Free Thyroid Cancer Webinar on January 24, 2013 Features Gregory Randolph, M.D.
We are honored to present a free live Thyroid Cancer 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.
ThyCa Urges Neck Checks, Provides Free Awareness Materials and Support Services
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.
“When found early, thyroid cancer is usually treatable, so early detection is a key,” notes ThyCa Executive Gary Bloom, a thyroid cancer survivor. “Many thyroid cancer survivors first become aware that they may have cancer when they notice a nodule on their lower neck. Others notice changes in their voice or breathing or swallowing. Most thyroid nodules are benign, but some are cancer.”
“A neck check by a medical professional can be as simple as touching the neck or watching the patient swallow,” adds Bloom. “This can be done very quickly, but those few seconds could make all the difference when it comes to thyroid cancer. Most thyroid cancer is treatable, but some thyroid cancers are aggressive and difficult to treat.”
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 provides free awareness and educational materials to patients, professionals, and the public anywhere 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 here. Currently, people in 96 countries receive ThyCa services and resources.
Free services and events include support group meetings, online groups, one-to-one support, Webinars, seminars, workshops, and the annual International Thyroid Cancer Survivors’ Conference. The 16th International Thyroid Cancer Survivors’ Conference will take place on September 27-29, 2013, in Philadelphia, Pennsylvania.
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 at on our Awareness page.
ThyCa: Thyroid Cancer Survivors’ Association, Inc., is a nonprofit 501(c)(3) organization of thyroid cancer survivors, family members, and health care professionals dedicated to education, communication, support services, awareness for early detection, and thyroid cancer research fundraising and research grants. For more information, e-mail to thyca@thyca.org, call toll-free 1-877-588-7904, write to PO Box 1545, New York, NY 10159-1545, or visit our web site.
Contact: Cherry Wunderlich, outreach@thyca.org, 301-493-8810,
Director of Outreach and Publications, ThyCa: Thyroid Cancer Survivors’ Association, Inc.
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: Over 60,000 People Will Be Diagnosed with Thyroid Cancer in 2013 in US
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.
Free Thyroid Cancer Webinar, Thursday, January 24, 2013
Mark Your Calendar!
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.
January Is Thyroid Awareness Month
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.
ThyCa To Award 3 New Thyroid Cancer Research Grants
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!
Latest News About Nexavar (sorafenib)
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.
Orphan Drugs – A Milestone Day
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!
Wondering about the Types and Stages of Thyroid Cancer?
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.
Support Group Speakers and More Support Group News
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.
Webinar on Hypoparathyroidism/ Hypocalcemia
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.
Emotions Experienced by Cancer Survivors and Families: From a New Book
(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.
Anniversary reactions
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.
Free My Butterfly—Read Tina’s Complete Story
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.
Low-Iodine Recipe of the MonthContributed by Liz R
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 recipes@thyca.org.
Are You a Member of ThyCa?
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, click here.
Follow us on Facebook and Twitter
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!
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.
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 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.
In This Issue:
- FDA Approves COMETRIQ™ To Treat Medullary Thyroid Cancer
- Proposals Due by January 31, 2013, for ThyCa’s 3 New Thyroid Cancer Research Grants
- Raising Awareness in Oregon
- ThyCa Again Accepted into the Combined Federal Campaign
- Free My Butterfly
- Stay Connected and Informed
- Free Newsletters and Guestbook
- Every Day: Free Webinars
- Webinar Library Adds New Webinar with Erik K. Alexander, M.D.
- Thank You and Invitation
- Follow Us on Facebook and Twitter
- Low-Iodine Recipe of the Month
- Are You a Member?
- Every Day
- About ThyCa NEWS NOTES and ThyCa
FDA Approves COMETRIQ™ To Treat Medullary Thyroid Cancer
On November 29, 2012, the U.S. Food and Drug Administration approved Cometriq (cabozantinib), earlier known as XL184) to treat medullary thyroid cancer that has spread to other parts of the body. Cometriq received orphan-product designation by the FDA because it is intended to treat a rare disease or condition. This drug is marketed by Exelixis.
Cometriq is a kinase inhibitor that blocks abnormal kinase proteins involved in the development and growth of medullary cancer cells. This the second drug to be approved by the FDA for the treatment of metastatic medullary thyroid cancer (the other is Caprelsa). We’ve added more information about Cometriq here.
Proposals Due by January 31, 2013, for ThyCa’s 3 New Thyroid Cancer Research Grants
We are proud to announce the 11th year of our research grants program, with grants open to young researchers and institutions worldwide. An expert panel of the American Thyroid Association reviews proposals and selects the grant recipients.
We are grateful to all of our generous donors who make these grants possible. Donations to date in support of research range from $1 to $10,000, whatever people can give. Thank you!
Together we accomplish far more than we can individually. Read more about the grants, and the Rally for Research, here.
We all share the dream of cures for all thyroid cancer. Thank you!
Hello ThyCa!
You guys sent me some materials a couple months ago for an upcoming health fair at my workplace, Wildhorse Resort and Casino in Pendleton. Oregon. I also printed off some more of your documents offered on line and cut up some of the brochures for a display.
I wanted to let you know that those materials were put to excellent use! On Tuesday November 27, 2012, we had our annual health fair and I talked to almost 200 people in 6 hours. We had water and hand-held mirrors available and I got most attendees to do a self neck check following the instructions on the AACE neck check card.
I raised awareness of how fast thyroid cancer is increasing and told everyone I talked to to ask for a neck check at their next doctor’s visit. A lot of people had never heard of thyroid cancer. I shared my story starting with my diagnosis 4 years ago with most people who stopped by and emphasized that early detection is key and thyroid cancer can be very treatable.
Thyroid cancer incidence is rather high in this region, so I am happy that I had a chance to raise awareness and reach so many people. Several people had a friend or family member who had had thyroid cancer and I encouraged them to take additional materials to pass along to make more people aware of your excellent web site and resources available.
Also, the Spanish version was very popular with several of our employees who speak English very well, but having the material in their native language made it even clearer and more appealing to read.
