ThyCa NEWS NOTES - October 2008
10/2008IN THIS ISSUE:
- Another Great ThyCa Conference!
- Annual ThyCa Conference Draws Thyroid Cancer Survivors, Caregivers, and Leading Thyroid Cancer Experts from 31 States, Canada, and Netherlands -- 2009 Conference To Be Held in Boston, Massachusetts
- A Few Conference Session Notes
- Dinner/Auction Raises More than $30,000 for Thyroid Cancer Research
- Mrs. New Jersey American Beauty 2008 Raises Funds for Thyroid Cancer Research
- ThyCa Is In Combined Federal Campaign
- Low-Iodine Recipe of the Month
- Have You Visited the Web Site Lately?
- Want To Volunteer?
- Become a ThyCa Member!
- Thank You From ThyCa
- Every Day
- Calendar of Coming Events
- About ThyCa News Notes
The 2008 ThyCa Conference: Another Great ExperienceBy Pat Paillard, Philadelphia, Pennsylvania
After last year's conference I was eager to attend this one. ThyCa did not let me down!
I arrived at Lambert Airport in St. Louis, got the hotel shuttle right on time, and proceeded to the beautiful Sheraton Westport Chalet. This hotel had everything right within our reach. The room was exceptionally comfortable and clean, the staff was friendly, and I felt eager to get on with my learning experience.
This year all those who registered were given a bag to carry all the materials they received while going to and from the sessions and I think that was a nice touch. We were also given a floor plan of the hotel so we would know where to find each session, as well as the Program Booklet that explained who each speaker was, and sheets with the time and location of each talk.
This was my second conference, and I have been extremely impressed each time with the knowledge of the speakers, their ease in communicating the information to us, their ability to speak to the thyroid cancer survivors and their caregivers in a way we can all understand, and their patience with all attending their sessions. Also, after each session the speakers would stay and answer individual questions. They take the time to care for people.
Everyone there: the ThyCa committee, the volunteers, the doctors, the other specialists, and the hotel staff made each participant feel welcome, comfortable, and cared for. This was truly a very rewarding experience. All through the weekend I heard nothing but good, positive comments about this conference.
While in the hotel shuttle back to the airport on Monday morning two ladies were sitting across from me talking about thyroid cancer. I couldn't help but ask them if they enjoyed the conference, and, of course, they did. They received a lot of information, I was told. But, would they return next year? Yes, they said they found it helpful. They were from Canada.
My thought -- another wonderful conference! Thank you, ThyCa. Special thanks to the Conference Planning Committee for organizing this event. Great job!
Annual ThyCa Conference Draws Thyroid Cancer Survivors, Caregivers, and Leading Thyroid Cancer Experts from 31 States, Canada, and Netherlands -- 2009 Conference To Be Held in Boston, Massachusetts
Once again, hundreds of thyroid cancer survivors, family members, friends, and health care professionals came together for the annual International Thyroid Cancer Survivors' Conference. The 11th annual conference, held in St. Louis, Missouri, October 17 through 19, 2008, was sponsored by ThyCa: Thyroid Cancer Survivors' Association, Inc.
"We are honored that so many thyroid cancer survivors and their families attended and that so many distinguished experts took part," said ThyCa Executive Director Gary Bloom, a 13-year thyroid cancer survivor.
Attendees came from 31 states, Canada, and Netherlands. Participants covered a wide range of situations with every type of thyroid cancer -- papillary, follicular, medullary, anaplastic, and variants. Attendees ranged from children through seniors. They included people being tested for possible thyroid cancer, people diagnosed and treated within the past few years, some with metastatic disease and in clinical trials or seeking clinical trials of new treatments, survivors successfully treated in clinical trials, and children coping with thyroid cancer and their parents, and long-term survivors.
Highlights of the conference's 110 sessions included 40 sessions led by 25 physicians who explained the latest advances in treatment, long-term testing and follow-up, the potential use of messenger RNA as a marker, recent advances in targeted therapies, and clinical trials testing new treatments.
Physician specialists came from leading medical centers around the country, including the Cleveland Clinic Foundation, Mayo Clinic, Memorial Sloan-Kettering Cancer Center, Ohio State University Medical School, University of Chicago Medical Center, University of Texas M.D. Anderson Cancer Center, Washington University at St. Louis Medical School, Yale University Medical Center, and other major centers.
