ThyCa NEWS NOTES – April 2013

In This Issue:

Thyroid Cancer Basics: Now in 3 Languages

This free 50-page handbook is now available in English, Chinese, and the new Spanish edition. Download this valuable resource from our home page (in the center box). Or, request the FREE print edition in English and Chinese— either an individual copy or in bulk for medical professionals to give to patients. The print version of the Spanish print edition is coming soon! We mail all our free materials anywhere in the world.

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Anaplastic Thyroid Cancer Handbook on the Web Site

The free Anaplastic Thyroid Cancer (ATC) handbook is available on www.thyca.org, and the print edition will soon be available to request in English, Chinese and Spanish. This 40-page manual focuses on the rarest and most aggressive thyroid cancer, diagnosed in about 1% of all people with thyroid cancer. Thanks very much to the numerous physician specialists, patients, and caregivers who developed and reviewed this valuable new resource.

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New Survey Seeks Patients’ Input on Information and Support

Now on our web site is the AYA Thyroid Cancer Survivors’ Survey. Physicians from the University of California Los Angeles and the University of Southern California developed the survey to learn about informational and support needs of thyroid cancer survivors during diagnosis, during treatment, and after.
ThyCa: Thyroid Cancer Survivors’ Association, Inc., is pleased to cooperate with the physicians in this survey. We invite your participation. The survey is anonymous. It should take less than 5 minutes to complete. Visit this page to take part.

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Meet Experts, Get Answers

  • Monday, May 6, 2013. Neptune, New Jersey. Peter Mencel, M.D. will speak about Novel Chemotherapies for Patients with Metastatic Disease at the free support group meeting of the ThyCa Jersey Shore University Medical Center Support Group. Details at the group’s web page.

  • Thursday – Saturday, June 6-8, 2013. Rockville, Maryland. Hypoparathyroidism Patient/Family Conference. Sponsored by the nonprofit Hypoparathyroidism Association. See www.hypopara.org for details. ThyCa is pleased to collaborate with the Hypoparathyroidism Association in our mutual goal of reducing the incidence of post-surgical hypocalcemia/hypoparathyroidism.

  • Saturday, June 22, 2013. The Mid-Atlantic Thyroid Cancer Survivors’ Workshop with physician speakers from Johns Hopkins, Washington Hospital Center, and more at Holy Cross Hospital, Silver Spring, Maryland. Register online in advance, or onsite at the workshop. Details on our Conferences page.

  • Friday, June 28, 2013. Los Angeles, California. Free Cancer Rights Conference. Learn from experts, and ask your questions about health insurance, employment, disability, and more. At USC Norris Comprehensive Cancer Center. Sponsored by the Cancer Legal Resource Center. ThyCa is pleased to partner in support of this event.

  • Every Day, Free one-hour Thyroid Cancer Webinars with experts from Dana Farber Cancer Institute, Johns Hopkins, M.D.. Anderson Cancer Center, Memorial Sloan-Kettering Cancer Center, and many more leading centers. The webinar library is available online on our website. Watch and listen wherever you live in the world.

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Latest Conference News: Save the Dates!

Registration and hotel room reservations are now open for the 16th Annual International Thyroid Cancer Survivors’ Conference, September 27-29, 2013 in Philadelphia, Pennsylvania.

We’re excited about the tremendous lineup of medical experts you’ll meet at this important and unique event. They’re coming from M.D. Anderson Cancer Center, Massachusetts General Hospital, University of Pennsylvania, Children’s Hospital of Philadelphia, and numerous other leading thyroid cancer treatment and research programs.

Session leaders will include dozens of leading medical experts, who will speak and answer your questions. It’s a terrific opportunity to learn the latest from experts, about all aspects of thyroid cancer care and research.

In addition, coping-skills specialists, mental health professionals, attorneys, and more will lead sessions. We’re also pleased that the Hypoparathyroidism Association will again join us for sessions about coping with post-surgical hypocalcemia/hypoparathyroidism. The weekend offers more than 100 session choices. Read through past years’ program schedule, on our web site, for an idea of the amazing range of topics and experts.

Come for 1, 2, or all 3 days of learning, discovery, sharing experiences, camaraderie, and new friendships!

Once again, we’re pleased to announce that we’ve arranged a special $99 hotel room rate for conference attendees at the Clarion Hotel Conference Center, our conference hotel.

And remember, scholarships are available on request to cover the registration fee (simply check the scholarship box on the form).  Save the dates! We look forward to seeing you there.

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Nine Reasons To Attend a Face-to-Face Support Group

ThyCa Local Support Groups meet every week, on both weekend days and weekday evenings. Local thyroid cancer support groups are terrific ways to meet and get to know others in your community while sharing experiences, coping tips, information about local resources in your community, and encouragement. Read more here.

Find a group here.

If you don’t see a group in your area, consider starting one. ThyCa can help you. Go to our Support Groups page for information.

