ThyCa News Notes - May 2014
05/2014- Free Flyer — 3 Things To Tell Your Friends About Thyroid Cancer
- Free Materials in 5 Languages
- Free Northern California Workshop on June 7th
- Free Patient Education Day on Nuclear Medicine
- 28 Physicians Confirmed for the Conference!
- Conference Hotel Room Reservations Open
- Hope for Cures, Through Our Research Funds
- Stress Reduced by Involvement in Care Decisions
- Thyroid Nodule Genomic Test: Latest News
- Golden Anniversary Arrives!
- Thyroid Surgery: Lobectomy or Total Thyroidectomy?
- Nexavar® Explained in New Video and Article
- New Support Group Starts Meeting
- ThyCa Online Support Communities Grow
- Raising Awareness among Young Adults
- The Fault in Our Stars
- From the E-Mail Inbox
- Book Receives Award
- Free Packets Go Around the World
- Congratulations
- Know Someone Newly Diagnosed?
- Thyroid Cancer Surveys: Add your voice
- Our New Home Page Photo- Thank You!
- Low-Iodine Recipe of the Month
- Follow Us on Facebook and Twitter
- You’re Invited To Become a Member
- About ThyCa NEWS NOTES and ThyCa
Free Flyer — 3 Things To Tell Your Friends About Thyroid Cancer
Download this and many more thyroid cancer awareness flyers from our Raise Awareness page.
You’ll find lots more flyers, plus tips for spreading the word.
Help others find thyroid cancer early, because when found early it’s usually treatable, as well as easiest to treat.
Free Materials in 5 Languages
We now have ThyCa Web and other resource materials in English, Chinese, French, Japanese, and Spanish!
We're indebted to the many volunteers, both physicians and patients, who have helped us with this massive ongoing project to make our information and free materials available to people that communicate in these different languages.
Free Northern California Workshop on June 7th
We are proud to introduce our speakers for the Northern California/Bay Area Thyroid Cancer Survivors’ Workshop on Saturday, June 7, 2014 at the Stanford Cancer Center, 875 Blake Wilbur Drive, Stanford, California.
They all have extensive experience with thyroid cancer care.
- Haruko Akatsu, M.D., M.S. Endocrinologist, Stanford University Medical Center, Stanford, CA
- Mark Courey, M.D., Otolaryngology and Neck Surgery, UCSF Medical Center, San Francisco, CA
- Judy Nguyen, M.D., Staff Physician, Kaiser Permanente, Santa Clara, CA
- Jeffrey Norton, M.D., Endocrine Surgeon, Stanford University Medical Center, Stanford, CA
- John B. Sunwoo, M.D., F.A.C.S., Head and Neck Surgeon, Stanford University Medical Center, Stanford, CA
This is a terrific opportunity to learn and get your questions answered in person from experts.
The ThyCa Silicon Valley/Foster City Support Group is organizing this event. Lois Fried and Julie Martinez are the group’s facilitators. Everyone interested in thyroid cancer is invited.
Get details and register online (free).
We also welcome walk-in attendees. Hope to see you there!
Free Patient Education Day on RAI and More, June 8
Near St. Louis, Missouri? Come to the free Patient Education Day on June 8th. Many topics! This event is sponsored by Society of Nuclear Medicine & Molecular Imaging (SNMMI), with ThyCa: Thyroid Cancer Survivors’ Association and American Thyroid Association.
Speakers include Douglas Van Nostrand, M.D., Nuclear Medicine Director, Washington Hospital Center and ThyCa Medical Advisor, plus more speakers/panelists.
The program schedule plus more details are here.
28 Physicians Confirmed for the Conference in October!
We’re excited to announce that we’ve already confirmed more than 25 distinguished medical professionals for the 17th International Thyroid Cancer Survivors’ Conference, October 17-19, 2014, in Denver, Colorado.
Experts are coming from leading centers around the United States and Mexico.
Introducing 3 of our speakers:
- Marcia S. Brose, M.D., Ph.D., Oncologist at the University of Pennsylvania Health System, and ThyCa Medical Advisor
- Bryan R. Haugen, M.D., Endocrinologist at University of Colorado Denver, board member and past President of the American Thyroid Association, and ThyCa Medical Advisor
- Bryan McIver, M.D., Ph.D., Endocrinologist at Moffitt Cancer Center, and ThyCa Medical Advisor
You’re invited to join these experts, many more distinguished doctors, and hundreds of others who will participate in this unique meeting packed with information, plus the opportunity to meet so many others dealing with the same journey!
