ThyCa News Notes – October 2014

In This Issue:

Biggest Conference Yet! 

More than 600 people from all around the United States, Canada, and United Kingdom gathered for a terrific three days at the 17th International Thyroid Cancer Survivors’ Conference, October 17-19 in Denver, Colorado. 

People came from near and far for learning, support, and a sense of community. Attendees ranged from children through seniors, with all types of thyroid cancer, and varied situations with their thyroid cancer.

The 2014 program, speaker biographies, and other 2014 details will continue to be available on the web site. 

Our heartfelt thanks to all our terrific speakers, volunteers, staff, guest exhibitors, and friends for your wonderful support. 

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Fun and Research Fundraising at the Dinner/Auction 

Our Annual Dinner/Auction Research Benefit Fundraiser was a great success. The evening raised more than $35,000 for thyroid cancer research.

Huge thank you’s to: 

• The generous donors of items, the bidders, the Fund-a-Cure contributors, and the numerous volunteers who helped set up and run the auction and check-out 

• Bryan Haugen, M.D., our honoree at the dinner, for your dedication to patient care and thyroid cancer research 

• The sisters who contributed their delicious cookies to raise funds in memory of Patti Malloy, who had medullary thyroid cancer and was a ThyCa volunteer. 

• “Joyous Jo,” who danced on the table and raised more than $1,200 for research 

• Everyone who joined us for the evening 

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Save the Dates for St. Louis in 2015: The 18th Conference! 

Join us at the Sheraton Westport Chalet Hotel, 191 Westport Plaza, St. Louis, MO 63146 Friday through Sunday, October 2 – 4, 2015. 

The 2015 Conference Flyer is on the web site. Print it out and share it or request a batch by e-mailing to thyca@thyca.org. Help spread the word! 

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Thyroid Cancer Genome Analysis Finds Markers of Aggressive Tumors  

A new comprehensive analysis of thyroid cancer from The Cancer Genome Atlas Research Network has identified markers of aggressive tumors, which could allow for better targeting of appropriate treatments to individual patients. 

“This understanding of the genomic landscape of thyroid cancer will refine how it’s classified and improve molecular diagnosis, says Thomas J. Giordano, M.D., Ph.D., Professor of Pathology at the University of Michigan Medical School and Project Co-Leader with Gad Getz, Ph.D. of the Broad Institute. 

Dr. Giordano adds, “This will help us separate those patients who need aggressive treatment from those whose tumor is never likely to grow or spread.” 

Dr. Giordano spoke at the 17th International Thyroid Cancer Survivors’ Conference sponsored by ThyCa earlier this month. More details about his research are here.  

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Update on Natpara® (rhPTH[1-84]) 

NPS Pharmaceuticals, manufacturer of Natpara® (rhPTH[1-84]), reported on October 23, 2014, that the U.S. Food and Drug Administration has extended to January 24, 2015, its action date regarding Natpara® (rhPTH[1-84]) for the long-term treatment of Hypoparathyroidism. 

Hypoparathyroidism is an endocrine disorder, involving low calcium levels in the blood, experienced by some people with thyroid cancer due to damage or removal of the parathyroid glands during thyroid surgery. 

After thyroid surgery, symptoms of low calcium levels include muscle spasms as well as tingling and numbness, especially in the hands or feet. ThyCa’s web site and handbooks have more information. 

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Over 12,000 … Facebook Likes, That Is! 

The power of joining together online, or face-to-face in our support groups, workshops, conferences, and webinars is immeasurable. 

To all of you, our friends, fans, followers, volunteers, advisors, supporters…Thank You!  

We’re now more than 12,000 strong on Facebook and more than 2,380 on Twitter! 

Our support of each other — whether giving or receiving — is an incredible gift. Thank you for joining us. 

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Free Seminars in California, New Jersey, New York, North Carolina, and Ontario 

Visit our Support Group pages and our Events Calendar to find out more about all the support group meetings and seminars with guest speakers. 

  • Michael Thomas, M.D., Ph.D., Endocrinologist with Carolina Endocrine, will be the guest speaker at the October 25 meeting of ThyCa Raleigh, North Carolina, Support Group. 
  • A free seminar on The Aging, “Normal Voice,” with Peg Sweeny, Speech Therapist, will take place on Monday, November 3, from 6 p.m. to 7:30 p.m. at the meeting of the ThyCa Jersey Shore University Medical Center Support Group. 
  • Endocrinologist Stuart Morduchowitz, M.D., will be the guest speaker at the meeting of the ThyCa Long Island Support Group on Sunday, November 9 from 1 p.m. to 3 p.m. 
  • On Tuesday, November 18, from 6:30 p.m. to 8:30 p.m., the guest speaker at the meeting of the ThyCa Ontario, Canada, Support Group will be Leslie Groves, pharmacist from Brockville Rexall. She will discuss taking and storing your thyroid medication, different types of thyroid medications, and uses and interactions of supplements (e.g., calcium) with thyroid medication. 
  • Thyroid Disease and You is a free 2-hour forum with physician speakers on all thyroid diseases (hypothyroidism, hyperthyroidism/Graves’ disease, thyroid cancer), on Saturday, November 1 from 1 p.m. to 3 p.m. at the Hotel Del Coronado, 1500 South Orange Avenue, Coronado, California.  This event is sponsored by the American Thyroid Association, ThyCa: Thyroid Cancer Survivors’ Association, Inc., and other organizations. 
  • A free webinar for bloggers interested in thyroid cancer will take place on Tuesday, October 28, 2014, from 6:30 p.m. – 8:00 PM EDT is hosted by Genzyme. Gary Bloom, Executive Director of ThyCa: Thyroid Cancer Survivor’s Association, Inc., is one of the speakers. The webinar will cover radioactive iodine treatment options, the role of Thyrogen® (thyrotropin alfa for injection), and support services and education for people with thyroid cancer. 

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Thyroid Cancer Poster at Farmers’ Market

Angel Conicelli created a colorful poster to raise awareness of thyroid cancer at her local farmers’ market co-op in Wrightstown, Pennsylvania. She displayed it with a table filled with Thyroid Cancer Basics and other ThyCa materials.  Thank you, Angel!  

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More Than 14,000 People Now Take Part in ThyCa’s Inspire Online Support Community 

Our ThyCa Inspire Online Support Community has reached a new milestone: 14,000 people!  Thyroid cancer survivors from teenagers to people in their eighties take part in this support community. They live in all parts of the world.

Online support is an opportunity for people to send messages back and forth with fellow thyroid cancer survivors going through their thyroid cancer journeys. It can be especially beneficial for people who either don’t live near a face-to-face support group, or are unable to attend the meetings. 

To learn more, to join this free support community, and to get details about our local support groups, visit our Support Groups web pages. 

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For Medical Professionals — Free CME Symposium on Thyroid Cancer, Saturday, October 18, in Denver 

A free CME symposium for medical professionals focused on Thyroid Cancer Care and Research and took place on Saturday, October 18, 2014, at the Doubletree by Hilton Denver Hotel in Denver, Colorado. 

Physicians attending the CME event received continuing medical education credits from Rose Medical Center. 

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Anaplastic Thyroid Cancer Patient and Treatment in the News 

The DNA of a woman whose anaplastic thyroid cancer unexpectedly “melted away” for 18 months has revealed new mechanisms of cancer response and resistance to the drug everolimus, according to researchers from Dana-Farber Cancer Institute and Broad Institute of MIT and Harvard. The ATC patient is still alive after 4 years. 

Here’s the article from Dana Farber.

The New York Times discussed this patient also, in its article titled “Finding Clues in Genes of ‘Exceptional Responders’.”