I hope to have a table at the health fair every year and our organizer is very enthusiastic about it. It was one of the more popular presentations. I am saving the display board for next year to put in front of our nurse’s office during the month of September. Thank you again for the materials!
Sincerely,
Caitlin Heath
ThyCa Again Accepted into the Combined Federal Campaign
ThyCa: Thyroid Cancer Survivor’s Association is once again accepted into the world’s largest workplace giving campaign (ThyCa’s CFC # is 11675). Federal civilian, postal, and military employees are able to choose ThyCa as a recipient of their workplace donations through the Combined Federal Campaign (CFC).. Thank you to everyone who contributes to ThyCa.
Free My Butterfly
By Tina Odierno of Virginia
To all the people who helped me through these troubling months: my family, my friends, and, of course, my work family. I am truly blessed to have such amazing people in my life.
I’m 24 years old, a healthy 24-year-old, or so I thought. The months of August and September have come and gone. I’ll never get those months back. I never knew that my eyes could be opened to what truly matters in life until it happened.
The end of July came and I was already 3 months late for my regular ultrasound on my thyroid. I’d had nodules for a few years so I wasn’t worried about it. I also had a biopsy 4 years ago.
I couldn’t miss work for a doctor’s appointment, so I kept putting it off. I finally got the ultrasound scheduled for a Friday that I had off work. Friday came and I had my mom come with me to the appointment. I felt more comfortable having her there with me. The technician called my name and I greeted him with a smile along with a “how are you”.
We walked back to the room. I lay down, awaiting the gel that would be covering my neck. I relaxed as he pressed the probe in different places on my neck. After the last screen capture, I was all done. I wiped the gel off (but still managed to get it in my hair!) and left.
A week went by, so I was confident that nothing was wrong. I got a phone call from my doctor, saying that he wanted me to get a needle biopsy done at a pathology office. Because I’d had one a few years earlier, I didn’t think it would be something serious.
When I got to the pathology office my eyes studied the “bed” that I had to lie on. The doctor walked into the room, introducing herself. She asked me numerous questions about my health such as: hair loss, dry skin, fatigue, weight loss/weight gain. Then she asked me to lie down on the “bed.” She put some sort of numbing cream on my neck and the process began. I felt pressure in my neck as she pushed the needles into my skin. The monitor showed the size of the nodules. I glanced at it a few times.
After the procedure, she left the room, it seemed like she was gone for years. My gut told me something was wrong, that it shouldn’t take so long to look at results.
The doctor finally came back into the room with a serious look on her face. I was thinking, “oh, no, what could it be?”.
“A lot of the characteristics look like Papillary Cancer.”
What? CANCER?
I heard the word cancer and thoughts went racing through my mind. My mind was thinking about a million different things. Is the cancer serious? Am I going to die? How big is it? There’s no other feeling like it.
We left the pathology office. My neck was sore from the biopsy; I gently rubbed it, wondering what was going to happen to me. I could barely eat after the procedure, because I was nervous, but I acted like my normal self, smiling and happy. I couldn’t let myself be down and out about it.
My regular doctor followed up with me, telling me that surgery was a must. He made me an appointment with a surgeon; I heard great things about the surgeon.
I slept all the way to the appointment at the regional medical center. The office was on the second floor. The elevator ride seemed to last forever, maybe because I was thinking too much. I signed in and paid my doctor visit fee, which was another thought on my mind…money. The nurse called me back, getting all my physical stats.
My surgeon walked into the room, shook my hand, examined my neck, and discussed the surgery. He explained the procedure and how long I would be in surgery. My surgery date was a week later (the day after my brother’s birthday).
I became anxious as my surgery date got closer. I wondered how I’d feel after surgery and how well my body would handle it. The night before, I couldn’t sleep. I had to be at the hospital by 5:15 a.m. I tried sleeping on the way over, but that didn’t happen. I couldn’t sit still in the car. My mind kept thinking about that word “CANCER”.
I made my final update on Facebook before going into surgery: “Last update before surgery..love u all..keep ya’ll posted.”
I didn’t get to reply to anyone’s comments, because the hospital staff was quick to prepare me for surgery. My mom stayed with me for five minutes and then was asked to leave. Many different staff members asked questions. My IV was put in. The nurse put some medicine in my IV. “This will relax you”, she said.
Before I knew it, I was feeling drowsy, “I feel it,” I said. That was the last thing that I remember before surgery. The surgery took 3 hours. The staff updated my family on how I was doing and how much longer it would be.
I woke up and remember only two things. Two nurses were looking at my medical record and saying, “24?! You look like you’re 12!!” I giggled at that comment. I was rolled up to my room. I remember freaking out because my family wasn’t there, and the nurse assured me that they’d arrive shortly.
After the anesthesia wore off, my neck was sore. I became sick twice. I had nothing but liquids that day. The nurses gave me Tums to help my calcium levels. My dad told me that I had a small cancer and they got it all. At about 3 a.m., one of the doctors who helped perform the surgery came and talked with me.
My surgeon came and talked with me, looked at my incision, asked me how I felt, and explained what would happen after I was better. He made a follow-up appointment. I was released at 5 p.m. that day, I was excited. I couldn’t wait to get home. My body was exhausted, I slept a lot that day; actually, every day for a while.
My follow-up appointment went great. The doctor was impressed with how good my incision looked. He told me there were TWO tumors, not one. Wow! He then discussed the Radioactive Iodine, I thought to myself, “I’ve fought this hard thus far!” My appointment was in Kingsport.
I followed a low-iodine diet for two weeks for treatment. I was miserable that whole two weeks. I craved pizza the entire time. I did cheat one time on the diet; I ate a snack wrap.
My treatment day finally came, I swallowed a small pill. I rode home with my parents and after we got home, I couldn’t be around them. I had to stay in my room and away from them for a few days. I’m very close to my family, so it was difficult for me to be quarantined. I started feeling sick to my stomach later that day, so I slept. The next morning, I felt sick. I was in the bathroom and passed out. My brother came to the rescue; when I awoke, I couldn’t stand up. My brother picked me up. For me, the RAI was more difficult than the surgery.