The Conference is a unique opportunity for you to meet and learn in depth from leading thyroid cancer specialists, as well as other experts.
In addition, through roundtables and social times, you’ll have lots of time to share experiences and helpful tips with others coping with each type of thyroid cancer.
Registration is open. Scholarships are available to cover the registration fee (simply check the scholarship box on the registration form).
We will continue to add information to our Conferences page.
Registration is now open. Scholarships are available to cover the registration fee (simply check the scholarship box on the registration form).
We will continue to add details to our Conferences page.
Hope to see you in Denver!
Conference Hotel Room Reservations Open
We’re pleased to announce that the Hotel section of our 2014 Conference page is now open.
You may reserve your hotel room either online or by telephone. The special rate for conference attendees is $89 per night for a single or double, plus tax; $99 for a triple; and $109 for a quad. These rates are also available for 3 nights before and 3 nights after the conference.
Hope to see you in Denver!
Hope for Cures, Through Our Research Funds
Research is urgently needed for cures for all thyroid cancer, because too many of our friends and loved ones are diagnosed and cope with thyroid cancer. May is Cancer Research Month.
We invite you to help fund our Thyroid Cancer Research Grants. When you donate to ThyCa’s research funds, 100% of your donation supports thyroid cancer research grants open to researchers worldwide.
We have proudly awarded more than $1.2 million in thyroid cancer research grants to researchers in France, Germany, Sweden, Switzerland, and United States, thanks to your generous donations!
In 2014, we will award 3 new research grants, plus 3 second-year grants.
Together, we are helping research move toward our dream of cures for all thyroid cancer, and a future free of thyroid cancer.
Help the Rally for Research! Read more, and find out how you can help, on our Rally for Research page.
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Stress Reduced by Involvement in Care Decisions
Helping cancer patients make decisions in their care can reduce stress, according to a study reported by Reuters in Medcity News in April 2014.
The study included 305 patients with a variety of cancers at the Hospital of the University of Pennsylvania. It was recently published in the journal Cancer. When treatment ended, they completed surveys about their physician’s decision-making style.
Patients who felt that they had more involvement in decision-making about their care reported higher rates of satisfaction and lower rates of depression, fatigue, and anxiety. Read more.
Thyroid Nodule Genomic Test: Latest News
Veracyte, Inc., announced the launch this month of its Afirma Malignancy Classifiers in connection with the Afirma Thyroid FNA (Fine Needle Aspiration) Analysis as a tool for thyroid nodule diagnosis.
The goal is to reduce unnecessary surgeries among the more than 525,000 U.S. patients each year who have a fine needle aspiration (FNA) of a thyroid nodule to determine whether or not cancer is present.
The Afirma Malignancy Classifiers consist of genomic tests for medullary thyroid cancer (MTC) and the BRAF gene mutation to provide information to help guide surgical decisions regarding the nature and extent of surgery for those patients who need surgery.
Read more on our web site on the pages titled Lab Tests and Nodules, Links (Tests and Levels subsection), and Physician Guidelines.
Congratulations to longtime ThyCa volunteer Gloria Keller! Earlier in May 2014, she celebrated 50 years since her thyroid cancer diagnosis. Gloria is a co-facilitator of the ThyCa Washington, DC, Support Group.
“The ThyCa volunteers were the first people I’d met who knew a lot about thyroid cancer,” Gloria said in a 2006 interview. “In 1964, not that much was known about thyroid cancer.”
“Early in September 2000, I found a three or four-line blurb in the newspaper that said there was going to be a conference, [the 3rd International Thyroid Cancer Survivors’ Conference] I was thrilled to find it. I called Gary Bloom. The conference gave me such a warm feeling. I’ve enjoyed every minute of ThyCa ever since. I’m very impressed. I wanted to do what I could.”
“I enjoy volunteering. I enjoy talking to people. I think they benefit from talking to a long-term survivor. This is such a warm welcoming group. I had gone to a support group for another disease. It was nothing but a gripe session. I never went back. The ThyCa support group was like a spring day. It’s really good.”
Thyroid Surgery: Lobectomy or Total Thyroidectomy?
Which patients with papillary thyroid cancer need a total thyroidectomy and who can have just a lobectomy? This was the topic of a session at the recent meeting of American Association of Endocrine Surgeons, reported in Medscape
Aya Ebina, M.D., of the Cancer Institute Hospital, Tokyo, Japan, reported on a study of 1,187 patients, concluding that low-risk patients with papillary thyroid cancer had as favorable survival outcomes from a lobectomy as with a total thyroidectomy.
