ThyCa NEWS NOTES – January 2013
In This Issue:
- New Record Total: Over 60,000 People Will Be Diagnosed with Thyroid Cancer in 2013 in the US
- Free Thyroid Cancer Webinar, Thursday, January 24, 2013
- January Is Thyroid Awareness Month
- ThyCa To Award 3 New Thyroid Cancer Research Grants
- Thank You!
- Latest News about Nexavar (sorafenib)
- Orphan Drugs – A Milestone Day
- Wondering about the Types and Stages of Thyroid Cancer?
- Support Group Speakers and More Support Group News
- Videos To Watch
- Webinar on Hypoparathyroidism/Hypocalcemia
- Emotions Experienced by Cancer Survivors and Families: From a New Book
- Free My Butterfly—Read Tina’s complete story
- Stay Connected and Informed
- Free Newsletters and Guestbook
- Low-Iodine Recipe of the Month
- Are You a Member of ThyCa?
- Follow Us on Facebook and Twitter
- Every Day
- About ThyCa NEWS NOTES and ThyCa
A new record total of 60,220 people will be diagnosed with thyroid cancer in 2013 in the United States, reports the nonprofit ThyCa: Thyroid Cancer Survivors’ Association, based on information from the American Cancer Society and the U.S. Department of Health and Human Services.
Thyroid cancer continues to be the fastest increasing cancer in both women and men. The numbers of new diagnoses will increase 6.6% from last year.
Three out of four people diagnosed with thyroid cancer are women, and the 2013 total of 60,220 people newly diagnosed will include 45,310 women and 14,910 men. A total of 1,850 deaths from thyroid cancer are expected in 2013, compared with 56,460 people newly diagnosed and 1,780 deaths in 2012.
ThyCa: Thyroid Cancer Survivors’ Association urges everyone to learn about thyroid cancer and ask for a neck check at doctor’s appointments. People in all age groups from children through seniors can be diagnosed with thyroid cancer.
ThyCa’s free awareness and educational materials are available to patients, professionals, and the public everywhere in the world, by mail and by download. Materials are available in English, Chinese, French, Japanese, and Spanish. In addition, ThyCa’s free online newsletter subscriptions are available through www.thyca.org/guestbook.htm. Currently, people in 96 countries receive ThyCa services and resources.
ThyCa invites everyone to partner with ThyCa in Thyroid Cancer Awareness Month, a worldwide observance that ThyCa sponsors each September, and to become involved in year-round awareness campaigns. Details, tools, and tips are on our Awareness page.
We are honored to present a free live Webinar with ThyCa medical advisor Gregory Randolph, M.D., at 3 p.m. ET on Thursday, January 24, 2013.
Dr. Randolph will speak and answer your questions about thyroid surgery and re-surgery.
To register and watch/listen to this free presentation, and ask questions from your own computer, go to our Webinars page..
Gregory Randolph, M.D., is Director of the General Otolaryngology Service and Director of the Thyroid and Parathyroid Surgical Service at Massachusetts Eye and Ear Infirmary, which he joined in 1986. A graduate of Cornell Medical College, he has been actively involved in the development and use of recurrent laryngeal nerve (RLN) monitoring during thyroid surgery.
Dr. Randolph travels internationally to share knowledge about new technology and procedures. He has made repeated trips to the Ukraine with the Children’s Chernobyl Project, an organization that provides surgery and treatment to children with thyroid cancer due to radiation exposure.
Jan Halzel, Pharm.D. will moderate this Webinar is. Dr. Halzel is with Biogen Idec, a biotechnology company. She is a co-moderator of ThyCa’s Medullary Thyroid Cancer E-mail Support Group, has moderated ThyCa’s entire webinar library. She is a member of ThyCa’s Medical Advisory Council.