I started my thyroid medicine. I take it every day at the same time, at 5:30 a.m. My body scan came back clean. I was able to return to work in late October. It felt as though centuries had gone by before then. I returned to work with my head held high, knowing I had beaten cancer and remained positive.
The purpose of this story is to inspire anyone who is going through difficult times and of course to the awesome cancer patients out there. Be positive and keep fighting. Never let anything or anyone bring you down. You’re never alone in this world. There are others going through the same exact situation as you.
Special thanks to:
Missy V. for being so caring and having that dinner for me, you’re a blessing.
My family, I couldn’t have gotten through this cancer without you!
My friends, for the sweet comments and text messages
My awesome boss!
My Walmart family—you guys make my days brighter; how could I live without you?
ThyCa, for the wonderful information you provide
People in more than 96 countries are now receiving ThyCa’s free education, support services, and mailed materials. Our web site has information and 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.
Listen, and learn from experts, anywhere you are in the world. All 11 webinars, covering a variety of thyroid cancer topics, are available free.
For more events, visit the Calendar of Events.
Webinar Library Adds New Webinar with Erik K. Alexander, M.D.
You’re invited to watch/listen to the new Webinar, Understanding the Afirma Gene Expression Classifier in Testing Thyroid Nodules.
Erik K. Alexander, M.D., explains how this test helps reduce unnecessary thyroid surgeries, by determining whether a thyroid nodule is benign or cancerous if the result of the fine needle aspiration is indeterminate. Dr. Alexander is an endocrinologist at Dana Farber Cancer Institute and Brigham and Women’s Hospital, Boston, Massachusetts.
Dr. Alexander maintains the largest U.S. registry of consecutive thyroid nodules evaluated and aspirated via a multidisciplinary approach, with data from over 6,000 consecutive patients with clinically relevant thyroid nodules. Most recently, Dr. Alexander has led a national, multi-center study validating the Afirma gene expression classifier for thyroid nodule evaluation.
To watch/listen to this free presentation, from your own computer, wherever you live in the world, go t our Webinars page.
We are grateful that more than 450 dedicated volunteers helped this year, making possible all of these accomplishments, and many more.
With your help, we can do even more. We invite you to make ThyCa part of your holiday giving this season. We welcome donations by mail, or online.
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Low-Iodine Recipe of the MonthContributed by Daria Jerauld of Iowa
Three Peanut Butters
Doctored-Up Natural PB:
Dump one jar natural Peanut Butter into your food processor, oil and all. Add 3/4 teaspoon noniodized salt (more or less to taste or depending on your dietary needs to avoid sodium). Add 2 tablespoons white sugar (more or less to taste, or depending on your dietary needs to avoid sugar). Or try using agave syrup if you like; use less, because it’s sweeter than sugar). You could substitute artificial sweetener here if you need to. Zap away with the food processor. It will blend so that the oil doesn’t separate, and the added salt and sugar will make it tasty. Pour it back into the jar. Grab your permanent marker, write Low-Iodine on the lid, and pop it into the fridge.
Honey PB:
Follow the same directions as above, but instead of the white sugar, add three tablespoons of honey. Grab your permanent marker and write Honey Low-Iodine on the lid and pop it into the fridge.
Chocolate PB:
Follow the same directions as the first Peanut Butter. Add add two heaping tablespoons of cocoa. Since cocoa is dry, you might want to add a teaspoon of canola oil. Increase your sugar a bit, since cocoa is not sweet. Blend away. This version will be darker than the others, so grab your marker and write Low-Iodine on the lid and put the jar into the fridge. You’ll know that it’s chocolate from the color!
Use these make a good old-fashioned Peanut Butter ands Jelly sandwich for lunch. Wrap it up and pack your lunch bag with a banana, an apple and your PB&J. Enjoy! Mix it up by changing around the types of jellies and jams. One day use the doctored up PB and another day try the honey PB. For a more decadent treat, try a chocolate PB and sliced banana sandwich!
Thank you, Daria, for contributing these recipes and many more. We will include them 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.
Are You a 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.
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!
About ThyCa NEWS NOTES
Copyright (c) 2012 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: Leah Guljord, Caitlin Heath, Daria Jerauld, Tina Odierno, 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. Contact us for free awareness materials and information about our free services and special events. E-mail to thyca@thyca.orgcall toll-free at 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visiri our website.
The U.S. Food and Drug Administration today approved Cometriq (cabozantinib) to treat progressive, metastatic medullary thyroid cancer. Cometriq received orphan-product designation by the FDA because it is intended to treat a rare disease or condition.
Cometriq is a kinase inhibitor that blocks abnormal kinase proteins involved in the development and growth of medullary cancer cells. The safety and effectiveness of Cometriq were established in a clinical study involving 330 patients with medullary thyroid cancer. Treatment with Cometriq increased the length of time a patient lived without the cancer progressing (progression-free survival) and, in some patients, reduced the size of tumors (response rate).
Exelixis expects to have Cometriq available by late January. In the meantime, patients can enroll in the company’s Expanded Access Program (EAP). Information on the EAP can be obtained by calling (855) 253-3273 or going to Exelixis’s Cometriq website.
Exelixis plans to provide comprehensive access and reimbursement services through a program called Exelixis Access Services. Details can be obtained by calling 855-253-3273 or visiting the Cometriq website at www.cometriq.com. The website also has full prescribing information for Cometriq.
Cometriq is the second drug approved to treat progressive, metastatic medullary thyroid cancer in the past 2 years (the other drug is Caprelsa from AstraZeneca). Medullary thyroid cancer is rare, diagnosed in about 4 percent of the 56,460 people who will be diagnosed with thyroid cancer in the United States during 2012.
For more information about MTC and all types of thyroid cancer, free on-demand Webinars with experts, ThyCa’s 12 Online Support Groups for each type and situation with thyroid cancer, local support groups, free publications, and more, visit the web site of ThyCa: Thyroid Cancer Survivors’ Association, Inc.
