ThyCa News Notes – August 2014

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.