ThyCa News

ThyCa News Notes - February 2015

03/2015

In This Issue:

 


Why You Should Stop Calling Thyroid Cancer 'Good Cancer' 

This is the title of an article by Anna Almendala, Huffington Post Healthy Living Editor, published on February 6, 2015, in the Huffington Post and already shared by more than 2,200 people through Facebook and Twitter. 

She interviewed Gary Bloom, thyroid cancer survivor, ThyCa Co-Founder, and Executive Director, and Alan Ho, M.D., Ph.D., medical oncologist at Memorial Sloan Kettering Cancer Center. 

Earlier, hundreds of thyroid cancer survivors had challenged a cancer survivor’s column in the Huffington Post expressing the opinion that thyroid cancer is an easy cancer to have. They made clear how difficult a thyroid cancer journey can be, and fatal for some. 

"Especially for this disease, the survival numbers don't really tell the entire story about what patients have to go through," said Dr. Ho. He explained some of the “true hardships and costs” that patients experience. 

"We don't see cancer as a competition from disease to disease," said Gary Bloom. "The only competition we would see is against the disease -- all of us as survivors are trying to live."

Read the complete article.

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No Cancer Is Easy!

 We believe that no cancer is a good cancer. We want there to be early detection and cures for all. 

Thank you also to everyone who has given out thyroid cancer awareness materials. We invite you to download free awareness flyers from our Raise Awareness page. 

These free flyers include: 

  • Thyroid Cancer Is Not a “Good” Cancer
  • Top Ten Things To Know about Thyroid Cancer 

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 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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Spreading the Word: More than 2,500 Have Shared the Huffington Post Article on Facebook and Twitter

Thank you to everyone who has already shared the informative article titled “Why You Should Stop Calling Thyroid Cancer ‘Good Cancer’.” 

You’re invited to tell others about it, too. 

Read and share this important article

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Comments from Thyroid Cancer Survivors 

From a Letter from Sherry W. 

There is a huge misconception that Thyroid Cancer is a "Good Cancer" to have if you were to get cancer in the first place. I will admit that even I was a bit guilty of that at first. 

When I was first married, I beat the early stages of cervical cancer. When I got diagnosed with Thyroid Cancer 15 years later - I didn't want to be a pain or worry to any of my family members …as a young, active Mom of twin girls, I figured - let's just cut this out and get on with my life. 

Little did I know almost 4 years ago; what a roller coaster ride I would have. The cancer was everywhere and had obviously escaped encapsulation. This apparently quick and “easy surgery” … turned into a neck dissection. I had a damaged vocal cord and cancer around my left vocal cord. At another center, the surgeon had to remove the remaining vocal cord. I was in the hospital for 11 days. I had to learn to manage my trach and suction…and to swallow and eat again. 

Even through all this, my team was amazed at my sense of humor and positive outlook. Long story short, I am now trach free (after having it for 15 months) but live with vocal cord paralysis, and severe obstructive breathing condition, which means my days of doing the things I loved are gone.  I now have to get dental cleanings every 3 months due to dry mouth and salivary gland damage due to the high dosage of Radioactive Iodine. 

My cancer is still with me. I have an aggressive and rare type. I will be closely monitored! 

I've lost a lot because of this cancer, but never my will to fight, educate, advocate and add a splash of humor. I AM a warrior and WILL be a cancer survivor once again! 

(Editor’s Note: ThyCa encourages all thyroid cancer survivors to work closely with your treatment plan to development an appropriate short-term and long-term management plan. For many of us, that means lifetime monitoring.) 

From a Blog Post by Sarah Boston, D.V.M. 

Sarah Boston is a thyroid cancer survivor and veterinarian in Florida. These are excerpted from her post on www.drsarahboston.com with her permission. 

Most thyroid cancer survivors have struggled with the perception, both internally and externally, that thyroid cancer is easy cancer. The first thing that most people say when you tell them that you have thyroid cancer is, “That’s good cancer, right?” [or “If you had to get cancer, it’s the one to get.”] 

