Thyroid Cancer Awareness Month Highlights Neck Checks, Free Education and Support, Special Events

For immediate release, August 31, 2015
Media contact:  Cherry Wunderlich, 301-493-8810, cwunderlich@thyca.org

Free graphics and handouts are available on our website.

While thyroid cancer is usually treatable if found early, some types and variants are aggressive and difficult to treat. In addition, people of all ages from children through seniors can get the disease, and patients need lifelong daily medication and periodic testing following treatment. These are some of many reasons why ThyCa: Thyroid Cancer Survivors’ Association, Inc. sponsors Thyroid Cancer Awareness Month each September, worldwide. 

A total of 62,450 people will be diagnosed with thyroid cancer in 2015 in the United States, and hundreds of thousands worldwide. Throughout Thyroid Cancer Awareness Month, survivors, caregivers, and friends in more than 100 countries, together with collaborating organizations, will be urging everyone to: 

  • “Find It Early” through neck checks and expert follow-up;
  • Help patients find a wide array of free resources and events, including online support groups, local support groups in 9 countries, and the 18th International Thyroid Cancer Survivors’ Conference on October 2-4, 2015, in St. Louis, Missouri;
  • Underscore the urgent need for more research for new treatments and cures for all thyroid cancer.

ThyCa encourages everyone to ask for a neck check when they visit their doctor. A neck check can be done quickly.

“Awareness of our necks is essential, and so is a neck check by a healthcare professional to find small nodules,” says ThyCa Executive Director Gary Bloom, himself a thyroid cancer survivor. “This can be done very quickly and doesn’t require any special equipment, but that minute could make all the difference in the world when it comes to diagnosing thyroid cancer. Most thyroid cancer is treatable if found early, but some types are very aggressive and difficult to treat.” 

This year marks the 15th anniversary of Thyroid Cancer Awareness Month. Among the activities already organized: 

  • In New York City, Free Walk-in Thyroid Cancer Screenings are being provided on September 10, 2015, from 11 a.m. to 2 p.m. at Mount Sinai Hospital, Guggenheim Pavilion-Atrium, 1468 Madison Avenue (at 100th Street), New York, NY 10029, by the Department of Otolaryngology. 
  • In Illinois, Iowa, Missouri, and Pennsylvania, Free Thyroid Cancer Seminars are being sponsored by local ThyCa Support Groups on September 1, 8, and 15. 
  • In Incline Village, Nevada on September 6, the Butterfly Effect 5K Benefit is being held by the Movement of Wings to raise funds for ThyCa. There will be a neck check booth available at this event. 
  • In Philadelphia, Pennsylvania, Yolanda Roberts is presenting a Thyroid Cancer Awareness Display at the Saint Charles Senior Center 
  • Around the world, patients, caregivers, and friends are giving out materials from ThyCa to their friends and family, as well as people in their workplaces, and community. 
  • In Dallas, Texas, seven physicians will speak at the Free Thyroid Cancer Patient Education Day on September 26 from 1 p.m. to 5 p.m., hosted by the Endocrine Surgery Committee of American Academy of Otolaryngology-Head and Neck Surgery. 
  • Worldwide, social media and e-mail campaigns will highlight thyroid cancer awareness and action. 

ThyCa: Thyroid Cancer Survivors’ Association, Inc. distributes free flyers, graphic images, and more during September as well as year-round. Founded in 1995, ThyCa is advised by 47 thyroid cancer specialists, provides free services for people with every type of thyroid cancer (papillary, follicular, medullary, anaplastic, and variants), materials in 8 languages, videos and webinars, the annual international conference, a weekly newsletter distributed to more than 65,000 people, and thyroid cancer research grants open to researchers and institutions worldwide. 

For free materials, information, and connections to support groups and events, visit our website or call toll-free 877-588-7904, write to ThyCa at PO Box 1545, New York, NY 10159-1545, or e-mail to thyca@thyca.org.

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Released by: ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Web site: www.thyca.org

Address: ThyCa: Thyroid Cancer Survivors’ Association, Inc., PO Box 1545, New York, NY 10159-1545, Toll-Free Number: 877-588-7904, Fax: 630-604-6078

E-mail: thyca@thyca.org

 

August 27, 2015—ThyCa: Thyroid Cancer Survivors’ Association, Inc., is pleased to announce the publication of the 8th Edition of its Free Downloadable Low Iodine Cookbook. 

The cookbook has been expanded from the 7th edition and presents more than 420 recipes. These include soups, salads, dips, vegetables, meat dishes, breakfasts, snacks, breads, desserts, and more, plus dozens of helpful tips from thyroid cancer survivors, and guidelines on the low-iodine diet plus background information from ThyCa medical advisors and research dietitians. 

The free cookbook is used by many thousands of patients and their families each year when using the short-term low-iodine diet while preparing to receive radioactive iodine for a treatment or RAI scan for papillary or follicular thyroid cancer or their variants. 

ThyCa thanks the more than 220 volunteers who shared their favorite recipes, and the many volunteers who shared many helpful tips for making the diet easier. ThyCa invites contributions of original recipes to recipes@thyca.org. 

The cookbook is downloadable from ThyCa’s home page. It will soon also be available as an ePub on iTunes and GooglePlay, and in its print edition. 

July 27, 2015 — AstraZeneca announced that it has entered into a definitive agreement with Genzyme to sell and transfer CAPRELSA®, indicated for the treatment of symptomatic or progressive medullary thyroid cancer in patients who have non-operable locally advanced or metastatic disease. 

Genzyme’s acquisition will ensure that CAPRELSA® continues to be available for patients and benefits from further development by Genzyme as a company focused on rare diseases. 

AstraZeneca is committed to ensuring that patients continue to receive treatment throughout this transition. There will be no interruption in current and pending access to the drug. 

AstraZeneca continues to have ongoing research programs in thyroid cancers. 

Patients with questions about this transfer may contact the AstraZeneca Information Center by phone at 1-800-236-9933 (Monday – Friday 8 a.m. – 6 p.m. ET, excluding holidays). 

In This Issue:

LenvimaTM Approved in Japan and Fast-Tracked in Europe 

LenvimaTM (lenvatinibmesylate) has been approved in Japan to treat patients with progressive, differentiated thyroid cancer (DTC, including papillary, follicular, and variants) whose disease progressed despite receiving radioactive iodine therapy(radioactive iodine refractory disease).  

In addition, the European Medicines Agency (EMA) is recommending that LenvimaTM be available across Europe for the treatment of some patients with thyroid cancer, following a fast-track assessment. 

Previously, the U.S. FDA approved LenvimaTM for use in the United States. Click here for more details.

LenvimaTM is a kinase inhibitor, which works by blocking certain proteins from helping cancer cells grow and divide. LenvimaTM is marketed by Eisai Inc. 

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New Guidelines for Pediatric Differentiated Thyroid Cancer and for Medullary Thyroid Cancer Issued by ATA 

The American Thyroid Association (ATA) has issued two new sets of physician guidelines. One is for the management of Thyroid Nodules and Pediatric Differentiated Thyroid Cancer. The other is the ATA’s updated guidelines for Medullary Thyroid Cancer.

Gary L. Francis, M.D., Ph.D., chaired the pediatric guidelines task force. Steven G. Waguespack, M.D., and Andrew J. Bauer, M.D., were the co-chairs. Drs. Francis, Waguespack, and Bauer are ThyCa Medical Advisors. The task force included specialists from seven countries: Brazil, Canada, Germany, Israel, Italy, Japan, and United States. 

Samuel Wells, M.D. chaired the medullary guidelines task force. Dr. Wells and five additional members of the guidelines task force are ThyCa Medical Advisors. 

ThyCa provided unrestricted educational grants in support of these guidelines projects. We are very pleased to support the development of all thyroid cancer guidelines.

ThyCa also mails copies of the guidelines on request. For these, plus other thyroid cancer treatment guidelines developed by thyroid cancer experts, visit the Physician Guidelines page of our web site.

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Learning from the Outliers—the Exceptional Responders 

Why do some patients improve when the clinical trial they’re in fails? The National Cancer Institute recently launched the Exceptional Responders Initiative to help find out. 

A recent article in The Scientist magazine references a study to test a drug on thyroid cancer patients. The lead researcher was Jochen H Lorch, M.D., M.Sc. of Dana Farber/Harvard Cancer Center in Boston, Massachusetts. Dr. Lorch was a speaker at a ThyCa Conference. 