In the question and answer period, Ashok R. Shaha, M.D., of Memorial Sloan-Kettering Cancer Center, New York City, New York, said that the new guidelines coming in June from the American Thyroid Association will "reflect the role of lobectomy much more."
Nexavar® Explained in New Video and Article
Our web site’s Video page has added a new video about Nexavar® (sorafenib) and its use in treating papillary and follicular thyroid cancer that doesn’t respond to radioactive iodine.
This article from Penn News tells more about the Nexavar® research.
Thank you to Marcia Brose, M.D., Ph.D., oncologist at the University of Pennsylvania’s Abramson Cancer Center and ThyCa Medical Advisor, and her colleagues, whose research led to the U.S. FDA approval of Nexavar®. The journal The Lancet has just published their study, titled the DECISION Study.
Our Video page has more videos with patients and medical professionals. These are great ways to learn more about thyroid cancer, wherever you live.
New Support Group Starts Meeting
Congratulations and thank you to the ThyCa Brockville, Ontario, Canada, Support Group, starting monthly meetings the evening of May 20th. Judy Fielding and Lee Ann Irwin, RPN, are the group’s facilitators.
More than 110 local ThyCa support groups serve communities around the United States and in Australia, Canada, Colombia, Costa Rica, and Philippines. Find the web pages of the new Brockville, Ontario, Canada group, and all groups on our Local Support Groups page.
We can help you start a local support group in your community.We provide training, assist with setup issues, provide materials for attendees, and help publicize your support group to people dealing with a thyroid cancer diagnosis.
If you’re interested, please send an e-mail to the ThyCa Support Groups Coordinator at support_coord@thyca.org.
ThyCa Online Support Communities Grow
Our online support communities continue to grow. They serve people with each type and situation with thyroid cancer.
More than 35,000 people are now taking part, including more than 11,000 people in our ThyCa Inspire Online Support Community.
Visit our Support Groups section to find our online communities, plus more than 110 in-person local support groups in 6 countries, as well as our 1-on-1 support through the ThyCa Person To Person Network.
Raising Awareness Among Young Adults
Thank you to ThyCa volunteers Chris Prestano and Joel Amromin for representing ThyCa and giving out thyroid cancer awareness materials at the recent OMG! Cancer Summit for Young Adults in Las Vegas, Nevada.
Chris facilitates the ThyCa Salt Lake City, Utah, Support Group, and Joel co-facilitates the ThyCa Los Angeles, California, Support Group.
And, speaking of awareness. The soon-to-be-released major motion picture, The Fault in Our Stars, based on a novel by John Green of the same title, stars a female lead, Hazel, dealing with advanced thyroid cancer. This story is based on the story of Esther Earl, a lovely young lady who lost her battle with advanced thyroid cancer at too young of an age.
From a hospital in Virginia:
We are having our annual Oral, Head and Neck/Thyroid screening. I would like to have materials to place in our informational bags for participants. Please send 50 brochures.
From Massachusetts:
My child was recently just diagnosed with Follicular Thyroid Cancer.She would love a back pack. (Editor’s Note: We mail free pediatric backpacks with information for both the young person with thyroid cancer, and the family.)
From Texas:
Please send me information on anaplastic thyroid cancer. I had surgery in September, Radiation and 2 rounds of chemotherapy.
From Kentucky:
Hello! I've been a member for a few years and I'm getting ready to celebrate 3 years being CANCER FREE. :) I'm interested in finding out more information about starting a support group in my area. Any and all information would be helpful.
From a patient:
I'm glad you are an available resource. Would it be possible to e-mail recipes from the [Low-Iodine} cookbook for main courses? I found out that I am going to need a low-iodine diet during the time I have scheduled a dinner party. Help!
From Connecticut:
I´m 34 years old. I’m glad I found ThyCa following my papillary thyroid cancer diagnosis. I'm planning to attend an upcoming support group meeting. I would like to speak with other survivors about my mood.I’m hopeful that speaking with other survivors will help me better deal with my stress and anxiety. I also would like to help others.
From Missouri:
Thank you so much for the information you provided for us. I will definitely check out the pediatric website. I will also look into support groups for our daughter. She just had a thyroidectomy on the 5th. The ThyCa site has helped us prepare for what is next for her.
David Kalish’s new novel, The Opposite of Everything, has been awarded First Place in the Somerset Awards for Literary and Mainstream Fiction. It’s also a finalist in the Humor/Comedy category of the Next Generation Indie Book Awards. The book is based on David’s experiences coping for many years with medullary thyroid cancer. Congratulations, David!