The majority of people with thyroid cancer have a curable form of cancer. This is partly because most forms of thyroid cancer are slow moving and also because of science… 

Having said that, not all forms of thyroid cancer are [easily managed], not all are curable, and not having a thyroid gland is a real challenge sometimes … many are silently struggling with fatigue and the possibility of recurrence. Some people actually die from thyroid cancer. 

The people that are struggling with recurrence and metastatic disease from thyroid cancer deserve respect and support. Please do not marginalize them. 

More Patients Write… 

Here are a few of the comments by patients in ThyCa’s Facebook and Inspire communities, and through an article shared with ThyCa, in response to the Huffington Post article suggesting that thyroid cancer is easy to have. 

  • I had many people tell me it was "the good cancer," while others basically dismissed it as not even being a cancer. But for me and my family, the illness was both significant and real. The surgery, treatment and follow-up affected all of us. – Melissa G. S. 
  • I often avoid talking about it because I feel like people think I'm playing up the effects it had (and still has) in me because it's the "good" one. – Beth D. H. 
  • …this is not only something we live with forever but it affects us daily. 11 years later, and yes, I too still get anxious every time I see my doc! – Vanessa G.
  • Every single day is a struggle. – Jill G. 
  • Yes cancer in any form is not good but I think the doctors are just trying to allay any fears. I was diagnosed with papillary thyroid cancer last year and had my thyroid removed. So far everything is good. – Jerry P. 
  • Rare forms of thyroid cancer can actually be among the most deadly of all cancers. We totally underestimated thyroid cancer until my dad died from anaplastic thyroid cancer, which is almost always fatal. – Ashley F. 
  • I was diagnosed in late November. Had a TT in early January. I’m now awaiting RAI. I had a lot of support here early on with a post I wrote about lack of support at home. This site [ThyCa Inspire Online Support Community] has made this experience a whole lot easier. – G. 
  • I'm one of the lucky ones who has had a relatively easy time of it. – A.K. 
  • I appear to be a normal, healthy woman but it's always on my mind. I was diagnosed 4 1/2 years ago and just had a recurrence in the fall. I have side effects to the meds too as mentioned in the article. People do forget we are dealing with cancer. – Kathleen O. R. 

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A Physician Comments…
by Ernest L. Mazzaferri, M.D.

(Editor’s Note: Dr. Mazzaferri was a thyroid cancer specialist, past president of the American Thyroid Association, and longtime ThyCa medical advisor. He spoke at many ThyCa conferences. We’re saddened to say that Dr. Mazzaferri passed away in 2013. His comments below are excerpted from the Foreword to the reference book Thyroid Cancer: A Guide for Patients. It is reprinted with permission from the publisher.) 

When you hear that you have cancer, your world starts spinning, not for a moment or two, but for what feels like an eternity. 

Then in a short time, it often comes crashing down around you, as well as upon those who love you and care for you, leaving you depressed, frightened, and in deep anguish… 

After you think about this for more than a heart beat the question is always, "How do I deal with this bad news right now?" The answer is astonishingly simple for most people. You need reliable information about your problem. 

This is not to mean a pat on the head and the trite words, "Don't worry, this is a good cancer." 

It always breaks my heart to hear this. There is no good cancer – at least not according to any patient or family that I ever met. If it's your cancer, how on earth can it be "good"? 

(Read the complete foreword, plus more book excerpts.

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Video: Living With Thyroid Cancer: There Is No Such Thing as a Good Cancer 

Thyroid cancer patients in ThyCa’s support communities speak out in this new video from Vital Options.

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FDA Approves Lenvima (lenvatinib) for RAI-refractory Progressive Differentiated Thyroid Cancer 

February 13, 2015— The U.S. Food and Drug Administration today granted approval to LenvimaTM (lenvatinib) to treat patients with progressive, differentiated thyroid cancer (DTC, including papillary, follicular, and variants) whose disease progressed despite receiving radioactive iodine therapy (radioactive iodine refractory disease). 

Lenvima is a kinase inhibitor, which works by blocking certain proteins from helping cancer cells grow and divide. Lenvima is marketed by Eisai Inc. 

Read more here. 

