorek, M.D., F.A.C.S.
Division of Head and Neck Surgery and Oncology, New York University Clinical Cancer Center; Professor of Otolaryngology; and ThyCa Medical Advisor

Some surprising information about the prevalence and duration of voice disorders after thyroidectomy has come from the survey of Thyroid Surgery and Voice Issues, posted last year by ThyCa: Thyroid Cancer Survivors’ Association.

By April 2011, more than 5,800 people had responded to the voice issues survey. This is the largest patient response to any thyroid cancer survey ever. The survey has also brought to light issues regarding voice therapy and the effect that chronic voice disability has had on responders.

This surgery survey, as well as two other physician-authored surveys that ThyCa posted last year—on Radioactive Iodine (RAI) and the Salivary Glands and on Thyroid Cancer Patients’ Use of Complementary and Alternative Medicine—highlight the contributions that these surveys can make to physician knowledge, patient care, and doctor-patient relationships.

Overview of the Population Surveyed

The characteristics of the potential survey population is exemplified by the hundreds who came to 13th Annual Thyroid Cancer Survivors’ Conference in Dallas, Texas, October 15-17, 2010. Numerous world-class experts in all aspects of thyroid cancer participated at this educational meeting. They spoke on topics ranging from diagnosis to treatment to aftercare and long-term surveillance. The conference attendees were a small portion of the more than 20,000 participants in ThyCa’s online support groups and one-to-one support, all of whom are potential participants in the surveys.

First and foremost, these ThyCa constituents are all people affected by a thyroid cancer diagnosis, either as survivors themselves, or as caregivers/loved ones of the survivors. Most, but not all, of the thyroid cancers addressed by ThyCa are well differentiated and usually carry a lengthy survival.

Second, these ThyCa members regularly communicate by e-mail, implying an active and large population of more than 20,000 computer-savvy people. E-mail and website-based communication allow rapid dispersion of timely information, as well as rapid response.

Finally, the majority of thyroid cancer survivors have few post-treatment problems or multiple long-term problems ranging from oral dryness from RAI to vocal disorders from surgery. Most of the problems reported are issues of quality of life, rather than survival issues. Many of the problems can be successfully addressed. The minority of thyroid cancer survivors who have more complex post-treatment problems are an additional important constituency for medical professionals.

Significance of this Population – Who We Are

This is a large group of survivors, the great majority with long life expectancies, computer access, and solvable problems. Medical researchers should be able to generate valuable data regarding survival, quality of survival, and issues related to care delivery in this vocal, intelligent group. Because of ThyCa’s membership base, and reach, if large numbers of members participate in informational surveys, you can change treatment policies, long-held notions about complications, and the doctor/patient relationship. Imagine a group of people able to alter the course of their welfare by speaking out about all of these issues.

Recent Surveys

Last year, ThyCa posted 3 physician-authored surveys that impacted most of its members. Participation in all of these surveys was voluntary; no payment or incentive was provided. The Vocal Issues survey was posted for over a year. By April 2011, more than 5,800 people had responded. As noted earlier, this is the largest-ever patient response to any thyroid cancer survey. The survey showed some surprising outcomes about the prevalence and duration of voice disorders in people after thyroidectomy. It also revealed issues regarding voice therapy and the effect chronic voice disability had on the responders.

This was very helpful information. Thank you to everyone who participated. While firm data on expected response rates from this type of survey are lacking, and 25% is a substantial response to a voluntary survey, a higher response can make the study more powerful and therefore more significant than it has already been.

How Surveys Can Benefit Patients and Professionals

ThyCa is a heterogeneous group consisting of several groups of people. These include people newly diagnosed, long-term patients free of disease or with stable disease, long-term patients with complications, and caregivers. They have issues that include radioactive iodine (RAI) and its impacts, voice issues, being alone in their journeys, non-response to available therapy, and others. In addition, some with no significant medical challenges of their own and some who are coping with significant challenges give support to other members.

Questionnaires about a specific topic would attract people affected by that topic. Naturally, a bias would occur if the only responders were the ones with problems. For example, if the normal speakers do not respond to the voice questionnaire, the data will reflect a very large percentage of ThyCa participants with impaired voices. The only way to diminish this bias is to increase the number of responders to the survey. If the only people responding to the RAI survey have poor outcomes, RAI would appear to be a bad treatment option; however, it is a good treatment option.

