THYCA NEWS NOTES - December 201301/2014
- Thrilled to Give Back
- My Story
- In Memoriam to My Oncologist, Whom I Outlived
- Rally for Research News
- 3 New Surveys: You’re Invited to Take Part
- Follow Us on Facebook and Twitter
- Cancer and Careers
- Still Time to Donate in 2013
- Changing Standards of Thyroid Cancer Care
- 2014 Events Preview
- Low Iodine Recipe of the Month
- Every Day
- About ThyCa NEWS NOTES and ThyCa
Almost five years ago my daughter, then 24, was diagnosed with thyroid cancer. My family experienced what most of us in the ThyCa community have experienced.
We were nervous about a cancer diagnosis, nervous about surgery, nervous about radioiodine, and sure as hell didn’t like hearing people, including doctors, say that Julie had the “good” cancer. Isn’t the good cancer the one we don’t get??
After a few months of doing what I could to help my daughter directly, and seeing her recover well, I called ThyCa. I wanted to help the larger thyroid cancer community.
Based on my professional experience, I felt my greatest contribution would be to assist a local support group. A ThyCa group did not exist in New York City or even the nearby suburbs. I couldn’t imagine why, but thought there might be a good reason. I didn’t want to start a group to which no one would come, so I started helping by e-mail and phone.
Lo and behold, as calls of newly diagnosed people started coming in, so did the requests for an actual, physical group. Four and a half years ago we started our Manhattan, New York, local ThyCa support group. My life has been enriched enormously by the people who are part of it.
In December of 2012, we turned our monthly meeting into a “Fun-d Raiser” that raised almost $2,000 for ThyCa. I didn’t know that the holiday event would become an annual one, but members kept talking for months afterwards about the fun we had. One member even wanted to replicate it in the summer, with a “Christmas in July” event
While that didn’t happen, we had our second “Fun-d Raiser” on Dec. 4th this year — and raised $4,447!
Numerous members obtained donations of merchandise for our auctions (tricky tray and silent), and asked friends, families, and employers for monetary contributions. We brought finger food, beverages, decorations — and friends and family — to make the event the fun fundraiser we apparently are now expecting annually!
The success of the December meeting is the same success we experienced throughout the year. It is because of the active participation of group members who make things happen.
“While I’m the facilitator, it’s not my group,” I constantly say. “It’s our group,” I add, always reminding members that we make decisions, and implement them, together — in choosing activities, speakers, topics, and more.
(Editor’s Note: Thank you so much, Arlene, for starting the ThyCa Manhattan, NY, Support Group —and for your terrific Fun-d Raiser!
I am 35 years old and I live in Michigan.
In 2006, I went to my primary care physician for a severe sore throat, which I thought was strep. While the doctor was looking at my neck, she noted that it looked larger than it should.
She requested I have a neck ultrasound, and the results showed some large spots. The doctor wanted me to do an uptake test, which I did, and it showed the same large spots. After those results, I called the endocrinologist who had treated my brother for his Graves’ disease. I met with her and she looked at my test results. Then, I had blood drawn.
Several days later, she informed me that I had Hashimoto’s Thyroiditis. She gave me my options: to keep monitoring my TSH level and watch the spots on my thyroid, or to start medication and keep monitoring the spots. I elected to start medication. My TSH level was checked every two to three months. Every six months I had an ultrasound.
In 2011, my endo requested a biopsy because the spots on the left side had grown slightly. Nothing abnormal was found. She sent me to see an endo at a teaching hospital. He reviewed my test results and suggested another biopsy. I told him that I would prefer to just have the thyroid removed. He told me the complications of doing a complete thyroidectomy, and advised me to think about it and call him in a few days to let him know what I decided. On the way home, I spoke with my mother and brother and decided that it would be best if I move forward with surgery.
Early in January 2013, I had my pre-op physical and was approved to move forward with surgery. On Thursday, January 24, 2013, I checked in, got prepped, and everything was great. I wasn’t nervous or scared. I thought, “This will be it! No more biopsies.”
The next thing I knew, I woke up in a private hospital room. I saw my mom sitting in the chair beside the bed. She informed me that I was out for four days. I have to admit I started to panic, and my anxiety started to take over. The surgeon came in and sat down at the end of the bed and explained that, during surgery, he found a few spots that he didn't like the looks of on my thyroid and on three lymph nodes. He went on to tell me that I had papillary thyroid cancer, and that two of the three lymph nodes also tested positive for cancer.