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Key Questions about Rare Diseases: A TwitterChat 

Many thyroid cancer types are rare and difficult to treat — anaplastic thyroid cancer, medullary thyroid cancer, and variants of papillary and follicular thyroid cancer. 

On Tuesday, February 17, the National Organization for Rare Disorders (NORD) hosted a live TwitterChat in connection with worldwide Rare Diseases Day that takes place on February 28. 

ThyCa volunteers Cheri Lindle and Kathryn Wall represented ThyCa in this event. 

Cheri Lindle is co-founder and co-moderator of ThyCa’s Anaplastic Thyroid Cancer E-Mail Support Group. Kathryn Wall is a ThyCa Board Member, Director of ThyCa Local Support Groups, and co-facilitator of the ThyCa Raleigh, North Carolina, Support Group. 

Here are questions from the TwitterChat, plus a few of the comments.

  • How long did it take you or your loved one to get a rare disease diagnosis? Why can it take a long time?
     
  • What is the most fundamental way in which a rare disease has affected your life?
    • Sometimes it results in a disconnect between doctors and patients that can affect their trust.
    • Had to start over. Lost my job; independence.

  • How can advocacy groups help people with rare diseases get an earlier diagnosis?
    • Advocacy groups support/educate patients + physicians, direct research 
    • Provide education to physicians
       
  • What are the most urgent challenges facing the rare disease community? What do you want people to know? 
    • Awareness. Research. Support. Treatment. But, in no particular order.
    • Orphan drug patents expiring, may end up costing a lot more
    • Funding, and open minded doctors. Doctors who are open to learning from their patients, doctors who will listen deeply
       
  • At what point should a patient seek out a specialist
    • Encouraging patientsto register when diagnosed with a rare disease can build awareness & lead to development of better treatment
       
  •  Can you share any encouraging stories of people who are trying to make a difference – through advocacy or other means? 
    • ThyCa will award new research grants in 2015. We have already awarded 47 grants to researchers in 5 countries  

ThyCa: Thyroid Cancer Survivors' Association, Inc., is pleased to support Rare Diseases Day. Some thyroid cancers are rare, including medullary, anaplastic, and variants of papillary and follicular such as tall cell, Hurthle cell, and others. 

Rare Disease Day is coordinated by EURORDIS (Rare Diseases Europe; see ) with U.S. sponsorship by the National Organization for Rare Disorders

Please join us in recognizing this important day by visiting these web sites to learn more about rare diseases and Rare Disease Day. Share this important recognition with friends, and family. 

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The Meddie Memoirs Project
By Bill McClain
a.k.a. William Kenly 

Dear Fellow Meddies,

A few nights ago, Dave K suggested we all put our medullary thyroid cancer (MTC) thoughts into stories or poems and put them into a book.

I agreed to be the focal point, come up with guidelines, get it edited and then published. We want to publish it by the 18th International Thyroid Cancer Survivors’ Conference, in St. Louis, Missouri, on October 2-4, 2015.

The objective is twofold, to give us veterans of MTC an outlet to express our deepest thoughts (which is therapeutic and helps healing) about the effects of cancer in our lives, and to provide insight and understanding to those who read this book.

Here are a few of the guidelines. Contact me for more.

  1. Everyone connected to the MTC Journey is invited to contribute.
  2. Each personal story will be on your choice of an aspect of the MTC journey. Possible topics to consider include the medical aspect, the hospital experience, how people around you react to your cancer, the financial part, trials and drugs, how some people get closer and some people withdraw, how your perspective and horizon changed, the challenges of being a caretaker, new relationships with death and dying, fear, hope, etc.
  3. It can be a story, a poem, photographs or drawings.
  4. The length can be anything up to 2,000 words.
  5. The deadline is May 1, 2015, in my mailbox.
  6. Submissions must be as an attachment to an email, and must be in WORD format.
  7. I will pay for the publishing. We will have a foreword stating that this is your work, not mine.
  8. All proceeds will be contributed to ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Meddies, dig deep into your hopes and fears and thoughts. What would you like to say?