In This Issue:
- ThyCa To Fund 3 New Thyroid Cancer Research Grants in 2013
- ThyCa Research Grant Programming to Pass 1 Million Dollars!
- A Tribute to Ernie Mazzaferri, M.D.
- A ThyCa Welcome
- A Writer at a Survivors’ Conference
- Thyrogen Supply Fully Restored Globally
- Did You Know?
- Thank You, Caregivers!
- Stay Connected and Informed
- Save the Date
- Follow Us on Facebook and Twitter
- Low-Iodine Recipe of the Month
- Are You a Member?
- Every Day
- About ThyCa News Notes and ThyCa
ThyCa To Fund 3 New Thyroid Cancer Research Grants in 2013Grants Open to Researchers Worldwide
Proposals Due by January 31, 2013
We are proud to announce the 11th year of our research grants program, with grants open to young researchers and institutions worldwide. ThyCa will award 3 new grants for thyroid cancer research in 2013.
Each grant will be for 2 years. One grant is for research on follicular-cell-derived thyroid cancer (papillary, follicular, anaplastic, and variants). Another is for research on medullary thyroid cancer. The third grant is for research on any type of thyroid cancer. It is named The Ric Blake Memorial Thyroid Cancer Research Grant, in memory and honor of ThyCa co-founder Ric Blake.
The winning grant recipients will be selected by an independent expert panel of the American Thyroid Association (ATA). ATA is the professional association of clinicians and researchers specializing in thyroid diseases. The grant application guidelines are on ATA’s web site (www.thyroid.org).
We are grateful to all of our generous donors who make these grants possible. Donations to date in support of Thyroid Cancer range from $1 to $10,000. What all of these donations have in common is they represent what each of us could give. Thank you! Together we accomplish far more than we can individually. Read more about the grants, and the Rally for Research.
ThyCa Research Grant Programming to Pass 1 Million Dollars!
We are very pleased to share that with the funding of the grants mentioned in the article above, ThyCa will have funded more than 1 million dollars. Congratulations to all of us for making this milestone happen.
Since the beginning, ThyCa has relied on the support and friendship of many in the medical community who’ve advised and helped us every step of the way. Ernest L. Mazzaferri, M.D., a longtime friend and medical advisor has been an avid supporter of our work from the beginning, not to mention a huge draw at our conferences.
On Saturday, October 20th, 2012, we honored Dr. Mazzaferri’s longtime support and friendship at our 11th Annual Dinner/Auction Fundraiser for Thyroid Cancer Research as part of the 15th International Thyroid Cancer Survivors’ Conference in Itasca, Illinois.
Due to an illness, Dr. Mazzaferri was unable to attend. His daughter, Patti Atchison, R.N., and her husband, Jim, joined us for a special evening and tribute to her father.
We thought you would enjoy reading what the tribute meant to Patti and her family:
“While my father is a humble man, it was very hard for him to not join all of you again. It was my distinct honor and pleasure to be with you, along with my husband, Jim, in my father’s place.
It was a powerful experience to meet all of you, representatives of all the patients and caregivers he cared for during his long career.
Honestly, in our family we would tease that patients were the unseen face at the table, like another sibling, only one with special needs: health care. We all understood and were in agreement that we could wait while Dad tended to them.
Sure, there were moments of jealousy, as our lives were often interrupted, but they were always fleeting and surpassed by the overwhelming sense of commitment and compassion for those ‘extra faces at our table’, those extra family members …
I encourage all of you to keep up this wonderful work because this support group, ThyCa, is unique and remarkably functional compared to most. In a cancer group it is always difficult due to the mortality rate, but ThyCa seems to have embraced the survivors, the spouses, and the losses much better than most. It is a tribute to all of you. Keep it up!!!
I am going home next week and will bring the plaque to Dad and Mom, and will give it to them in person.
It was a fabulous evening and one I will remember forever!”
A ThyCa WelcomeBy Bridget Corcoran
(Editor’s note: We’re pleased to share the warm welcome from Bridget Corcoran on Friday morning of the 15th International Thyroid Cancer Survivors’ Conference in October.)
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My name is Bridget Corcoran, and I’m from here in Chicago, specifically Arlington Heights, for all you local folks. I’m one of the co-facilitators of the ThyCa Chicago Support Group because, like many of you, I am a thyroid cancer survivor. I was diagnosed with papillary thyroid cancer back in 2008, just one month after turning 21.
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This is my 3rd conference and I’m thrilled this weekend will bring hundreds of people, including many 1st timers, together to share about their thyroid cancer.
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We will come together from more than 40 states, Washington DC, Canada, Mexico, and the United Kingdom.
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ThyCa is about education, support, resources, and research for a world free of thyroid cancer. I was lucky enough that my surgeon gave me the ThyCa wallet card and brochure from the start, which helped me prepare for all the things that come with a thyroid cancer diagnosis. That then led me to see that there were conferences, workshops, and online and local support groups through ThyCa.
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A cancer diagnosis is hard at any age, but ThyCa helped show me that I’m not the only person with thyroid cancer, nor am I the only young person. I am just one of the many faces of thyroid cancer. I think this conference is great since it brings together those newly diagnosed and those that have been survivors for 40 years. You will see that you are NOT alone on this journey.
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This conference is for us. We are a community — all of us together will make this conference successful and worthwhile. Since there are so many sessions to choose from—all great, by the way—I suggest you check out some sessions you normally wouldn’t go to, because you might really benefit from them.
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I like to emphasize that the physicians are giving their time here and throughout the year, to help us understand our cancer, and ultimately to become better patients. So be sure to express your thanks to them, because the conference wouldn’t be anything without them!
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I really believe in giving back and paying it forward, so I encourage everyone to take some ThyCa materials — wallet cards, neck check cards, anything, since it’s up to us as survivors to spread the word about all the good ThyCa does. Doing that helps us grow, allowing us to reach and help more people.