The importance of these surveys is manifold. First, the surveys can supply medical researchers with normalized data from patients across small and large centers, not simply patients from individual large academic centers. Second, if the medical literature states that there is a low percentage of dry mouth after RAI, but "our constituency claims otherwise, by using our questionnaire," ThyCa constituents could change the way in which patients and doctors interact in the future. Third, if vocal issues are more prevalent than currently suspected, then patients with weak indications for thyroid surgery could include the potential for vocal change in their decision-making. Similarly, if our membership determined by survey that vocal therapy was helpful; wouldn’t more physicians tell their patients with vocal changes about it?

The point is that ThyCa-endorsed surveys give power to those who answer them. These surveys potentially could change doctor/patient relationships, improve the exchange of information, and better prepare patients for thyroid surgery, and they could help eliminate non-effective practices or add therapies to enhance post treatment quality of life. The more people who participate in these surveys, the louder our collective voice will be heard.

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Salivary Gland and Surgery Surveys Need Your Input

Make your voice heard! Each survey takes just a few minutes to complete. The surveys are voluntary and anonymous.

Share your experience here:

  • Salivary Gland and Radioactive Iodine Survey
  • Surgery Survey

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'Where Can You Find Face-To-Face ThyCa Support Group Meetings?

Find out whether there is a ThyCa Support Group near you, and attend meetings if you can. Face-to-face ThyCa Support Groups meet in dozens of communities. They are wonderful places to meet others in your community who are coping with thyroid cancer.

If you’d like information about starting a group in your community, contact the Support Group Team coordinators at support_coord@thyca.org.

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Tamra’s Run for ThyCa

A special thank you and best wishes to Tamra Kaufman, for running for ThyCa on June 19, 2011, at the Vancouver USA Marathon and Half-Marathon. To learn more and find out how to support Tamra’s Run, visit the Rally for Research page.

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Insurance Co-Pay Assistance Available

Underinsured patients who need help with co-payments for medications for their cancer or chronic disease may find financial assistance from the nonprofit Patient Access Network Foundation. Starting in November 2010, this organization began providing co-payment assistance to underinsured patients with thyroid cancer. Qualified patients will be granted up to $1,500 per year to cover the cost of medications for diagnostics and treatment. The Foundation’s site is also linked in ThyCa’s Links list in the Support/Resources section.

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Thank You To Our Guest Speakers in May 2011

  • Free Seminar on May 21 hosted by ThyCa Silicon Valley Support Group in California, with John Sunwoo, M.D. FACS, Otolaryngology - Head and Neck Surgery, Stanford University School of Medicine. Topic: Neck Dissections for Lymph Node Metastases and the Use of Nerve Monitoring During Thyroidectomies.
  • ree Seminar hosted by ThyCa Charlotte Support Group in North Carolina, with Paul Downing, Exercise Physiologist at Strides to Strength, a cancer wellness and fatigue management program.
  • Free Newfoundland and Labrador Thyroid Cancer Survivors’ Workshop/Information Day on May 28 , hosted by ThyCa Newfoundland and Labrador Support Group. Featured topics and speakers.
  • New Imaging Techniques for the Detection of Thyroid Cancer in Nuclear Medicine. Peter Hollett, M.D., FRCPC, Chief, Division of Nuclear Medicine
  • New Guidelines From the American Thyroid Association – Individualized Treatment and Follow-up Using Staging and Prognostic Systems. Vikram Chandurkar, M.D., FRCPC, Assistant Professor, Division of Endocrinology
  • Nutrition, Low Iodine Diet, & Thyroid Cancer. Gerri Anne Devereaux, Dietitian
  • Roundtable: Challenges of Coping with Thyroid Cancer and Handling Full Time Work, Family Responsibilities, or Both. Joanie Bruce, Ida Marrie, & Grace Dean, Facilitators of ThyCa Newfoundland and Labrador Thyroid Cancer Support Group.

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Conference Registration Opens; Hotel Room Reservations Open

You now can register online for the 14th International Thyroid Cancer Survivors’ Conference in Los Angeles, California, on October 14 – 16, 2011.

Hotel Room Reservations are also open.

Click here for details and online forms.

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More Than 30 Conference Speakers Confirmed from 21 Centers

We’re excited to announce that 30 distinguished medical professionals are already confirmed for the 14th International Thyroid Cancer Survivors’ Conference. As of May 1, we’ve confirmed professionals from these centers.