Each January, the American Association of Clinical Endocrinologists sponsors Thyroid Awareness Month, for all thyroid diseases. ThyCa is proud to support this observance
For raising awareness year-round, including January’s Thyroid Awareness Month and September’s Thyroid Cancer Awareness Month, get AACE Neck Check cards, free in bulk from ThyCa. Share them with your friends and relatives.
Click here for details about how to request cards & more free awareness materials.
We invite researchers around the world to apply for ThyCa’s three 2013 Thyroid Cancer Research Grants. Preliminary grant proposals are due by January 31st to the American Thyroid Association (the online application form is at www.thyroid.org). ATA’s expert panel will select the winning proposals.
Thanks to our donors’ wonderful support, ThyCa has proudly awarded new research grants each year since 2003, to researchers in France, Germany, Sweden, Switzerland, & United States. Read more on our Rally for Research page.
We all share the dream of cures for all thyroid cancer. Thank you for your support!
Thanks to your wonderful support through your volunteering, your donations of goods and services, and your financial support throughout 2012, ThyCa continues to strengthen and extend our services.
In 2012, we provided public services campaigns of awareness for early detection; our free handbooks and numerous other educational materials in 5 languages; our free online, telephone and in-person support groups and one0-to-one support services; and dozens of educational events, ranging from our Webinars to seminars, workshops, and the annual International Thyroid Cancer Survivors’ Conference.
Together, we can do even more in 2013!
On January 3, Reuters and Medpage news reported that in a Phase III clinical trial, the drug Nexavar (sorafenib) significantly improved progression-free survival in patients with metastatic papillary or follicular thyroid cancer resistant to radioactive iodine treatment. Nexavar is made by Bayer/Onyx. The study will be further reported at a future scientific meeting. Our web site www.thyca.org will add information.
The National Organization for Rare Disorders (NORD) notes that 30 years ago, on January 4, 1982, the Orphan Drug Act became federal law, to encourage the development of treatments for all rare diseases, including rare thyroid cancers. NORD notes the support of NIH (National Institutes of Health) & FDA (U.S. Food & Drug Administration) in this effort.
Thank you to NORD for your tremendous efforts on behalf of everyone coping with rare diseases!
We have details here.
And download or ask us to mail you our free handbook Thyroid Cancer Basics. Its 50 pages are packed with information from thyroid cancer expert physicians, plus helpful tips on coping, from thyroid cancer survivors and caregivers. It’s available in English and in Chinese. Visit our websiteto download it, or to ask for a mailed copy.
This handbook and all our print materials are also free in bulk to medical professionals to give to your patients.
The ThyCa Jersey Shore University Medical Center Support Group has a tremendous lineup of speakers for 2013. Meeting dates, speakers, & topics, are here on the support group’s web page.
And ThyCa has 3 more local support groups in New Jersey, plus groups all around the United States and in Canada, Costa Rica, and Philippines!.
The local ThyCa 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.
Lots of groups meet every week. Check out the meeting details, contact information for the facilitators, and more, at our Support Groups page.
Want to help start a group in your community? ThyCa can help you. See the same support group’s page for contact information.
- “Thyroid Cancer – it’s NOT the good cancer” is a new video from Bite Me Cancer, founded by Nikki Ferraro. In this 5-minute video, several survivors share their experiences.
- Medullary Thyroid Cancer Journey Stories. Four brief videos, with MTC survivors and a caregiver.
- Neck Check Video Public Service Announcement. A 30-second video urging neck checks.
On Monday, January 28, 2013, the Hypoparathyroidism Association invites you to its free Webinar titled “Hypoparathyroidism: Now That You Have It, What Do You Do?” Speaker is Anne Schafer, M.D., Endocrinologist, University of California at San Francisco School of Medicine.
(Below are excerpts reprinted with permission from Childhood Cancer Survivors: A Practical Guide to Your Future, 3rd edition, 2012. The authors, Nancy Keene, Wendy Hobby, and Kathy Ruccione of www.childhoodcancerguides.org examine issues common to most cancers, though not specifically on thyroid cancer. These issues relate to navigating the health care system, transitions and relationships, insurance, employment, and a variety of medical issues, It is written for both survivors and their families. Much is relevant to adult survivors as well.