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I really commend each and every one of you for coming to the conference. This is just one step you’re taking to educate yourselves about your cancer, which is the fastest growing cancer in terms of incidence rate, and I’m sure that you’ll end up educating others along the way.
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Finally, we all must give a HUGE thanks to the speakers and volunteers for donating their time as well as travel costs! I think we also must thank ThyCa’s Executive Director, Gary Bloom, for all the hard work he puts in to make ThyCa what it is. So, be sure to thank the volunteers when you see them, because the conference wouldn’t exist without them!
A Writer at a Survivors’ ConferenceBy Aimee Spevak, M.P.H.
Member, American Medical Writers Association
(Note: On the Thursday afternoon before the 2012 Conference, ThyCa sponsored a free writer’s workshop titled “Covering Thyroid Cancer.” We plan to offer this workshop again on the Thursday before the 2013 Conference in Philadelphia.)
At first I was unsure about my place at the conference. I am not a thyroid cancer survivor, but a medical writer, and I’m currently working on a short project about the use molecular markers in thyroid cancer diagnosis and treatment. I attended the writer’s workshop on “Covering Thyroid Cancer” on Thursday, which proved to be an informative experience. I liked that the workshop was small and informal, and that there were survivors there to give firsthand perspectives. I was invited to return to the conference that weekend.
When I returned on Saturday, I was amazed and impressed with the size and scope of the conference. Not only were the medical presenters leading experts in the field (some of whose names I recognize from the research I have done for my current project), but the attendees comprised a group of friendly and open survivors, empowered to learn more about the state of thyroid cancer treatment and upcoming advances in the field. There was even a workshop on the use of molecular markers in thyroid cancer! Lucky for me, and impressive as well that attendees are learning about these cutting-edge technologies.
As a freelance medical writer, it’s rare that I have an opportunity to interact with the experts whose published papers I scour for up-to-date information. Even more rare is the opportunity to be among the patients who will ultimately benefit from the work that I do. I feel lucky to have had the opportunity to attend one day of the International Thyroid Cancer Survivors’ Conference, which gave me an opportunity to talk with survivors and hear their personal stories and gain a human perspective on the thyroid cancer epidemic.
Thyrogen Supply Fully Restored Globally
On November 13, 2012, Genzyme announced that the supply of Thyrogen (thyrotropin alfa for injection) has been fully restored. Genzyme is able to supply all patient demand globally. ThyCa’s web site has articles and more information about Thyrogen, used for preparing for some tests & treatment in people with papillary & follicular thyroid cancer and variants.
The world’s first local Thyroid Cancer Support Group met in Massachusetts in 1996, led by ThyCa Co-Founder Ric Blake.
Every year since then, new ThyCa Support Groups have formed.
Today, there are local ThyCa support groups in more than 90 communities in the United States, Canada, Costa Rica, and Philippines. Find out whether there’s a group near you, get in touch, and attend meetings if you can. Many groups sponsor physician guest speakers, and other specialists.
For the complete list, plus all the groups’ web pages, click here.
November is National Family Caregivers Month, and around the world, we honor family and friends who are giving your support, caring, and time.
Care of the Caregiver is an article with helpful tips on how caregivers can help themselves while helping others; read it here www.thyca.org/atc/support/caregivers/
Thank you also to all the wonderful caregivers who volunteer for ThyCa! Caregivers are welcome in all our events and programs — support group meetings, seminars, workshops, conferences, Rally for Research, Thyroid Cancer Awareness activities, and more.
Visit www.thyca.org to find out about events and volunteer opportunities.
Patients, caregivers, and health care professionals in more than 96 countries are now receiving ThyCa’s free education, support services, and mailed materials. Our web site has information and downloadable materials in English, Chinese, French, Japanese, and Spanish.
Free Newsletter and Guestbook
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: www.thyca.org/support/guestbook/
Every Day: Free Webinars
Listen, and learn from experts, anywhere you are in the world. All 9 webinars, covering a variety of thyroid cancer topics, are available free at www.thyca.org/news/webinars/
For more events, visit the Calendar of Events on our website..
Spread the word!
The 16th International Thyroid Cancer Survivors’ Conference
September 27 – 29, 2013
Philadelphia, Pennsylvania
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Low-Iodine Recipe of the MonthContributed by Betty F.
Spectrum Frosting
1 Cup Spectrum Vegetable Shortening
16 ounces Powdered Sugar
1 teaspoon Vanilla
1 teaspoon Butter flavor
Water
Blend the Spectrum vegetable shortening and the sugar until creamy
Add vanilla and butter flavor
Add a little(1 teaspoon) water at a time
Blend until it has the desired consistency.
If Chocolate Frosting is desired add 1/4 Cup of Cocoa
Add any flavoring you like instead of the butter. For example: maple, coconut, almond, banana.
Betty writes, “I was looking for a frosting to go with “Nina’s Chocolate Cake”. I make the cake in cupcakes. I’ve adapted this recipe from Grandma Theresa’s frosting. Thank you for all the recipe ideas. It is very much appreciated.”
Thank you, Betty, for contributing this recipe and many more. We will include them 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.
Help us sustain, strengthen, and extend our services. We invite you to become a member of 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. Members receive our Membership Messenger newsletter.
Membership is open to everyone worldwide. You may become a 1-year ThyCa member ($25), 2-year member ($45), or lifetime member ($225). 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, is what 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!
About ThyCa NEWS NOTES
Copyright (c) 2012 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: Bridget Corcoran, Betty F., Leah Guljord, Pat Paillard, Aimee Spevak, 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. Contact us for free awareness materials and information about our free services and special events. E-mail to thyca@thyca.orgcall toll-free at 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visi tour website..
Proposals Due by January 31, 2013
ThyCa: Thyroid Cancer Survivors’ Association Inc., announces the 11th year of its research grants program, with grants open to researchers and institutions worldwide. ThyCa will award 3 new grants for thyroid cancer research in 2012.