"We greatly appreciate the experts who gave of their time and knowledge for the well-being of patients," said Bloom. "Thyroid cancer brings many challenges, and requires lifelong monitoring, and both survivors and caregivers benefit tremendously from these interactions with leading clinicians and researchers."
More than 35 additional speakers included two dentists, two psychologists, nurses, social workers, a pharmacist, a nurse, mental health professionals, specialists in complementary approaches to well-being such as Reiki, the Labyrinth, QiGong, Humor and Healing, and general coping skills. Leading peer-support roundtables were survivors of each type of thyroid cancer, as well as caregivers.
Additional sessions led by a social worker, a financial planner, and three attorneys focused on financial and legal issues that can come with coping with cancer or another illness. Session topics included Financial Wellness During Cancer, Choosing and Using Financial and Insurance Advisors, Legal Issues Related to Employment, Legal Issues Related to Financial and Estate Planning, and Legal Issues Related to Social Security and Disability.
For the second year in a row, the conference offered continuing education credits to nurses. More than twelve nurses took advantage of this opportunity, and earned more than 50 cumulative education credits.
Attendees gave high praise, both during and after the conference.
"Amazing that I've learned more in one day here than in 2 years of doctor appointments! Thank You!" wrote one thyroid cancer survivor.
"Great conference, great speakers, with lots of diversity," wrote another.
"Excellent. Thank you so much to all the committee members, presenters. Affordable. Met great people. See you in Boston 2009," wrote another.
Another e-mailed to her online support group after the conference, "I also went to the conference and had a wonderful time. It is not fair that any of us have thyroid cancer, but I must say that you all are the nicest, most caring and interesting group of people you could ever meet."
"Thyroid cancer is one of the few cancers where the incidence rate is increasing," explained Bloom. "In fact, it's now number 6 in women in number of cases diagnosed in the United States. If detected early, it's usually treatable. However, in some patients it can be aggressive and difficult to treat. It's crucial that we provide patient education and support, as well as information about the latest advances in treatment, testing, and clinical trials."
The 12th International Thyroid Cancer Survivors' Conference will be held in Boston, Massachusetts, on October 16 - 18, 2009.
ThyCa: Thyroid Cancer Survivors' Association, Inc. is an international nonprofit 501(c)(3) organization of thyroid cancer survivors, family members, and health professionals, dedicated to education, communication, support, awareness for early detection, and thyroid cancer research fundraising and research grants. For more information about thyroid cancer and ThyCa's free year-round support services, education, and publications, 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 the ThyCa web site.
A Few Notes From 2008 Conference Sessions
Increasing Incidence of Thyroid Cancer:
- 87% of thyroid tumors are under 2 centimeters in size
- An increase has not occurred in large thyroid tumors
- Most increase has been in females; although, also a slight increase in males
- Possible reasons for increase: radiation (for example, increased CT scans), increased diagnostic scrutiny (CT, MRI, ultrasound), unidentified risk factors
Diagnosing Thyroid Cancer:
- Family history
- Physical
- Blood test for TSH (thyroid stimulating hormone)
- Fine needle aspiration: palpate if it's a large nodule; ultrasound guided if it's a small nodule.
- Ultrasound
- Thyroid scan
Fine Needle Aspiration Results Possibilities:
- Nondiagnostic (re-do the test)
- Benign (most nodules)
- Suspicious or indeterminate (microfollociular or cellular adenomas --follicular neoplasm)
- Malignant
Papillary versus Follicular:
- Follicular usually presents later and usually is larger (over 2 centimeters)
- Delay in diagnosis of papillary thyroid cancer can lead to larger tumors, higher rates of metastases, vascular invasion, persistence
Radioactive Iodine (RAI) Decision Following Surgery for Papillary or Follicular Thyroid Cancer:
- Patients in Stage I do not have reduced mortality after RAI; patients in Stage II or higher who receive RAI do have reduced mortality
- Factors considered in the RAI decision include whether the tumor is larger than 1 centimeter, where there are multiple tumors, whether there is tumor spread out of the capsule, whether there are lymph node metastases, whether the tumor is an aggressive subtype, and the patient's history of radiation or family cancer.
