ThyCa NEWS NOTES – July 2008

In This Issue

ThyCa Awards New Research Grants

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is proud to announce the 2008 ThyCa Research Grant Recipients, including two new grants and two continuation grants. An independent expert panel of the American Thyroid Association (ATA) evaluated the proposals and selected the most promising projects to be funded.

The new 2008 grant recipients are:

  • Mike S. Fenton, Ph.D., Assistant Researcher, Endocrinology, University of California Los Angeles (UCLA)/Veterans Affairs West Los Angeles Health Care System, Los Angeles, California.
  • Libero Santarpia, M.D., Ph.D., Instructor, Endocrine Neoplasia and Hormonal Disorders, The University of Texas, M.D. Anderson Cancer Center, Houston, Texas.

ThyCa also awarded a second year of grant funding to our two 2007 grant recipients:

  • Krystian Jazdzewski, M.D., Ph.D., Assistant Professor, Medical University of Gdansk, Poland, and Visiting Scientist, Ohio State University, Columbus, Ohio.
  • Mabel Ryder, M.D., Assistant Attending Physician, Division of Endocrinology, Memorial Sloan-Kettering Cancer Center, New York, New York.

Our thanks to all our generous donors and volunteers for making these grants possible. Together, we are able to accomplish what most of us cannot do individually — fund independently reviewed research toward cures for all thyroid cancers.

top of page

Support and Awareness in Alaska

In Anchorage, Alaska, a school staff member gave 90 Thyroid Cancer Awareness Wristbands to all the staff members at her school, to show support for their friend who was being treated for thyroid cancer, and to raise awareness.

Thank you so much.

See photos of the wristbands, pins, shirts, and other Spirit items here. These items help raise awareness and connect others with our free support services. The proceeds also help sustain and strengthen our support services, outreach, and research fundraising.

top of page

Kat’s Benefit Concert in Texas on August 2nd

For the second year in a row, Kat Foster has organized a Cancer Benefit Concert in support of ThyCa: Thyroid Cancer Survivors’ Association and the American Cancer Society. She also will display thyroid cancer awareness materials. The concert is being held on Saturday, August 2, 2008, at the Rockstar Sports Bar, 7120 South Freeway, Fort Worth, Texas, starting at 7 p.m. Seven groups will perform. Thank you, You rock Kat!

top of page

Invitation to Support the Rally for Research 2008

Please join our Rally for Research as we work toward our dream of cures for all thyroid cancer, one of the few cancers significantly increasing incidence.
Thank you for your support!

top of page

Latest Conference Update

Our 2008 conference promises to be the best yet, and you’re cordially invited to attend.

The 11th Annual International Thyroid Cancer Survivors’ Conference, will take place in St. Louis, Missouri on October 17-19, 2008.

As of mid-July, people from around the United States as well as two other countries have registered.

We’re honored to announce that more than 25 distinguished medical professionals are already confirmed. Our confirmed speakers include 7 surgeons, 12 endocrinologists, 3 nuclear medicine and radiology specialists, 2 medical oncologists, a dentist, and an endocrine research nurse.

Specialists in coping skills and complementary approaches are also coming. The conference will also have roundtable peer support ses sions led by survivors of every type of thyroid cancer.

We’ve arranged a special hotel room rate of $99 plus tax for single, double, triple, or quad room.

For the speaker list, registration, hotel details, reservations for the Research Fundraising Dinner/Auction, and a flyer you’re welcome to print out and share with others, click here or call 1-877-588-7904.

For conference questions or to volunteer before or during the conference, e-mail to conference@thyca.org

We look forward to seeing you in St. Louis!

top of page

What’s New on the Web Site?

Our web site www.thyca.org has more than 650 pages with information about all types of thyroid cancer, support services, and events, plus numerous free downloadable publications. In June, the web site received more than 310,000 hits.

Recent additions:

  • The latest conference speaker list and press release
  • The latest edition of ThyCa News Notes
  • Links lists additions

Our thanks to everyone whose teamwork helps produce this valuable resource, available to thyroid cancer survivors, caregivers, professionals, and the public. In developing web content, we are guided by the principles of the Health on the Net Foundation.

Special thanks to

  • Webmistress Betty Solbjor of Massachusetts and Webmaster Joel Amromin of California
  • ThyCa’s Publications Committee—researchers, writers, editors, reviewers, and proofreaders
  • More than 50 thyroid cancer experts who give ongoing review and input to the medical content on the web site

We greatly appreciate your wonderful support.

top of page

Clinical Trials Page

Visit this page to find links to all the current clinical trials for advanced thyroid cancer of all types. This page also has helpful information for patients to know if you’re considering a clinical trial.

top of page

From the E-Mailbox

July 20, 2008….”Just wanted to say….”