Free Packets Go Around the World
Everyday we mail our free Patient Information Packets to patients, caregivers, professionals around the world.
Recently, people in Australia, Brazil, Bulgaria, Canada, China, France, Mexico, South Africa, United Kingdom, United States, and many more countries received our free materials.
Would you like a free packet? Sign up here.
Congratulations to Kate Farnell, MBE, and founder/leader of the United Kingdom’s Butterfly Thyroid Cancer Trust,on being honored for her service to people with thyroid cancer.
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If you or someone you know was recently diagnosed with thyroid cancer, we have put together resources to help navigate this challenging time.
On this page, you’ll also find a link for requesting the free patient information packet and handbook, Thyroid Cancer Basics. We mail these free materials anywhere in the world.
Thyroid Cancer Surveys: Add your voice
Add your voice, if you haven't already.We have links to a number of medical surveys designed to better understand experiences of people who are coping with thyroid cancer.
Your answers help medical professionals, patients, and caregivers better understand the experiences of people coping with thyroid cancer.
Background information and links are in this special edition of ThyCa News Notes.
Our New Home Page Photo – Thank You!
On March 16, 2014, George Washington University School of Medicine's chapter of the Arnold Gold Humanism Society hosted a 5K Race and Walk at Rock Creek Park in Washington, D.C., to raise awareness of thyroid cancer.
All registration funds and donations support ThyCa. The Arnold Gold Humanism Society chose ThyCa in support of their classmate who was recently diagnosed with thyroid cancer.
Our special thanks to the volunteers of the George Washington University School of Medicine's chapter of the Arnold Gold Humanism Society!
Your awareness and fundraising 5K Race was a lot of fun and really got the word out!
Low-Iodine Recipe of the Month
Contributed by Harriet E. M. K. of New York
Haroseth
4 large tart apples, peeled and cored
1 Tablespoon fresh lemon juice
1 pound pitted dried dates
1 1/2 cups walnut pieces
1 1/2 cups blanched whole almonds
4 Tablespoons honey
A couple of pinches of cinnamon
1. Grate the apples with a grater or with the shredding disk in a food processor. Place in a bowl, stir in the lemon juice, and set aside.
2. Place the dates and nuts in a food processor and pulse until coarsely chopped. Stir the date mixture into the apples with honey and cinnamon.
3. Tastes delicious on matzo and on crackers
Yields about seven cups - enough to last for a good portion of the time of the low-iodine, diet.
Harriet writes, “I just finished the low-iodine diet once again and found that a recipe that I prepared for the Passover Seder worked magnificently.”
Thank you, Harriet! We will include your recipe in the next edition of ThyCa’s FREE Downloadable Low-Iodine Cookbook.
Free and Downloadable: Click on the Cookbook link on our home page to 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.
To contribute your favorite recipe or tip, send it to recipes@thyca.org.
Follow Us on Facebook and Twitter
We're now over 10,600 strong on the ThyCa Facebook page and 1,970 on Twitter!
Our support of each other — whether giving or receiving — is an incredible gift. Thank you for joining us.
You’re Invited To Become a Member
No one should have to face a diagnosis of thyroid cancer alone. Your membership dues support and strengthen ThyCa's efforts to provide our services and resources to thyroid cancer survivors and their families around the world.
You may join as a 1-year, 2-year, or lifetime member of ThyCa. Membership is open to anyone anywhere in the world who is interested in thyroid cancer and in supporting ThyCa’s efforts in support, education, and research funding.
To join, online or by mail, visit our Membership page.
About ThyCa NEWS NOTES and ThyCaCopyright (c) 2014 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.
Thank you to our writing, editing, and proofreading team for this issue: Harriet E.M.K., Tom Engle, Leah Guljord, Pat Paillard, Barb Statas, Theresa Wickerham, Cherry Wunderlich, and Gary Bloom.
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.
ThyCa: Thyroid Cancer Survivors' Association, Inc. is a non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals serving people worldwide and dedicated to education, support, communication, and fundraising for thyroid cancer research.
ThyCa sponsors the annual International Thyroid Cancer Survivors’ Conference, as well as Thyroid Cancer Awareness Month, a worldwide observance each September, plus year-round awareness campaigns, research funding, and thyroid cancer research grants.
Visit our web site to learn about thyroid cancer, coming events, and ways you can help. Ask us for free materials and information. 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, or visit our website.