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Video: Utilizing TKIs in Advanced Medullary Thyroid Cancer 

Specialists describe studies that compared TKIs, vandetanib (Caprelsa®) and cabozantinib (Cometriq®), to placebo in patients with advanced medullary thyroid cancer. They discussed when a patient should start a TKI. Here is the video.

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Thank You, Tamara! 

Tamara Chapman wrote us this week about her highly successful Thyroid Cancer Awareness Display and Fundraiser. 

To wrap up ThyCa Awareness Month, the barre fitness studio also did a final ThyCa Thursday and they donated 10% of their retail sales to ThyCa!  It was awesome! 

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Your Donations at Work—Supporting Research 

Thanks to your generous donations, both small and large, ThyCa has awarded 6 thyroid cancer research grants in 2014, and 47 research grants in all, for a total of more than $1.3 million dollars! 

Together we can work toward our dreams of a world free of thyroid cancer. 

Our grants support research on all types of thyroid cancer— papillary, follicular, variants, medullary, and anaplastic. 

We’re proud to be in our 14th year of fundraising for research for cures for all thyroid cancer. Our grants are open to researchers and institutions worldwide. 

You’re invited to join the ThyCa Rally for Research. 

Visit our Rally for Research page to learn more and to donate.

Thank you!

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Scarfies Raise Awareness 

Thanks very much to all who raised awareness on Twitter through your Scarfies4Thyca. Here are two, from @jessiegoldblum and @livinginsteil.: 

Here’s more about Scarfies4thyca.

 

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Low-Iodine Recipe of the Month: Thick Spaghetti Sauce and Meatballs 
Contributed by Karen C. of Pennsylvania

Thick Spaghetti Sauce and Meatballs 

Karen writes, “My husband loves thick spaghetti sauce so I came up with the following recipe and he loves it. I found a new product in the canned tomato section. Pure strained tomatoes from Italy, no salt added. 

Spaghetti Sauce 

4 boxes of strained tomatoes
10 garlic cloves, chopped
1 large onion, chopped
1 Tablespoon dry oregano leaves
1 Tablespoon dried basil
1 teaspoon of black pepper
1 1/2 Tablespoons of Kosher salt
4 Tablespoons of white sugar
1/8 cup olive oil

Meatballs 

2 pounds ground beef
1/3 cup egg whites
2 cloves of garlic
1 chopped onion
2 slices of your homemade bread made into breadcrumbs (I run it through my food processor)
1 teaspoon salt
1/2 teaspoon black pepper

Roll meat into small balls and fry in olive oil. Pat dry before you add them to the sauce.  Makes approx. 20-24 meatballs.  They are easy to weigh.  After you cook they normally weigh 2 ounces each…so you can have 2 or 3.   

I put everything in a Dutch oven on low and cook it at least 6 hours. I normally make it at a day ahead of when we are going to use it. It freezes well.  

We make our favorite salt free pasta to go with it, and you have a great meal.  

Thank you, Karen! 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.

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It Only Takes One Minute 

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 possible our services and Thyroid Cancer Research Grants.  

It only takes a minute to make a donation online in support of ThyCa’s services and research funding (or you are welcome to donate by mail to ThyCa, P.O. Box 1102, Olney, MD 20830-1102). 

We thank you in advance for your support!  

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About ThyCa News Notes and ThyCa

Copyright (c) 2014 ThyCa: Thyroid Cancer Survivors’ Association, Inc. 

This newsletter and ThyCa’s many other services and thyroid cancer research grants are made possible through the generous contributions from our donors and volunteers. Thank you! 

We invite everyone’s contributions, small or large, financial and volunteer service. Together we make a difference! 

You’re invited to share this newsletter with your family and friends. If you would like to suggest further topics or contribute an article, please contact us at publications@thyca.org. 

Thank you to our writing, editing, and proofreading team for this issue: Karen C., Kristy F., Leah Guljord, Pat Paillard, Barb Statas, Theresa Wickerham, Cherry Wunderlich, and Gary Bloom. 

The information 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, awareness for early detection through Thyroid Cancer Awareness Month and year-round campaigns, and fundraising for thyroid cancer research. 

Visit our website for information about thyroid cancer, events, and how to 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.  

 

 

In This Issue:

ThyCa Adds YouTube Channel! 

Watch and listen to the Webinars with Experts on ThyCa’s YouTube Channel. We’ve also added more thyroid cancer videos to our YouTube Channel.  

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New Thyroid Cancer Awareness Graphics! 

Three new Thyroid Cancer Awareness Graphics are now on our Raise Awareness page. 

Use them on your Facebook page, your blog, and your e-mails. 

Help others find thyroid cancer early, when it’s usually treatable. 

Connect people with the free handbooks, support groups, the Conference, and more events to help their quality of life and give the latest medical information to aid their care. 

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Lenvatinib Approval Sought from FDA 

Eisai, the manufacturer of lenvatinib (E7080), has submitted a New Drug Application to the U.S. Food and Drug Administration (FDA) for the use of lenvatinib to treat patients who have progressive, radioactive iodine (RAI)-refractory differentiated thyroid cancer (papillary, follicular, and variants). 

The FDA review timeline will be set in mid-October, with the fastest possible decision to take place in 6 months. 

For more information about lenvantinib, visit our lenvatinib information page.

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FDA Committee Recommends Approval of Natpara®

The Endocrinologic and Metabolic Drugs Advisory Committee of the U.S. Food and Drug Administration has voted 8 to 5 to recommend that the FDA approve Natpara® (rhPTH[1-84]) for the long-term treatment of Hypoparathyroidism. The FDA is expected to make its decision by October 24, 2014. 

ThyCa Executive Director Gary Bloom was one of 14 members of the public who spoke in support of approval at the FDA meeting on September 12. Our web site will soon add a page with more information about Natpara® and the FDA, and the discussion of Hypoparathyroidism at the Conference in October will also give an update.

Hypoparathyroidism is an endocrine disorder, involving low calcium levels in the blood, experienced by some people with thyroid cancer due to damage or removal of the parathyroid glands during thyroid surgery. After thyroid surgery, symptoms of low calcium levels include muscle spasms as well as tingling and numbness, especially in the hands or feet. ThyCa’s web site and handbooks have more information. 

Natpara® was developed by NPS Pharmaceuticals. 

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Thyroid Cancer In the News

Physicians’ Weekly, Wall Street Journal, Patient Access Network, American Thyroid Association, and American Association of Clinical Endocrinologists are among numerous organizations focusing on thyroid cancer awareness this month. 

Thank you!

Here are links to a few of the recent features: 

  • The Wall Street Journal interviewed ThyCa Executive Director Gary Bloom for its article titled “Should You Get Cancer Screenings?”
  • The Pennsylvania, Trib Live interviewed surgeons David Goldenberg, M.D. and Linwah Yip, M.D., and thyroid cancer survivor Chris Sypien, focusing on Pennsylvania’s rising rate of thyroid cancer.  
  • In Missouri, the Daily Journal highlighted the importance of early detection and interviewed, 39-year thyroid cancer survivor Theresa Wickerham, ThyCa Program Coordinator and St. Louis Support Group Co-Facilitator. 
  • KRQE TV 13 in Albuquerque, New Mexico, interviewed an endocrine surgeon.

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Colorful Awareness Display!

 Jennifer K. writes, “I have felt honored this month by raising thyroid cancer awareness in the beauty salon where I work. People seem to really appreciate all the literature donated by ThyCa.” Thank you, Jennifer!

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Raising Awareness with Scarfies4ThyCa

ThyCa: Thyroid Cancer Survivors’ Association, Inc., is pleased to collaborate with Scarfies4Thyca in this social media campaign for Thyroid Cancer Awareness Month.

