ThyCa NEWS NOTES – December 2007
In This Issue:
Mike’s Medullary Story — The Three Pack
What ThyCa Means To Me
ThyCa News Nuggets
USA Today Articles Focus on I-131 and Thyroid Cancer
From the E-Mailbox
More Comments About the 2007 Conference
Meet Theresa Wickerham, Director of ThyCa Local Support Group Operations
ThyCa Exhibits at Medical Meetings
Thank You To Our Donors
The 2-for-1 “Thanks A Million” Cards
About ThyCa Journeys and ThyCa
In late May 2004, I had what was perceived to be a cardiac incident. I awoke that day not feeling well and checked my blood pressure, which I did regularly. My blood pressure was 220/120.
By the time I got to my family practitioner, he was convinced I was having a heart attack. Off to the emergency room I went, where I spent nearly 3 days being checked extensively for cardiac issues. The doctors were baffled because I was at an optimal weight, was not diabetic, and had excellent cholesterol levels.
The only odd thing they noted was that my calcium level was slightly elevated, which it had been for several years. The cardiologist could not be 100% certain there wasn’t a blockage unless he did an angiogram.
Having dealt with bizarre symptoms for more than 20 years I decided to pass on having the angiogram but to finally find the answer that had eluded myself and doctors for more than two decades.
During this hospital stay, my wife and I began calling friends in the medical field and sharing my bizarre symptoms with them. One friend, who is a nurse practitioner, said my symptoms sounded like textbook symptoms for pheochromocytoma. I mentioned this to the doctor in the hospital and he said I didn’t fit the profile since those folks “are wired out of their mind.”
I mentioned that I was always “hyper,” but he replied this was probably just my personality. He did decide to run a test for hyperparathyroid disease assuming the high calcium, and perhaps some of my other symptoms, were being caused by this. He told me that the results would not be back until long after I was discharged but that I should make plans to see an endocrinologist.
We were referred to an endocrinologist by my family practitioner. As we waited for that appointment, we did our own research. I became quite educated about parathyroid disease and pheos. While the rarity of the pheos seemed to make them an unlikely candidate I was convinced this was the issue.
All the research I did gave validity to the symptoms and spells I had battled for years and which had been dismissed by doctors as me being “high strung, probably borderline hypoglycemic, and under a lot of stress”. This was the story I received over and over for years.
When I finally did get to see the endocrinologist, I mentioned to her that I would like her to test me for pheos. She laughed and said, “you MBA types always like to tell doctors what to do. I would run that test anyway but don’t worry, it will come back negative.” Meanwhile she did note that I was probably suffering from hyperparathyroid disease and possibly a thyroid issue as well since her initial physical exam and ultrasound highlighted some irregularities.
A battery of testing began: Ultrasounds, Nuclear scans, CT scans, Sestamibi scans, FNAs, 24 hour urine, and more blood tests than I had ever thought possible.
When the 24-hour urine test came back showing extremely high levels of catecholeamines, epinephrine, etc. my endocrinologist was in shock, but now realized that the other pieces of the puzzle were painting a picture of multiple endocrine neoplasia, type 2A (MEN 2A).
As we waited for the results of the FNA she did a genetic test for Multiple Endocrine Neoplasia (MEN) 2A. Needless to say, it came back showing I had the 634 mutation. I had also received what I refer to as “the three pack” of diseases: hyperparathyroid disease in all four glands, bilateral pheochromocytomas, and medullary thyroid cancer.
My parents were then tested, and thankfully they were both negative, as was my older brother and his children. My sister refused to be tested, but with both my parents being negative that was probably acceptable.
I was listed as having a de novo mutation and the surgery schedule unfolded.
(Ed. Note. Michael’s story continues on the new Medullary Thyroid Cancer Web Site. Michael also was a speaker at the 2006 ThyCa Conference, as well as our Dinner/Auction Research Fundraiser.)
T —There for you when you need them.
H —Helpful with all sorts of information.
Y — You can depend on support from them.
C —Compassionate and caring people.
A —Always ready to answer your requests.