Thank you for all the information provided on your web site about the types of thyroid cancer, which treatments work and which don’t work, the different kinds of treatment and what to expect before, during, and after the treatments.

I was supposed to have the left side of my thyroid removed because of 2 nodules. But during the surgery, with what the doctor saw, he decided that a total thyroidectomy and a central neck dissection was best. I was, of course, in shock! Numerous doctors have told me that this condition is very common and more than 95% of the time it’s nothing to worry about. I never thought I would be in that less than 5% group for thyroid cancer.

Now that it’s been a few days and I’m done with the self-pity and ‘why me?’ stage, I had to know what was going to happen next. And of course, the web is a great place to find out information. I still don’t know what type of cancer it is— I’ll find out this week— but because of your web site I now know what to expect and what to do when I get that phone call.

I have already down-loaded your Low-Iodine Cookbook and I am getting prepared. (I’m hoping that this is the ‘common’ type and curable with radioiodine therapy.) If I can’t have control over the cancer, I will have the control dealing with it and preparing for it.

Your web site has given me a sense of ‘power and control’ over this situation and I just had to say THANK YOU!

top of page

A ThyCa Volunteer— Sandy’s Story

By Sandy Triplett
Facilitator for the new Central Missouri ThyCa Support Group
(and retired on the Lake of the Ozarks in MO)

I happen to be a registered nurse and had taught physical assessment for the Visiting Nurse Association for over 10 years when I noticed my thyroid had “dropped” and the left side was larger than the right.

Seven years before, a physician had noticed an enlargement on the left side of my neck and a needle biopsy was negative. But now I noticed a change.

So went to my family physician, who said she didn’t notice any change but trusted my assessment and sent me for an ultrasound that showed three suspicious areas in the left lobe. She referred me to a surgeon, and I was told that this was most likely cancer.

With a strong family history of cancer, I requested him to remove my thyroid. The surgeon wanted to do a needle biopsy, and when I said, “Let’s remove the thyroid,” he suggested a biopsy. I repeated, “Let’s remove the thyroid.” He asked, “Why are you so adamant about removing your thyroid?” I explained my family cancer history. He offered a compromise. My husband was to be present during surgery and if a lab test during surgery showed cancer, then my husband could approve removing the entire thyroid. Otherwise, he would remove only the lobe with the suspicious spots.

During surgery the testing equipment in the O.R. was not working, so no contact with my husband and he removed the left lobe, isthmus, and as much of the right lobe as he could reach easily. I went back to work two days later and by early afternoon I couldn’t talk! I was lucky to have a job where I could carry a laptop computer around to communicate and did that for the almost 4 weeks it took to regain my voice.

RAI – My family physician referred me to the radiation department for the post-surgery body scan, and I was told a large thyroid tissue fragment remained and I needed to take RAI to ‘ablate’ (burn up) the tissue. No one told me about this before surgery or on my follow-up surgical visit. My family doctor had not put me on thyroid hormone as I had a small amount of thyroid left and the doctor assumed I wouldn’t need replacement therapy.

So now the radiologist was explaining RAI and the low iodine diet. My TSH was not increasing after several weeks and the radiologist decided to give me the RAI anyway, as he didn’t expect my TSH to get to the right level given the amount of thyroid tissue remaining. He told me I would probably need another dose next year. Well, I needed a total of four RAI doses for a total of 655 milliCuries, which left me with decreased salivation and an enlarged salivary gland.

Finally, after all of this, I called my family physician and asked for a referral to an endocrinologist. She said I didn’t need one and that she would manage my care. I wanted to put my faith in an endocrinologist who had thyroid cancer experience. At my first visit with the endocrinologist she asked why they hadn’t removed my whole thyroid (surprise!). Now I was on the right track. I had the normal ‘ups’ and ‘downs’ of thyroid replacement therapy but now I had the right doctor guiding my thyroid cancer treatment and follow-up.

As all thyroid cancer survivors’ stories are unique and have interesting twists and turns, I want to stress that being hyper made me paranoid and anxious. I thought if my Endo doesn’t tell me what’s wrong I will need a psychiatrist. Long ago, an Endocrinologist I worked with said that the endocrine glands affect so much of our mind that often family physicians leap over endocrine possibilities and assume a psychiatric diagnosis is the ‘cause’ of the behavior rather than a medical ‘cause.’

Thank goodness for ThyCa. Wish I had found it before my 2000 experience but since I found it through ‘surfing the net’ and started attending the St. Louis monthly support group meetings I have found sharing survivor stories invaluable. Now if I get any new body feeling, my first thought is to call my Endocrinologist.

Theresa, Facilitator of St. Louis ThyCa, and I attended the 2004 ThyCa Conference in Chicago and in 2005 the St. Louis ThyCa group organized the first all-day MidWest ThyCa Workshop. It became an annual event drawing 50-90 thyroid cancer survivors and caregivers from seven states.