We invite you to take part if you’re on Facebook, Twitter, or both, and to send us your photos with your permission to share them. Find out more. 

Amanda DeForge is one of many who sent photos. She writes, “Here’s my scarfie! My scarfie photo was taken 2 weeks after my surgery, which was 4 weeks after my youngest was born (she is the one in the bottom photo). The other photos are of my girls this week in support of me!”

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Scarfies4Thyca in the Family 

Chuck, Alvina, and Patrick are wearing their scarfies4thyca, for Thyroid Cancer Awareness Month! They live in Arizona. 

Patrick has been actively raising awareness about thyroid cancer since his diagnosis. His story is on our web site in last month’s newsletter.

Thank you for this great family effort!

 

Read more about Scarfies4thyca.

 

Proceeds from Award-Winning Novel Contribute to ThyCa

In honor of Thyroid Cancer Awareness month, medullary thyroid cancer survivor and author David Kalish will donate half of profits from his new novel in September, as welll as proceeds during the conference in October, to ThyCa: Thyroid Cancer Survivors’ Association. 

“The Opposite of Everything” is a comic and inspirational twist on David’s journey through cancer and divorce, to treatment and renewal. A medullary thyroid cancer survivor is the main character in the award-winning humorous novel. The book is available through Amazon. Thank you, David!

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Free Thyroid Screenings in Augusta, Georgia 

On Tuesday, September 30, from 8 a.m. to 12 noon, the Georgia Regents University Thyroid and Parathyroid Center in Augusta, Georgia, will offer free public thyroid screenings by endocrinologists and endocrine surgeons, 

The screenings will include free physical exams, risk assessments, and ultrasounds. The event will take place in the Otolaryngology office in the GWU Health Medical Office Building. We’ll add details to the Calendar on our web site. 

Thank you to William S. Duke, M.S., and the physicians for holding this event again this year. ThyCa is pleased to provide awareness materials for the participants.

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Send Us Your Stories and Photos! 

Please send your stories and photographs of your awareness efforts to publications@thyca.org.  We’ll try to include them in an upcoming Bulletin.  

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Take the ThyCa 30 Day Awareness Challenge!

Give hope, help, and support to all of us dealing with a thyroid cancer diagnosis by donating $30 (that’s just $1 per day) or whatever you can spare––for Thyroid Cancer Research.  

Donations can be made online . 

Or donate by mail.

The ThyCa 30 Day Awareness Challenge is sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc., sponsor of Thyroid Cancer Awareness Month. 

Thank you! 

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The Conference Speaker Roster Grows!

We’re honored to introduce more distinguished experts who will speak at the 17th International Thyroid Cancer Survivors’ Conference coming up on October 17, 18, and 19 in Denver, Colorado! 

Join us for 1, 2, or all 3 days. Get all the details and early-bird registration (the early-bird deadline is September 17) as well as hotel rooms at the special rate, at www.thyca.org. 

  • Monica Fawzy Bryant, Esq., J.D., is a Cancer Rights Attorney specializing in health insurance, employment, and disability issues at Triage Cancer in Chicago, Illinois. She has led multiple sessions at past ThyCa conferences. 
  • Thomas J. Giordano, M.D., Ph.D., is a Pathologist at the University of Michigan Hospitals, Ann Arbor, Michigan, where he directs the Director, Tissue and Molecular Pathology Core as well as the Molecular Pathology Research Laboratory. 
  • Raymon Grogan, M.D., is an Endocrine Surgeon at the University of Chicago Medical Center, Chicago, Illinois. 
  • Elizabeth G. Grubbs, M.D., M.S., is a Surgeon at the University of Texas M. D. Anderson Cancer Center in Houston, Texas. 
  • Kimi Kondo, D.O., is an Interventional Radiologist at the University of Colorado School of Medicine in Denver, Colorado. 
  • Michael A. Levine, M.D., is a Pediatric Endocrinologist at the Children’s Hospital of Philadelphia, Pennsylvania. 
  • Beverly McClaughlin is the Patient Affairs Coordinator for the Endocrine Neoplasm Programs at the University of Colorado in Denver. 
  • Nayana Patel, M.D., is a Radiologist and Associate Professor of Radiology-Body Imaging at the University of Colorado School of Medicine in Denver, Colorado. 
  • Christopher D. Raeburn, M.D., is a Surgeon at the University of Colorado Hospital in Denver, Colorado. 
  • Rebecca E. Schweppe, Ph.D., is a Researcher at the University of Colorado School of Medicine, focusing on novel molecular targets relevant to papillary and anaplastic thyroid cancer.
  • Joyce J. Shin, M.D., is an Endocrine Surgeon at The Cleveland Clinic Foundation in Cleveland, Ohio. 
  • R. Michael Tuttle, M.D., is an Endocrinologist at Memorial Sloan-Kettering Cancer Center New York City, New York. Dr. Tuttle is a ThyCa Medical Advisor and has spoken at many ThyCa conferences.
  •  Kimberly Vanderveen, M.D., M.A.S., is an Endocrine Surgeon at the Denver Center for Endocrine Surgery in Denver, Colorado. 

We will continue to add information to our Conferences page.

We look forward to seeing you in October!

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Invitation to the Dinner/Auction Research Fundraiser, and for Auction Item Donations 

The 13th Annual Dinner/Auction for Thyroid Cancer Research will be a memorable evening of camaraderie and fundraising for vitally needed thyroid cancer research. 

This wonderful event takes place on Saturday, October 18, in Denver, Colorado. 

You’re invited to join us. Whether you join us, or even if you can’t come, please send a financial donation or an item for the auction. Gift cards, handcrafted items, and other goods or services are welcome. Find out more by emailing to fundraising@thyca.org. 

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Creative Awareness at a Fitness Center

Tamara Chapman writes from Louisville, Kentucky: 

“I thought I’d let you know what I’m doing to raise awareness this September!  I teamed up with the local barre fitness studio (B You Fitness) where I work out. 

“They featured me in their e-mail newsletter, and I put pamphlets, neck check cards, and information about ThyCa all around the studios. They are also doing ‘ThyCa Thursdays,’ where they put ThyCa facts on their Facebook page each week. I am SO excited and grateful that they helped me do all this, and I just hope the information helps someone.  

“Thanks for sending the pamphlets and neck check cards!”  

 

Thank you, Tamara! 

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The Awareness Display in the Park 

Each week, Yolanda Roberts is hosting a Thyroid Cancer Awareness Display Table in Philadelphia, Pennsylvania. 

She writes, “I recently requested awareness materials to set up a table at our community Oldies In The Park event every Thursday.” 

“I wanted to bring awareness to the community, so every Thursday for the month of September I will be setting a table up with the awareness material as well as ribbons I made for people to wear to bring awareness.” 

“I even had my nails polished and designed to go with the Thyroid Cancer Awareness colors.”  🙂  

Terrific efforts, Yolanda! 

 

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Outreach at the Palmyra Canal Town Days 

Volunteers of the ThyCa Rochester, New York, Support Group will take part in this year’s Palmyra Canal Town Days in Palmyra, New York, all day on September 13 and 14th.  The volunteers will raise awareness of thyroid cancer and share information about the local support group in Rochester. 

The ThyCa Rochester Support Group meets on the second Tuesday evening of each month as well. 

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Authors Supporting Thyroid Cancer Awareness and Research: Online Event

New author and thyroid cancer survivor, Laurie Wetzel, who wrote “Unclaimed”, has joined with fellow authors to raise awareness and funds for thyroid cancer research an online book auction on September 19. All money raised will be donated to ThyCa!  

Thank you for your great support, Laurie and friends!

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Visit the Easy “One-Click” Calendar To Find Thyroid Cancer Events

Thyroid cancer events take place in lots of locations every week. Dates and details are easy to find with just one click from the Home Page of our web site. 

