ThyCa NEWS NOTES – February 2013

In This Issue:

New Free Handbook on Rare Anaplastic Thyroid Cancer

The Preview Edition of the new free handbook Anaplastic Thyroid Cancer is now available on www.thyca.org. This 40-page manual focuses on the rarest and most aggressive thyroid cancer, which is diagnosed in about 1% of all people with thyroid cancer.

The handbook was developed by numerous physician specialists, together with anaplastic thyroid cancer (ATC) survivors and caregivers.

It explains ATC diagnosis and management, critical decisions for patients and caregivers, coping and support, communicating with the medical team, sources of further information, and more. It also explains how to join ThyCa’s free ATC E-Mail Support Group. This online group began in 1997. It is a place for sharing experiences, and giving and receiving emotional support and understanding from other families coping with ATC.

Read and download the Anaplastic Thyroid Cancer Handbook. The full handbook will be available to request for free in its print edition soon, to individuals as well as to medical professionals. We mail it and our other free materials anywhere in the world.

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New Spirit Items Raise Awareness and Funds

Beautiful new hand-knitted hats and socks created by a thyroid cancer survivor, and the new notecards created by a caregiver, are now available from ThyCa, to help raise funds for our support services, outreach and awareness campaigns, and thyroid cancer research. Our many other Spirit Items include awareness wristbands, awareness pins, bracelets, shirts, tote bags, and more.

You’re invited to wear, use, and share these Spirit items. They also make wonderful gifts. Visit our Spirit Items page for photos and to place an order using our secure online form, or by mail.

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Seminars, Workshops, and the Conference on Thyroid Cancer

  • Visit our Calendar of Events at www.thyca.org/calendar.htm to find out more about Seminars, Workshops, the International Conference, and more!

  • The Chicago/Midwest Thyroid Cancer Survivors’ Workshop with Physician Speakers. At the Robert H. Lurie Medical Research Center at Northwestern University, 303 East Superior Street, Chicago, Illinois. Details will be added to the Conferences/Workshops page.

  • The Missouri/Midwest Thyroid Cancer Survivors’ Workshop with Physician Speakers. At St. Joseph Medical Center, Community Education Wing, 1000 Carondelet Drive, Kansas City, MO. Details will be added to the Conferences/Workshops page.

  • The Mid-Atlantic Thyroid Cancer Survivors’ Workshop with physician speakers will be held in the DC/Maryland/Northern Virginia area on a spring date to be announced.

  • Save the dates for the Conference! We’d love to see you in Philadelphia at the 16th Annual International Thyroid Cancer Survivors’ Conference, September 27-29, 2013. 

    T his unique event features dozens of leading experts, plus coping-skills specialists, survivors/caregivers with all types of thyroid cancer, & more. 

    Come for 1, 2, or all 3 days of learning, discovery, sharing experiences, camaraderie, and new friendships! Scholarships are available on request to cover the registration fee. Save the dates! www.thyca.org/support/conferences/

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My StoryBy Beena P.

Summer of 2010 was a particularly noteworthy one in my book. On the brink of starting a graduate master’s program for the career of my dreams, I vacationed in Montreal with close friends. There, I noticed I was quite fatigued. I went to see my physician for a routine physical exam.

The internist palpated my thyroid and stated that it was slightly enlarged. I was given the option of getting a thyroid ultrasound if I desired. Luckily for me, my health insurance covered the costs so I chose to have it done.

One thing led to another and then, I was having a fine needle aspiration biopsy in a nearby hospital. I was mildly transitioning into more clinical-based classes of my second semester when I received a phone call that would change my life forever. I was notified that the thyroid nodule detected was cancerous. 
My heart sank amid hearing the word “cancer.” I was told by the doctoral fellow that this was one of the most treatable types of cancer so I should consult with the head and neck surgeon immediately. When the surgeon stated that my case was malignant, I could not help but sob. It was one disconcerting piece of news after another.