ThyCa Awards Two New Research Grants
We’re proud to announce the 2007 ThyCa Research Grants, including two new grants and two continuation grants. The new grants were awarded to researchers at Ohio State University, Columbus, Ohio (and Medical University of Gdansk, Poland) and Memorial Sloan-Kettering Cancer Center, New York, New York. The continuing grants go to researchers at Cochin Institut, Paris, France, and Johns Hopkins University School of Medicine, Baltimore, Maryland. ThyCa grants are open to researchers and institutions worldwide.
Thank You, Rally for Research Event Organizers!
Special thanks to the volunteers who organized these wonderful recent events: Cheri Lindle for organizing our highly successful Dinner/Auction Fundraiser at the 10th Thyroid Cancer Survivors’ Conference, Kat Adkins of Texas for organizing a benefit concert to raise awareness and funds, and Phil and Susan Schmidt of Maryland for the 5th Annual Schmidt Open Golf Tournament.
Tim’s Tips Now on the Web Site
In the free Pediatric Backpacks, backpack project developer Tim of Maine shares his story and tells what helped him cope with his thyroid cancer. Visit this page to read Tim’s Tips, plus more stories from families with a child or teen with thyroid
ThyCa Launches New Medullary Thyroid Cancer Web Site
We’re excited to announce the first sections of the new Medullary Thyroid Cancer (MTC) website. The site covers the topics most requested by families coping with medullary thyroid cancer. Patients and caregivers have also contributed their stories. Medullary thyroid cancer survivors and caregivers are developing this site, with input and review from physician specialists.
ThyCa Person To Person Gives One-to-One Support, Matched by Diagnosis
Our Person-To-Person volunteers are serving thyroid cancer survivors around the globe. This free support service helps ensure that no one, no matter where they are, will have to feel alone with their thyroid cancer. Our thanks to Peggy Melton, Coordinator.
10th Conference Draws Record Attendance
We’re thrilled that 500 thyroid cancer survivors, family members, friends, and health care professionals came to the 10th International Thyroid Cancer Survivors’ Conference in October.
Mark the Dates for 2008!
The 11th International Thyroid Cancer Survivors’ Conference will be held in St. Louis, Missouri, October 17-19, 2008. We invite you to download and share the flyer on our web site. Please help spread the word.
Thank You to our Medical Advisors
The newest member of our Medical Advisory Council is Peter A. Singer, M.D., Endocrinologist, Professor of Clinical Medicine, Chief of Clinical Endocrinology, and Director of the Thyroid Diagnostic Center at the Keck School of Medicine, University of Southern California, Los Angeles, California. Dr. Singer served as President of the American Thyroid Association during 2002-2003 and in 2004 was honored as Outstanding Clinical Endocrinologist by the American Association of Clinical Endocrinologists. Thank you to all our Medical Advisory Council members.
ThyCa Medical Advisor Named ATA President-Elect
Congratulations to Kenneth D. Burman, M.D., Director of Endocrinology at the Washington Hospital Center in Washington, DC, on being named President-Elect of the American Thyroid Association.
Web Site Grows
Our web site received more than 270,000 hits in November 2007! The web site now has more than 650 pages. More than 50 distinguished physicians plus numerous other specialists give ongoing input and review. We greatly appreciate their wonderful support. The web site expands nearly every week. Visit www.thyca.org often for the latest information updates and news about our free support services and upcoming special events.
Thank You, Volunteers!
More than 300 dedicated volunteers helped ThyCa reach and serve thyroid cancer survivors, caregivers, health care professionals, and the public around the world this year. Our thanks to all of you.
The cover story in USA Today’s November 19, 2007 issue was one of 4 articles by reporter Steve Sternberg about I-131 and thyroid cancer.
Included are findings from USA Today’s survey, which gathered information via ThyCa’s web site www.thyca.org.
The lead article, on page 1, has links to the other 3 articles.
The survey was posted on ThyCa’s web site during one week in August. It received responses from more than 900 thyroid cancer survivors.
Additional survey results and details will soon be available on ThyCa’s web site.
Thank You for a Great 10th!
A BIG “Thank You” to the entire Board and Conference Planning Committee for a wonderful conference. This was my first conference but it will not be my last.
The presenters were competent, personable, and approachable. The workshops were spot on, covering all of the relevant topics that survivors are looking for.
The dinner/auction was so much fun, and it was very invigorating to see how much the attendees care about ThyCa by their generous donations.
I will be sending in my annual membership and offer my assistance to ThyCa to serve in any needed capacity.