Go to our home page for the Events Calendar link. Or click here. 

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Thyroid Cancer Awareness Efforts Going Strong! 

Thyroid Cancer Awareness Month has had terrific participation! 

More than 1,100 people shared ThyCa’s Facebook graphic/cover photo for Thyroid Cancer Awareness Month on their own Facebook pages. Lots of people shared the official press release and contact information, plus announcements of educational and supportive events. Thank you!

More ways to reach your friends and relatives— forward and share the weekly online newsletter, download free flyers and graphics from the Raise Awareness Page, and ask us to mail you free brochures, neck check cards, patient information handbooks, and added handouts. 

We’re grateful to the 19 terrific ThyCa volunteers who established this international thyroid cancer awareness observance in 2000, and then expanded it to the full month of September. 

Each year, more people actively get involved in Thyroid Cancer Awareness Month and spread the word through face-to-face events, and using social media to reach more people around the world. 

Thank you very much to all the dedicated volunteers worldwide. You are helping your friends, families, and coworkers by connecting them with the free thyroid cancer information reviewed by thyroid cancer specialists, as well as free support services, and a wide array of events. 

Three easy links: 

Together, we’re helping early detection, connections to support and educational events with experts, and research for cures for all thyroid cancer. 

Our combined great efforts are making a difference! 

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 Display for Thyroid Cancer Awareness

The ThyCa Fresno, California Support Group set up a Thyroid Cancer Awareness Window Display at the Woodward Park Library in Fresno. 

Thank you to Anjali Kapoor-Davis and Miriam Delfin, the support group’s facilitators, and Denise Grayson, Vashie Miller, and Lisa Gomez Moralez, for your great efforts! 

Please send your stories and photographs of your awareness efforts to publications@thyca.org.  We’ll try to include them in an upcoming Bulletin.  

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Window Display for Thyroid Cancer Awareness 

The ThyCa Fresno, California Support Group set up a Thyroid Cancer Awareness Window Display at the Woodward Park Library in Fresno. 

Thank you to Anjali Kapoor-Davis and Miriam Delfin, the support group’s facilitators, and Denise Grayson, Vashie Miller, and Lisa Gomez Moralez, for your great efforts! 

Please send your stories and photographs of your awareness efforts to publications@thyca.org.  We’ll try to include them in an upcoming Bulletin.  

Free Seminars in California, Connecticut, Florida, Illinois 

Visit our Calendar Page for these events, support group meetings in many locations every week, and more.

  • Waterbury, Connecticut, on the evening of September 10. Dr. Jerome O. Sugar, Otolaryngologist will speak on Current Genome Advances in Thyroid Cancer Diagnosis, hosted by the ThyCa Waterbury, Connecticut, Support Group. Light snacks begin at 6 p.m. and the presentation with Q&A starts at 7 p.m.
  • Redondo Beach, California, Saturday, September 13. Dr. Dennis R. Maceri, Otolaryngologist from the University of Southern California Ambulatory Care Health Center, will speak at the September meeting of the ThyCa South Bay L.A. support group. 
  • Chicago, Illinois, on the evening of September 16. Dr. Brian W. Kim, Endocrinologist from Rush University Medical Center, will be the guest speaker at the meeting of the ThyCa Chicago Support Group. He will discuss treatment options, guidelines, and long-term management. 
  • Orlando, Florida, Thyroid Cancer Patient Education Day, Saturday, September 20, with 5 physician speakers, from 1 p.m. to 5 p.m. Location: Hyatt Regency Orlando/ Hosted by the Endocrine Surgery Committee of the American Academy of Otolaryngology—Head and Neck Surgery Foundation, in collaboration with ThyCa: Thyroid Cancer Survivors’ Association, Inc.

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New Support Groups Begin Meeting in Hawaii, Texas, and Virginia

Visit the Local Support Group pages for details about these thyroid cancer support groups, plus more than 110 local support groups across the United States and in Australia, Canada, Colombia, Costa Rica, and Philippines. We also help new groups form. Read more on the Local Support Groups page.

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Your Donations at Work—Supporting Research

Thanks to your generous donations, both small and large, ThyCa has awarded 6 thyroid cancer research grants in 2014, and 47 research grants in all, for a total of more than $1.3 million dollars! 

Together we can work toward our dreams of a world free of thyroid cancer. 

Our grants support research on all types of thyroid cancer— papillary, follicular, variants, medullary, and anaplastic. 

We’re proud to be in our 14th year of fundraising for research for cures for all thyroid cancer. Our grants are open to researchers and institutions worldwide. 

You’re invited to join the ThyCa Rally for Research. 

Visit our Rally for Research page to learn more and to donate.

Thank you!

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Low-Iodine Recipe of the Month: Granola Bars
Contributed by Barb K.

Homemade Granola Bars

2 cups oatmeal
1 cup sliced unsalted almonds
3 Tablespoons walnut oil
2/3 cup honey
1/4 cup brown sugar
1  teaspoon vanilla
1/4 teaspoon noniodized salt
1 cup dried fruit.  Choose one, or mix:  apricots, cherries, raisins, dates, cranberries.

Preheat the oven to 350.  

Combine oatmeal and almonds and toast on a cookie sheet for 10-12 minutes.  When they’re done, reduce oven temperature to 300. 

In a large pot, combine the walnut oil, honey, brown sugar, vanilla, and salt.  Bring to a boil over medium heat, then reduce heat and boil one minute. 

When oats and almonds are toasted, add them to the boiled mixture and stir well.  Stir in dried fruit. 

Pour the mixture into a well greased baking dish.  Use a 9×9 pan for thicker bars and 9×13 for thinner bars.  Press down with greased fingers.  

Bake 25-30 minutes or until browned on top.  Cool completely before cutting.  They will be difficult to get out of the pan, but so worth it! 

Thank you, Barb! 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.

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#ThyCaTalk Generates Awareness Buzz on Twitter 

In June, we initiated our first game on social media to build buzz for Thyroid Cancer Awareness Month and to have a little fun while we were doing it. And we have … had fun, that is! 

#ThyCaTalk #trivia is an opportunity for @ThyCaInc Twitter followers to answer trivia questions about ThyCa and thyroid cancer for a chance to win a variety of prizes, including T-shirts, ThyCa memberships, and a Thyroid Cancer Survivors’ Annual Conference registration. 

Each week through September, we draw one winner from all those who submit correct responses. Winners have come from four countries— Canada, Chile, Mexico and United States! U.S. winners hailed from 13 states, in every region — from California to Maryland, Louisiana to Minnesota, and South Carolina to Massachusetts. 

On September 30th, we’ll host our final #ThyCaTalk trivia for 2014. Join us @ThyCaInc on Twitter for your chance to win a one-year ThyCa membership. Also, in the first week of October, we’ll hold a drawing from everyone who participated in #ThyCaTalk for a special prize pack. We’ll announce the winner on Twitter. 

Thank you to everyone for playing and creating awareness about thyroid cancer. 

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Follow Us

 

Our support of each other —whether giving or receiving —is an incredible gift. Thank you for joining us.

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It Only Takes One Minute 

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 possible our services and Thyroid Cancer Research Grants.  

It only takes a minute to make a donation online in support of ThyCa’s services and research funding (or you are welcome to donate by mail to ThyCa, P.O. Box 1102, Olney, MD 20830-1102). 

We thank you in advance for your support!  

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About this Newsletter and ThyCa

Copyright (c) 2014 ThyCa: Thyroid Cancer Survivors’ Association, Inc. 

This newsletter and ThyCa’s many other services and thyroid cancer research grants are made possible through the generous contributions from our donors and volunteers. Thank you! 