It also turned out that I had severe vocal cord damage. I was released with instructions on the new medications. I was put on Cytomel, calcium, and liquid pain reliever.
The following week I went back to work, and in March I had radioactive iodine. I did the low-iodine diet and quit taking the Cytomel for two weeks prior to treatment. The first week I was able to work. The second week I was unable to drive, work, focus, think clearly, eat, or stay awake. I was sleeping 20-plus hours a day. I had to have my mother cook for me and bathe me. The Thursday prior to RAI, my TSH was at 119.16, which explained the way I had felt the entire week.
That next Wednesday, I had my dose of RAI: 150 mCi. Friday, I went through scans. The Nuclear Medicine doctor let me know that she found another lymph node under my collarbone that was cancerous. She agreed that, because I was so worried, that she would do the follow-up in six months. I was put on Synthroid 200 mcg.
During this whole process, I felt like nobody understood what I was going through. I had people tell me that I had the best kind of cancer. I was in such shock that anyone could think that any form of cancer is the best. Cancer is cancer, and it can all take a person’s life. I have family tell me that cancer was my fault, and that if I would have listened to the doctors I would not have cancer. Being anti-confrontational, I just ignored them.
My boss thinks that because I had surgery, I should be back to normal and I should not be getting sick anymore. I try to explain that the thyroid is an important organ in the human body, and that removal wasn't going to make me completely healthy again. I’m still going to get sick, I’m still going to be tired, and my voice is still going to cut out while I’m doing presentations and conference calls. I am doing my best with what I have, but I cannot push my body the way I did before. I get tired quickly, and the vocal cord pain is a daily issue. Some days I can talk, but some days I cannot even whisper because of the pain.
In August, I met with the doctors. One told me to just take it easy on my voice, that it may take up to a year for my vocal cords to fully heal.
I found the ThyCa.org web site, and it helped me feel like I wasn’t alone. I was able to ask others questions. I saw that what I went through and was still going through wasn't something that I was experiencing alone. The support and knowledge that the people on ThyCa.org gave me was so amazing. I wish I had found the site earlier.
I wish there was a local support group closer to my home. The closest ones are an hour or more away. I started to look into what it would take to start a support group. I still want to start one in my area of Michigan.
At the end of October, I started the LID again, and this time it was much easier. On November 11, I had my first Thyrogen injection. On November 12, I had my second injection. The next day I had my scans, and the Nuclear Medicine doctor said there was no evidence of cancer in my body. The spot that was glowing under my collarbone in March was GONE.
I am so thankful that I only had Stage I and that it was found so early that I only needed one round of RAI. Going forward, I have to check my TSH and T4 levels regularly, and could require medication adjustments. The Nuclear Medicine doctor told me that I should never need any more scans or RAI.
I’m thankful for the care I’ve received, and the people who have helped me along my journey. I look forward to helping those who will be diagnosed after me.
Five years ago, I enrolled in a cancer clinical trial. The oncologist running the drug trial took me under his wing. At the time, my cancer was spreading — years of traditional chemotherapy had done little but make me feel sick. But my oncologist reassured me with quiet confidence. “We’re going to help you stick around,” he said.
Today, thanks to him and his staff, I’m still here. But he isn’t. He died of lung cancer in September. It’s a painful irony I’m still sorting through.
Since my diagnosis in 1994 of a rare, incurable condition — Medullary Thyroid Carcinoma — I’ve been searching for an effective treatment. The cancer spread to my lungs in 2000, and, despite several operations and years of chemotherapy that battered my body, it continued to spread. In my mid-forties and with many things yet to accomplish in life, I researched experimental treatments and exchanged information with other sufferers of my rare disease through ThyCa: Thyroid Cancer Survivors’ Association, Inc.
One day I clicked to the clinical trials page of the National Institutes of Health web site and learned of a novel drug being tested against my specific condition. The drug, then called Zactima, was known as a tyrosine kinase inhibitor. Basically, it worked to block proteins that tell tumors to grow.