Henceforth, the preparation began for scheduling the surgery, undergoing it, and being placed on thyroid medication afterward. The surgeon joked that most patients experience hoarseness following a thyroidectomy but I was talking way too much after mine. I did, however, experience enormous amounts of fatigue for months after. I also suffered with decreased concentration and “sleepy eyes” whenever I was out with my friends past eight o’clock at night. Despite my thyroid levels being regulated, it took me over several months to gain energy similar to the charisma I once encompassed prior to the surgery. Each step of improvement allowed me to sense that there were endless possibilities and timeless beauty in all the small things of life.

Many will say that thyroid cancer is a “good cancer” but the truth is, no one wants any type of cancer. Talking about my experience was the entryway to more defined relationships. Having this obstacle allowed me to empathize more, which allowed me to be more connected with people. Educating others about living this “aftermath” of thyroid cancer has allowed me to express what it is like to many people previously unknowledgeable about such a thing as thyroid cancer.

My positive stance is reflected by how thyroid cancer has molded me into being more grateful and appreciative for what I do have.

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Rare Disease Day
Rare Disease Day is sponsored by the National Organization for Rare Disorders (www.rarediseases.org). ThyCa: Thyroid Cancer Survivors’ Association, Inc., is pleased to partner in support of this important observance, February 28, 2013. Medullary thyroid cancer, Anaplastic Thyroid Cancer, and some variants of papillary and follicular thyroid cancer are rare diseases.

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Support Group News

The local thyroid cancer support groups are terrific ways to meet and get to know others in your community while you share experiences, coping tips, information about local resources in your community, and encouragement.

The newest group meets in Sal Lake City, Utah, on Saturday, February 16, and will hold regular meetings on the third Saturday of each month. Thank you support group facilitator and long-time ThyCa volunteer, Chris Prestano!

Thank you also to Rev. David Cotton for the seminar on Coping with Thyroid Cancer with at the February meeting of the ThyCa Jersey Shore University Medical Center Support Group.

Numerous local support groups meet every week. Check out the meeting details, contact information for the facilitators, and more.

Want to help start a group in your community? ThyCa can help you. See the same support group’s page for contact information.

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In Memory of Michael Karl, M.D.

Patients, caregivers, and the medical community lost a distinguished clinician and wonderful friend last year, Michael Karl, M.D., Endocrinologist, of Miami, Florida. Dr. Karl gave generously of his time in support of the ThyCa South Florida Support Group and thyroid cancer patients and caregivers everywhere. He was a speaker at the 9th International Thyroid Cancer Survivors’ Conference. We will miss him.

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The 5th Most Common

Thyroid cancer is the 5th most common cancer in women, and it’s also the fastest increasing cancer in incidence in both women and men. Read more about the 2013 statistics, and promote early detection through neck checks! Get our free materials. Visit our websiteto find out more.

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Get Involved!

All of us are coping with thyroid cancer— as a survivor, a caregiver, a medical professional, or a friend. All of us are committed to greater awareness about thyroid cancer.

Three easy ways to advance the cause are:

1. Always be on the alert for when someone mentions thyroid cancer. When that happens, mention ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org) and our wide array of free support services, materials, and events.

2. Ask us to mail you a small or large supply of ThyCa and thyroid cancer awareness materials to bring to your doctors, and to carry with you to share with others you meet

3. Add a simple signature to all your e-mails, such as:

– Free education, support services, and awareness materials
– September is Thyroid Cancer Awareness Month, sponsored by ThyCa
– 16th International Thyroid Cancer Survivors’ Conference — Philadelphia, Pennsylvania September 27-29, 2013
– Details at swww.thyca.org

We recommend this format as it highlights the numerous services available, as well as Thyroid Cancer Awareness Month, and the International Thyroid Cancer Survivors’ Conference. We also emphasize that this unique conference is about and for all patients with thyroid cancer, wherever they are, and regardless of whether they are a member of the ThyCa organization. These events and services are open to everyone!

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Free Newsletters and Guestbook

We invite you to join our worldwide network. We want to help you stay connected and informed about thyroid cancer news. And, with your help, we’ll be there for every person affected by thyroid cancer.

By signing up on ThyCa’s free Guestbook, you’ll receive the latest news about thyroid cancer, new free publications, events, and more.

If you haven’t already signed up, we invite you to sign up today.