Click here to learn more about this study and exceptional responders. 

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TSH Recommendations Change for Low-Risk Patients with Differentiated Thyroid Cancer

“We have evolved our thought process to suppressing people much less frequently for a shorter period of time and with less medication,” said Laura Boucai, MD, an endocrinologist at Memorial Sloan-Kettering Cancer Center and senior author of a new study on TSH suppression in patients with differentiated thyroid cancer (papillary and follicular). 

The study found higher risk of osteoporosis but no benefit in reducing recurrence of the cancer in patients who were at low risk of recurrence. 

In the same article in Medscape Medical News, David Cooper, M.D., of Johns Hopkins University School of Medicine and chair of the 2009 American Thyroid Association guidelines, reported that the ATA guidelines to be released later this year will advise that there be no post-thyroidectomy TSH suppression in low-risk patients. 

Click here for more about this study.

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In Memory of Rob Bohning 

ThyCa is very saddened by the loss of our dear friend, Rob Bohning. Rob died March 16, 2015, after living life to the fullest while dealing with stage IV medullary thyroid cancer. 

Rob touched many people in his thyroid cancer journey. He attended his first ThyCa conference in Los Angeles in 2011, just days after his initial surgery and diagnosis. 

We were impressed by his strength, inspired by his endurance, and grateful for and comforted by his caring for others going through similar experiences. Regardless of his personal struggles, he still reached out to share his encouragement with others. 

Rob was a gifted nature photographer, and his donated canvases for the ThyCa Dinner Auction were highly sought after. Before his health became too compromised, Rob founded 4th Stage Cycling to encourage people to donate funds to thyroid cancer research and he amazed us with his 50+/100+ mile bike rides. 

Rob’s family was his strongest support, and his son, Andrew, ran his first triathlon at 8 years old in Summer 2014 and raised over $7,000 for ThyCa’s thyroid cancer research funds. 

We express our deepest condolences to his wife, Lori, and their two young children, Olivia and Andrew. 

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Thank You, Donna! 

Donna Sherman’s Yoga and More afternoon was a big success, raising thyroid cancer awareness and funds for ThyCa.

Donna writes: 

“The event was a success with a filled yoga studio. I understand that some people who could not attend sent donations to ThyCa via the web site. 

“I had so much fun both organizing and running this event, so much so that I may have to do more! What you can’t see from the photos are the (fake and temporary) butterfly tattoos that I handed out and many participants were wearing; and the gorgeous flowers and sunlight that adorned the studio. 

“What a wonderful day! I gave out small blue, purple and pinkish bottles with the blue ThyCa awareness bracelets in them. 

“There was a time in my life when I believed that one had to ‘think big’ to initiate positive change. While in some cases that may be true, I’ve come to see the benefit of acting locally, and taking small, steady, and sustaining steps. 

“I have a feeling that our thyroid cancer community is showing the world that we are indeed powerful butterflies, capable of negotiating challenges with grace and strength!”  

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A Support Group Mascot 

ThyCa Orange County, which meets at Hoag Hospital in Newport Beach, California, has a licensed Therapy Dog mascot! In this photo from the group’s March meeting, Simka was placed on the table for the benefit of the group photo (it’s not her regular spot!). Simka is certified through Therapy Dogs International, and is a joyful addition to the group.

Facilitators of the Orange County group are Shilo Bartlett, Anne MacPherson, and Ray Bartlett. Visit this page for more information.

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Letter from Australia: Rachael’s Story 
by Rachael Featherstone of Canberra, Australia 

I was 18 years old when my mother noticed a lump on the side of my neck. So, two weeks before I was supposed to go overseas to volunteer in Peru, I had a cautionary biopsy to make sure it was nothing. 

Two days after my grandmother passed away from lung and bone cancer, I was diagnosed with metastatic papillary thyroid cancer. I quickly became known as the “girl who couldn’t go to Peru because she got cancer”! 

The whole process was so quick, with the decision to cancel my trip to have surgery made for me, despite the fact that I was so scared and confused. 

I felt fine, how could I have cancer? Through the support of my family, my friends and ThyCa: Thyroid Cancer Survivors’ Association, I slowly became more confident with my diagnosis. Admittedly I did become a bit of a hypochondriac, checking the online forum every time I felt a little off! 

I was lucky to be able to study whilst going through treatment (including working on major assignments during my radioactive iodine treatment!) but not without consequences. I scraped through my year suffering from anxiety, and the fear of the doctors finding more cancer. 

I have now been officially cancer free for a year now! Not that I’m completely fine; I still suffer from aches and side effects. 

I’m now spending my time making the most of life, studying Science Communication so I can help the world understand what it means to have cancer. 

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Experts To Present Free Seminars in Numerous States and Online 

Free seminars are coming in April and throughout the year. Visit our Calendar of Thyroid Cancer Events for details about these events, and more. 

This handy page is linked on our Home Page. 

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My Story 
By Jill Paris of Ontario, Canada

I had just delivered my beautiful baby daughter when only a few days later I discovered a huge lump in my neck while having a shower. This was February 2012. I was 35 years old. With a girlfriend who had discovered a lump the year previous, I was stunned that I had one as well.  (Thankfully – my girlfriend’s lump was benign — hallelujah!) 

My fear quickly set in, but life was very busy with a 4.5-year-old son and newborn daughter.  I did not have time to stop or time to think about what was going on.  

I remained positive, as I do with most of life and carried on the best way I know how. That year was a flurry of necessary appointments, biopsies, tests and ultrasounds where they discovered this lump on one side was quite large, 80% malignant, and numerous other nodules were found on the other side. Surgery was set for a complete thyroidectomy with RAI treatment to follow a few months later.  

Right from the beginning I received a positive prognosis and with determination, positive outlook, and an insanely supportive group, I knew I would make it through just fine. 

I am proud to say that I am 2 years cancer-free and continue to live a healthy, positive, fun-filled life.   

When people call Thyroid Cancer the “good cancer” or say, “If you’re going to get one, this is the one to get,” it is very discouraging. I get it.  We get it.  There are worse types and situations with thyroid cancer than mine, and other worse situations out there.  I have personally lost (as so many have) loved ones to cancer.  But to diminish what the “c” word means to someone and how it can affect them is disappointing.  

I know I am extremely lucky.  I know I didn’t do anything to get this.  I know that I am also reminded every morning when I take my thyroid medication, have bloodwork, or feel a little off some days.  I know that I am also worried to EVER find another lump EVER again.  Will that be the one I don’t beat?  Was this a wake-up call?  Any brush with cancer is a scary one and I am well aware of how fortunate I am. 

My husband, parents, and children, as well as friends and neighbours all helped get me through.  Their support was endless, fearless, and never wavered.  The ThyCa website was a fountain of knowledge, and offered support and tons of information.

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Early-Bird Registration Now Open for the Conference! 

We’re lining up a terrific program for the 18th International Thyroid Cancer Survivors’ Conference, October 2-4 in St. Louis, Missouri. 

If you haven’t attended the conference before, scroll down on the Conference page to get an idea of the great range of experts, topics, and opportunities to meet and share experiences with others coping with all types and situations with thyroid cancer. 

Early-bird registration is now open, both online and by mail. As always, scholarships are available on request to cover the registration fee. 

Visit our Conferences page to register and to get the latest updates. We’ll keep adding information, from now to the start of the conference. Hope to see you at the Conference! 

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ThyCa’s 20th Anniversary—You’re Invited To Help

For more ways to help, visit our How to Help page.

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My Story 
By Isabella Prida of California

My name is Isabella Prida and I am a thyroid cancer survivor. When I was 12, my pediatrician discovered a small, benign tumor on the right side of my thyroid…. My mother is a three-time cancer survivor, so monitoring my tumor was crucial. 

Everything was normal during check-ups until the check-up I had at 15. The tumor had grown a significant amount, became malignant, and during my surgery the physician found out my cancer had spread to neighboring lymph nodes. 

After having a thyroidectomy and radioactive iodine treatment, it is great to say that I am five years cancer free. It was a long and hard battle, and it’s a huge part of my life now. Every morning I wake up and take my levothyroxine and live my life just as any “normal” 21-year-old does. 

I took my cancer journey as an opportunity to help others.  Between volunteering at hospitals, writing for a few non-profit organizations, and attending college, I give speaking engagements across the U.S. and Latin America. In my Hispanic community there is not a lot of awareness about cancer in young adults and I am doing my best to improve that. 