We invite everyone’s contributions, small or large, financial and volunteer service. Together we make a difference! 

You’re invited to share this newsletter with your family and friends. If you would like to suggest further topics or contribute an article, please contact us at publications@thyca.org. 

Thank you to our writing, editing, and proofreading team for this issue: Kristy F., Leah Guljord, Barb K., Pat Paillard, Barb Statas, Theresa Wickerham, Cherry Wunderlich, and Gary Bloom. 

The information 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, awareness for early detection through Thyroid Cancer Awareness Month and year-round campaigns, and fundraising for thyroid cancer research. 

Visit our website for information about thyroid cancer, events, and how to 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. 

 

 

More than 600 people from the United States, Canada, and United Kingdom attended the 17th International Thyroid Cancer Survivors’ Conference, making it the biggest yet. The annual conference is sponsored by the nonprofit ThyCa: Thyroid Cancer Survivors’ Association, Inc.

People from teenagers to seniors, with all types of thyroid cancer (papillary, follicular, medullary, anaplastic, and variants), as well as caregivers, came to Denver, Colorado, on October 17-19, 2014, for more than 100 sessions led by over 70 physician experts, other specialists, survivors, and caregivers.

Top thyroid cancer experts from Duke University Medical Center, Massachusetts General Hospital Center, Memorial Sloan-Kettering Cancer Center, University of Colorado Health Sciences Center, University of Texas M.D. Anderson Cancer Center, and many more centers spoke and answered questions. They presented the latest information on treatment, research results regarding diagnosis and treatment, short-term as well as lifetime follow-up, and clinical trials for advanced metastatic thyroid cancer. Two speakers were previous recipients of ThyCa’s Thyroid Cancer Research Grants.

New topics at this year’s conference included Molecular Markers in Thyroid Cancer, and What They Mean for Future Treatment Advances; New Ideas regarding the use of Radioactive Iodine in Thyroid Cancer, New Approaches, New Evidence; and Coping with Treatments and Side Effects of New Targeted Therapies and Chemotherapy, Including Managing Drug Holidays.

The 13th Annual Dinner/Auction Fundraiser held Saturday evening during the Conference was a success, raising more than $35,000 for thyroid cancer research. The evening included a tribute to ThyCa Medical Advisor and American Thyroid Association Past President Bryan Haugen, M.D. This fundraiser helps ThyCa continue to fund thyroid cancer research—now totaling more than $1.3 million. ThyCa will fund additional research grants in 2015.

The 18th International Thyroid Cancer Survivors’ Conference will take place on October 2 – 4, 2015, in St. Louis, Missouri, just after September’s annual Thyroid Cancer Awareness Month, the worldwide observance sponsored by ThyCa with support from partnering organizations and individuals.

For more information about ThyCa events, support groups, one-to-one support, free webinars with experts, free handbooks and more materials for patients and professionals, research fundraising, Thyroid Cancer Awareness Month, and year-round awareness activities, visit our website.

Educational and Supportive Event Features More Than 100 Sessions for Everyone Interested in Thyroid Cancer, the Fastest Increasing Cancer

The 17th International Thyroid Cancer Survivors’ Conference will take place on October 17-19, 2014, at the Doubletree by Hilton Denver Hotel, 3203 Quebec Street, Denver, Colorado. The conference is sponsored by the nonprofit ThyCa: Thyroid Cancer Survivors’ Association, Inc. Everyone interested in thyroid cancer is invited to attend for 1, 2, or all 3 days. 

This unique weekend is for people with every type of thyroid cancer, at all phases of testing, diagnosis, treatment, and follow-up, as well as for family members, friends, medical professionals, and everyone interested in thyroid cancer. Thyroid cancer continues to increase in incidence, and it affects people of all ages from young children to seniors. 

This annual conference offers an exceptional opportunity to learn from top thyroid cancer experts from numerous leading centers. They will speak and answer questions about the latest advances in thyroid cancer care and research on each type of thyroid cancer— papillary, follicular, variants, medullary, and anaplastic. 

Attendees will also have the opportunity to learn about coping skills, complementary approaches to well-being, and practical issues from mental health professionals, an attorney, and others, and to share experiences with others living with all types of thyroid cancer. 

The conference also includes exhibits and resource tables with extensive free materials on thyroid cancer and related topics. 

This important event features more than 100 informative sessions designed for those whose lives have been touched by thyroid cancer. 

  • Advances in thyroid cancer treatment and follow-up
  • Clinical trials of new treatments
  • Research updates
  • Thyroid hormone replacement
  • Ask-a-Doctor sessions
  • Attorney-led sessions on employment, health insurance, disability, other legal issues
  • Coping skills and strategies to improve well-being
  • Survivor-caregiver roundtable discussions 

Numerous distinguished institutions around the United States will be represented, including The Cleveland Clinic, Duke University Medical Center, Massachusetts General Hospital Cancer Center, M.D. Anderson Cancer Center, Memorial Sloan-Kettering Cancer Center, National Cancer Institute, University of Colorado Health Sciences Center, and more. 

“The annual Thyroid Cancer Survivors’ Conference is the key international event focused specifically on support and education for people affected by thyroid cancer,” said Gary Bloom, ThyCa Executive Director, Conference Co-Coordinator, and 18-year survivor of thyroid cancer. “We are honored to bring together such an impressive variety of people to learn from experts, share knowledge and experiences, and build camaraderie with those affected by this terrible disease.” 

The conference is open to the public. Registration is available either by mail (through October 3), online (through October 10), or onsite at the conference. Registration begins at 8 a.m. each day, with walk-in attendees welcome to register onsite at the conference. Cost for the conference is $50; family/guests $30; and 1-day registration is also available. Scholarships are available on request, to cover the registration fee. 

The speaker list and additional details are available on the ThyCa website  and the Program Schedule will be posted before the conference. 

ThyCa: Thyroid Cancer Survivor’s Association will conduct a free workshop on “Covering Thyroid Cancer” on Thursday, October 16, 2014, from 4 p.m. to 5 p.m. as part of its 17th International Thyroid Cancer Survivors’ Conference at the Doubletree by Hilton Denver Hotel, 3201 Quebec Street, Denver, Colorado. 

Media representatives and medical writers are welcome. The workshop will include questions and answers and free materials, including the 50-page handbook Thyroid Cancer Basics (available in English, Chinese, and Spanish) plus the Anaplastic Thyroid Cancer Handbook and Medullary Thyroid Cancer Handbook. 

Thyroid cancer survivors will be available for interviews. Journalism students are welcome. 

Thyroid cancer has increased rapidly in incidence in recent years in both men and women. A total of 62,980 people will be diagnosed with thyroid cancer in the United States in 2014. Thyroid cancer is now the ninth most common cancer. It  occurs in all age groups from young children through seniors. Three of every four people diagnosed are women. Thyroid cancer has several types and variants and is treated differently from other kinds of cancer. 

The 17th International Thyroid Cancer Survivors’ Conference will take place on October 17-19, 2014, at the Doubletree by Hilton Denver Hotel, 3201 Quebec Street, Denver, Colorado, with over 100 sessions and 50 speakers, including 40 physicians and other specialists from numerous leading centers. 

ThyCa: Thyroid Cancer Survivors’ Association, Inc. s a non-profit 501(c)(3) organization of thyroid cancer survivors, family members, and health care professionals, founded in 1995 and dedicated to support, education, and communication for thyroid cancer survivors, their families and friends. ThyCa serves people worldwide and sponsors Thyroid Cancer Awareness Month, year-round awareness activities, free support groups and publications, the annual International Thyroid Cancer Survivors’ Conference, and thyroid cancer research fundraising and research grants. 