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Anaplastic Thyroid Cancer Research Update 

Cancer researchers at Mayo Clinic’s campus in Jacksonville, Florida, have identified a molecule that they say is important to survival of anaplastic thyroid cancer (ATC). The molecule (Stearoyl-CoA desaturase 1 (SCD1)) also seems to play a role in a wide range of cancers. 

“We now have some hope for treatment of this cancer, which is arguably the most lethal solid tumor known to medicine,” says John Copland, Ph.D., a cancer biologist and the study’s senior author. “Although ATC is rare — accounting for only 1 to 2 percent of thyroid cancers, it is responsible for up to 39 percent of all thyroid cancer-related deaths.” 

“Currently, there are no therapies for ATC that lead to prolonged survival, but I think combining an SCD1 inhibitor with a cocktail of other agents, all of which have dramatically different targets and approaches, may work,” says co-author Robert Smallridge, M.D., an endocrinologist who treats thyroid cancer. The Mayo researchers have developed SCD1 inhibitors and are testing the agents in different tumor models.

Read more here.

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From our E-Mail Inbox 

From California …
I was diagnosed with thyroid cancer in December 2014… Thank you, your website is very informative!!

From South Carolina …
Thank you very much.  My daughter is 24 and has thyroid cancer.  We have used the low iodine diet as the meal plan and the materials have guided us every step of the way.  

We are appreciative of ThyCa more than words can express.  Thank you for your great work and for the information you provide! Best to you and ThyCa!

From Australia…
Just want to say a huge thank you for the booklet I received in the mail today. The fact that you reach out to people as far away as Australia is amazing and makes me feel that I'm not alone in this journey. Thank you! XO

From California …
You and your website had been great help to me....really glad I found your site!!!! Very helpful and made me feel better knowing I can get so much needed info in one spot…

From South Carolina…
We are a nonprofit hospital and have recently built a cancer center with our facility, which is now opening an informational library for our patients and their family members. Would you be able to send bulk information? 

From Texas…
I’m a thyroid cancer survivor. I was diagnosed with papillary thyroid cancer at age 38 in 2013. I would like to get free literature to share with friends, co-workers, and family.

From Illinois…
I work at a medical center. Our unit works a lot with post-op thyroidectomy patients and would love to be able to increase awareness about thyroid cancer. If we can get flyers with information we will do our part to make sure more people get the information. 

(Editor’s Note: ThyCa is happy to mail free materials to medical professionals, centers, and individuals. We greatly appreciate everyone’s help in educating patients and caregivers, and raising awareness.)

From Yvonne…
I was diagnosed by biopsy of an enlarged thyroid which was abnormal and did not cause pain. My mood changed because of fear and my families, at home, work, and church felt my stress.…. Now I live to love the life I have after papillary thyroid cancer. 

From Australia…
I was diagnosed with thyroid cancer 3 years ago at age 59…I have had my thyroid removed, 2 radioactive thyroid ablations, and another operation to remove 8 lymph nodes in my neck. Blood tests show that I still have microscopic traces of cancer…It is hard for other people to understand about thyroid cancer…I don’t think any cancer is a good one.

From Washington…
I would like to receive some of the free brochures that you offer to use at an Informational Health Day that I will be facilitating…It will be held at the VA Medical Center in Seattle…It will be targeted to all women veterans, female employees, and female visitors to our facility.

From Rachel…
Thank you very much for the information. It is and will be very helpful throughout my process. 

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Video: Dr. Raeburn Explains Thyroid Surgery, Including Minimally Invasive Techniques 

This presentation is one of more than 25 informative videos from the 17th International Thyroid Cancer Survivors’ Conference. 

Christopher D. Raeburn, M.D., is a Surgeon at the University of Colorado School of Medicine at the University of Colorado Anschutz Medical Campus. 

Learn from Dr. Raeburn plus 20 more thyroid cancer experts through the videos and webinars on ThyCa’s YouTube Channel

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It’s ThyCa’s 20th Anniversary Year! 

You’re invited to get involved: 

For more ways to help, visit our How To Help page.

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Yoga and More, March 14th Fun and Fundraiser for ThyCa

SOOTHING YOGA CLASS   *   SNACKS   *   Musical Guests: THE CHAI NOTES!