As a cancer survivor I feel it is my duty and privilege to turn my adversity into opportunity to help fellow fighters and survivors. 

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Jennifer Begins a New Hike  

On Saturday, April 25, Jennifer Smart, thyroid cancer survivor, begins her Continental Divide Trail hike to raise thyroid cancer awareness and funds for ThyCa. 

In 2013, Jennifer raised awareness and funds for ThyCa by thru-hiking the 2,650-mile Pacific Crest Trail.

Visit our Rally for Research page to learn more about Jennifer, her new hike, her 2013 hike, and how you can support her efforts. 100% of donations received go to ThyCa: Thyroid Cancer Survivors’ Association, Inc. 

Congratulations and thank you, Jennifer! 

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Low-Iodine Recipe of the Month
Contributed by Carole

Slow Cooker Latin Chicken 

3-4 boneless, skinless chicken breasts
1/4 cup loosely packed cilantro leaves
2 large sweet potatoes, cubed
1 Red bell pepper cut into strips
1  15 ounce can beans (black or other), rinsed and drained
1/2 cup chicken broth
1 cup hot salsa
2 teaspoons cumin
1/2 teaspoon allspice
3 cloves garlic chopped
Lime wedges for garnish

Arrange chicken in bottom of slow cooker. Place potatoes, pepper, and beans on top.  

Mix together broth, cilantro, salsa, cumin, allspice, and garlic in a bowl.  Pour in cooker.  

Cook on low for 4 hours.  Serve with lime garnish. 

Thank you, Carole! We will include this 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

Joining together in our online groups, through our webinars and videos, or face-to-face in our support groups, workshops, and conferences is empowering. 

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

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

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Your Donations Make a Difference

Thanks to your generous donations to ThyCa, we are able to fund — 

  • 47 thyroid cancer research grants totaling more than $1.3 million, with more grants to be awarded in 2015 
  • Dozens of free educational publications in 7 languages, shipped on request to individuals and in bulk to doctor’s offices, around the world 
  • Free year-round support online, by phone, and in-person, both group and 1-to-1 
  • This informative Weekly Bulletin, our web site, videos, webinars, and more

 We invite you to make a donation to help others who are coping with thyroid cancer and its many challenges.
 

Click here to donate. 

Thank you!  

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About this Newsletter and ThyCa 

Copyright (c) 2015 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! 

Thank you to our writing, editing, and proofreading team for this issue: Carole, Lisa Cole, Kristy F., Rachael Featherstone, Leah Guljord, Pat Paillard, Jill Paris, Isabella Prida, Barb Statas, Theresa Wickerham, Cherry Wunderlich, and Gary Bloom. 

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. 

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, or visit our website.  

July 1, 2015—ThyCa: Thyroid Cancer Survivors’ Association, Inc. is proud to announce it has awarded seven grants for thyroid cancer research into complex aspects of all types of thyroid cancer: papillary, follicular, medullary, and anaplastic thyroid cancer. 

New ThyCa grants were awarded to physician researchers at Massachusetts General Hospital/Harvard Medical School, Boston, Massachusetts; University of Texas Southwestern, Dallas, Texas; Phoenix VA Health Care System, Phoenix, Arizona; and National University of Cordoba, Cordoba, Argentina. 

In addition, ThyCa second-year grants were awarded to researchers at Johns Hopkins Medical Institutions, Baltimore, Maryland; University of Texas M.D. Anderson Center, Houston, Texas; and Memorial Sloan-Kettering Cancer Center, New York, New York. 

This is the 13th consecutive year of ThyCa research grants. The grants are all funded through donations to ThyCa from thyroid cancer patients, family members, and friends. ThyCa grants are open to researchers and institutions worldwide. An independent expert panel of the American Thyroid Association (ATA) reviewed applications and selected the recipients.

  • Carrie Lubitz, M.D., M.P.H., Assistant Professor of Surgery at Massachusetts General Hospital/Harvard Medical School, is the recipient of the 2015 Ric Blake Memorial Thyroid Cancer Research Grant, named for ThyCa Co-Founder Ric Blake. Dr. Lubitz’s research is examining the clinical utility and cost-effectiveness of a novel blood-based assay for circulating BRAFV600E mutation in patients with papillary thyroid cancer, in order to enhance risk stratification, and identify patients who are likely to benefit from more aggressive interventions, and enable more targeted and efficient care. 
      
    Dr. Lubitz completed her medical training at the University of Michigan Medical School, followed by further training at Weill-Cornell Medical College, and through the National Cancer Institute-sponsored Program in Cancer Outcomes Research Training, as well as earning her Master’s Degree in Public Health at the Harvard School of Public Health.  
  • Sarah Oltmann, M.D., is the recipient of a 2015 grant for Medullary Thyroid Cancer Research. Her project will examine cancer progression and therapeutic response in a unique mouse model, with emphasis on increasing understanding of the natural history of metastatic disease and responses to treatment with tyrosine kinase inhibitors.
       
    Dr. Oltmann is director of endocrine surgery at University of Texas Southwestern in Dallas, Texas. She earned her medical degree at Texas Tech University Health Science Center, with further training at the University of Texas Southwestern Medical Center and University of Wisconsin.
       
  • Ming Li, M.D., Ph.D., is awarded a grant for the project titled “Studying the Genetic Basis of Advanced Differentiated Thyroid Cancer by Forward Genetics Screening with Thyroid-specific Random Transposon Insertional Mutagenesis.”
       
    Dr. Ming Li completed his medical training at Beijing Medical University, Beijing, China, earned his Ph.D. at Baylor College of Medicine, and received further medical training at the University of Minnesota. He is now staff physician and assistant professor at the Phoenix VA Healthcare System, where his focus is thyroid cancer.
  • Juan Nicola, Ph.D., National University of Cordoba, Cordoba, Argentina, is receiving a grant for his research on “Uncovering Na+/I– Symporter (NIS) interacting proteins: Implications for radioiodide therapy efficiency and diagnosis of radioiodide-avid thyroid tumors.”  
       
    Dr. Nicola earned his Ph.D. at National University of Córdoba, Cordoba, Argentina, and received the Latin American Thyroid Society young investigator award. He received postdoctoral training at Yale School of Medicine in New Haven Connecticut and then returned to the National University of Córdoba, where he is Research Assistant Professor.  

The ThyCa continuation grants for 2015 are for a second year of a two year grant originally awarded in 2014 and are awarded to these researchers: 

  • Elizabeth G. Grubbs, M.D., M.S., The University of Texas M. D. Anderson Cancer Center, Houston, Texas, for the project titled “Fusion Oncogenes as Drivers of Medullary Thyroid Cancer.” This project focuses on the role of RET fusion in MTC tumorigenesis, with the overall goal of showing that this gene rearrangement may predict biological behavior in MTC and that this pathway may be a viable target to (1) predict responses to targeted MTC therapy, (2) better stratify MTC patient outcomes and, for non-RET driven tumors, and (3) potentially offer a more rational approach to individualization of therapy.  
        
  • Jason D. Prescott, M.D., Ph.D., The Johns Hopkins University School of Medicine, Baltimore, Maryland for the project “Development of a High Throughput in vivo Screening System for Small Molecule Activators of Thyroid Differentiation: Identification and Targeting of New Molecular Pathways Involved Thyroid Cancer Progression.” This project focuses on (1) identifying new molecular pathways and mechanisms contributing to aggressive thyroid cancer and progression involving the BRAF protooncogene and (2) assessing compounds in a large drug library for their anti-thyroid tumor activity and their molecular actions. 
        
  • Brian R. Untch, M.D., Memorial Sloan Kettering Cancer Center, New York, New York, for the project titled “Mechanisms of response and resistance to farnesyltransferase inhibition in HRAS-driven thyroid tumors.” Dr. Untch notes that HRAS mutations are the second most common type of RAS mutation found in thyroid cancer and can be found in different types of cancer. Building on prior research with poorly differentiated and anaplastic thyroid cancer, the study explores a class of drugs that are preferentially active against HRAS as compared to other mutations, to explore the mechanisms of adaptive and acquired resistance to a drug targeted against RAS in vitro and in vivo in a genetically accurate model of cancer. Dr. Untch’s group is also developing clinical trials with these drugs specifically for HRAS-mutant disease. This grant is a Ric Blake Memorial Thyroid Cancer Research Grant.

