ThyCa NEWS NOTES – March 2010

In This Issue

Dr. Daniel Caruso To Speak on March 9, 2010

We are pleased to announce that Daniel R. Caruso, M.D., Endocrinologist, will speak and answer questions about thyroid cancer treatment and testing on Tuesday, March 9, 2010, from 12 noon to 1:30 p.m. at the meeting of the ThyCa Reno, Nevada, Support Group.

The free program and meeting take place at Renown Regional Medical Center, Sierra Tower, First Floor, Cafeteria Board Room, 1155 Mill Street, Reno, Nevada.

The host group is a free support group for thyroid cancer survivors, family members, and friends. Attendees share information, experiences, and coping strategies at the meetings on the second Tuesday of each month, starting at noon.

The seminar on March 9th is open to the public. The volunteer facilitators of the meeting and support group are Marta Brown and Marion Hammond. For more information, e-mail to reno-nv@thyca.org. Or visit the group’s web page: www.thyca.org/sg/nv_reno/

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Surveys Receiving Lots of Responses: Have You Taken Part?

We’re excited to report that large numbers of thyroid cancer survivors have already completed the 3 online surveys developed by four of ThyCa’s Medical Advisors.

If you haven’t yet taken part, you’re invited to complete each of the 3 different surveys about your experiences with your thyroid cancer.

It will just take a few minutes for you to complete each survey.

If you’re reading this, and you’re thinking, “It won’t matter if I participate,” you do matter. The more of us who participate, the louder our voice becomes.

These surveys are a form of thyroid cancer research. We all have a chance to impact our care going forward. Help us make a difference.

  • Voice Following Thyroid Cancer Surgery, survey sponsored by David Myssiorek, M.D., Otolaryngologist
  • Radioactive Iodine Treatment, survey sponsored by Douglas Van Nostrand, M.D., Nuclear Medicine Physician, and Matthew Ringel, M.D., Endocrinologist
  • Complementary and Alternative Medicine Use, survey sponsored by Stephanie Lee, M.D., Ph.D., Endocrinologist

You can get to all three surveys by going to our Surveys page.:

Please take part. Make a difference. Thank you very much.

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Partnering with NORD for Rare Disease Day

Rare Disease Day, February 28, 2010, is a grassroots awareness effort, with events and activities taking place across the U.S. and online. Sponsor is the National Organization for Rare Disorders (NORD).

ThyCa is proud to be a Rare Disease Day Partner with NORD, and greatly appreciates NORD’s efforts in advocacy for research and patient care.

Anaplastic thyroid cancer and medullary thyroid cancer are the two rarest types of thyroid cancer. Both urgently need more research for cures. Pediatric thyroid cancer (typically papillary or follicular, and sometimes medullary) is also rare. ThyCa sponsors free online support groups as well as providing web site content devoted to each of these types of thyroid cancer.

For Rare Disease Day, NORD and Discovery Health developed on-air and online messages, to provide information about rare diseases and voice the themes of the day—

  • .that rare diseases are an important public health concern
  • that additional research is needed to develop new treatments for these diseases.

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ThyCa Is Now on Facebook

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is now on Facebook (Group Name: THYCA)!

Become a fan of THYCA, message us, and send us your suggestions!

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Free Spring Workshops To Feature Physician Speakers

  • Saturday, April 17, 2010. Kansas City, Missouri. The 6th Midwest Thyroid Cancer Survivors’ Worksho
  • Saturday, May 22, 2010. Baltimore, Maryland. The 9th Annual Mid-Atlantic Thyroid Cancer Survivors’ Workshop
  • Saturday, May 29, 2010. St. John’s, Newfoundland, Canada. The Newfoundland-Labrador Thyroid Cancer Survivors’ Workshop

These free one-day educational events are sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. Thyroid cancer survivors, their families, caregivers, and friends are invited to attend.

On Saturday, April 17, 2010, you’re invited to the 6th Midwest Thyroid Cancer Survivors’ Workshop. This educational and supportive event will take place from 8 a.m. to 4:30 p.m. at the Community Center for Health and Education, St. Joseph Medical Center, 1000 Carondelet Drive (I-435 and State Line), Kansas City, Missouri.