September is Thyroid Cancer Awareness Month.  Give hope, help, and support to all of us dealing with a thyroid cancer diagnosis by donating $30 (that’s just $1 per day) or whatever you can spare––for Thyroid Cancer Research.  

Please challenge others so we can achieve our goal of a world free of thyroid cancer! 

Donations can be made online. Or donate by mail.

The ThyCa 30 Day Awareness Challenge is sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc., sponsor of Thyroid Cancer Awareness Month. 

Thank you!

 

Lenvatinib Approval Sought from FDA 

August 18, 2014— Eisai, the manufacturer of lenvatinib (E7080), has submitted a New Drug Application to the U.S. Food and Drug Administration (FDA) for the use of lenvatinib to treat patients who have progressive, radioactive iodine (RAI)-refractory differentiated thyroid cancer (papillary, follicular, and variants).

The FDA review timeline will be set in mid-October, with the fastest possible decision to take place in 6 months.

* * * * *

Lenvatinib Update 

July 30, 2014— Lenvatinib, a new drug that has shown promise in a clinical trial for treating progressive differentiated thyroid cancer (papillary, follicular, and their variants) that does not respond to radioactive iodine, will receive accelerated assessment by the European Medicines Agency (EMA).

Lenvatinib is an oral multiple receptor tyrosine kinase (RTK) inhibitor. It is manufactured by Eisai.

Esai also reported that it soon plans to submit an application to the United States Food and Drug Administration (FDA) for Lenvantinib.

* * * * *

Lenvatinib shows promising results as a treatment option for people with differentiated radioiodine-resistant thyroid cancer, according to a Phase III clinical trial reported at the meeting of the American Society of Clinical Oncology (ASCO).

Lead study author is Martin Schlumberger, M.D., Oncology Professor at University Paris Sud, France and ThyCa Medical Advisor.

A summary of the presentation at ASCO is here.

(Selfie + Scarf = Scarfie) 

ThyCa: Thyroid Cancer Survivors’ Association, Inc., is pleased to collaborate with Scarfies for Thyca in this social media campaign for Thyroid Cancer Awareness Month.

We invite you to take part if you’re on Facebook, Twitter, or both, and to send us your photos with your permission to share them. 

How? 

Wear a scarf and take a selfie to make a “scarfie.” Post the photo during September, Thyroid Cancer Awareness Month, and tag #scarfies4thyca. 

September is Thyroid Cancer Awareness Month sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. You can help raise awareness by taking a selfie wearing a scarf and posting the photo to your Facebook wall, drawing attention to the need for regular neck checks to detect thyroid cancer early. 

Add the paragraph above when you post your photo, to highlight the importance of neck checks for early detection. 

Do more by posting your “scarfie” as your profile photo for at least one day, tagging friends to participate, and making a donation. Get more information and share your photo on the Scarfies Facebook page.  

Who and why? 

Thyroid cancer survivors started the Scarfies campaign to encourage others to get their necks checked for this disease. 

A scarf around the neck draws attention to where the thyroid is located. Many thyroid cancer survivors wear scarves to protect their new incisions from the sun.

Your Photos 

We invite you to share your photo with us. 

  • E-mail a jpeg image to publications@thyca.org . We plan to add photos to this web page. 
  • Post your photo on your own Facebook page, and with Scarfies for Thyca.

Thank you! We look forward to seeing your scarfies! 

Contents

ThyCa Announces ePubs 

We’re excited to announce that ThyCa’s first four free ePubs are now
available on GooglePlay/books and iTunes/iBooks.

  • Thyroid Cancer Basics Handbook
  • Anaplastic Thyroid Cancer Handbook
  • Medullary Thyroid Cancer Handbook
  • Low-Iodine Cookbook

Read them on your Android or iOS devices. You can search on GooglePlay or iTunes on the keyword “ThyCa” to find them. We’ll soon add the direct links to our web site. 

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Thyroid Cancer Awareness Month Begins Soon

Here are three ways to help raise awareness, during September, and year-round: 

  • Raise Awareness for Early Detection. We’ll send free awareness materials anytime, anywhere in the world. For details, tools, tips, and partnering information, visit our Raise Awareness page. Check out the 10 Tips on How To Help.
  • Connect with Others. Join one of our free online support communities, a local support group, or both. Come to events, including the International Thyroid Cancer Survivors’ Conference. Find dates and locations on our Events Calendar. 
  • Support Research and our Free Resources with a donation. 

Thank you to everyone who has already asked for materials or downloaded flyers and publications from our web site. 

Your great efforts are making a difference in others’ lives!

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The 2014 Conference speaker roster just got even better! 

We’re excited to introduce more of our 35-plus great speakers for the 17th International Thyroid Cancer Survivors’ Conference coming up on October 17-19, in Denver, Colorado. 

  • Maria Albuja-Cruz, M.D., is a Surgeon at the University of Colorado Medical Center in Denver, Colorado. She will speak and answer questions about thyroid surgery. 
  • Daniel W. Bowles, M.D., is a Medical Oncologist at the University of Colorado Anschutz Medical Campus, in Denver, Colorado. He will discuss treatments and research for aggressive thyroid cancer. 
  • Maria E. Cabanillas, M.D., is an Endocrinologist at the University of Texas, M.D. Anderson Cancer Center in Houston, Texas. Her research focuses on new treatments for widely metastatic thyroid cancer, as well as in the management of side effects from these targeted therapies. 
  • Ross Cagan, Ph.D., is a Regenerative Biologist an researcher at the Icahn School of Medicine at Mount Sinai in New York City, New York. Dr. Cagan’s laboratory helped validate vandetanib as a therapeutic for Medullary Thyroid Carcinoma, and also combined Drosophila genetics and medicinal chemistry to develop a new generation of lead compounds that emphasize “balanced polypharmacology.”
  • Richard C. Cardoso, D.D.S., M.S., is an Oral Medicine Specialist at the University of Texas, M.D. Anderson Cancer Center, Houston, Texas. He will speak and answer questions about the many issues with the teeth and the mouth that can occur in association with different treatments for thyroid cancer. 
  • Gilbert J. Cote, Ph.D., is a Molecular Geneticist, Researcher, and Professor at the University of Texas M. D. Anderson Cancer Center in Houston, Texas, focusing on molecular genetic issues in thyroid cancer.
  • Aime T. Franco, Ph.D.,is a Research Scholar and Assistant Professor at the University of Arkansas for Medical Sciences in Little Rock,  Arkansas, where her research focuses on thyroid cancer. 
  • Jennifer Kwak, M.D., is a Nuclear Medicine Physician at the University of Colorado Hospital and School of Medicine, Denver, Colorado. She will discuss imaging techniques, the use of radioactive iodine, and more. 
  • Robert C. McIntyre, Jr., M.D., Surgeon, is Professor of Surgery, Medical Director of  the Surgical Intensive Care Unit, and President of the Medical Board at the University of Colorado Hospital in Denver, Colorado. 
  • Kristin Mckinney, M.D., Radiologist, is Assistant Professor of Radiology-Ultrasound Body Imaging at the University of Colorado in Denver, Colorado. She will discuss imaging techniques in the management and followup of thyroid cancer. 
  • Lynn Waldmann, M.S.W., L.C.S.W., is Senior Social Work Counselor at the University of Texas, M. D. Anderson Cancer Center in Houston, Texas. She has led sessions on survivorship and coping skills at past ThyCa conferences. 

Join us in Denver for 1, 2, or all 3 days. Learn about the latest advances and information you need to manage your care over the short and long term. 

Meet and learn from more than 35 distinguished medical professionals plus additional specialists in mental health, law, and coping and complementary approaches to well-being. 