“We’re extremely grateful to all our wonderful donors, whose generosity throughout the year makes possible our research grants,” said Gary Bloom, ThyCa Executive Director, who is a thyroid cancer survivor. “More research on thyroid cancer is urgently needed, because we need to understand the complexities of this disease to help everyone who has thyroid cancer as well as to pursue cures for all survivors.” 

ThyCa’s research fund funds welcome contributions of any size. Visit our Rally for Research page to find out more. 

 This year is ThyCa’s is 20th anniversary year of providing free services to thyroid cancer survivors, families, medical professionals, and the public. 

ThyCa sponsors a wide array of services and resources. These include thyroid cancer support groups in eight countries; one-to-one support available worldwide; educational events including seminars, workshops, webinars and videos with experts, and the annual International Thyroid Cancer Survivors’ Conference; dozens of free publications including the online newsletter plus handbooks on all types of thyroid cancer, a downloadable low-iodine cookbook, a patient information packet and thyroid cancer awareness materials; pediatric backpacks with information kits for children and teens with thyroid cancer and their families; and its educational web site with more than 800 pages in English, Chinese, Spanish, French, Italian, Russian, and Japanese. 

ThyCa receives guidance from its Medical Advisory Council of world-recognized experts in the field of thyroid cancer. ThyCa sponsors Thyroid Cancer Awareness Month in September, a worldwide observance, plus year-round awareness campaigns, as well as research funding and thyroid cancer research grants. Details are available on ThyCa’s website or by calling 1-877-588-7904 or e-mailing thyca@thyca.org. 

In this issue:

Thyroid Cancer Increases in All Races and Ethnicities

According to a retrospective review of data from 1992 to 2010, by David Goldenberg, M.D., and colleagues, of Penn State College of Medicine, thyroid cancer incidence has increased in individuals of all races and ethnicities. The study found the greatest increase among non-Hispanic whites.

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More Thyroid Cancer Statistics 

In addition to the latest news about thyroid cancer diagnoses and deaths, did you know: 

  • Thyroid cancer is the 9th most common cancer overall (women and men combined) in the United States. (Editor’s note: It has become the 5th most common cancer in women.)
  • People from children through seniors get diagnosed with thyroid cancer. 
  • The median age at diagnosis is 50. 
  • At diagnosis, 17% of people with thyroid cancer are age 34 or younger, 64% are ages 35-64, and 19% are 65 or older. 

(From SEER statistics, U.S. National Cancer Institute, 2007-2011)

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Diagnosing Thyroid Nodules When the FNA Is Indeterminate 

About 525,000 thyroid nodule fine needle aspiration (FNA) procedures are performed each year in the United States. Indeterminate (inconclusive) cytology diagnoses are common and represent approximately 15% to 30% of cases.

When the FNA is indeterminate, recently developed techniques can improve the ability of testing to correctly identify both benign and malignant nodules, potentially resulting in fewer unnecessary surgeries. 

A study presented at the recent annual meeting of The Endocrine Society described results of a combined gene expression and genotyping approach to more accurately diagnose and characterize thyroid nodules when the FNA result is indeterminate. 

Read more here.

One of the study authors, Thomas J. Giordano, M.D., Ph.D., Department of Pathology, University of Michigan, also spoke at ThyCa’s 2014 Conference. His presentation is available on ThyCa’s YouTube channel. 

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Dog Sniffs Out Thyroid Cancer 

Dogs have at least 10 times more smell receptors than humans. It’s these cells that give bloodhounds the ability to track, rescue dogs the ability to find people buried in rubble, and most recently, a German shepherd-mix the ability to smell the difference between urine samples of patients with and without thyroid cancer. 

Tests on 34 patients who had not yet been diagnosed showed an 88% success rate in finding thyroid cancer. While this type of testing is being done in research, discovering the chemicals the dogs can smell may lead to new tests. 

Aime Franco, Ph.D., and the thyroid cancer group at the University of Arkansas for Medical Sciences presented these results at the recent meeting of The Endocrine Society. The group is leading the efforts to try to identify the chemicals that the dogs are detecting. Dr. Franco is a past ThyCa Conference Speaker past ThyCa research grant recipient. She is also a thyroid cancer survivor. 

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Coping with Fatigue 

Fatigue is a common complaint, and as thyroid cancer survivors, we can often place some of the blame on thyroid hormone replacement therapy needing adjustment. 

But fatigue is a complaint even many of our friends and caregivers share. 

What helps you boost your energy and fight fatigue? 

Here are a few of the replies from ThyCa’s Facebook Friends, on March 16th: 

  • Eating well and exercising help me, but I think the best thing that has helped me is being aware of my limitations and not completely exhausting myself. When I push too hard I crash and then find it difficult to catch up. When I am aware of my need to rest or to stop and start again later I am much less fatigued. Also, stress. When I get anxious and stressed I have much more fatigue. – Ashley H. K. 
  • Eating well makes a tremendous difference in my energy level. Lots of fruit, eaten throughout the day helps maintain my energy level consistently. If I don’t, I feel a strong need to take a nap in the afternoon around 2 or 3 and I can hardly keep my eyes open past 9 p.m. – Heather M-F. 
  • It varies from day to day and I can’t seem to find one thing that helps but bad food choices definitely do me no good. – Marge V. 
  • Any change to my sleep, eating or meds schedule increases my fatigue, so I try to stick to my regular schedule as much as possible, and that seems to help. – Angie C. 
  • Decent food and exercise works magic. – John A. 
  • I have accepted that I need to listen to my body and rest when I feel tired. I’ve accepted its okay to take a nap in the afternoon and I have slowed down. I now allow myself to have ‘me time’. Of course diet and exercise helps. – Linda H. K. 
  • I make sure I get at LEAST 8 hours of sleep/rest (we all know sometimes insomnia is a common complaint as well). I also have an AMAZING support system with friends that understand that even though I want to hang out, sometimes all I have the energy for is company and Netflix. We also have changed our terminology, I got tired of saying “I’m tired” or “I’m exhausted”. So we gauge energy by “spoons”. I heard a story of a woman explaining the exhaustion of chronic illness with spoons and it has become a great way to express how much energy (how many spoons) I have without using those phrases we get so tired of using. – Amber S. 
  • 3 months post thyroidectomy and I’m realizing too that it changes daily and weekly. I meet with my doctor soon and hope my medicine can be adjusted. I exercise, eat well, drink lots of water, no soda, and try to take it easy on the weekends. I appreciate all of you and ThyCa for all the advice and support. – Natalie B. 
  • Try to keep busy and active. – Jerry P.

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Milestones in our 20th Anniversary Year! 

ThyCa began early in 1995 when Karen Ferguson reached out and began connecting thyroid cancer survivors with each other. They formed the world’s first online thyroid cancer support group. 

Today, we have more than 120 local support groups, 12 online support groups, dozens of free publications, Thyroid Cancer Awareness Month, and thyroid cancer research fundraising and research grants in support of our goal of cures for all thyroid cancer. 

You’re invited to help: 

For more ways to help, visit our How To Help page.

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Free Information Packets Go Around the World 

Patients, caregivers, and medical professionals around the world request individual and bulk quantities of our free Patient Information Packets, our free handbooks: Thyroid Cancer Basics, Anaplastic Thyroid Cancer, and Medullary Thyroid Cancer, Low-Iodine Cookbook, and awareness materials. 

We ship materials at no charge, both to individuals and in bulk to medical professionals to give to their patients. Our handbooks, cookbook, and flyers are also downloadable from our web site. The handbooks and Low-Iodine Cookbook are also available as ePubs from ITunes and GooglePlay. 

To request a single information packet, which contains Thyroid Cancer Basics, fill out our Guestbook form on our web site. 

If you’re a medical professional and would like to receive materials in bulk, use the request form in the Medical Professionals section of our web site. 

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New ThyCa Support Group Forms in Colorado: Now More Than 120 Groups in 8 Countries 

Welcome to the new support group in Colorado Springs!  Thank you to Kathy Melillo and Tiffany Koch for starting this group. 

Eight countries now have free local ThyCa support groups: 

United States, Australia, The Bahamas, Canada, Colombia, Costa Rica, The Philippines, and United Kingdom. 

The groups are free and open to any and all survivors and their families, students, and others interested in thyroid cancer. 

Each group has its own web page with meeting and contact details. 

You’re invited to get in touch, and to attend! To find all the groups, and the contact for help in starting a group, click here.  