One weekday morning, I drove three hours from my home to meet the oncologist and get the ball rolling. Though untested drugs can be risky, my oncologist quickly earned my trust. A thick-haired man who spoke in quiet intelligent bursts, he’d keep a close eye on me, monitoring my status through bloodwork and scans. He spoke frankly of possible side effects, which included skin and intestinal problems. There was another concern. Two-thirds of study participants were supplied with the drug — but one-third received a placebo. Neither my doctor nor I knew which one I would receive. I could be left without a life preserver.
By my next appointment, three months later, my levels of Calcitonin — a hormone stimulated by my cancer — had crashed to 10,000 from over 100,000 before the trial. It was apparent that I was among the lucky two-thirds of patients. The drug was working! My oncologist wasn’t one to show a lot of emotion with me, but he shared an enthusiastic smile when he told me the good news. I immediately called my wife to tell her, and drove home that afternoon, my heart singing with hope for my future.
Over the next five years I visited the medical center every three months. I came to refill my prescription of once-a-day Zactima pills, undergo CT Scans and bloodwork — and to feel supported by the doctor and his staff of nurses and researchers. I remember pricking my ears to catch every morsel of what he was saying. He was a steadfast presence, and when he examined my neck and chest for recurrence, I was in sure hands.
But he was more than a doctor to me. As a theater buff, he took an active interest in my writing, and spoke to me of his daughter’s creative pursuits. I e-mailed him several of my short stories, and he always took time to send me a complimentary e-mail back. I considered him a friend.
The drug kept my condition at bay, and as a result of the trial was approved by the FDA, with the brand name Caprelsa, for use against my cancer. Today, thousands of patients like me can now benefit from the work by my doctor and other study researchers.
The last time I saw him was this past spring. I noticed no difference in his manner toward me. He seemed healthy, energetic, his hair as thick and dark as ever. He gave zero hint that he had cancer, let alone terminal cancer, even as he treated mine. He betrayed nothing. But when I visited the medical center again this summer, I received the odd news that he’d taken a leave. I asked for elaboration but the staff was oddly quiet. It wasn’t until I visited again this fall when his staff told me that he had died of lung cancer.
I was stunned. But he didn’t seem sick, I insisted. He kept working right up until the end. That’s when it hit me: he didn’t want his patients to know their doctor was dying of the same condition they hoped to beat. He didn’t want them to lose hope, even as his own situation grew hopeless. My sense of betrayal at not being told sooner melted away into gratitude. His silence was admirably selfless. The world — my world — is poorer without him.
When I revisit the center for my next appointment in January, I’ll see another oncologist who has replaced him on the trial I’d entered. My new oncologist is a smart, caring doctor originally from Belgium. I recognize signs of selflessness in her as well. I now have a standard against which to measure people’s worth. My oncologist gave me a new lease on life even as his own lease expired
(Note: David Kalish is a medullary thyroid cancer survivor and author whose novel, The Opposite of Everything, will be published this coming March.
We’re proud to announce our 12th year of research grant funding. We’re deeply grateful to everyone who donates to our Rally for Research.
ThyCa’s grants are open to researchers worldwide. We have awarded grants to researchers in five countries since 2003. Our grants are for all types of thyroid cancer: papillary, follicular, medullary, anaplastic, and variants.
Proposals for ThyCa’s 2014 Research Grants are due by January 31, 2014. Get the details here
For information about the past recipients and their research projects, and how you can support our research fundraising, visit our Rally for Research page.
We’re excited about the three important new Thyroid Cancer Patient Experience Surveys. Each survey takes just a few minutes to complete.
- Thyroid Cancer & Quality of Life: University of Chicago Survey
- Detection of Radioactive Iodine (I-131) in Public Places Survey
- Thyroid Cancer Quality of Life Survey: USC/UCLA
Please take part. Help advance knowledge about how we live with our cancer. You can participate from your own computer, and your responses are anonymous and confidential. Go to www.thyca.org and you’ll find all three surveys linked from the Home Page.
These new surveys bring to 15 the total number of surveys in which ThyCa has collaborated since 2001. We are proud to be part of these efforts.
We're now over 8,700 strong on the ThyCa Facebook page and over 1,600 on Twitter
Our support of each other--whether giving or receiving--is an incredible gift. Thank you for joining us.