(Note: In addition to being the Central Missouri ThyCa Contact, Sandy also serves on the Outreach Team for the 2008 Conference. From 2003-2007, Sandy served as Co-Facilitator of the ThyCa St. Louis Support Group.)

top of page

Survivor-to-Survivor TipsBy Julia McGuire of Virginia

The anxiety after being first diagnosed with thyroid cancer, and as we look ahead to treatment and testing, are things all of us experience. It may not be until after our initial treatment that we realize that this diagnosis has become a pivotal event in our lives. We realize how much this disease will change the way we live our lives. It affects how we monitor our health and manage our relationships and expectations, and we learn to adjust accordingly.

Below is a list of Survivor-to-Survivor Tips that I have gathered these past five years as I have transitioned from being newly diagnosed to living with cancer. I hope that these can be of use to others:

  • Be Comfortable With Your Doctor – The doctor-patient relationship is incredibly important during your path to recovery and afterwards. In order to be educated about your own health, you need the ability to feel comfortable asking questions to your doctor. A lot of medical verbiage can become confusing. It’s important to have the type of relationship with all of your doctors where you feel that they are listening to your concerns and answering any of your questions. This may mean switching doctors until you find one that is the right one for you, but it will be well worth it in the long run.
       
  • Be Careful of the Internet – It is easy to rely on the Internet for all informational purposes in life, but be careful about the information you read on the Internet. Make sure that medical information has been reviewed by medical experts. Some of my information gathering activity after my diagnosis left me confused and upset. Consult with your doctor, not a stranger, for advice about your situation. (Editor’s Note: ThyCa’s web site content receives review by our Medical Advisors as well as numerous other physicians.)
       
  • Find Local Support Groups – When I was first diagnosed, I had been a young adult in a city away from my hometown during my undergraduate years. It would have been useful to have visited a local support group to get me through the initial years of diagnosis when the confusion and anxiety factors are high. Find your local support groups in your area through ThyCa to help connect you to others who are having similar experiences.
       
  • Use Online Communities for Support – It can be hard to find people with thyroid cancer to talk to in your local community. Use the Internet to find people who have symptoms or a diagnosis similar to your own, and find a support group to chat about your experiences. It can help your situation to feel less overwhelming if you talk to people who are in your same situation. (Editor’s Note: In addition to joining one of ThyCa’s E-Mail Groups, you can also contact ThyCa’s Person-To-Person Network to be matched with a ThyCa volunteer who has the same type of thyroid cancer, for one-to-one support online.)
       
  • Find your Outlet – Whether it’s exercise or a good book, having an outlet when life gets tough is necessary. As we have found out, life can be unpredictable, but it’s important to have that one reliable activity that gets you going and feeling good.
       
  • Be Aware of Changes – More often than not, the changes in your body will prove out to be harmless. However; it’s important to be aware of any subtle changes you notice on your body, whether it is a lump on your neck, a cough that won’t go away, or an abnormal mole on your back. These little quirks can be nothing or the start of something big. Early detection is the best cancer control technique.
       
  • Take a Break – Take time off from your busy life and relax at home or travel. Visit family or friends, or new places. It is easy to get caught up with your daily job duties and stress once your life gets back to normal, and a vacation is incredibly important to manage your own personal health and well-being.
       
  • Make Plans – When hardships occur, people tend to put everything else in their life on hold. It is time to press Play again. Make plans, set goals, and move on with your life. Trust me, you will be happy you did.
       
  • Be Proud – I like to tell myself that my new life began when I was diagnosed with cancer. After cancer, people have a newfound understanding of life. They learn how to appreciate each day, value their health, friends, and family, and prioritize their time. Be proud of your survival. As Lance Armstrong once said, “The truth is, if you asked me to choose between winning the Tour de France and cancer, I would choose cancer. Odd as it sounds, I would rather have the title of cancer survivor than winner of the Tour, because of what it has done for me as a human being, a man, a husband, a son and a father.”

top of page

Low-Iodine Recipe of the Month

“Breaded” Chicken Cutlets
by Tracy H.

2 boneless, skinless chicken breasts, flattened to about ¼ inch thickness, and cut into 1 ½ inch strips
In three bowls:
Bowl 1: 1 ½ cup flour mixed with salt (noniodized, non-sea salt) and pepper (to taste)
Bowl 2: 5 egg whites
Bowl 3: 1 ½ cup unsalted matzo meal mixed with 1 Tablespoon Italian herb seasoning

Roll chicken strips in flour mixture then quickly submerge them in the egg whites. Next, roll them in the matzo meal mixture.

Coat the bottom of a frying pan with olive oil (about 3 Tablespoons). On medium high heat, fry the cutlets (covered) for approximately 3 minutes on each side. The breading will become crisp and golden. You will probably need to add oil and fry the chicken in two batches.