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Yoga and More Is A Big Success! 

Thank you very much to Donna Sherman for your relaxing and wonderful afternoon of Yoga and More. Everyone attending had a great time, and your event raised awareness of thyroid cancer and more than $1,000 for ThyCa. 

We are most grateful to you, Dona, for your terrific outreach and support efforts. 

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Strokes for Hope Scramble, June 6, 2015 

Are you ready to swing your golf clubs after a long, cold and snowy winter?   

Well, spring has arrived here in Pennsylvania, and warmer weather will soon be here as well, as we get out on the golf course. Come support and promote thyroid cancer awareness and research while shooting a round of golf! 

The 3rd Annual Strokes for Hope Scramble is scheduled for Saturday, June 6, 2015 at the Grand View Golf Club in North Braddock, Pennsylvania.  A great day of golf, food and raising Thyroid Cancer Awareness is planned.  Proceeds will benefit ThyCa: Thyroid Cancer Survivors’ Association. 

Whether or not you can attend, you can support this great event! If you’d like to sign up for the golf scramble, please e-mail and reference “Strokes For Hope Scramble” in the subject line of the e-mail.  Registration and entry fees are due by May 23.  

Visit our Rally for Research page, for the flyer with details, for a donation link (and note that your donation is in honor of Strokes for Hope), and for more ways to support the Rally for Research. 

Thank you to Scott for your tremendous effort in again hosting this fun event! 

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Free Forum and Seminars in Missouri, New Jersey, New York, and Pennsylvania

  • March 7, Lafayette Hill, Pennsylvania, near Philadelphia. Free presentation about levothyroxine by David Burgoon, at the monthly meeting of ThyCa NW Philadelphia.
  • March 14: Reducing Cancer in Our Community. Lifestyle choices, pediatric cancer, and thyroid cancer will be the focus of a free public forum titled “Reducing Cancer in Our Community,” in Hershey, Pennsylvania, sponsored by Penn State Hershey Cancer Institute with the American Cancer Society.
  • March 21. St. Louis, Missouri. Erin Murphy, Healthy Living Coordinator from the YMCA of Greater St. Louis will be the guest speaker at the March meeting of the ThyCa St. Louis Support Group. 
  • April 6. Neptune, New Jersey. Free group discussion with endocrine surgeon Alexander Shifrin, M.D., from 6 p.m. to 7:30 p.m. at the meeting of the ThyCa Jersey Shore University Medical Center Support Group.
  • April 14. John Ingle, M.D., Otolaryngologist at the University of Rochester Medical Center in New York, will discuss how thyroid cancer can affect the patient’s voice and throat. Dr. Ingle will speak and answer questions at the meeting of ThyCa Rochester, New York Support Group.  

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Volunteer Raises Over $10,000 for Research

Thank you very much to Barbara Moseley, for your terrific fundraising efforts! The generous donations that you raised will provide more than $10,000 for ThyCa’s Medullary Thyroid Cancer Research Funding!

We asked Barb to share a little of her experience. She writes,

“I became motivated to fundraise for ThyCa after listening to Tina A, a thyroid cancer angel, explain how she wrote her friends and asked them each for a $1.00 donation in her honor.  I decided I could use Tina’s technique and connect with people in my life, including my friends, and work contacts of more than 35 years. I thought, I could do that, but I wouldn’t ask each person for a $1.00.  I decided to leave “the ask” wide open.  

“My first fundraiser in 2005, I raised more than $35,000! It was amazing! I did additional fundraisers in 2006, 2008, 2011 and then just recently in 2014 (another $10,000!).  I keep everyone informed when my son Henry goes for testing. I always ask people for their prayers and good thoughts.  When we get Henry’s results, I inform everyone on my list, whether the update is good or bad.  The personal touch is great.  At some point I do an e-mail/snail mail fundraiser.  This way my contacts are up-to-date with Henry’s status.  

“Most recently we were told no more surgeries. Consequently, the urgency has increased to find a drug treatment for a cure.  Once again, my friends and business associates have come through for Henry and all the other Meddies.  While I haven’t been able to raise the funds I did when the economy good, every donation helps.  

“Over the years I’ve raised more than $60,000.00 with all of these fundraisers! Helping Henry and the cause is such a great feeling. I encourage all of you to try it. Remember Tina’s way … ask everyone for $1. Good luck to all of us.”

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Follow Us 

Joining together in our online groups, through our webinars and videos, or face-to-face in our support groups, workshops, and conferences is empowering. 

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

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

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Thank You for Helping Others! 

Each time you share your story, hand out a thyroid cancer awareness flyer, or tell others about ThyCa’s free services, events, and publications, you’re helping another person cope with thyroid cancer. 

Thank you to everyone who has given out thyroid cancer awareness materials. We invite you to download free awareness flyers from our Raise Awareness page. 

Or send your mailing address to us at thyca@thyca.org and ask us to mail you free educational handbooks, brochures, neck check cards, and more. 

Please share these materials with friends and relatives, as well as thyroid cancer survivors you meet in your community, or with your doctors so that they can offer them to their patients. 

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Low-Iodine Recipe of the Month
Contributed by Elisa G.

Salad Dressing

1/2 medium onion, chopped fine
2/3 cup sugar (may substitute 16 packets of Truvia if needed)
1/4 cup celery chopped fine
1/3 cup vegetable oil
1/3 cup cider vinegar
1 1/4 teaspoon dry mustard
1/2 teaspoon pepper
1/2 teaspoon no-iodine salt

Whisk together in a bowl.  Keep in refrigerator and whisk often throughout the day. This dressing is better the day after it is made. It lasts in the refrigerator several days and makes a sweet addition to any salad.  

Thank you, Elisa! We will include this 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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Invitation: Become a Member

No one should have to face a diagnosis of thyroid cancer alone. 

Your membership dues will support ThyCa’s efforts to help 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 interested in thyroid cancer and supporting ThyCa’s efforts. 

To join, online or by mail, visit our Membership page.

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Get Involved 

This weekly bulletin and ThyCa’s many other free services, events, publications, and thyroid cancer research grants are made possible through the generous financial and service contributions of our donors and volunteers. Thank you! 

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

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Your Donations Make a Difference

Your donations to ThyCa make possible—

  • 47 thyroid cancer research grants totaling more than $1.3 million, with more grants to be awarded in 2015
  • Dozens of free educational publications in 7 languages, mailed on request to individuals and in bulk to doctor’s offices, around the world
  • Free year-round support online, by phone, and in-person, both group and 1-to-1
  • This informative Weekly Bulletin, our web site, videos, webinars, and more

 We invite you to make a donation to help others who are coping with thyroid cancer and its many challenges. 

Click here to donate. 

Thank you!

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About this Newsletter and ThyCa 

Copyright (c) 2015 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! 

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

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. 

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, or visit our website. 

We are honored and grateful to tell you that Andrew Bohning plans to repeat his Children’s Triathlon effort this year, to support ThyCa’s Medullary Thyroid Cancer Research Fund. 

Andrew will again take part in the Hill Country Triathlon in Kyle, Texas. 

Andrew’s goal for 2015 is to help “all the people who have daddy’s type of cancer.” 

Last year, while his father Rob Bohning was fighting Stage 4 Medullary Thyroid Cancer, eight-year-old Andrew swam, rode, and, ran in a Children’s Triathlon, raising nearly $7,000 for ThyCa’s Medullary Thyroid Cancer Research Fund.  

The whole family turned out to cheer Andrew on. 

We were deeply saddened that Rob Bohning passed away earlier this year. We will always remember his friendship and support. 

We invite you to donate in support of Andrew’s 2015 Triathlon and in memory of Rob. 

Click here to donate before, during, or after Andrew’s Triathlon. 

100% of all donations will go to ThyCa’s Medullary Thyroid Cancer (MTC) Research Fund to support research on MTC.  

Thank you very much for your support. 

   

Physicians from Johns Hopkins Medical Institutions, Georgetown Medical Center, and Washington Hospital Center headline the upcoming 14th Annual Mid-Atlantic Thyroid Cancer Workshop, sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.

This free educational event will be held on Saturday, May 2 from 8 a.m. to 5 p.m. in the True Auditorium at the Washington Hospital Center, 110 Irving Street Northwest, Washington, DC.

Patients, caregivers, friends, and everyone interested are invited to come and learn from experts and learn and share with other thyroid cancer survivors and families.