Date: Saturday March 14, 2015
Time: 2:30 - 4:30 p.m.
Location: The Living Seed Yoga Center, New Paltz, New York
Hosted by: Donna Sherman 

Invited Donation: $25. Every penny goes to ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org

Can’t come but want to donate? Contact me and I will walk you through making a donation in honor of this event. Want to donate more than $25.00? Please do! 

Click here for more details event.

Thank you, Donna! 

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New ThyCa Support Groups Form in the Bahamas, Connecticut, Kansas, New Jersey, and Oklahoma 

Welcome to our newest local support groups! 

The new support group in Freeport, Grand Bahama Island, The Bahamas, will hold its first meeting on Thursday, March 5, at 7 p.m. Thank you to Elaine Farquharson for starting this group. 

Welcome to the new group, in New Haven, Connecticut. Its first meeting will take place on Thursday, April 16, from 6 p.m. to 7:30 p.m. Thank you to Charlene Campbell, A.P.R.N., for starting this group.  

Thank you to Daria Jerauld for starting groups located near each other in Kansas and Oklahoma. Daria has been a ThyCa volunteer for many years, including serving on our Toll-Free Number Team. She also started a support group in Iowa, where she previously lived. In addition, Daria has contributed delicious recipes for the next edition of ThyCa’s free Low-Iodine Cookbook. One of them was featured as a Low-Iodine Recipe of the Month. 

The new group in Bergen County, New Jersey, is facilitated by Kerri Slivka. Thank you, Kerri!. 

Local support groups now provide free support in 8 countries: United States, Australia, The Bahamas, Canada, Colombia, Costa Rica, The Philippines, and United Kingdom. 

ThyCa support 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. 

To find all the groups, and the contact for help in starting a group, click here

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Video: Thyroid Fine Needle Aspiration: What Do I Do After a Malignant or Indeterminate Result? 

This presentation is one of more than 25 informative videos from the 17th International Thyroid Cancer Survivors’ Conference. 

Sharon Sams, M.D., is a Pathologist at the University of Colorado School of Medicine at the University of Colorado Anschutz Medical Campus. 

Learn from Dr. Sams plus 20 more thyroid cancer experts by watching/listening to the videos and webinars on ThyCa’s YouTube Channel.

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Free Seminars— Mark Your Calendars! 

  • March 7, Lafayette Hill, Pennsylvania, near Philadelphia. Free presentation about levothyroxine by David Burgoon from Akrimax. He will speak at the monthly meeting of ThyCa NW Philadelphia at 10:30 a.m. Akrimax makes Tirosint, a T4 medication in a gelcap formulation used for thyroid hormone replacement and supplement therapy. 
  • 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. 

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Visit our One-Click Events Calendar 

For 2015 Thyroid Cancer Events.  Reach this handy page with just one click from our Home Page. 

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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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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 provide our services to 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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Low-Iodine Recipe of the Month 
Contributed by Elisa G.

Marinade for Chicken Breasts (or other chicken)

Mix together in a gallon zip-lock plastic bag, (or other container that closes) 

4 chicken breasts (or other chicken)
2 cut-up oranges with juice (put the orange peels in bag also)
1 teaspoon fresh ginger (may use dry ginger also)
I chopped clove of garlic
1/4 cup olive oil
1/4 teaspoon thyme
1/4 teaspoon of poultry seasoning 

Keep the mixture and chicken in the refrigerator and mash the contents in bag (or other container) frequently during the day. These are great on the grill or seared in a pan. 

Elisa writes, “My husband has metastatic thyroid cancer and has had to eat the low iodine diet a number of times. Your cookbook has been extremely helpful to me, as his wife, who prepares the recipes to make a grueling diet a little more palatable.” 

Thank you, Elisa! We will include this recipe and your other 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

Joining together online, through our webinars, 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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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! 

Please share this Bulletin with your family and friends. If you would like to suggest topics or contribute an article, please contact us at publications@thyca.org

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Your Donations Support Thyroid Cancer Research—and More 

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 8 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. 

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.  


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