Early-bird registration for the Conference continues. Mark your calendar for October 17-19 and register now, either online or by mail. Remember to take advantage of the early bird discount. 

Scholarships are available to cover the registration fee (just check the scholarship box on the registration form). 

If you’ve registered for the Conference and are coming from outside the Denver area, remember to book your hotel room at the special rate we’ve arranged: $89 per night for a single or double, available through October 1st. 

Don’t miss out on this unique weekend. Register now! We look forward to seeing you in October! 

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Free September Seminars in California, Connecticut, Florida, and Illinois

Visit our Calendar page for these events, support group meetings, and more. 

  • Waterbury, Connecticut, of the evening of September 10. Dr. Jerry Sugar will speak on Current Genome Advances in Thyroid Cancer Diagnosis, hosted by the  ThyCa Waterbury, Connecticut, Support Group. Light snacks begin at 6 p.m. and the presentation starts at 7 p.m. Location details on the group’s web page. 
  • Redondo Beach, California, Saturday, September 13. Dr. Dennis Maceri will speaker at the September meeting of the ThyCa South Bay L.A. support group. Details on the group’s web page.
  • Chicago, Illinois, on the evening of September 16. Dr. Brian W. Kim, MD, endocrinologist from Rush University Medical Center, will be the guest speaker at the meeting of the ThyCa Chicago Support Group. He will discuss treatment options, guidelines, and long-term management. For details and to RSVP, visit the group’s web page. 
  • Orlando, Florida, Thyroid Cancer Patient Education Day, Saturday, September 20 with 5 physician speakers, 1 p.m. to 5 p.m. Location: Hyatt Regency Orlando/ Hosted by the Endocrine Surgery Committee of the American Academy of Otolaryngology—Head and Neck Surgery Foundation, in collaboration with ThyCa: Thyroid Cancer Survivors’ Association, Inc. See the flyer. Register for this meeting.

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Patrick’s Story
By Chuck H., Patrick’s father 

We heard about ThyCa from a dear friend. Here is our story: 

As a part of a college/county wellness program in Arizona, my wife and I scheduled organ screening appointments. Then a friend had asked whether our two sons had ever gone to the wellness screenings. So we dragged Patrick, our 14-year-old, along with us even though he really wanted to stay at home. 

We asked if he could be screened and were told he could, but unfortunately the schedule was full. However, while we were there someone with an appointment was a no-show, so Patrick was screened. 

The thyroid scan showed that he had a mass on his right thyroid lobe. Our collective thoughts were “No way!” “You weren’t supposed to find anything!” and “This must be a mistake!” 

The next couple of weeks included sonograms, ultra-sounds, lab work, doctor’s visits, and lots of phone calls. A biopsy showed atypical/suspicious cells and the doctor recommended totally removing the thyroid. He told us that this was unusual for a 14-year-old, that we had fortunately caught it early. He was surprised that Patrick had been showing no symptoms. The results of the biopsy confirmed that Patrick had papillary thyroid cancer. 

These are the four worst words in the English language…”your son has cancer.” Fortunately, it is a very slow growing and very curable cancer. His surgery was at a university medical center. The surgery was long and difficult, but it was a success.

Pathology reports indicated that Patrick had follicular thyroid cancer, instead of papillary. Second most common kind of TC—slow growing, high survival rate, especially for pediatric patients. No radioactive iodine treatment needed at this point.  

A month later we met with a pediatric endocrinologist who referred us to a nuclear medicine doctor to go over the possibility of Patrick receiving radioactive iodine Treatment. After consulting with a team of doctors, we decided to proceed with this treatment to get rid of any residual thyroid tissue. The hardest part for us was Patrick being on a low-iodine diet during the holidays. Patrick was a real trooper!  He followed the diet from the cookbook we received through ThyCa and he did very well! 

He received 100 millicuries of radioactive iodine and was sent home. He was in total isolation for three days, and in in-house isolation for four days. The following week he had a scan that showed no residual thyroid tissue!  

He gets periodic lab work now. This will be a regular part of Patrick’s life from now on, but it is definitely something he can handle.

 As a family, we have been involved with the American Cancer Society Relay for Life for over 18 years. Patrick has now become an advocate for thyroid cancer awareness!  A few weeks ago he participated a RFL and gave out pamphlets provided by ThyCa on “neck checks”!  Team Patrick won for “Best Advocacy” for promoting “neck checks!” In October he will take part in another event and again will promote neck checks. 

We are looking forward to attending your conference in Denver this Fall! If it hadn’t been for that accidental screening, who knows how long it would have been before we knew he was sick. He is a big, strong young man and he showed no symptoms at all. We are so blessed that it was detected at an early stage. We will focus on the good, and not the bad.

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A Thank You Letter 

The enclosed check is a donation. Last year I had thyroid cancer, Stage 3. Your web site was the best guide. 

This summer I was able to do a craft sale that I have always said I should do. It was in Michigan the weekend after 4th July. I sold approximately $400 worth of my crafted tables and boxes from my past 8 years’ work on woodenboxfarm. 

Thanks for being there. 

–Tom Mesenbring

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Spreading the Word and Giving Support in Creative Ways

From West Virginia–“I was diagnosed with papillary thyroid cancer in 2013. I have been cancer free officially since December. Your web site has always been and continues to be a reassuring, educational reference for me. I work in a busy salon and with Thyroid Cancer Awareness Month quickly approaching I would like to hand out brochures to my clients and raise awareness.”

From New York—“Hi. I had thyroid cancer 2 years ago. I own a dance studio and would like to promote awareness to the families that attend my studio.”

From Texas–I was diagnosed with thyroid cancer in 2010…. I would like to put up a display in my church during the month of September.

From Pennsylvania–“I will be an 8 year thyroid cancer survivor this month…. Every year one of our community centers has an outside event with music and tables that draw over 200 people a week. I asked the person in charge if I would be able to put up a table every Thursday in September in recognition of Thyroid Cancer Awareness Month and was told absolutely.”

From Kentucky—“I’m raising awareness at the fitness studio where I work out. They are going to do a feature story on me, and we are going to get the word out about ThyCa facts and neck checks via email/Facebook/website! They are even having a day when a percent of their retail proceeds go to ThyCa!  I’m so excited!”

From Wisconsin— “I think I could give out about 40-50 brochures during September.”

From Virginia—“Our Endocrinology Department wants to pass out the Low Iodine Cookbooks to their patients and request 50 to be sent to us.”(Editor’s Note: The ThyCa Cookbooks are free).

From Australia—“I first contacted you in 2012 and you sent me your information pack, which was excellent. I remember you telling me that ThyCa has on-line support groups and also one to one support from people with the same condition…. I really appreciate that people like the ThyCa community are there.” 

From Florida—“I am interested in getting brochures to bring awareness to thyroid cancer. I would like to have them for September since it is thyroid cancer awareness month. I would like enough to pass out at my Jazzercise classes (workout classes) as well as some for my business to give to my clients.” 

From Massachusetts—“My office does a special Jeans’ Day every first Friday of the month. We donate $5 each to participate and the money goes to a charity. I have put in a request for September’s donation to go to ThyCa.”

From Louisiana–A youth soccer team wore thyroid cancer awareness shirts this summer, in honor of one boy’s parent, who has medullary thyroid cancer.

From Georgia—“I am a thyroid cancer survivor and would like to sponsor a bulletin board at work promoting thyroid cancer awareness. Please send me any materials you have 8 X 11″ or smaller including the awareness brochure and neck check cards. I would love to have extra cards and brochures for people to take with them. 

From another reader—“My sister is having a fundraiser in September given by her salon and would like to donate to ThyCa. Can you please send me any information or materials that would be helpful for us to distribute that day.” 