How To Raise TSH (Thyroid Stimulating Hormone) Before Radioactive Iodine:
- Thyroid hormone withdrawal: Effective; however, hypothyroidism is constipating and the gut absorbs more RAI
or - Thyrogen injections (recombinant TSH): FDA approved for ablation after surgery; no hypothyroidism; reduced radiation in blood; longer exposure of tumor to RAI; less exposure of bone marrow to RAI.
More Sensitive Testing Now Available for Follow-up Surveillance:
- It's not always necessary to take action to do more treatment when a test shows something
- Surveillance technology is sometimes outstripping what's logical to do
- Many patients outlive their disease
Surgery Issues:
- In Maryland, 75% of the thyroid surgeries are done by surgeons who do fewer than 5 thyroid surgeries per year.
Assessment of Surgeons:
- Does the hospital have a tumor board? (endocrinologists, pathologists, surgeons, radiation specialists who meet to review patient treatmen*t options)
- Plans for long-term surveillance
- Overall comfort with the surgeon and the logic of the opinion and the recommended plan
- Recovery? Ask the surgeon beforehand so there are no surprises.
- Length of hospital stay
- Drain versus no drain
- Postoperative activity restrictions (lifting, driving, other
- Postoperative diet
- Postoperative medications, calcium, etc.
- Postoperative follow-up schedule.
- "Minimally invasive procedures" -- not necessarily an advantage. Procedure used depends on tumor size and extent. Minimally invasive surgery is possible only for 15-20% of patients even with surgeons who recommend it.
- Surgical training: a 6- year residency followed by one year of advanced training. Training starts with a lot of observing.
Thank you to everyone who gave us your session notes. If you would like to share your notes, please e-mail them to publications@thyca.org.
For more information about thyroid cancer, visit www.thyca.org.
Dinner/Auction Raises More than $30,000 for Thyroid Cancer Research
Our 7th Annual Dinner/Auction Fundraiser, held in St. Louis Saturday evening, October 18, was a big success!
Together, we raised more than $30,000 for thyroid cancer research.
Many thanks to all the donors of wonderful items for the auction, to our inspiring speakers Cheri Lindle, Sherryl Pascal, and Rose Twigg, and to everyone who helped plan and organize this wonderful evening. We'd like to especially acknowledge the tremendous contribution of the host St. Louis volunteers, who solicited for numerous auction donations, and contributed greatly to the night's setup, and checkout process. The night wouldn't have been complete with your wonderful effort.
Mrs. New Jersey American Beauty 2008, Thyroid Cancer Survivor, Raises Funds for Thyroid Cancer Awareness Month
ThyCa: Thyroid Cancer Survivors' Association (www.thyca.org) expresses our deep
appreciation to Sherryl Pascal, Mrs. New Jersey American Beauty 2008 and thyroid cancer survivor, for your wonderful awareness and fundraising efforts for Thyroid Cancer Research. Pascal put up a yard sign on her front yard fence for Thyroid Cancer Awareness and Research Fundraising, and presented ThyCa with a check for $10,000 for the Research Funds.
Pascal also attended and participated in the 11th International Thyroid Cancer Survivors' Conference in St. Louis, Missouri, co-facilitated a session on raising awareness, and spoke at the Dinner/Auction Fundraiser.
Thank you so much, Sherryl!
ThyCa Is In the Combined Federal Campaign
ThyCa's CFC # is 11675
Funds Raised Will Provide Education, Support, Resources and Research To Benefit Those with the Most Common Endocrine Cancer
ThyCa: Thyroid Cancer Survivor's Association has once again been accepted into the world's largest workplace giving campaign. Federal civilian, postal, and military employees are again able to choose ThyCa as a recipient of their workplace donations through the Combined Federal Campaign (CFC). This federal employees' charitable giving campaign raises millions of dollars each year for thousands of nonprofits providing health and human services throughout the world.
"Being part of the ranks of the Combined Federal Campaign helps ThyCa provide needed services and research funding to support those who are touched by this life-altering cancer," said Gary Bloom, Executive Director. "Thyroid cancer is one of the few cancers increasing in incidence. It's extremely important to strengthen and expand support services for those affected by it, as well as to increase research to find cures for all thyroid cancer."