  • Boston University School of Medicine, Boston, Massachusetts
  • Cedars-Sinai Medical Center, Los Angeles, California
  • City of Hope Cancer Center, Duarte, California
  • Cleveland Clinic Foundation, Cleveland, Ohio
  • Mayo Clinic, Rochester, Minnesota
  • Memorial Sloan-Kettering Cancer Center, New York City, New York
  • New York University Clinical Cancer Center, New York City, New York
  • Ohio State University College of Medicine, Columbus, Ohio
  • Stanford University Medical Center, Stanford, California
  • UCLA School of Medicine, Los Angeles, California
  • UC San Diego Moores Cancer Center, San Diego, California
  • Uniformed Services University of the Health Sciences, Bethesda, Maryland
  • University of California, San Francisco, California
  • University of Chicago Medical Center, Chicago, Illinois
  • University of Colorado at Denver and Health Sciences Center, Denver, Colorado
  • University of Connecticut Health Center, Storrs, Connecticut
  • University of Southern California, Los Angeles, California
  • University of Texas, M.D. Anderson Cancer Center, Houston, Texas
  • VA Greater Los Angeles Healthcare System, Los Angeles, California
  • USC Ambulatory Care Health Center, Los Angeles, California
  • Yale University School of Medicine, New Haven, Connecticut

More speakers are being confirmed. Visit www.thyca.org often for conference updates and details.

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Low-Iodine Recipe of the Month
Contributed by Steve M. of Missouri

Salad Dressing and Ketchup Replacement

Very tasty, good for salads and fried potatoes

Ingredients

8 tablespoons vegetable oil
1 apple
1/4 cup distilled white vinegar
4 Tablespoons brown sugar

Directions

Measure ingredients into sauce pan and bring to boil then take off heat.

Steve writes: “New Thyroid Cancer patient; just had my first RAI Scan still on the diet. Thank you for the book.”

Editor’s Note: Thank you, Steve, for contributing your recipe. We will include your recipe in the next edition of ThyCa’s FREE Downloadable Low-Iodine Cookbook.

Free and Downloadable

Download the 7th edition of the Low-Iodine Cookbook in English for free, with more than 340 favorite recipes from more than 150 generous volunteers.

The Cookbook is also available in Spanish and French.

Please remember, while you’re welcome to download and print the entire free low-iodine cookbook, you can also print just the pages you need.

This free cookbook is a wonderful help when you’re preparing to receive radioactive iodine for treatment or testing. All the recipes are 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, send it to recipes@thyca.org.

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Follow ThyCa on Facebook and Twitter

http://www.facebook.com/pages/THYCA/231492537404?ref=mf

On Twitter, at ThyCaInc.

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Guestbook Is Free

Sign up for our Free Newsletter, or Update Your Contact Informationon our Guestbook page.

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Support the Rally for Research

Thanks to generous contributions and special fundraising events, ThyCa has awarded new thyroid cancer research grants every year starting in 2003. These grants support our goal of cures for all thyroid cancer and a future free of thyroid cancer. We will again award new research grants in 2011.

You’re invited to help support the Rally for Research. For details about the Rally for Research, donation opportunities, special events, Quarters for a Cure, and information about ThyCa’s past and future Research Grants, visit the Rally for Research page.

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Join Us, Become a Member

Help us sustain, strengthen, and extend our services. We invite you to become a member of 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. Members receive our quarterly Membership Messenger newsletter.

Membership is open to everyone worldwide. You may become a 1-year ThyCa member ($25), 2-year member ($45), or lifetime member ($225). For our online Membership Form and our mailed Membership Form, go to our Membership page.

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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 donation online in support of ThyCa's work (or you are welcome to donate by mail to ThyCa, P.O. Box 964, Chesterfield, MO 63006-0964), so click here to give.

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About ThyCa NEWS NOTES

Copyright (c) 2011 ThyCa: Thyroid Cancer Survivors' Association, Inc.

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

The information in this newsletter is intended for educational purposes only. It is not intended, nor should it be interpreted, as medical advice or directions of any kind. Readers are advised to consult their own medical doctor(s) for all matters involving their health and medical care.

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

Thank you to our writing, editing, and proofreading team for this issue: Leah Guljord, David Myssiorek, M.D., Steve M., Pat Paillard, Barbara Status, Cherry Wunderlich, and Gary Bloom.

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


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