More Free Support

Great thyroid cancer support and conversations are going on in the ThyCa/Inspire Online Thyroid Cancer Support Community, now with over 5,400 members! Find out about all our free local and online support groups and one-to-one support here. ThyCa also has 11 different online e-mail discussion groups on YahooGroups. For more information about them or to join, go to our Email Support page.  

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Jennifer’s Hike! 2,650 Miles To Raise Awareness and Funds

Jennifer Smart, thyroid cancer survivor, will walk the entire 2,650 miles of the Pacific Crest Trail (PCT) starting in late April to raise thyroid cancer awareness and funds for ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Why is Jennifer hiking for ThyCa?  “In 2006, as a newly diagnosed thyroid cancer patient,” she writes, “ThyCa: Thyroid Cancer Survivors’ Association was an incredibly valuable resource to me. Whether I was learning about this cancer on their website, attending a conference and meeting others, or downloading their low-iodine cookbook, ALL of it was FREE, and very helpful.”

Jennifer invites your support of ThyCa.  Read her story, see photos, and learn how you can donate in support of her wonderful efforts. 100% of all donations received go to ThyCa: Thyroid Cancer Survivors’ Association, Inc.  Her hike’s web site Journey Return has her story, photos, and a donation link.

Visit our News page (www.thyca.org/news/hiking031713/) and ThyCa’s Rally for Research page on www.thyca.org for an article with photos, plus an additional link to Jennifer’s web site Journey Return.

Thank you, Jennifer!

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Coping with Medullary Thyroid Cancer: A Patient’s StoryBy William Kenly

(Excerpted, with the author’s permission, from The Dogs of Cancer, Outskirts Press, 2013. The Conference and the Medullary group noted in this article are available through www.thyca.org)

“There are no extra pieces in the universe. Everyone is here because he or she has a place to fill, and every piece must fit itself into the big jigsaw puzzle.”   ~Deepak Chopra

My throat clenched tight, stopping my breath and my words and shocking my always-in-control brain.
Tears startled me as they came to my eyes either from the sting in my throat or from some deep well of emotions that I had inadvertently drilled into.

So unexpected!

Suddenly I was out of control.

I was uber conscious of the strangers in folding chairs sitting around me, watching me, and at the same time I was aware that something had wrenched control of my actions away from me. My throat was closed up and I struggled to pull in little gasps of breath.

I tried desperately, and failed, to force words out, unable to understand what was causing my systems to catastrophically

hut down, and I vaguely recognized emotion’s steel grip clamping my throat closed like a giant’s hand.
The supportive people around the room, and my wife sitting beside me, were patiently waiting for me to speak, to laugh, to say what was on my mind, but what I wanted to say was more than words, and the emotion came before the words, as I struggled to regain control. I made a feeble smile and swallowed hard and tried to suck air into my throat. They each looked at me expectantly, non-verbally offering me support and acceptance, and I saw in those eyes, a pure and simple understanding and acceptance.

They knew exactly what was happening to me.

Why was I choking, trying to say to them the same words that I had used a hundred times before in recent months to people even more precious to me than was this group of assorted middleaged strangers in this non-descript hotel conference room in some city half-way across the country?

I breathed deeply, trying to reset my runaway emotions that had unexpectedly bushwhacked me. The Command And Control part of my brain fought to clear my mind, to regain logistical control. Simultaneously the failure analysis function of my brain searched for a cause of this sudden and unexplained meltdown.
For the last three months, I had explained my cancer to my family, trying to strike a balance between saying that it was a serious and potentially fatal years-from-now form of thyroid cancer. And, at the same time, encouraging them to not worry too much right now as we gathered facts and learned how to deal with this. I had discussed it repeatedly and in many variations with my entire extended family, including my children, and with many friends and co-workers; to each audience, I made small adjustments, to reduce unnecessary worry.

It had started when I felt the bump in my neck, below my Adams Apple, a year earlier. It did not alarm me at the time, because my body grows bumps. I have always had warts, and when they were burned off and cut out, they reappeared a few years later. I had one bump along the side of my nose that was removed a total of five times over fifteen years, and it kept coming back. I had polyps when they did my 50-year-old colonoscopy.

My body grows bumps.

When I first heard the name, Medullary Thyroid Cancer (MTC), there in the Recovery Room after the Total Thyroidectomy, which had started out a few hours earlier as a Partial Thyroidectomy to remove a nodule they had biopsied earlier and called “probably benign,” how did it make me feel? Probably because I was still groggy from the anesthesia, maybe because the doctor was not saying that I should go home and get my affairs in order, or maybe because I had chewed on the concept for a month, it did not strike fear or panic into my stomach like I keep hearing is a common reaction to the spoken diagnosis of cancer.

And then over the coming days and weeks? Nope, no fear or panic then either, as there was a lot to learn, many more internet sites describing MTC than I would have imagined for a condition that I don’t remember ever even having heard mentioned in fifty-some years, and while the facts percolated through my analytical brain, I was too busy arming myself to react emotionally. I was on a mission and being on a mission always allowed me to control my emotions.