People are welcome to attend for all or part of the day. Walk-in attendees are welcome, or register online in advance.  Free parking vouchers will be provided to the first 100 people to arrive at the registration table.

Physician speakers include:

  • Nishant Agrawal, M.D., Surgeon, The Johns Hopkins Medical Institutions, Baltimore, MD
  • Jacqueline Jonklaas, M.D., Endocrinologist, MedStar Georgetown University Medical Center, Washington, DC
  • Kanchan P. Kulkarni, M.D., Nuclear Medicine Physician, MedStar Washington Hospital Center, Washington, DC 
  • Douglas Van Nostrand, M.D., Nuclear Medicine Physician, MedStar Washington Hospital Center, Washington, DC. ThyCa Medical Advisor

Host groups for this free event are the ThyCa Baltimore Support Group, ThyCa Northern Virginia Support Group, ThyCa Rockville Support Group, and ThyCa Washington, DC, Support Group.

Visit our Conferences page for details, including the workshop flyer and free online registration.

For more information, e-mail Washington_DC@thyca.org or thyca@thyca.org or phone 301-493-8810.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is an international nonprofit 501 (c)(3) organization of thyroid cancer survivors, family members, and health care professionals. For more information e-mail to:  thyca@thyca.org; write to:  PO Box 1102, Olney, MD 20830-1102; call toll-free:  1-877-588-7904; or visit ourwebsite.

We’re excited to announce that more than 50 informative videos are available on the ThyCa YouTube Channel. 

Distinguished thyroid cancer experts speak and answer questions about all thyroid cancer types, testing, treatment, long-term management, and research advances. 

The speakers include specialists in endocrinology, surgery, medical oncology, nuclear medicine, pathology, and molecular genetics. 

The speakers include 17 ThyCa Medical Advisors. In addition, patients and caregivers share their experiences in coping with the many challenges of thyroid cancer, and a cancer rights attorney discusses financial issues after a cancer diagnosis.  

Learn from experts at these centers, and more: 

  • Boston Eye and Ear Infirmary
  • Children’s Hospital of Philadelphia
  • Dana Farber Cancer Institute and Brigham and Women’s Hospital
  • Harvard Medical School and at Massachusetts General Hospital
  • Johns Hopkins Medical Institutions
  • Memorial Sloan-Kettering Cancer Center 
  • Moffitt Cancer Center
  • Mount Sinai Hospital in New York City 
  • National Cancer Institute
  • University of Colorado Health Sciences Center 
  • University of Michigan Medical School
  • University of Pennsylvania
  • University of Texas, M.D. Anderson Cancer Center 
  • Washington University in St. Louis School of Medicine

In This Issue:

 

Why You Should Stop Calling Thyroid Cancer ‘Good Cancer’ 

This is the title of an article by Anna Almendala, Huffington Post Healthy Living Editor, published on February 6, 2015, in the Huffington Post and already shared by more than 2,200 people through Facebook and Twitter. 

She interviewed Gary Bloom, thyroid cancer survivor, ThyCa Co-Founder, and Executive Director, and Alan Ho, M.D., Ph.D., medical oncologist at Memorial Sloan Kettering Cancer Center. 

Earlier, hundreds of thyroid cancer survivors had challenged a cancer survivor’s column in the Huffington Post expressing the opinion that thyroid cancer is an easy cancer to have. They made clear how difficult a thyroid cancer journey can be, and fatal for some. 

“Especially for this disease, the survival numbers don’t really tell the entire story about what patients have to go through,” said Dr. Ho. He explained some of the “true hardships and costs” that patients experience. 

“We don’t see cancer as a competition from disease to disease,” said Gary Bloom. “The only competition we would see is against the disease — all of us as survivors are trying to live.”

Read the complete article.

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No Cancer Is Easy!

 We believe that no cancer is a good cancer. We want there to be early detection and cures for all. 

Thank you also to everyone who has given out thyroid cancer awareness materials. We invite you to download free awareness flyers from our Raise Awareness page. 

These free flyers include: 

  • Thyroid Cancer Is Not a “Good” Cancer
  • Top Ten Things To Know about Thyroid Cancer 

Or send your mailing address to us at thyca@thyca.org and ask us to mail you free educational handbooks, brochures, neck check cards, and more. 

Please share these materials with thyroid cancer survivors you meet in your community or with your doctors so that they can offer them to their patients.

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Spreading the Word: More than 2,500 Have Shared the Huffington Post Article on Facebook and Twitter

Thank you to everyone who has already shared the informative article titled “Why You Should Stop Calling Thyroid Cancer ‘Good Cancer’.” 

You’re invited to tell others about it, too. 

Read and share this important article. 

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Comments from Thyroid Cancer Survivors 

From a Letter from Sherry W. 

There is a huge misconception that Thyroid Cancer is a “Good Cancer” to have if you were to get cancer in the first place. I will admit that even I was a bit guilty of that at first. 

When I was first married, I beat the early stages of cervical cancer. When I got diagnosed with Thyroid Cancer 15 years later – I didn’t want to be a pain or worry to any of my family members …as a young, active Mom of twin girls, I figured – let’s just cut this out and get on with my life. 

Little did I know almost 4 years ago; what a roller coaster ride I would have. The cancer was everywhere and had obviously escaped encapsulation. This apparently quick and “easy surgery” … turned into a neck dissection. I had a damaged vocal cord and cancer around my left vocal cord. At another center, the surgeon had to remove the remaining vocal cord. I was in the hospital for 11 days. I had to learn to manage my trach and suction…and to swallow and eat again. 

Even through all this, my team was amazed at my sense of humor and positive outlook. Long story short, I am now trach free (after having it for 15 months) but live with vocal cord paralysis, and severe obstructive breathing condition, which means my days of doing the things I loved are gone.  I now have to get dental cleanings every 3 months due to dry mouth and salivary gland damage due to the high dosage of Radioactive Iodine. 

My cancer is still with me. I have an aggressive and rare type. I will be closely monitored! 

I’ve lost a lot because of this cancer, but never my will to fight, educate, advocate and add a splash of humor. I AM a warrior and WILL be a cancer survivor once again! 

(Editor’s Note: ThyCa encourages all thyroid cancer survivors to work closely with your treatment plan to development an appropriate short-term and long-term management plan. For many of us, that means lifetime monitoring.) 

From a Blog Post by Sarah Boston, D.V.M. 

Sarah Boston is a thyroid cancer survivor and veterinarian in Florida. These are excerpted from her post on www.drsarahboston.com with her permission. 

Most thyroid cancer survivors have struggled with the perception, both internally and externally, that thyroid cancer is easy cancer. The first thing that most people say when you tell them that you have thyroid cancer is, “That’s good cancer, right?” [or “If you had to get cancer, it’s the one to get.”] 

The majority of people with thyroid cancer have a curable form of cancer. This is partly because most forms of thyroid cancer are slow moving and also because of science… 

Having said that, not all forms of thyroid cancer are [easily managed], not all are curable, and not having a thyroid gland is a real challenge sometimes … many are silently struggling with fatigue and the possibility of recurrence. Some people actually die from thyroid cancer. 

The people that are struggling with recurrence and metastatic disease from thyroid cancer deserve respect and support. Please do not marginalize them. 

More Patients Write… 

Here are a few of the comments by patients in ThyCa’s Facebook and Inspire communities, and through an article shared with ThyCa, in response to the Huffington Post article suggesting that thyroid cancer is easy to have. 

  • I had many people tell me it was “the good cancer,” while others basically dismissed it as not even being a cancer. But for me and my family, the illness was both significant and real. The surgery, treatment and follow-up affected all of us. – Melissa G. S. 
  • I often avoid talking about it because I feel like people think I’m playing up the effects it had (and still has) in me because it’s the “good” one. – Beth D. H. 
  • …this is not only something we live with forever but it affects us daily. 11 years later, and yes, I too still get anxious every time I see my doc! – Vanessa G.
  • Every single day is a struggle. – Jill G. 
  • Yes cancer in any form is not good but I think the doctors are just trying to allay any fears. I was diagnosed with papillary thyroid cancer last year and had my thyroid removed. So far everything is good. – Jerry P. 
  • Rare forms of thyroid cancer can actually be among the most deadly of all cancers. We totally underestimated thyroid cancer until my dad died from anaplastic thyroid cancer, which is almost always fatal. – Ashley F. 
  • I was diagnosed in late November. Had a TT in early January. I’m now awaiting RAI. I had a lot of support here early on with a post I wrote about lack of support at home. This site [ThyCa Inspire Online Support Community] has made this experience a whole lot easier. – G. 
  • I’m one of the lucky ones who has had a relatively easy time of it. – A.K. 
  • I appear to be a normal, healthy woman but it’s always on my mind. I was diagnosed 4 1/2 years ago and just had a recurrence in the fall. I have side effects to the meds too as mentioned in the article. People do forget we are dealing with cancer. – Kathleen O. R. 

