ThyCa NEWS NOTES - July 200707/2007
In This Issue:
New Support Group Begins Meeting in North Carolina
Story of Hope: My Dad’s (Bill B.) Anaplastic Thyroid Cancer Journey
Thank You, John!
Research Advocacy: ThyCa and the 2007 AACR Scientist-Survivor Program
September Is Thyroid Cancer Awareness Month
Have You Visited the Web Site Lately?
Coming Soon—The 6th Edition of ThyCa’s Free Low-Iodine Cookbook
From the Mailbox
Are You a ThyCa Member?
Thank You From ThyCa
About ThyCa News Notes
Welcome to ThyCa Volunteer Emilie Gilstrap and the newest ThyCa local support group, in North Carolina.
The new group will begin meeting on the second Saturday of every month starting on August 11, 2007, from 10:30 a.m. to noon, at Wesley Long Medical Center, Education Building, Classroom 2, 501 North Elam Avenue, Greensboro, North Carolina. Meetings are free and open to people at all phases of testing, treatment, and follow-up for thyroid cancer, as well as their family members and friends. To find out more about the new group, contact Emilie Gilstrap at firstname.lastname@example.org or 336-430-8066.
The ThyCa Piedmont/Greensboro Support Group has its own page on the ThyCa web site with meeting information and transportation directions. This is the second North Carolina group. Another ThyCa support group meets in Raleigh.
Groups meet throughout the United States, as well as in Costa Rica and Philippines.
It started in October 2006 as a tremendous whirlwind and rollercoaster that I never hope to ride again. A rollercoaster that we’re all looking forward to jumping off soon when my Dad is healthy and well again.
On October 9, 2006, My Dad (the greatest man I ever met - William (Bill) B.) goes to the Ear, Nose & Throat (ENT) doctor in Mississippi to see about finally getting rid of this "cold" he's had off and on for a few months (accompanied by hoarseness, difficulty swallowing and drainage/phlegm). We never expected what was to come of this ENT visit -- not in a million years. They found a lump on his thyroid -- and the doctor immediately took a Fine Needle Aspiration. And the waiting begins –
Results of the biopsy come in on October 13 (Friday the 13th no less!!) and suddenly our worst nightmare comes true – it's malignant. We were all in a state of shock but also comforted somewhat by the thought that thyroid cancer is one of the least aggressive cancers and has a high rate of successful management.
As the days went by, we had done a little research and all of a sudden it was clear to us that there are in fact multiple TYPES of thyroid cancers, and they run the FULL spectrum of outcomes (yes, still one of them enjoys a high rate of success when diagnosed early, yet one type is one of the most aggressive and difficult to cure of ”all” cancers). I'm constantly praying..."PLEASE let it be one of the easy-to-cure ones."
The preliminary biopsy results showed undifferentiated. I later learn that's a nice way of saying Anaplastic (i.e., another hurdle to cross). I'm terrified. Thankfully, the doctor agrees to put us in touch with a team of doctors at a thyroid cancer treatment center in another state. We flew over as soon as they could see us and tried to remain positive and have faith that through God, our doctors, and prayers — we will continue to move mountains and have Daddy well and home soon.
The most recent Hangin’ Tree Golf Tournament in Texas was a big success. The event resulted in a generous donation to support ThyCa’s services, outreach, and research funds. Our special thanks to John Oaks, organizer and host of this wonderful event. We are all most grateful!
ThyCa’s free support services and awareness programs, and our thyroid cancer research grants, are all made possible through the generosity of our wonderful supporters. We thank you for your support.
Research Advocacy: ThyCa and the 2007 AACR Scientist-Survivor Program: An Experience in Collaboration, Education, and Inspiration
By Joel Amromin, ThyCa Los Angeles Support Group Co-Facilitator and Board Member, ThyCa: Thyroid Cancer Survivors’ Association
For the last few years, I have represented ThyCa: Thyroid Cancer Survivors’ Association at a number of forums, ranging from local health fairs to the International Conference of the American Thyroid Association. At those functions, I worked in our booth, distributing ThyCa literature, answering questions from physicians and patients, and fielding requests for more information.
So I was ready to answer the call when asked to represent ThyCa in the Scientist«Survivor Program (SSP) at the Annual Meeting of the American Association for Cancer Research (AACR), being held in Los Angeles in April 2007.
I received an extensive prerequisite reading list that included one book (Genome by Matt Ridley) and several journal articles.
AACR and SSP Background
The AACR Annual Meeting is an opportunity for clinical and laboratory cancer researchers to get together and present papers on their work. The papers range from initial theoretical presentations to detailed results of clinical trials. There were about 6,000 such papers presented in the five days. There were also thousands of posters describing the work of various researchers.
The Annual Meeting is an opportunity for the researchers to exchange ideas and data in the rapidly changing field of cancer detections, prevention, and treatment. The meeting also celebrated the 100th anniversary of the AACR.
The Scientist«Survivor Program (SSP), now in its ninth year, is held concurrently with the AACR Annual Meeting. The approximately 40 SSP attendees represented patient advocates, survivors, and support groups from wide ranges of cancer types, group types (support, advocacy, etc.), and locations, including representatives from Uganda, Israel, and South Africa.
Active participation in the program provided a wealth of opportunities:
- Learning about the latest cancer research advances by attending both AACR technical presentations and special presentations to the SSP attendees.
- Learning from each other through informal discussions and moderated forums. A special SSP dining room and headquarters guaranteed that we would have ample opportunity to talk.
- Learning about and contributing opinions to government meetings on medical privacy issues.
- Obtaining access to the extensive AACR online library of cancer research publications for our respective organizations.