Speakers include Uzma Khan, M.D., Endocrinologist, University of Missouri Hospital, Columbia, Missouri; Paul Ladenson, M.D., Endocrinologist, Johns Hopkins University School of Medicine, Baltimore, Maryland; Debbie Ritchie, M.S.N., A.P.R.N., BC, FNP, Advanced ENT Nurse Practitioner, University of Missouri Hospital, Columbia, Missouri; Lisa Shnayder, M.D.,F.A.C.S., Otolaryngologist, University of Kansas Medical Center, Kansas City, Kansas; and more being confirmed.

These events are free. Come for all or part of the day. You may register either online on our Conferencespage (form to be made available soon) or onsite at the workshop. Visit ThyCa’s web site for further details about the speakers, programs, and directions to the meetings.

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Cancer-Related Legal Issues Are Focus of Events

The Cancer Legal Resource Center (CLRC) is hosting two one-day educational conferences in 2010 for patients, caregivers, and health care professionals on cancer-related legal issues.

The free events will take place in Chicago, Illinois, on Friday, June 18, 2010, at Loyola University Chicago School of Law, and in Los Angeles, California, on Friday, October 8, 2010, at UCLA Medical Center. These events are dedicated to educating people coping with cancer, caregivers, advocates, and health care professionals.

Topics include employment and taking time off work, getting and keeping health insurance, navigating managed care, estate planning, disability and life insurance options, government benefits, and legislative advocacy and cancer community resources.

Details are available at www.CancerLegalResourceCenter.org. ThyCa: Thyroid Cancer Survivors’ Association is pleased to partner with CLRC in connection with these events.

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Volunteer in the Spotlight: Meet Brian Madeleine

In November 2009, Brian Madeleine of Michigan came forward to volunteer for ThyCa. He has already made a big difference.

Thanks to Brian, ThyCa now has a Facebook presence (Group Name: THYCA). Brian created ThyCa’s Facebook Wall, Information, and Events pages. He has also developed press releases, plus a plan for further outreach and communications nationally, and internationally.

Brian doesn’t have thyroid cancer, nor does anyone else in his family. His connection that led him to ThyCa is a family friendship with ThyCa Troy, Michigan, Support Group Facilitator Gwynne Bambach. This winter, when Brian offered his services, Gwynne connected him with ThyCa. Thank you, Gwynne.

Brian is a graduate of Central Michigan University with a focus in journalism and public relations.

Brian is one of the volunteers we’re honored to call Friends when we say that ThyCa volunteers are thyroid cancer survivors, family members, and friends. Thank you, Brian!

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Readers’ Ideas for Quarters for the Cure

From Regina F.
I read in the newsletter about the quarter per week idea—Good Idea! Suggestion: design and provide a container/bank/envelope which could be used for this purpose. It could be put on one’s dresser /desk / kitchen counter /car dashboard / gym locker / nightstand / TV to remind a person to put the quarter in every week at a particular time (right before going to church…on payday…when going to a weekly club meeting…on the way to a weekly hair/nail appointment…before going to a weekly social event…on the way to the gym….whatever one does on a regular basis). This would make it easier to accumulate the quarter a week….just a suggestion.

P.S. Thank you for all your work and help.

(Editor’s Note: ThyCa will provide donation envelopes for this purpose. Just send your mailing address tofundraising@thyca.org or call 877-588-7904. To find out more about Quarters for the Cure, visit our Rally for Research page.

From Louise S., ThyCa Local Support Group Facilitator
We’ve discussed the Quarters for ThyCa campaign at our recent support group meeting. The group likes it and has decided to keep a piggy bank on the table with our coffee. We are now emptying our pockets of change when we come to the meetings.

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From the E-Mail Box

My dad is a thyroid cancer survivor. He starts his low iodine diet next week. Thank you for this website. I have learned so much. I have sent my dad the information. This is very useful information. Thank you very much! I loved the cookbook! And it’s free! You are the best.
—Christy C.