The difference today, in this hotel conference room, was that in this group of thyroid cancer survivors, I wasaccepted, understood and safe. I did not have to play a fatherly type or minimize the seriousness or my fear for my boss or my employees. I could let my guard down. I did not have to control myself or soften the words. I could be open and undefended.

I could cry.

And I did. I sobbed openly in front of everyone, and that was OK because they were each walking a very similar road.

I shocked myself that day when I realized the tidal surge of emotions that I had been keeping in the background.

In the weeks and months to come, as my knowledge base reached a critical mass, I began to see inquiries on the Yahoo Medullary site (Editor’s note: This free discussion and support group, sponsored by ThyCa, is available at www.thyca.org/sg/email/#medullary) and then on the FaceBook Medullary Thyroid Cancer page, from people even newer to the process than I was, and I began to feel strangely battle-tested.

One day I even posted a suggestion to a newbie on the site. Then I posted another. I began to realize how much information I had gathered that others were looking for. Then one day a newbie commented on one of my postings and thanked me for my “wise” advice. My ego liked that and I re-doubled my efforts to answer other people’s questions.

Galina and I went to the annual ThyCa Conference in Danvers, Massachusetts, the next year. One evening, as we were standing in the lobby, a young woman with a meddie throat scar, tapped me on the shoulder and introduced herself,

“I just wanted to say thanks for your postings on the ThyCa site. They are thoughtful and full of hope, and I just had to tell you how much they have meant to me.”

Over the next few years, this camaraderie and this new mission helped me to heal.

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Looking for a Thyroid Cancer Specialist?

We’ve got helpful links. Also, page 50 of Thyroid Cancer Basics has tips on finding the right doctor for you. This free handbook is downloadable from our web site, and is also available free by mail.

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Low-Iodine Recipe of the Month
Contributed by Amanda F. of Ohio

Rosemary Garlic Roasted Potatoes

4-6 Potatoes, peeled and chopped into 1-inch cubes
3 Cloves Garlic, chopped finely
1/4 Cup Olive Oil
1 Tablespoon Dried Rosemary
Noniodized Salt (Free Flowing) and Black Pepper to taste

Preheat oven to 400 degrees F. 

Peel and chop potatoes and garlic. Add all ingredients to a large Ziplock bag and toss to coat evenly.  Spread potatoes in a single layer on a large cookie sheet. 

Bake at 400 degrees F for about 30 minutes, or until potatoes are lightly browned and tender.  It helps to stir them once or twice while baking so they cook evenly. 

I used the leftovers to make a “hash,” with grilled chicken, and sauteed bell peppers, onions, and mushrooms.

Amanda writes, “First, I want to say what an incredible resource your cookbook was for me while I was on the low iodine diet.  I probably wouldn’t have made it through without it!  It also helped me learn to adapt my own recipes to be low iodine, as well.

“Since I found it to be so helpful, I wanted to submit one of the recipes that I prepared often while on the diet. Again, thank you for your cookbook, and what you continue to do for Thyroid Cancer Survivors.” 

Thank you, Amanda! 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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Free Newsletters and Guestbook

We invite you to join our worldwide community. 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. If you haven’t already signed up, we invite you to sign up today.

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News From the Rally for Research

We support thyroid cancer research, and have awarded more than $1 million in thyroid cancer research grants to researchers in 5 countries thanks to your support!

ThyCa’s Research Grants are open to institutions and researchers worldwide, with grant recipients selected by an independent expert panel of the American Thyroid Association.

Read more here, and find out how you can help, on the official Rally for Research page.

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Partner in Thyroid Cancer Awareness; Get Free Materials Anytime

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.

Four easy ways to help the next person:

  1. Get free materials from ThyCa and keep them on hand. Be on the alert for opportunities to tell your story, share materials, or connect people with ThyCa’s free services, events, and resources when someone mentions thyroid cancer.
  2. Download this flyer: Three things to tell your friends about thyroid cancer: www.thyca.org/wp-content/uploads/legacy/tellfriends.pdf. This plus many more free flyers are downloadable on the Raise Awareness page.
  3. Invite your organization to partner with ThyCa in the worldwide Thyroid Cancer Awareness Month in September. Get tips and tools for helping, on the Awareness Month page: www.thyca.org/how-to-help/awareness/
  4. Tell your doctors we’re happy to send them free materials for their patients. Direct them to this page www.thyca.org/medical-professionals/md-intro/ to request quantities of our free materials for all of their patients. These include: 
    – Thyroid Cancer Basics Handbooks
    – Fine Needle Aspiration Booklets 
    – Low-Iodine Cookbooks 
    – Wallet Cards 
    – Patient Services Brochures 
    – Thyroid Cancer Awareness Brochures 
    – Neck Check Cards 
    – Support Group and Conference Flyers, & more 
    – Also available, the Fine Needle Aspiration Procedure Manual for Physicians

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About ThyCa NEWS NOTES and ThyCa
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.

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: Amanda F., Leah Guljord, William Kenly, 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 visit our website.