A Better Understanding of What This Thing Called “Cancer” Is
We thyroid cancer patients are generally pretty good at learning about our disease, getting the right diagnostics and treatments, and managing our relatively simple (for most of us) follow-on testing.
But do we really understand what cancer is? Our cancer seems so different from many others. So what makes it cancer, just like the others?
One of the articles we read in preparation for the conference (“The Hallmarks of Cancer,” Hanshan and Weinberg, Cell, volume 100, 57-70, Jan. 7, 2000) described six traits exhibited by all cancers:
- evading programmed cell death (apoptosis)
- ability to generate their own growth signals
- insensitivity to anti-growth signals
- sustained development of abnormal vasculature (angiogenesis)
- ability to replicate without limit
- tissue invasion and metastasis
That’s a pretty straightforward list. Keeping such a list in mind as we study thyroid cancer and go to our own conferences can help organize the wealth of information we absorb. It can also help us see how information regarding other cancers can apply to our own cancer.
(To read the complete article, click here.)
We’re happy to mail free awareness materials on request. For free downloadable awareness flyers, plus information on requesting free materials to be mailed to you, visit our Raise Awareness page.
Top thyroid cancer experts will present the latest research and advances in treatment at the 10th International Thyroid Cancer Survivors’ Conference, October 19 – 21, 2007 in San Francisco, California.
More than 80 sessions, including presentations on the latest medical research, insurance and employment issues, coping with the disease, and sharing with others living with thyroid cancer, will be held at the Sofitel San Francisco Bay Hotel, 223 Twin Dolphin Drive, Redwood City, California.
Anyone whose life has been touched by thyroid cancer is encouraged to attend. Scholarships are available on request. Sponsor is the nonprofit ThyCa: Thyroid Cancer Survivors’ Association, Inc.
Early-bird registration is now available, either online or by mail. The web site also has details about the hotel’s special room rates for conference attendees.
For more information, e-mail email@example.com, call 1-877-588-7904, or or go to www.thyca.org.
Our web site received more than 275,000 visits in June 2007. Our web site now has more than 600 pages. More than 50 distinguished physicians and numerous other specialists give ongoing input and review.
The web site expands nearly every week. Visit F often for the latest updates.
We’re excited to tell you that the expanded 6th edition will soon be on our web site!
The latest edition has more than 250 delicious family-favorite recipes, plus many tips, contributed by more than 100 generous thyroid cancer survivors and caregivers.
The cookbook includes all the recipes from the 5th edition, plus lots of great new recipes.
Watch our web site for the new edition!
“Please send me any information available and thank you for this site. I would like to also help and give back in whatever way I am able to”
“Thank you for providing a site that is a source of information and support.”
“I went to our company sponsored health fair and they detected it looking for thyroid nodules and blocked arteries. I did not have any symptoms at the time…. Please urge everyone to participate in a health fair if they have the chance to….I really enjoy your website! It really helped me understand more about my treatment options and the low iodine cookbook tips were great!!”
From South Dakota…
“I was diagnosed with papillary thyroid cancer in 2007 …. My father also had papillary thyroid cancer …(many years ago). As you can imagine this is a subject of great interest to me and I would like to help increase awareness of thyroid cancer detection. I'm writing to request some awareness brochures to distribute to local physician clinics.”
From New Jersey…
“My boyfriend was recently diagnosed with thyroid cancer…. needless to say, we have had an enormous amount of questions about what he will be going through for the rest of his life. I'm happy to say that we've found your Web site to be VERY helpful and informative, and it has been my primary source of information regarding just about everything - from his surgery to his low-iodine diet to his treatments. For that reason, I must first thank you so very much for everything that you have done and continue to do for those with thyroid cancer and their families and friends! The feeling that we are not alone has been so comforting through it all!”
From the daughter of a survivor….
“I love your low iodine cook book! So far most of the recipes I would totally use normally! I am helping my mom with her low iodine diet.”
Free meetings of local support groups. More than 70 groups throughout the United States, and in Costa Rica and Philippines. The newest local support groups have begun meeting in North Carolina, New Jersey, Tennessee, Oklahoma, and Costa Rica.
Thyroid Cancer Awareness Month.
Plus year-round awareness campaigns and free materials.
September 8, 2007
Pittsburgh Thyroid Cancer Seminar.8:30 a.m. to 4 p.m.
October 19-21, 2007
The 10th International Thyroid Cancer Survivors' Conference.
San Francisco, California. Conference registration and hotel reservations now open.
October 20, 2007.
The 6th Annual Dinner/Auction to Support Thyroid Cancer Research,
San Francisco, California.
We invite you to join ThyCa. Your membership will support ThyCa's efforts to reach other survivors and their families around the world.
We believe that no one should have to be alone when facing thyroid cancer. Our free support services are offered with this as our main goal.
We thank everyone for giving your time and talents to making possible our free services, publications, and events. We’re grateful to you for reaching out to others worldwide, to help connect them with ThyCa’s support services and resources.
Every day, thousands of people with thyroid cancer, and their families, are offered support, education, and hope by ThyCa: Thyroid Cancer Survivors' Association, and your generous support is what makes this possible. It only takes a minute to make a secure donation online in support of ThyCa's work (or you are welcome to donate by mail), so click here to give.
We encourage you to send these News Notes to your family and friends. For permission to reprint in another electronic or print publication, please contact us.
ThyCa: Thyroid Cancer Survivors' Association, Inc. is a national non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals.
We are dedicated to support, education, and communication for thyroid cancer survivors, their families and friends, as well as public awareness for early detection, lifetime health monitoring, and thyroid cancer research fundraising and research grants.
E-mail firstname.lastname@example.org, call 1-877-588-7904, or visit www.thyca.org.