Serve warm or cold with freshly squeezed lemon.

This recipe takes some time, but the leftovers are great cold for lunch.

This is a recipe that Tracy adapted from one she has made in the past. The original recipe was not a low-iodine recipe. It called for whole eggs, regular breadcrumbs, and parmesan. So in exchange, she substituted egg whites, matzo meal, and Italian seasoning.

Tracy says “My husband actually prefers this low-iodine version. I like to make a bigger batch so that I have a quick lunch the following few days. It is just as delicious cold. Sometimes finding recipes for the low-iodine is as easy as going through your favorites and making some minor changes. Thanks for ThyCa’s great cookbook—it has been a huge help.”

Thank you very much, Tracy. 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.

top of page

Coming Events

2008

  • Each Month: Meetings of Local Thyroid Cancer Support Groups.
  • September 2008: Thyroid Cancer Awareness Month
  • Friday, Saturday, Sunday, October 17, 18, and 19, 2008: St. Louis, Missouri. The 11th International Thyroid Cancer Survivors’ Conference. More than 100 session choices. Details and registration form available here.
  • Saturday, October 18, 2008 from 6 p.m. to 9 p.m.: St. Louis, Missouri. ThyCa’s 7th Annual Dinner/Auction to Support Research.

2009

  • Each Month: Meetings of Local Thyroid Cancer Support Groups.
  • ThyCa Spring Workshops 2009. Details to be added to the web site early in 2009.
  • September 2009: Thyroid Cancer Awareness Month.
  • Friday, Saturday, Sunday, October 16-18, 2009: Boston, Massachusetts. The 12th International Thyroid Cancer Survivors’ Conference. The web site will add details after the 2008 ThyCa Conference.
  • Saturday, October 17, 2009. Boston, Massachusetts. ThyCa’s 8th Annual Dinner/Auction to Support Research. The web site www.thyca.org will add details.

For Calendar updates, visit our Calendar page, linked on the left side of our Home Page.

top of page

Help Spread the Word About Thyroid Cancer:

September is Thyroid Cancer Awareness Month
….but don’t wait for September to “get the word out.” Free awareness materials are available all through the year. Give the Thyroid Cancer Awareness Brochure featuring actress Catherine Bell, or the many other brochures/flyers (many downloadable from www.thyca.org) to others to let them know the signs, find it early, and learn about neck checks. You can also wear our wristband, the 3-colored awareness pin, or the ThyCa tee-shirt to help make others aware. Contact www.thyca.org for awareness materials.

The 11th International Thyroid Cancer Survivor’s Conference
…. is being held from Friday, October 17 through Sunday, October 19, 2008 at the Sheraton Westport Hotel, 191 Westport Plaza, St. Louis, Missouri 63146. If you have never attended a conference, don’t miss this one. You will meet the nicest people, get the information you need about thyroid cancer from the specialists who know it best, and have a very informative and fun time in Missouri. You will also come away from it an informed patient. Hope to see you there!

ThyCa always offers free year-round support services, awareness materials and education about thyroid cancer: You can find your local support group, an e-mail support group or a person-to-person support person who will help you through your journey with thyroid cancer. Don’t feel alone, seek out the help you need. We’re here to make sure you don’t “go it alone.”

To find out more about all of our many services, visit www.thyca.org for more details.

top of page

Every Day…

…thousands of people receive help and hope from ThyCa.

Here are 5 ways you can help:

  1. Tell others about www.thyca.org and our toll-free survivors’ line 1-877-588-7904
  2. Raise Awareness of Thyroid Cancer—Get Free Materials
  3. Volunteer: We’ll help you find an activity to match your time and talents!
  4. Become a ThyCa Member: We welcome Annual, Two-Year, and Lifetime Members. Thank you to all.
  5. Donate: Make your tax-deductible donation by mail or online, or give a tribute gift in honor of someone special.

Special Thanks to the hundreds of wonderful volunteers who help ThyCa throughout the year. You are bringing help and hope to people worldwide. You are raising awareness, and sustaining and extending our outreach, and support services. You are also helping with our special events, as well as with fundraising to strengthen our services and support for thyroid cancer research for cures for all thyroid cancer.

top of page

ThyCa JOURNEYS NEWSLETTER
Copyright (c) 2008 ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Thank you to Pat Paillard, Gary Bloom, Tracy H., Julia McGuire, Barb Statas, Sandy Triplett, and Cherry Wunderlich, for gathering information, writing, editing, and proofreading this newsletter.

Deadline for articles and news items is the first day of each month. Suggestions for articles are welcome.

We invite you to send this newsletter to your family and friends. 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-mailthyca@thyca.org, call 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit www.thyca.org.