(Note to Readers: Have you thought about what you want to do to promote Thyroid Cancer Awareness ? E-mail us your ideas to: thyca@thyca.org; and let us know what literature and what quantities we can send to help you with your activities or event. Make sure you include your complete mailing address.)

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Care of the Caregiver
by Patricia Scott, R.N., B.S., M.B.A.

(Editor’s Note: We’re deeply grateful to all our wonderful caregivers. Some of us are both thyroid cancer survivors and caregivers for loved ones as well. We’re pleased to share this most helpful presentation from a past ThyCa conference.)

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.

Read the Full Article.

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Low- Iodine Recipe of the Month: Pecan Cookies
Contributed by Linda W.

Pecan Cookies 

1 ¼ cups brown sugar
½ teaspoon non-iodized salt
¾ pound pecans (3 cups)
¼ cup egg whites (usually 2 large egg whites)
36 pecan halves for tops of cookies Heat oven to 350° F.

Chop the pecans so that they are small coarse pieces. I usually do this by hand as the food processor makes them too fine or too uneven.

In the bowl of an electric mixer, combine the brown sugar, non-iodized salt, and pecan pieces.

Beat on low speed to incorporate all the ingredients. While on low setting, drizzle in the egg whites. Increase the speed to medium and beat for 2-3 minutes until it is all mixed.

It will seem as though they will never be mixed enough to actually be cookies, but they will. 

Line a pan with parchment paper.

Using a 1 Tablespoon measuring spoon, scoop a level spoon onto the parchment 4 cookies across and five cookies down. They spread a little.

When they are all on the cookie sheet, pat each one down with wet fingers, and then press a pecan half on top of each. (You can use a spoon or the bottom of a measuring cup to do this.) 

Bake for 10-12 minutes. They will puff a little bit and the edges will turn brown. The crusty edges and the slightly soft center are what make them taste a little like pecan pie cookies.

They seem fragile, but they are not.

Prepare a second cookie sheet while the first is baking.

Important: Let them cool completely before removing them from the pan.

I usually get 36 cookies from this recipe.

They freeze beautifully.

Linda writes, ”While on the Low Iodine Diet I noticed that one of our family’s favorite recipes is perfect for the diet with no changes or substitutions.” 

Thank you, Linda! 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.

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Follow Us–Have you heard about #ThyCa Talk?

Our Facebook community continues to grow with more than 11,300 people strong, and Twitter has more than 2,200 followers. 

On Twitter, join us for #ThyCaTalk each Tuesday through September. Our Tuesday #ThyCaTalk is fun and enlightening. Read more here. 

Our support of each other —whether giving or receiving —is an incredible gift. Thank you for joining us. 

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Let’s Rally Around Research!

It’s time to rally and we invite you to join the ThyCa Rally for Research.

Our grants are open to researchers worldwide. We’re proud to be in our 14th year of fundraising for research cures for all thyroid cancer.

Visit our Rally for Research page to find out how to help. 

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Please Join Us! 

No one should have to face a diagnosis of thyroid cancer alone. Your membership dues support ThyCa’s efforts to provide our free services and resources to survivors and their families around the world. 

Membership dues enable us to do many great things such as:

  • Expand our informative web site
  • Develop and assist local support groups
  • Provide a toll-free survivors’ helpline and the Person-To-Person Network
  • Develop and distribute handbooks and many more publications

Uou may join as a 1-year, 2-year, or lifetime member of ThyCa. Membership is open to anyone interested in thyroid cancer and supporting ThyCa’s efforts. To join, online or by mail, please visit our Membership page.

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It Only Takes One Minute 

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 possible our services and Thyroid Cancer Research Grants. 

It only takes a minute to make a donation online in support of ThyCa’s services and research funding (or you are welcome to donate by mail to ThyCa, P.O. Box 1102, Olney, MD 20830-1102). 

We thank you in advance for your support! 

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About ThyCa NEWS NOTES and ThyCa

Copyright (c) 2014 ThyCa: Thyroid Cancer Survivors’ Association, Inc. 

This newsletter and ThyCa’s many other services and thyroid cancer research grants are made possible through the generous contributions from our donors and volunteers. Thank you! We invite everyone’s contributions, either small or large, financial and service. Together we make a difference! 

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: Kristy F., Leah Guljord, Chuck H., Tom Mesenbring, Pat Paillard, Patricia Scott, Barb Statas, Linda W., 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.

FOR IMMEDIATE RELEASE

Free Tools and Tips are Available on www.thyca.org 

A new record total of 62,980 people will be diagnosed with thyroid cancer in 2014 in the United States, reports the nonprofit ThyCa: Thyroid Cancer Survivors’ Association, Inc. (“ThyCa”), sponsor of Thyroid Cancer Awareness Month. Thyroid cancer affects people of all ages, from children through seniors. 

September is Thyroid Cancer Awareness Month worldwide, and survivors, caregivers, friends, and organizations everywhere will be urging everyone to “Find It Early” through neck checks throughout the month of September, reports ThyCa. Thyroid cancer is now the ninth most common cancer in the United States and continues to increase rapidly in both women and men. Three of every four people diagnosed with thyroid cancer are women. 

Throughout the month of September, people in more than 100 countries around the world will participate in the annual international grassroots effort to: 

  • Raise awareness of the importance of early detection, treatment, and lifelong monitoring;
     
  • Inform the public about thyroid cancer and free support services and educational events with experts, including the 17th International Thyroid Cancer Survivors’ Conference on October 17-19, 2014, in Denver, Colorado;
     
  • Increase awareness of the need for more thyroid cancer research, highlighted this year by a 5k Run for awareness and research funding, Andrew’s Thyroid Cancer Triathlon for His Daddy, more grassroots events, and ThyCa’s year-round Rally for Research campaign. 

ThyCa initiated the annual awareness observance in 2000 and encourages people to ask for a neck check each time they visit their doctor.

“Signs to discuss with the physician include a lump or fullness in the neck, lymph node swelling, difficulty breathing or swallowing, or voice changes,” says ThyCa Executive Director Gary Bloom, himself a thyroid cancer survivor. “These are signs of a possible thyroid nodule. Most thyroid nodules are benign, but some are cancer. Health care professionals are essential to the detection of thyroid cancer.” 

ThyCa: Thyroid Cancer Survivors’ Association, Inc. a nonprofit organization founded in 1995 and advised by 47 thyroid cancer specialists, provides free support services, publications, and many more resources to thyroid cancer survivors and their families around the world. ThyCa currently serves people in 115 countries. 

ThyCa provides free handbooks, patient information packets, a weekly bulletin and newsletter, 12 online support groups, and more than 110 local support groups in the United States, Australia, Canada, Colombia, Costa Rica, and Philippines, as well as free webinars, seminars, and regional workshops. Its web site (www.thyca.org) has more than 800 pages of thyroid cancer information, receives review from more than 50 thyroid cancer specialists, and provides free downloadable materials in English, Chinese, French, Japanese, and Spanish. 

The annual International Thyroid Cancer Survivors’ Conference, also sponsored by ThyCa, will take place this year in Denver, Colorado, on October 17-19, 2014, with more than 100 sessions and more than 40 speakers. ThyCa also sponsors thyroid cancer research fundraising and has awarded research grants since 2003, open to researchers and institutions worldwide. 

For free materials and information, call toll-free 877-588-7904, write to ThyCa at PO Box 1545, New York, NY 10159-1545, e-mail to thyca@thyca.org, or visit the web site at www.thyca.org. 

Contact: Cherry Wunderlich, 301-493-8810, cwunderlich@thyca.org, 
Director of Publications and Outreach, ThyCa: Thyroid Cancer Survivors’ Association, Inc.
Founder and Sponsor of Thyroid Cancer Awareness Month