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A Physician Comments…
by Ernest L. Mazzaferri, M.D.

(Editor’s Note: Dr. Mazzaferri was a thyroid cancer specialist, past president of the American Thyroid Association, and longtime ThyCa medical advisor. He spoke at many ThyCa conferences. We’re saddened to say that Dr. Mazzaferri passed away in 2013. His comments below are excerpted from the Foreword to the reference book Thyroid Cancer: A Guide for Patients. It is reprinted with permission from the publisher.) 

When you hear that you have cancer, your world starts spinning, not for a moment or two, but for what feels like an eternity. 

Then in a short time, it often comes crashing down around you, as well as upon those who love you and care for you, leaving you depressed, frightened, and in deep anguish… 

After you think about this for more than a heart beat the question is always, “How do I deal with this bad news right now?” The answer is astonishingly simple for most people. You need reliable information about your problem. 

This is not to mean a pat on the head and the trite words, “Don’t worry, this is a good cancer.” 

It always breaks my heart to hear this. There is no good cancer – at least not according to any patient or family that I ever met. If it’s your cancer, how on earth can it be “good”? 

(Read the complete foreword, plus more book excerpts.

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Video: Living With Thyroid Cancer: There Is No Such Thing as a Good Cancer 

Thyroid cancer patients in ThyCa’s support communities speak out in this new video from Vital Options.

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FDA Approves Lenvima (lenvatinib) for RAI-refractory Progressive Differentiated Thyroid Cancer 

February 13, 2015— The U.S. Food and Drug Administration today granted approval to LenvimaTM (lenvatinib) to treat patients with progressive, differentiated thyroid cancer (DTC, including papillary, follicular, and variants) whose disease progressed despite receiving radioactive iodine therapy (radioactive iodine refractory disease). 

Lenvima is a kinase inhibitor, which works by blocking certain proteins from helping cancer cells grow and divide. Lenvima is marketed by Eisai Inc. 

Read more here. 

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Key Questions about Rare Diseases: A TwitterChat 

Many thyroid cancer types are rare and difficult to treat — anaplastic thyroid cancer, medullary thyroid cancer, and variants of papillary and follicular thyroid cancer. 

On Tuesday, February 17, the National Organization for Rare Disorders (NORD) hosted a live TwitterChat in connection with worldwide Rare Diseases Day that takes place on February 28. 

ThyCa volunteers Cheri Lindle and Kathryn Wall represented ThyCa in this event. 

Cheri Lindle is co-founder and co-moderator of ThyCa’s Anaplastic Thyroid Cancer E-Mail Support Group. Kathryn Wall is a ThyCa Board Member, Director of ThyCa Local Support Groups, and co-facilitator of the ThyCa Raleigh, North Carolina, Support Group. 

Here are questions from the TwitterChat, plus a few of the comments.

  • How long did it take you or your loved one to get a rare disease diagnosis? Why can it take a long time?
     
  • What is the most fundamental way in which a rare disease has affected your life?
    • Sometimes it results in a disconnect between doctors and patients that can affect their trust.
    • Had to start over. Lost my job; independence.
  • How can advocacy groups help people with rare diseases get an earlier diagnosis?
    • Advocacy groups support/educate patients + physicians, direct research 
    • Provide education to physicians
       
  • What are the most urgent challenges facing the rare disease community? What do you want people to know? 
    • Awareness. Research. Support. Treatment. But, in no particular order.
    • Orphan drug patents expiring, may end up costing a lot more
    • Funding, and open minded doctors. Doctors who are open to learning from their patients, doctors who will listen deeply
       
  • At what point should a patient seek out a specialist
    • Encouraging patientsto register when diagnosed with a rare disease can build awareness & lead to development of better treatment
       
  •  Can you share any encouraging stories of people who are trying to make a difference – through advocacy or other means? 
    • ThyCa will award new research grants in 2015. We have already awarded 47 grants to researchers in 5 countries  

ThyCa: Thyroid Cancer Survivors’ Association, Inc., is pleased to support Rare Diseases Day. Some thyroid cancers are rare, including medullary, anaplastic, and variants of papillary and follicular such as tall cell, Hurthle cell, and others. 

Rare Disease Day is coordinated by EURORDIS (Rare Diseases Europe; see ) with U.S. sponsorship by the National Organization for Rare Disorders. 

Please join us in recognizing this important day by visiting these web sites to learn more about rare diseases and Rare Disease Day. Share this important recognition with friends, and family. 

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The Meddie Memoirs Project
By Bill McClain
a.k.a. William Kenly 

Dear Fellow Meddies,

A few nights ago, Dave K suggested we all put our medullary thyroid cancer (MTC) thoughts into stories or poems and put them into a book.

I agreed to be the focal point, come up with guidelines, get it edited and then published. We want to publish it by the 18th International Thyroid Cancer Survivors’ Conference, in St. Louis, Missouri, on October 2-4, 2015.

The objective is twofold, to give us veterans of MTC an outlet to express our deepest thoughts (which is therapeutic and helps healing) about the effects of cancer in our lives, and to provide insight and understanding to those who read this book.

Here are a few of the guidelines. Contact me for more.

  1. Everyone connected to the MTC Journey is invited to contribute.
  2. Each personal story will be on your choice of an aspect of the MTC journey. Possible topics to consider include the medical aspect, the hospital experience, how people around you react to your cancer, the financial part, trials and drugs, how some people get closer and some people withdraw, how your perspective and horizon changed, the challenges of being a caretaker, new relationships with death and dying, fear, hope, etc.
  3. It can be a story, a poem, photographs or drawings.
  4. The length can be anything up to 2,000 words.
  5. The deadline is May 1, 2015, in my mailbox.
  6. Submissions must be as an attachment to an email, and must be in WORD format.
  7. I will pay for the publishing. We will have a foreword stating that this is your work, not mine.
  8. All proceeds will be contributed to ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Meddies, dig deep into your hopes and fears and thoughts. What would you like to say?

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Anaplastic Thyroid Cancer Research Update 

Cancer researchers at Mayo Clinic’s campus in Jacksonville, Florida, have identified a molecule that they say is important to survival of anaplastic thyroid cancer (ATC). The molecule (Stearoyl-CoA desaturase 1 (SCD1)) also seems to play a role in a wide range of cancers. 

“We now have some hope for treatment of this cancer, which is arguably the most lethal solid tumor known to medicine,” says John Copland, Ph.D., a cancer biologist and the study’s senior author. “Although ATC is rare — accounting for only 1 to 2 percent of thyroid cancers, it is responsible for up to 39 percent of all thyroid cancer-related deaths.” 

“Currently, there are no therapies for ATC that lead to prolonged survival, but I think combining an SCD1 inhibitor with a cocktail of other agents, all of which have dramatically different targets and approaches, may work,” says co-author Robert Smallridge, M.D., an endocrinologist who treats thyroid cancer. The Mayo researchers have developed SCD1 inhibitors and are testing the agents in different tumor models.

Read more here.

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From our E-Mail Inbox 

From California …
I was diagnosed with thyroid cancer in December 2014… Thank you, your website is very informative!!

From South Carolina …
Thank you very much.  My daughter is 24 and has thyroid cancer.  We have used the low iodine diet as the meal plan and the materials have guided us every step of the way.  

We are appreciative of ThyCa more than words can express.  Thank you for your great work and for the information you provide! Best to you and ThyCa!

From Australia…
Just want to say a huge thank you for the booklet I received in the mail today. The fact that you reach out to people as far away as Australia is amazing and makes me feel that I’m not alone in this journey. Thank you! XO

From California …
You and your website had been great help to me….really glad I found your site!!!! Very helpful and made me feel better knowing I can get so much needed info in one spot…

From South Carolina…
We are a nonprofit hospital and have recently built a cancer center with our facility, which is now opening an informational library for our patients and their family members. Would you be able to send bulk information? 