You will probably experience a range of strong emotions as you adjust to your after-cancer life; these can include fear of recurrence, anxiety, guilt, and grief, as well as gratitude and joy. Some survivors experience these reactions even if they remember very little—or even nothing—about their cancer experience. Knowing that other survivors and members of their families share these emotions can help you feel less along.
Fears of recurrence
Survivors and their parents experience a whole spectrum of feelings about possible relapse. Some people say they never think about it. They acknowledge it could happen, but they say, “I’ll deal with it if it happens.” It no longer seems to be a part of their daily, weekly, or monthly reality. Many feel anxious when an anniversary date approaches or it is time for a medical checkup. And some, even many years after treatment, still have nightmares or anxiety attacks that may interfere with daily life….
You may be surprised to find that your feelings about recurrence vacillate over time. You may go through a period of fearfulness, followed by a long time when you do not think about cancer…..
Some survivors and some parents of survivors find that they continue to have deep fears of recurrence over an extended period of time. For others, fear and distress are less about recurrence and more about the emergence of late effects. If you find that any of these concerns interfere on a regular basis with your daiy life, get some mental health support. Individual or family counseling and support groups help to reduce isolation, allow sharing of suggestions for dealing with survivorship issues, and can help channel strong feelings in constructive ways. Mental health professionals can help you prevent problems from arising or deal with them if they do appear.
Anniversaries can be times of pain or joy and sometimes an inexplicable mix of both. There are different anniversaries for everyone: for some it is the date of diagnosis, while for others it is the last day of treatment. Some survivors celebrate the 5-year remission date. Whether or not any of these anniversary dates are “marked,” they are likely to touch off some kind of emotional reaction—and this is normal.
For families of survivors with few or no long-term effects from their treatment for cancer,, anniversaries are sometimes forgotten and sometimes celebrated. Some families file the memories away and skip rituals that tie them to the memories of hard times. Others remember and give thanks for their life and good health….
Cancer affects everyone in the family—often in different ways. It helps if family members share their feelings so they can create their own rituals to cope with or celebrate anniversaries. And each family should decide for itself when it is time to continue the tradition or let it fade into the past.
Read Tina Ordieno’s’s complete story, Parts 1 and 2, now on our web site. Thank you, Tina, for sharing your story!
People in more than 96 countries are now receiving ThyCa’s free education, support services, and mailed materials. Our web site has information and free downloadable materials in English, Chinese, French, Japanese, and Spanish.
We invite you to join our worldwide network. We want to help you stay connected and informed. 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.
Cinnamon Almonds (like the ones you buy at a fair or the mall kiosk)
½ Cup sugar
½ Cup brown sugar
1 ½ teaspoons ground cinnamon
4 Tablespoons water
2-3 Cups almonds (unsalted)
1 teaspoon vanilla
Melt the sugars, water, and cinnamon over low heat. Bring to a boil and cook until the syrup threads. Remove from the heat and add vanilla. Put the nuts in a bowl, pour syrup mixture over the nuts, and stir with a fork until coated. Spread the nuts on a greased cookie sheet (or use parchment paper). Bake at 250 degrees F for 45 minutes. Cool, then enjoy! It’s a great snack and dessert.
Thank you, Liz, for contributing this recipe. We will include it 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 email@example.com.
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, click here.
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 firstname.lastname@example.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.
Please share ThyCa News Notes with your family and friends. For permission to reprint in another electronic or print publication, please contact us at email@example.com.
We welcome your suggestions and submissions for articles. 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, Pat Paillard, Liz R., 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 Thyroid Cancer Awareness Month, a worldwide observance, each September, as well as year-round awareness campaigns.
Contact us for free awareness materials and information about our free services, special events, and research fundraising and thyroid cancer research grants. E-mail to firstname.lastname@example.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.