Thank you, thank you, thank you!!! After downloading the Cookbook and information that came with it, I was very prepared for the surgery, diet and recuperation. It is so important to be prepared and have your meals on hand because you just can’t grab just anything. I have been so grateful for the suggestions for snacks to bring with me where ever I go. I would have been in a bad way if I had been unprepared.
— Rebecca S.

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What’s New on the Web Site?

Some of the latest additions to www.thyca.org include added events in the Calendar, pages for each new Local Support Group, the current list of local support groups, and more.

Our web site has more than 650 pages of content. More than 50 distinguished physicians plus numerous other specialists provide ongoing input and review of the medical information. We greatly appreciate the wonderful support of these medical specialists.

We update and expand the web site every week. Thank you to our Web team, consisting of our webmasters: Betty Solbjor and Joel Amromin; our Publications Committee members; and our Medical Reviewers.

Visit www.thyca.org often for the latest information updates, the schedules of local support group meetings, and news about special events, or to get involved.

Let us know if you have ideas for additional web site content, as well as additional questions to be answered by physicians. E-mail your ideas to publications@thyca.org. This is our web site, and it benefits from everyone’s contribution. It’s also a great way to start being involved!

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My Butterfliesby Marie Cecile Trujillo of Nevada

My pretty butterflies fly here and there and everywhere,
Where are you going my little busy butterflies?
Here and there and everywhere
Going from flower to flower.
Where are you going little butterflies?
Fly away, fly away, my pretty butterflies.

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Mrs. Pennsylvania International Contestant Raises Awareness of Thyroid Cancer and ThyCa

Sherri Xanthopoulos Russo, Mrs. Collegeville Pennsylvania, is competing in the Mrs. Pennsylvania International Pageant with a platform on thyroid cancer awareness in women.

She reports that her gynecologist found her nodule, and had begun doing neck checks as part of the regular examinations. She was diagnosed with thyroid cancer in 2008. She hopes that all gynecologists will do neck checks during routine exams.

In addition to helping ThyCa with outreach and awareness, of both thyroid cancer and ThyCa, Sherri is also donating a portion of her sponsorship proceeds to ThyCa.

Thank you, Sherri, for raising awareness of thyroid cancer!

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Welcome to the Newest Local Support Groups
Groups Form in Seven States

Welcome to our six newest local support groups, as well as a returning group, and thank you to the volunteer facilitators. Each group has its own web page.

  • ThyCa San Diego, California – Teri Baird and Mary Finley, Co-Facilitators
  • ThyCa North Miami Dade, Florida – Maxine Poupko and Fran Goodstat, Co-Facilitators
  • ThyCa Atlanta Georgia – Liz White, Facilitator
  • ThyCa Sante Fe, New Mexico – Melissa Pickett, Facilitator
  • ThyCa Manhattan, New York – Arlene Bregman, Facilitator
  • ThyCa Charlotte, North Carolina — Ardith Allen, Facilitator
  • ThyCa Northwest Philadelphia — Pat Paillard, Facilitator

More than 80 ThyCa thyroid cancer support groups are available in communities around the United States and in Canada, Costa Rica, and Philippines. ThyCa support groups are free and open to any and all survivors and their families, students, and others interested. You may either contact the facilitator by e-mail or telephone, or simply show up at the meeting. Friends and family are always welcome.

Go to our Support Groups page for a complete list of groups, contact information, and meeting schedules. This page also has information about starting a group in your area. If you don’t have Internet access, call (toll-free): 1-877-588-7904.

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Cancer Is Not Funny, But…By Stacey Feeney

I am a thyroid cancer survivor for the past 11 years! As with everyone who is diagnosed with cancer … when I heard the word “cancer,” the number of emotions that emerged was overwhelming, and left my head spinning.

I was diagnosed on my and my husband’s wedding anniversary, and scheduled the surgery for four days later. Things were moving very fast, to say the least … so much information, so many questions, so much uncertainty.

What I did find to be the most overpowering of thoughts was how was I going to tell my 9-year-old son how was this all going to turn out. What if it came back, etc.