Each grant will be for 2 years. One grant is for research on follicular-cell-derived thyroid cancer (papillary, follicular, anaplastic, and variants). Another is for research on medullary thyroid cancer. The third grant is for research on any type of thyroid cancer. It is named The Ric Blake Memorial Thyroid Cancer Research Grant, in memory and honor of ThyCa co-founder Ric Blake.
The winning grant recipients will be selected by an independent expert panel of the American Thyroid Association (ATA). ATA is the professional association of clinicians and researchers specializing in thyroid diseases. The grant application guidelines are on ATA’s web site. The deadline for submitting a proposal summary to ATA is January 31, 2013.
ATA’s Research Committee will rank proposals according to their scientific merit. The authors of selected proposals will be notified by the ATA as early as March; they will be invited to submit complete grant applications, from which the grant winners will be selected.
ThyCa is committed to supporting research with the goal of cures for all thyroid cancer. The ThyCa Grants began in 2003. They are the first grants to be funded entirely by thyroid cancer patients, caregivers and friends. ThyCa has awarded more than $900,000 for thyroid cancer research, to researchers in France, Germany, Sweden, Switzerland, and the United States.ThyCa has awarded grants to researchers at the following institutions;
• Beth Israel Deaconess Medical Center (Harvard Medical School), Boston, Massachusetts
• Cancer Center Karolinska, Stockholm, Sweden
• Cochin Institut, Paris, France
• Harvard Medical School, Boston, Massachusetts
• Johns Hopkins University School of Medicine, Baltimore, Maryland
• Memorial Sloan-Kettering Cancer Center, New York, New York
• Ohio State University, Columbus, Ohio, and Medical University of Gdansk, Poland
• Penn State Hershey Cancer Institute, Hershey, Pennsylvania
• Rush-Presbyterian-St. Luke’s Medical Center, Chicago, Illinois
• University of California Los Angeles/Veterans Affairs West Los Angeles Health Care System, Los Angeles, California
• University Hospital Basel, Basel, Switzerland
• University Hospital Duesseldorf, Duesseldorf, Germany
• University of Arkansas for Medical Sciences, Little Rock, Arkansas
• University of Illinois at Chicago, Illinois
• University of Texas M.D. Anderson Cancer Center, Houston, Texas
• Washington Hospital Center/Georgetown University, Washington, D.C.
To find out more about the ThyCa Research Funds and the annual Rally for Research, please visit our Research Funds page.
Thyca invites everyone to join us in our quest to find a cure for all thyroid cancer.
The 15th International Thyroid Cancer Survivors’ Conference drew record participation, bringing together more than 500 people from 39 states Canada, Mexico, and United Kingdom, for 3 days of learning from experts and sharing experience.
The annual conference is sponsored by the nonprofit ThyCa: Thyroid Cancer Survivors’ Association, Inc.
People from teenagers to seniors, coping with all types of thyroid cancer (papillary, follicular, medullary, anaplastic, variants) came to Chicago, Illinois, on October 19-21, 2012, for more than 100 sessions with over 70 speakers. Speakers included more than 40 distinguished medical professionals, plus specialists in insurance, employment issues, mental health, and coping skills for well being, as well as survivors and caregivers affected by every type of thyroid cancer.
Top thyroid cancer clinicians and researchers, including numerous ATA members and ATA President Bryan Haugen, M.D., spoke and answered questions about all aspects of treatment from diagnosis through long-term monitoring, as well as clinical trials for advanced thyroid cancer and a special session on Facing Incurable Thyroid Cancer: Portraits of Courage. Two speakers were recipients of ThyCa Thyroid Cancer Research Grants.
New topics at this year’s conference included solutions to issues with eyes and tearing, as well as skin care, for people receiving both conventional treatments and new targeted therapies.
Also new this year were the ThyCa Memorial Video created by Cheri Lindle of Oklahoma, co-founder of ThyCa’s Anaplastic Thyroid Cancer E-Mail Support Group, and the ThyCa Memorial Quilt created by longtime ThyCa volunteer Leah Guljord of Florida.
Among attendees’ comments:
• “This was my first conference and I was not at all sure what to expect. The conference far surpassed any of my expectations! I had never met another “meddie” and here I met many. I immediately felt a “kindred spirit” with these wonderful people. It was nice for me to see how well others are coping with this disease, hear their stories, feel their support and know that I too can do as well. We are all in this together! The speakers were excellent and very knowledgeable. I really did get a lot of valuable information out of the talks as well as good contacts. I am hoping to see everyone next year in Philadelphia.”
• “Attended the conference and learned so much! I really appreciated the fact that the speakers were so willing to stay after their sessions to talk with people whose questions hadn’t been answered. Met many lovely people with whom I have much in common…. all in all, great experience!”
• “It was a wonderful conference!!!”
The 11th Annual Dinner/Auction Fundraiser held Saturday evening during the Conference was a tremendous success, raising $40,000 for thyroid cancer research, with inspiring talks including tributes to longtime ThyCa friend and Medical Advisor Ernest Mazzaferri, M.D., who was honored at the dinner. This wonderful support helps ThyCa continue to fund thyroid cancer research—now totaling more than $900,000. ThyCa is pleased to announce that we will award three new research grants in 2013.
ThyCa is also pleased to announce that the 16th International Thyroid Cancer Survivors’ Conference will take place in Philadelphia, Pennsylvania, on September 27-29, 2013, in conjunction with September’s annual Thyroid Cancer Awareness Month, the worldwide observance sponsored by ThyCa with support from partnering organizations and individuals.
For more information about the Conference and hundreds of other ThyCa events, free webinars with experts, the Rally for Research, Thyroid Cancer Awareness Month, and free materials for patients and professionals, visit our website.
In This Issue:
- RAI Survey Invites Your Input
- Free Webinars with Experts: Learn from Your Home or Office, Anytime
- My Father
- Spotlight Still Shines on Thyroid Cancer Awareness
- Butterfly Bash: Fun and Fundraising for Thyroid Cancer Research
- 70 Speakers, Over 100 Sessions at the 15th International Conference
- Dinner/Auction Research Fundraiser Funds Thyroid Cancer Research
- Next year — Philadelphia, Pennsylvania!