Have a wonderful rest of the year and be well,
- I’m thankful that we have such great speakers!
- Good information, easy to understand
- All sessions helpful
- I really enjoyed the sessions and learned a lot of good info.
- Fantastic get-together — lots of great info.
- Enjoyed the wealth of knowledge. Great delivery!
- Great information
- Everything is very well run. Interaction with patients, caregivers, and MDs was very helpful.
- Each session had key points of value to me.
- Keep up good job!
- Your efforts toward organizing really paid off. Thank you!
Hi to all!
First, I want to thank you, for all you do to help others through your support. We will all be remembered for our efforts, when our time here on earth is through. What more could we ask for?
I’m sure some of you may be wondering why I would take on the position of Director of Support Group Operations. So, I thought I would start with an introduction for those of you who don’t know me.
My journey (as we are all on a journey) with thyroid cancer began when I was a young wife and mother of a 21-month-old and 5-month-old. I was 22 back in 1975 when I went to the doctor for a female infection, only to have him ask how long I had the lump in my throat.
I had surgery the following week and the doctor removed the left side of my thyryoid gland. The tumor was the size of a tennis ball. He wondered how I could swallow, much less talk. The word cancer was shocking. But, when you are young, you feel pretty invincible.
He told me not to worry about it, that thyroid cancer is slow growing and if it came back, it would be at least 20 years. Oh, and he said to use iodized salt. 🙂 Through the years that followed, my OB doctor was religious in taking annual blood tests and sometimes adjusting my dosage. My husband took the approach that I had surgery and was better.
I can’t begin to tell you, except for those of you who have experienced the same, how many times I wondered about different things that were happening, whether it pertained to thyroid cancer, and would it come back. But, I never knew.
I always wondered if I would live long enough to see my children as adults. I had 3 more children after my initial surgery. I also wondered if my children would get it. So many questions left unanswered.
Then in the fall of 1997 and early 1998, I developed a cough that just wouldn’t go away. After antibiotics and lung tests, I had an ultrasound, only to find something again. I had a fine needle aspiration in the doctor’s office and fainted during the excruciating pain. It was nonconclusive.
The doctor hesitated to pursue surgery due to the length of time and scar tissue damage around the vocal cords. But, he said he’d leave it up to me. I just had a feeling (as many of us do) and proceeded with surgery.
The cancer had returned. I had the right side of the thyroid, scar tissue, anbd several lymph nodes removed, as well as 2 parathyroids. One of the parathyroids was transplanted into my shoulder muscle. I had radioactive iodine and was in isolation during a daughter’s high school graduation.
Life went on, but not like before. I took on a new look at everything and wanted to know more this time. I think age has something to do with that. I contacted the American Cancer Society and they sent me some literature. I heard about the ThyCa conference in Chevy Chase, Maryland, in 2000. My sister and I attended.
To be able to talk to someone, finally, after TWENTY- FIVE YEARS WITHOUT EVER KNOWING OR TALKING TO ANYONE WITH THYROID CANCER, was just like Christmas. It was an overwhelming experience. I couldn’t get enough.
So, I started the St Louis, Missouri, support group, in order to be able to bring a little Christmas to everyone during a time of need. I know each of you have a story and I’d love to hear each and every one of them.
To all the support group facilitators, I want to thank you so much for your efforts with support for thyroid cancer survivors. Without you, life would be as it was for me. I’m looking forward to working with you.
During 2007, ThyCa had exhibits at major medical professionals’ meetings in the United States and Canada. We began exhibiting at medical meetings in 2001.
Our goal in this outreach is to raise awareness of our free services and resources, and to help connect patients, caregivers, medical professionals, and the public with ThyCa’s free materials, support services, education, and special events.
ThyCa volunteers distributed ThyCa materials at the following meetings, plus more than 50 additional health fairs, cancer awareness events and screenings, and educational programs.