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Follow us on Facebook and Twitter

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Low-Iodine Recipe of the MonthContributed by Michele M. of Nova Scotia, Canada

Chia Muffins

1 Cup whole grain oat flour
1/2 Cup whole grain barley flour
1/2 Cup whole grain brown rice flour
2 teaspoons baking powder
1/2 teaspoon baking soda
1 teaspoon cinnamon
1/2 teaspoon coarse salt
1.5 Cups chia gel (mix 1/3 cup chia seeds with 2 cups water makes chia gel)
½ Cup almond milk 
2 teaspoons vanilla extract
1/3 Cup honey
Optional: fruits, nuts, additional flavors**

Directions
In a large mixing bowl, add oat, barley, & brown rice flours, chia seeds, baking powder, baking soda, cinnamon, and salt; whisk until well combined. In separate medium bowl, combine buttermilk, water, vanilla & honey; whisk to combine. Add wet ingredients to dry ingredients; stir just until moistened. Don’t overmix; batter should be lumpy.

Let batter rest at least 30 minutes before baking. Or, cover batter and refrigerate overnight and as long as 5 days. Recipe may be doubled or tripled.

To bake, preheat oven to 350 degrees F. Grease or spray muffin cups with nonstick cooking spray. Without remixing the batter, spoon or scoop it into muffin cups, filling 2/3 full. Bake 20-23 minutes until a toothpick inserted in the center of muffin comes out clean. Let rest 5 minutes before removing from pan to cooling rack.

To microwave a single muffin, use a silicone muffin cup, or glass custard cup, ramekin, or small mason jar. If using glass, coat with cooking spray. Fill 1/2 to 2/3 full with batter, and microwave for 50-65 seconds (microwave times will vary). To microwave multiple muffins at one time, increase the cooking time 20-30 seconds for each additional muffin.

**To add fruits, nuts, and flavors. 
May use fresh, frozen, canned, or dried fruit. Blot off juice or liquid before adding to muffin layers. Fill muffin cups 1/3 full with batter, sprinkle on fruit or other flavors; top with batter to 2/3 full and add more flavors on top, pressing them into the batter slightly. Bake 22-24 minutes until a toothpick inserted in the center of muffin comes out clean. Let rest 5 minutes before removing from pan to cooling rack.

Michele writes, “First wanted to thank you for the Low-Iodine Cookbook. I was diagnosed in 2011 and am back on my low- iodine diet the second time, awaiting my 6-month follow up scan. Your cookbook has been a lifesaver! Here is a great muffin recipe I’d like to share with your readers. They are very moist and freeze very well.

Thank you, Michele! We will include your recipe in the next edition of ThyCa’s FREE Downloadable Low-Iodine Cookbook.

Free and Downloadable

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:

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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Are You a ThyCa Member? You’re Invited To Join Us!

Help us sustain, strengthen, and extend our services. We invite you to become a member of ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Membership is open to everyone worldwide. You may become a 1-year ThyCa member ($25), 2-year member ($45), or lifetime member ($225).

Your membership dues will support ThyCa’s efforts to reach and serve other survivors and their families around the world. Members receive our Membership Messenger newsletter.

For our online Membership Form and our mailed Membership Form, go to our Membership page.

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Every Day

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, in the time you give and in financial contributions, makes it possible to sustain, strengthen, and expand our services and outreach.

It only takes a minute to volunteer your time by e-mailing to volunteer@thyca.org or to make a donation online in support of ThyCa’s work (or you are welcome to donate by mail to ThyCa, P.O. Box 964, Chesterfield, MO 63006-0964), so click here to give.

Thank you!

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About ThyCa NEWS NOTES
Copyright (c) 2013 ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Please share ThyCa News Notes with your family and friends. For permission to reprint in another electronic or print publication, please contact us at publications@thyca.org. Each ThyCa News Notes complete issue is also published on this web page: www.thyca.org/news/newsletters/.

Your suggestions for articles are welcome. The deadline for articles and news items is the first day of each month.

Thank you to our writing, editing, and proofreading team for this issue: Leah Guljord, Michele M., Beena P., Pat Paillard, Barb Statas, 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.

Contact 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 visi tour website.