- Free Seminar with Physicians in Fresno, California
- Congratulations!
- Stay Connected and Informed
- Have You Visited the Web Site Lately?
- Follow Us on Facebook and Twitter
- Low-Iodine Recipe of the Month
- Join Us
- Every Day
- About ThyCa News Notes and ThyCa
The Radioactive Iodine Treatment-Related Survey, developed by Drs. Myssiorek and Scharf, is still open. If you received RAI as part of your thyroid cancer care, you’re invited to take part, at www.thyca.org/surveys/raisurvey/. Thank you! Together, we’re helping to improve knowledge and care for people with thyroid cancer.
Free Webinars with Experts: Watch/Listen Anytime
Learn about thyroid cancer in 9 free 1-hour Webinars with experts. You can watch/listen at any time, as many times as you wish, wherever you live in the world.
Visit ThyCa’s free webinar library.
Save the date! January 24, 2013: Free Webinar on Papillary and Follicular Thyroid Cancer Surgery and Re-Surgery, with Gregory Randolph, M.D, ThyCa Medical Advisor.
My father is 76 years old. He was diagnosed with anaplastic thyroid cancer in November 2008. By the time the cancer was discovered it was already terminal and he was told he wouldn’t make it to Christmas. It was the first time the doctors at the hospital had seen this type of cancer first hand, and even they admitted they were out of their comfort zone on this one, but they didn’t let that stop them.
My father went for surgery in December 2008, and we were told that one of two things would happen. When they opened him up they would find that either they couldn’t do anything, in which case he would be back in the ward in an hour, or he’d be down in surgery for several hours while they took out whatever cancer they could.
Fortunately, they were able to remove his thyroid with the tumor, but they had to also take some of his neck muscle and 11 glands from his neck. In the process his vocal cords were damaged so his voice has been affected. Since then he has had to have other surgeries to remove cancerous tissue and has undergone several rounds of follow-up treatment.
We have known from the start that he isn’t going to be cured, that all of this is just to stall the inevitable, but in the time the doctors have been able to give him he has been able to see both my sister and my brother find people they love and get married. He has also been able to meet his new grandson and hopefully he’ll get to meet another new grandchild in January.
From the start he has accepted what the doctors have told us but he has said from the start, “Something was going to get me one day, but I’m not dead yet. So until I am, I’m going to continue to live.”
I honestly think that it has been this frame of mind that has helped him get through everything. Even now he hasn’t let it get him down. I know it’s a pretty cliche thing to say, but he has been inspirational. Even the doctors treating him have commented on how he has kept a positive attitude.
I wanted to share my father’s story with others to show you that even if you don’t receive good news, don’t give up. Live your life for as long as you are able! You may also defy the odds like my father has!
Spotlight Still Shines on Thyroid Cancer Awareness
Thank you to everyone who helped Thyroid Cancer Awareness Month in September set new records for participation! Survivors, caregivers, and friends everywhere urged everyone to “Find It Early.”
Our August newsletter and our Facebook page showcase some of the many creative activities.
Thyroid Cancer Awareness Month, plus the year-round awareness campaigns, shines the spotlight on:
- the need for early detection of the fastest increasing cancer in both men and women,
- the need for treatment and long-term follow-up using expert guidelines, plus
- research for better treatments and cures for all thyroid cancer.
You’re invited to get involved every day! Help the next person “Find It Early,” get free education and support, and connect with others around the world. We all need to work together to heighten Thyroid Cancer Awareness every day!
Get the facts about thyroid cancer, plus free handouts, tips on how to help, and the calendar of events, on our website.
The 2012 Butterfly Bash: Fun and Fundraising in Issaquah, Washington
The 2012 Butterfly Bash for Thyroid Cancer Survivors, created by Tamra Kaufman & Stacie Lacina, took place on October 13th in Issaquah, Washington.
On her Butterfly Bash page, Tamra writes,
“Thyroid cancer has been a very personal disease for me because every day since January 2004, this disease has affected my life. Since then, I have been on a journey to raise awareness and funding for much needed research into this disease not only for myself, but for all other thyroid cancer patients who need and deserve HOPE for a future without cancer!”
To read more, and find out how to support this wonderful fundraiser, click here.
Thank you, Tamra and Stacie!
70 Speakers, Over 100 Sessions at the 15th International Thyroid Cancer Survivors’ Conference, October 19 – 21, 2012, Chicago, Illinois
The Conference is where experts, survivors, and caregivers come together each year to:
- Share the latest advances in thyroid cancer care and research
- Learn skills and information for coping with the many challenges of thyroid cancer
- Meet people with every type of thyroid cancer and every situation
- Become part of a community of people all coping with thyroid cancer
More than 45 distinguished medical professionals confirmed! Speakers include
- 19 Endocrinologists
- 13 Surgeons
- Nuclear Medicine Physician
- 4 Oncologists
- Ophthalmologist
- Dermatologist
- Dentist
- Molecular Geneticist
- Nurse Practitioners
- Social Worker
- Research Scholar
- Cancer Rights Attorney
- Specialists in coping skills and practical issues
Special Events Friday Evening of Conference Weekend
- Snacks and Social Time for everyone, early Friday evening
- Young Adults Get-Together Friday from 7 to 9 p.m.
- Informal Dinners: Medullary Dinner, plus more get-togethers with new friends and old friends.
Visit our website for the Program Schedule, Speaker Biographies, and more details.
Dinner/Auction Research Fundraiser Funds Thyroid Cancer Research
On Saturday, October 20, 2012, a special event at the Eaglewood Resort & Spa in Itasca, Illinois a wonderful evening of connections, camaraderie, and fundraising for Thyroid Cancer Research.
This year we honor our dear friend and long-time contributor, and ThyCa Medical Advisor, Dr. Ernie Mazzaferri.
We all share the dream of research for cures for all thyroid cancer. The net proceeds go to the ThyCa Research Funds. Visit our Rally for Research page to find out how to support research.