From Texas…
I’m a thyroid cancer survivor. I was diagnosed with papillary thyroid cancer at age 38 in 2013. I would like to get free literature to share with friends, co-workers, and family.

From Illinois…
I work at a medical center. Our unit works a lot with post-op thyroidectomy patients and would love to be able to increase awareness about thyroid cancer. If we can get flyers with information we will do our part to make sure more people get the information. 

(Editor’s Note: ThyCa is happy to mail free materials to medical professionals, centers, and individuals. We greatly appreciate everyone’s help in educating patients and caregivers, and raising awareness.)

From Yvonne…
I was diagnosed by biopsy of an enlarged thyroid which was abnormal and did not cause pain. My mood changed because of fear and my families, at home, work, and church felt my stress.…. Now I live to love the life I have after papillary thyroid cancer. 

From Australia…
I was diagnosed with thyroid cancer 3 years ago at age 59…I have had my thyroid removed, 2 radioactive thyroid ablations, and another operation to remove 8 lymph nodes in my neck. Blood tests show that I still have microscopic traces of cancer…It is hard for other people to understand about thyroid cancer…I don’t think any cancer is a good one.

From Washington…
I would like to receive some of the free brochures that you offer to use at an Informational Health Day that I will be facilitating…It will be held at the VA Medical Center in Seattle…It will be targeted to all women veterans, female employees, and female visitors to our facility.

From Rachel…
Thank you very much for the information. It is and will be very helpful throughout my process. 

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Video: Dr. Raeburn Explains Thyroid Surgery, Including Minimally Invasive Techniques 

This presentation is one of more than 25 informative videos from the 17th International Thyroid Cancer Survivors’ Conference. 

Christopher D. Raeburn, M.D., is a Surgeon at the University of Colorado School of Medicine at the University of Colorado Anschutz Medical Campus. 

Learn from Dr. Raeburn plus 20 more thyroid cancer experts through the videos and webinars on ThyCa’s YouTube Channel. 

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It’s ThyCa’s 20th Anniversary Year! 

You’re invited to get involved: 

For more ways to help, visit our How To Help page.

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Yoga and More, March 14th Fun and Fundraiser for ThyCa

SOOTHING YOGA CLASS   *   SNACKS   *   Musical Guests: THE CHAI NOTES!

Date: Saturday March 14, 2015
Time: 2:30 – 4:30 p.m.
Location: The Living Seed Yoga Center, New Paltz, New York
Hosted by: Donna Sherman 

Invited Donation: $25. Every penny goes to ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org) 

Can’t come but want to donate? Contact me and I will walk you through making a donation in honor of this event. Want to donate more than $25.00? Please do! 

Click here for more details event.

Thank you, Donna! 

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New ThyCa Support Groups Form in the Bahamas, Connecticut, Kansas, New Jersey, and Oklahoma 

Welcome to our newest local support groups! 

The new support group in Freeport, Grand Bahama Island, The Bahamas, will hold its first meeting on Thursday, March 5, at 7 p.m. Thank you to Elaine Farquharson for starting this group. 

Welcome to the new group, in New Haven, Connecticut. Its first meeting will take place on Thursday, April 16, from 6 p.m. to 7:30 p.m. Thank you to Charlene Campbell, A.P.R.N., for starting this group.  

Thank you to Daria Jerauld for starting groups located near each other in Kansas and Oklahoma. Daria has been a ThyCa volunteer for many years, including serving on our Toll-Free Number Team. She also started a support group in Iowa, where she previously lived. In addition, Daria has contributed delicious recipes for the next edition of ThyCa’s free Low-Iodine Cookbook. One of them was featured as a Low-Iodine Recipe of the Month. 

The new group in Bergen County, New Jersey, is facilitated by Kerri Slivka. Thank you, Kerri!. 

Local support groups now provide free support in 8 countries: United States, Australia, The Bahamas, Canada, Colombia, Costa Rica, The Philippines, and United Kingdom. 

ThyCa support groups are free and open to any and all survivors and their families, students, and others interested in thyroid cancer. Each group has its own web page with meeting and contact details. 

To find all the groups, and the contact for help in starting a group, click here. 

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Video: Thyroid Fine Needle Aspiration: What Do I Do After a Malignant or Indeterminate Result? 

This presentation is one of more than 25 informative videos from the 17th International Thyroid Cancer Survivors’ Conference. 

Sharon Sams, M.D., is a Pathologist at the University of Colorado School of Medicine at the University of Colorado Anschutz Medical Campus. 

Learn from Dr. Sams plus 20 more thyroid cancer experts by watching/listening to the videos and webinars on ThyCa’s YouTube Channel.

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Free Seminars— Mark Your Calendars! 

  • March 7, Lafayette Hill, Pennsylvania, near Philadelphia. Free presentation about levothyroxine by David Burgoon from Akrimax. He will speak at the monthly meeting of ThyCa NW Philadelphia at 10:30 a.m. Akrimax makes Tirosint, a T4 medication in a gelcap formulation used for thyroid hormone replacement and supplement therapy. 
  • March 21. St. Louis, Missouri. Erin Murphy, Healthy Living Coordinator from the YMCA of Greater St. Louis will be the guest speaker at the March meeting of the ThyCa St. Louis Support Group.  
  • April 6. Neptune, New Jersey. Free group discussion with endocrine surgeon Alexander Shifrin, M.D., from 6 p.m. to 7:30 p.m. at the meeting of the ThyCa Jersey Shore University Medical Center Support Group. 

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Visit our One-Click Events Calendar 

For 2015 Thyroid Cancer Events.  Reach this handy page with just one click from our Home Page. 

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Thank You for Helping Others! 

Each time you share your story, hand out a thyroid cancer awareness flyer, or tell others about ThyCa’s free services, events, and publications, you’re helping another person cope with thyroid cancer. 

Thank you to everyone who has given out thyroid cancer awareness materials. We invite you to download free awareness flyers from our Raise Awareness page. 

Or send your mailing address to us at thyca@thyca.org and ask us to mail you free educational handbooks, brochures, neck check cards, and more. 

Please share these materials with friends and relatives, as well as thyroid cancer survivors you meet in your community, or with your doctors so that they can offer them to their patients. 

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Invitation: Become a Member

No one should have to face a diagnosis of thyroid cancer alone. Your membership dues will support ThyCa’s efforts to provide our services to 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 interested in thyroid cancer and supporting ThyCa’s efforts. To join, online or by mail, visit our Membership page: 

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Low-Iodine Recipe of the Month 
Contributed by Elisa G.

Marinade for Chicken Breasts (or other chicken)

Mix together in a gallon zip-lock plastic bag, (or other container that closes) 

4 chicken breasts (or other chicken)
2 cut-up oranges with juice (put the orange peels in bag also)
1 teaspoon fresh ginger (may use dry ginger also)
I chopped clove of garlic
1/4 cup olive oil
1/4 teaspoon thyme
1/4 teaspoon of poultry seasoning 

Keep the mixture and chicken in the refrigerator and mash the contents in bag (or other container) frequently during the day. These are great on the grill or seared in a pan. 

Elisa writes, “My husband has metastatic thyroid cancer and has had to eat the low iodine diet a number of times. Your cookbook has been extremely helpful to me, as his wife, who prepares the recipes to make a grueling diet a little more palatable.” 

Thank you, Elisa! We will include this recipe and your other 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

Joining together online, through our webinars, or face-to-face in our support groups, workshops, and conferences is empowering. 

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

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

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Get Involved 

This weekly bulletin and ThyCa’s many other free services, events, publications, and thyroid cancer research grants are made possible through the generous financial and service contributions of our donors and volunteers. Thank you! 

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

Please share this Bulletin with your family and friends. If you would like to suggest topics or contribute an article, please contact us at publications@thyca.org. 

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Your Donations Support Thyroid Cancer Research—and More 

Your donations to ThyCa make possible— 

  • 47 thyroid cancer research grants totaling more than $1.3 million, with more grants to be awarded in 2015
  • Dozens of free educational publications in 8 languages, mailed on request to individuals and in bulk to doctor’s offices, around the world 
  • Free year-round support online, by phone, and in-person, both group and 1-to-1 
  • This informative Weekly Bulletin, our web site, videos, webinars, and more 

We invite you to make a donation to help others who are coping with thyroid cancer and its many challenges. 

Thank you! 

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About this Newsletter and ThyCa

Copyright (c) 2015 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! 

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

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. 

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, or visit our website.