My husband and I decided that honesty would be best … not too much information, but nonetheless, to be honest and upfront was the best thing to do. Two days before my surgery, my husband and I told our son the very basics of what was going to happen. We wanted to explain what my neck would look like when I came home, as we did not want him to be shocked or frightened when he saw me. He asked a couple of questions and seemed to be satisfied with the answers.

The day before my surgery, I had not gone to work. I wanted to get some stuff together and organized. I picked my son up from school and came home so we could spend some time together.

Funny, as we sat on couch, I looked at him and it seemed like I could actually see him thinking as to what he was going to ask me. I did not know what, but I could see something forming in his mind.

And then he asked, and his exact words were, and I will never forget, “So, Mom … hmmm … You said that you are going into the hospital and the doctor is going to cut your neck from here to here (he motioned with his finger a cutting motion from ear to ear) to take that lump out that is making you sick. SO ARE YOU GOING TO LOOK LIKE A PEZ DISPENSER?”

Let me tell you, I laughed so hard and gave him a big hug. And I answered him very honestly, and with a big smile, “Yes, I guess I am, but only for a little while.” Then we had some ice cream. Thank you for allowing me to share my story.

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Low-Iodine Recipe of the MonthContributed by Jane G. of Oregon

Orange Oat Muffins

¼ cup oat bran
½ cup quick-cooking oats
1/3 cup orange juice concentrate
½ cup water

Combine oat bran, oats, juice concentrate, and water in medium bowl and set aside for 20 minutes.

1 egg white (see note)
2 Tbsp. canola or other oil

Add to oat/juice mixture after 20 minutes.

3/4 cup whole wheat pastry flour
1/4 cup sugar (half Splenda okay)
1/2 tsp. baking powder
1/2 tsp. baking soda
1 tsp. cinnamon
2 Tbsp. grated orange peel (optional)

Mix dry ingredients together in small bowl.Add to oat/juice mixture and stir only until combined. Divide batter equally into 6 greased muffin cups.

Bake at 375 degrees for 25 minutes. Cool in pans; then remove to wire rack. Freeze for longer storage. These taste great slightly warmed in a microwave.

Note: 1 Tablespoon ground flax seed soaked in 2 Tablespoons boiling water may be substituted for the egg white.

Thank you, Jane! We’ll include this recipe in the next edition of the FREE Downloadable Low-Iodine Cookbook.

Download the 6th edition of the Low-Iodine Cookbook for free, with more than 250 favorite recipes from more than 100 generous volunteers.

The Cookbook is also available in Spanish and in 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.

If you’d like to contribute your favorite recipe or tip to the cookbook’s next edition, send it torecipes@thyca.org.

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You’re Invited To Become a Member

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

Your membership dues will support ThyCa’s efforts to reach and serve other survivors and their families around the world. You may join as a 1-year member ($25), 2-year member ($45), or lifetime member ($225).