Thyroid cancer disrupts our lives, including our careers. Cancer and Careers is a helpful nonprofit with information and resources for people with cancer, to help them thrive in their workplace by providing advice from experts, interactive tools, and educational events. Rebecca Nellis of Cancer and Careers (www.cancerandcareers.org) participated in the 16th International Thyroid Cancer Survivors’ Conference this year. We’re pleased to introduce this resource.
Together, with you and so many others, we work to ensure that no one has to feel alone as they face thyroid cancer, and that research will continue to progress toward a future free of thyroid cancer.
We welcome your donations to help us continue this work.
Your generosity makes it possible for us to sustain, strengthen, and extend our free services and resources, and advance research toward cures for all thyroid cancer.
Go to our Donations page for our secure online donation form, or to donate by mail.
Thank you very much!
The standards for thyroid cancer care keep changing as researchers and clinicians gain new knowledge and share their findings.
As a result, the care for individual thyroid cancer patients is becoming increasingly tailored to the patient’s individual circumstances.
To find more information, visit our Popular Pages section on the right side of our home page www.thyca.org, where you’ll find Physician Guidelines, webinars with experts, publications, and the Links. One of our links is to Thyroid Cancer Canada (TCC).
TCC President Rita Banach wrote an article titled “Rethinking Thyroid Cancer,” inspired by a lecture by R. Michael Tuttle, M.D. at the World Thyroid Cancer Congress, a physicians’ meeting this past summer. Dr. Tuttle is a ThyCa Medical Advisor. TThank you very much to Rita Banach, Thyroid Cancer Canada, and to Dr. Tuttle for permission to share this article.
Hundreds of thyroid cancer events are already on the Calendar for 2014. These are terrific opportunities to meet others face to face, and to learn from experts.
Visit our Calendar page to find out more about local support group meetings in five countries, thyroid cancer seminars, webinars, workshops, Thyroid Cancer Awareness Month, and the 17th International Thyroid Cancer Survivors’ Conference.
The Calendar will continue to grow. Hope to see you at an event in 2014!
This month, we feature one of the first recipes contributed for the free Low Iodine Cookbook. It's on page 107 of the cookboo.k's 7th edition
Contributed by Christine N. of Virginia
1 1/2 cups flour
1 cup sugar
3 Tablespoons cocoa
1 teaspoon baking soda
1/2 teaspoon salt
5 Tablespoons oil
1 teaspoon white vinegar
1 teaspoon vanilla
1 cup cold water
Preheat oven to 350 degrees F. Sift together flour, sugar, cocoa, soda, and salt into an 8 x 8 inch baking pan or dish. Mix thoroughly. Make 3 holes in the dry ingredients. Place oil in the first hole, vinegar in second hole, and vanilla in third hole. Pour water over all and mix well. Spread batter evenly in pan and bake in the dish that batter was mixed in. Bake 30 minutes or until center is firm. Cool. This can then be sprinkled with confectioners sugar.
Topping suggestion from Tracy T.: Crush strawberries or stew a package of frozen berries. Sweeten slightly with sugar and serve over pieces of cake.
Thank you, Christine and Tracy! This recipe has been a favorite since the first edition of the cookbook!
Thank you also to the more than 200 generous volunteers who have contributed your favorite recipes for the 7th ediition and for the next edition.
Visit our website to download the free cookbook. It's available in English, Spanish, and French.
We welcome new recipes at any time. E-mail your recipe to firstname.lastname@example.org. Thank you
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 is what makes it possible to sustain, strengthen and expand our services and outreach.
It only takes a minute 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)
Please share ThyCa News Notes with your family and friends. For permission to reprint in another electronic or print publication, please contact us at email@example.com.
Thank you to our writing, editing, and proofreading team for this issue: Arlene Bregman, Leah Guljord, David Kalish, Christine N., Pat Paillard, Destiny Schulte, Barb Statas, Tracy T., 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 the annual International Thyroid Cancer Survivors’ Conference, as well as Thyroid Cancer Awareness Month, a worldwide observance each September, plus year-round awareness campaigns, research funding, and thyroid cancer research grants.
Contact us for free materials and information. E-mail to firstname.lastname@example.org, call toll-free at 1-877-588-7904, fax 1-630-604-6078, write P.O. Box 1102, Olney, MD 20830-1102, or visit our website.