ThyCa; Thyroid Cancer Survivors' Association, Inc., is a national nonprofit 501 (c)(3) service organization of thyroid cancer survivors, families, and health care professionals advised by nationally recognized experts on thyroid cancer and dedicated to education, communication, support, awareness for early detection, and thyroid cancer research fundraising and research grants.
Free year-round support services and resources include ThyCa's award-winning educational web site, a Person To Person Network, local support groups coast to coast, regional one-day workshops, ten e-mail support groups, a toll-free survivors' telephone number, an online newsletter, and the expanded 6th edition of the free downloadable Low-Iodine Cookbook. Free ThyCa materials, including the Cookbook, are also available in Spanish.
ThyCa began awarding grants to fund thyroid cancer research in 2003, and has awarded grants each year since then, including two new 2-year research grants in 2008.
Low-Iodine Recipe of the MonthContributed by Laura C.
Easy and Tasty
Tomato-Basil Pasta Salad
3 large ripe tomatoes, coarsely chopped
1/3 cup chopped red onion
¼ cup extra-virgin olive oil
2 Tablespoons red wine vinegar
1 teaspoon minced garlic
½ teaspoon non-iodized salt
½ teaspoon black pepper
¼ teaspoon oregano
12 ounces Rotini Pasta
1 cup fresh basil leaves cut into thin strips
1. Put tomatoes, onion, olive oil, vinegar, garlic, salt, pepper, and oregano in a large bowl; toss. Let stand at room temperature at least 30 minutes or until tomatoes release their juices, tossing occasionally.
2. Cook pasta as package directions. Drain and add to bowl with tomatoes; lightly toss.
3. Let come to room temperature. Add basil; toss.
Serve immediately or refrigerate.
Thank you, Laura! Your recipe will be added to the next edition of the FREE Downloadable Low-Iodine Cookbook. Download the cookbook, with more than 250 favorite recipes from more than 100 generous volunteers.
If you'd like to contribute your favorite recipe or tip to the cookbook's next edition, send it torecipes@thyca.org.
Have You Visited the Web Site Lately?
Our web site has more than 650 pages. More than 50 distinguished physicians plus numerous other specialists give ongoing input and review. We greatly appreciate the wonderful support of these medical specialists.
The web site expands nearly every week. Visit www.thyca.org often for the latest information updates and news about special events.
We welcome new volunteers at any time. To learn about volunteer opportunities, visit our Volunteer page.
We invite you to join ThyCa: Thyroid Cancer Survivors' Association, Inc., to help us sustain, strengthen, and extend our services.
Your membership dues will support ThyCa's efforts to reach other survivors and their families around the world.
You may join as a one-year member, two-year member, or lifetime member.
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, receive support, education, and hope from ThyCa: Thyroid Cancer Survivors' Association.
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.
You're Invited To These Thyroid Cancer Events!
- Thyroid Cancer Support Group Meetings in Your Community
- Free One-Day Regional Workshops. Watch the web site for details. Workshops already being planned for Texas/Southwest in Dallas, Texas, and the Mid-Atlantic (near Washington, DC).
- The 12th International Thyroid Cancer Survivors' Conference
October 16-18, 2009
Boston, Massachusetts
Sheraton Ferncroft Hotel in Danvers
Sponsored by ThyCa: Thyroid Cancer Survivors' Association, Inc.
Visit our website for details.
ThyCa NEWS NOTES
Copyright (c) 2008 ThyCa: Thyroid Cancer Survivors' Association, Inc.
Thank you to Pat Palliard, editor, and Gary Bloom, Laura C., and Cherry Wunderlich for writing, editing, and proofreading this newsletter.
Deadline for articles and news items is the first day of each month. Your suggestions for articles are welcome.
We invite you to send News Notes to your family and friends. News Notes are also published here. For permission to reprint in another electronic or print publication, please contact us at outreach@thyca.org.
ThyCa: Thyroid Cancer Survivors' Association, Inc. is a national non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals. We are dedicated to support, education, and communication for thyroid cancer survivors, their families and friends, as well as to public awareness for early detection, treatment, and lifetime health monitoring, and to thyroid cancer research fundraising and research grants.
Contact us for free awareness materials and information about our free services and special events. E-mail thyca@thyca.org, call 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit the web site.