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Events Preview 2010

  • Every Month in 2010. ThyCa’s Thyroid Cancer Support Group Meetings in Your Community. More than 80 local support groups in the United States, Canada, Costa Rica, and Philippines. For the complete list of groups, contact information, and more details, visit our Support Groups page.
  • Tuesday, March 9, 2010, from 12 noon to 1:30 p.m. Free talk and question and answer session with Daniel R. Caruso, M.D., Endocrinologist, at the meeting of the ThyCa Reno, Nevada, Support Group. For more information, e-mail to reno-nv@thyca.org. Or visit the group’s web page.
  • Saturday, April 17, 2010. Kansas City, Missouri. The 6th Midwest Thyroid Cancer Survivors’ Workshop with Physician Speakers. Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. At St. Joseph Medical Center, Community Center for Health and Education, 1000 Carondelet Drive, Kansas City, Missouri. Free.
  • Saturday, May 15, 2010, 1:30 p.m. – 3:00 p.m. Thyroid Disease and You. Free educational forum about all thyroid disorders. Physician speakers. Held in conjunction with the American Thyroid Association meeting. ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a co-sponsor of the forum. Location: Hyatt Regency Minneapolis, 1300 Nicollet Mall, Minneapolis, Minnesota 55403. Reservations requested; Walk-ins welcome. E-mail thyca@thyca.org to RSVP. (Please indicate in your message the thyroid condition you are most concerned about.)
  • Saturday, May 22, 2010 (Baltimore, Maryland. The 9th Annual Mid-Atlantic Thyroid Cancer Survivors’ Workshop with Physician Speakers. Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. Free.
  • aturday, May 29, 2010. St. John’s, Newfoundland, Canada. Newfoundland and Labrador Thyroid Cancer Survivors’ Workshop with Physician Speakers. Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. Free.
  • 2010. More Free Seminars and Workshops with Physician Speakers, sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. Details will be posted on our website.
  • June 4-5, 2010. Rockville, Maryland. Hypoparathyroidism Patient Conference, sponsored by the nonprofit Hypoparathyroidism Association (www.hypoparathyroidism.org), which is listed on the Links page on the ThyCa site. There will be physician speakers. Conference Location: Rockville Hilton Hotel. For details, visit the Hypoparathyroidism Association web site.
  • Friday, June 18, 2010, Chicago, Illinois. Cancer-Related Legal Issues. Free educational conference sponsored by the Cancer Legal Resource Center (CLRC for patients, caregivers, and health care professionals on cancer-related legal issues. At Loyola University Chicago School of Law. Details atwww.disabilityrightslegalcenter.org/about/CRLCconference.cfm.
  • September 2010. Thyroid Cancer Awareness Month. Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. Plus year-round awareness campaigns. Visit the Raise Awareness Page on our website to download free flyers, or request free awareness materials.
  • Friday, October 8, 2010, Los Angeles, California, at UCLA Medical Center. Cancer-Related Legal Issues. Free educational conference sponsored by the Cancer Legal Resource Center (CLRC) for patients, caregivers, and health care professionals. Details atwww.disabilityrightslegalcenter.org/about/CRLCconference.cfm.
  • The 13th International Thyroid Cancer Survivors’ Conference
    October 15-17, 2010 in Dallas, Texas
    Sponsored by ThyCa: Thyroid 7Cancer Survivors’ Association, Inc.
  • • The 9th Annual Dinner/Auction Fundraiser for Thyroid Cancer Research.
    October 16, 2009 in Dallas, Texas
    Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.

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Thank You From ThyCa!

We believe that no one should have to be alone when facing thyroid cancer.

Our free support services are offered with this as our main goal. We thank everyone for giving your time and talents to making possible our free services, publications, and events.

We’re grateful to you for reaching out to others worldwide, to help connect them with ThyCa’s many free support services and educational resources.

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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.

Every day, numerous people distribute ThyCa outreach materials to their physicians, making them aware of a resource that can benefit their patients dealing with a thyroid cancer diagnosis.

Your generous support is what makes it possible to sustain, strengthen, and expand our services and outreach. It only takes a minute to make a secure donation online in support of ThyCa’s work (or you are welcome to donate by mail), so click here to give.

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Ask ThyCa

If you have questions about thyroid cancer, please send them to thyca@thyca.org and we’ll answer your question in an upcoming newsletter as well as adding to our web site content.

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Your Ideas?

What sections of ThyCa’s web site do you find most helpful? What suggestions do you have for ThyCa’s web site? E-mail your answers and ideas to publications@thyca.org.

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About ThyCa NEWS NOTES
Copyright (c) 2010 ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Thank you to our writing, editing, and proofreading team for this issue of the newsletter: Stacey Feeney, Jane G., Leah Guljord, Pat Paillard, Barbara Statas, Marie Cecile Trujillo, Cherry Wunderlich, and Gary Bloom.

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

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.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a national non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals.

We are dedicated to support, education, and communication for thyroid cancer survivors, their families, and friends, as well as to public awareness for early detection, treatment, and lifetime health monitoring, and to thyroid cancer research fundraising and research grants.

Contact us for free awareness materials and information about our free services and special events. E-mail thyca@thyca.org, call 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit our website.