ThyCa News Notes – March 2015

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.