- American Association for Cancer Research Annual Meeting, Los Angeles, California
- American Association of Clinical Endocrinologists Annual Meeting, Seattle, Washington
- American Society of Clinical Oncology, Chicago, Illinois
- American Society of Therapeutic Radiology and Oncology Meeting, Los Angeles, California
- American Thyroid Association Annual Meeting, New York, NY
- American Thyroid Association Spring Meeting, Washington, DC
- Florida Endocrinologists Association, Florida
- Johns Hopkins Thyroid Meeting, Baltimore, Maryland
- National Comprehensive Cancer Network Conference, Hollywood, Florida
- National Organization for Rare Disorders Conference, Rockville, Maryland
- SNM Annual Meeting (Society of Nuclear Medicine), Washington, DC
- The Endocrine Society Annual Meeting, Toronto, Ontario, Canada
- The Endocrine Society Clinical Endocrinology Update Meeting, San Antonio, Texas
- University of Southern California Thyroid Meeting, Los Angeles, California
Thank You, 2007 Exhibit Volunteers!
- Leticia Acosta, California
- Joel Amromin, California
- Gary Bloom, Maryland
- Wendy Dell, Washington
- Jan Halzel, Colorado
- Cindy Hellinger, Washington
- Allison Hoffman, Illinois
- Jessica Jones, Massachusetts
- Tammy Kilhullen, Texas
- Roselle Kovitz, Washington
- Rebecca Lord, Maryland
- Pamela Louie, California
- Patti Malloy, Ohio
- Melissa Mason, Alabama
- Abby Melendez, New York
- Miguel Melendez, New York
- Peggy Melton, Texas
- Dawn Molski, Illinois
- Mary Ellen Norman, Maryland
- Joan Petrie, Ontario
- Wayne Petrie, Ontario
- Calvin Pierce, Maryland
- Jaime Toth, Connecticut
- Mary Van Diepenbos, Michigan
- Mearle Van Diepenbos, Michigan
- Margaret-Mary White, Washington
- Cherry Wunderlich, Maryland
Throughout the year, we mail free brochures and thyroid cancer awareness materials in bulk in response to requests from physicians, hospitals, community groups, and individuals.
Our Appreciation to all our 2007 donors for your generous support of ThyCa.
- ThyCa’s Members, Constituents, and Individual Donors
- Genzyme Therapeutics
- Abbott Laboratories
- Exelixis, Inc.
- Fleming and Company
- King Pharmaceuticals
In-Kind Donors of Goods and Services
- Individuals and Families
- Learning Unlimited Corporation
- Office Depot
- Palm Management Corporation
- Pathways Home Health and Hospice
- Alan Plummer Associates
- San Francisco Chronicle Newspaper
- San Jose Mercury News and Bay Area News Group
- Sheraton St. Louis
- ThyCa Dallas Support Group
- ThyCa Midsouth Support Group
- Thyca Seattle Support Group
- ThyCa St Louis Support Group
- ThyCa Washington, DC, Support Group
- The Wellness Community, Walnut Creek, CA
When you let ThyCa “Tribute Cards” do the talking, you send your best wishes and say you care about funding vital Research on all Thyroid Cancer.
Thank You From ThyCa!
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.
We invite you to become a ThyCa volunteer, a ThyCa member, or both. By volunteering, you will help reach others to increase early detection of thyroid cancer, and connect survivors and families with our free support services, publications, and special events. Your membership will support ThyCa’s efforts to serve other thyroid cancer survivors and their families around the world, as well as raise awareness for early detection, and fund grants for thyroid cancer research.
Every day, thousands of people with thyroid cancer, and their families, are offered support, education, and hope by 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, so click here to give
(or you are welcome to donate by mail).
We encourage you to share this ThyCa Journeys newsletter with your family and friends. For permission to reprint an article in another electronic or print publication, please contact us.
We welcome ideas and suggestions for future articles, as well as volunteers to help with our newsletters and other publications. The deadlines for news and articles for ThyCa’s newsletters are the first day of each month.
Thank you to the writers, editors, and proofreaders for this issue: Gary Bloom, Michael Desiderio, Ron Green, Mary Ellen Norman, Pat P., Barbara Statas, Barbara Weinstein, Theresa Wickerham, and Cherry Wunderlich.
Copyright (c) 2007 ThyCa: Thyroid Cancer Survivors’ Association, Inc.
About ThyCa: Thyroid Cancer Survivors’ Association, Inc.
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.
Visit www.thyca.org, e-mail email@example.com, call 1-877-588-7904, fax to 1-630-604-6078, write to PO Box 1102, Olney, MD 20830-1102.