Next Year — Philadelphia, Pennsylvania!
The 16th International Thyroid Cancer Survivors’ Conference
September 27 – 29, 2013
Mark your calendar! Spread the word!
www.thyca.org
Free Seminar with Physicians in Fresno, California
Thank you to the physicians who led the Free Seminar on October 13, 2012, hosted by the ThyCa Fresno Thyroid Cancer Support Group and its volunteer facilitators, Anjali Kapoor-Davis and Miriam Delfin. Visit the ThyCa Fresno web page (www.thyca.org/sg/ca_fresno/) for directions to the group’s monthly meeting.
- To the Graves’ Disease and Thyroid Foundation: Graves’ Disease is another thyroid disorder, and this year’s Graves’ Disease Patient and Family Conference will take place October 26 – 28, 2012, in San Diego, California. It’s sponsored by our friends at the Graves’ Disease and Thyroid Foundation. Many physicians will speak. Details are at www.gdatf.org.
- To Kate Farnell: Congratulations to Kate Farnell of United Kingdom, leader of Butterfly Thyroid Cancer Trust of UK, for winning a UK Inspiration Award because of her service.
Patients, caregivers, and health care professionals in more than 96 countries are now receiving ThyCa’s free education, support services, and mailed materials. Our web site has information and downloadable materials in English, Chinese, French, Japanese, and Spanish.
Free Newsletter and Guestbook
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.
Every Day: Free Webinars
Listen, and learn from experts, anywhere you are in the world. Seven important thyroid cancer topics, plus 2 new webinars in September. All 9 webinars are available free at www.thyca.org/news/webinars/
Every Week: Meet and Learn
You’re invited to free Thyroid Cancer Support Group Meetings in dozens of locations. The web pages with details for all the groups are here: www.thyca.org/sg/. If you don’t see a group listed near you, find out how ThyCa can help you start a new ThyCa Support Group. Just e-mail to us atsupport_coord@thyca.org.
For more events, visit the Calendar of Events on our website.
Have You Visited the Web Site Lately?
We’re excited to report that our web site receives more than 400,000 visits per month —more than 14,000 each day. In September, the visits reached a new record high: more than 600,000!
Almost every day our volunteer webmasters make new additions or updates.
More than 650 web pages provide extensive information about all types of thyroid cancer, links to a broad range of free support services, and details about awareness campaigns, as well as fundraising for thyroid cancer research.
The web site has information in English, Chinese, French, Japanese, and Spanish. Recent additions include new handouts (Three Things To Tell Your Friends about Thyroid Cancer, Thyroid Cancer is not a “good” cancer, and the Top Ten Things To Know About Thyroid Cancer); new webinars, new events, and more.
Free downloadable publications include the Free Low-Iodine Cookbook in English, Spanish, and French, plus the Free 50-page handbook Thyroid Cancer Basics in English and Chinese, and dozens more downloadable publications.
Thank you very much to the more than 50 thyroid cancer specialists who provide their input and expertise, to our webmasters Betty Solbjor and Joel Amromin, and to the dozens of volunteers on ThyCa’s Publications and Web Site Teams.
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Low-Iodine Recipe of the MonthContributed by Daria Jerauld of Iowa
Lemon Pasta with Gremolata (substitute for grated cheese)
Gremolata:
Zest of 3 lemons, minced (wash the lemon well first; try to use organic ones)
1 cup fresh parsley, minced
2 cloves garlic, minced
1 Tablespoons olive oil
1 teaspoon noniodized salt
Mix the ingredients well. Refrigerate until use.
Lemon Pasta with Gremolata
1/2 pound pasta — shape of your choice — cooked in salted and lemon-infused water (use Kosher salt)
1/4 Cup olive oil
1 Tablespoon minced rosemary
black pepper to taste
1 lemon — the juice
2 Tablespoons Gremolata
Bring your pasta water to a boil. Add a teaspoon of salt. Juice the lemon and reserve the juice. Remove any pits and toss the lemons into the water. I use the lemons that I have left over from making the Gremolata when I make this dish.
When the water is boiling, add your pasta and cook until done. Drain and return to the pot (toss out the lemons). Add the olive oil, rosemary, pepper and the lemon juice. Toss until coated. Serve up a healthy portion (half of it) and top the serving with 1 Tablespoon of Gremolata. Makes enough for 2 people as a main dish or 4 people as a side dish. Goes great with some lemon chicken and a steamed vegetable.
Thank you, Daria, for contributing this recipe and many more. We will include them 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.
Help us sustain, strengthen, and extend our services. We invite you to become a member of 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. Members receive our Membership Messenger newsletter.
Membership is open to everyone worldwide. You may become a 1-year ThyCa member ($25), 2-year member ($45), or lifetime member ($225). 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, is what makes it possible to sustain, strengthen, and expand our services and outreach.
It takes only 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!
About ThyCa NEWS NOTES
Copyright (c) 2012 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: Leah Guljord, Daria Jerauld, Louise, 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. Contact us for free awareness materials and information about our free services and special events. E-mail to thyca@thyca.orgcall toll-free at 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit our website.
Top thyroid cancer experts from around the United States and Mexico will present the latest research and treatment advances at the 15th International Thyroid Cancer Survivors’ Conference, October 19-21, 2012, in Chicago, Illinois, at the Eaglewood Resort & Spa, 1401 Nordic Road, Itasca, Illinois.
More than 40 medical professionals plus numerous other specialists will cover the latest medical research, insurance and employment issues, and more. Survivor and caregiver roundtables will focus on coping with the disease and sharing with others living with thyroid cancer. The Conference has more than 100 session choices during the weekend.
Scholarships are available on request to cover the $50 registration fee. Anyone interested in thyroid cancer is invited to attend for 1, 2, or all 3 days. Walk-in attendees are welcome.
Sponsor is the nonprofit ThyCa: Thyroid Cancer Survivors’ Association, Inc. The program schedule, speaker list, and further conference details and events during the weekend are on our website, or call 877-588-7904, or e-mail to conference@thyca.org.