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Support and communication for thyroid cancer survivors and families. A free publication of ThyCa: Thyroid Cancer Survivors' Association, Inc.
We're delighted to introduce
ThyCa's newest publication! ThyCa volunteers created and edited this
free online newsletter for distribution through our five e-mail discussion
groups, our local support groups, our volunteers and members, and
our web site. This
The editorial consultant for this issue was M. Sara Rosenthal. Thank you, Sara!
We welcome your ideas and suggestions.
ThyCa Journeys Team
IN THIS ISSUE
Where there is a will, there is a way. ThyCa has the will and with each and every volunteer's efforts, ThyCa is finding a way to make a difference in the lives of thyroid cancer patients and their families across the country. Whether you realize it or not, the work we're doing and the effort we are giving forth as a part of ThyCa are extraordinary.
Thanks to all of us, thyroid cancer survivors have a voice and a wonderful network of services. We have a support system that is helping thousands of people strengthen their resolve and build a greater immunity to the fear and discouragement that can overwhelm cancer patients. Thanks to you, there is hope, and also purpose. I feel blessed to be a part of this organization and am extremely proud of ThyCa's accomplishments. Please take a minute to bask in our collective success and to embrace all the good we have initiated.
I'm happy to report that what I have shared with you here is only the half of it. More and more people across the nation are getting involved with ThyCa. These are exciting times for us. We're growing…and with our growth comes emotional and physical healing. We all have each other to thank for that.
P.S. I hope to see you online and at the ThyCa 2001 Conference beginning September 21st in Chevy Chase, Maryland!
ThyCa is proud to have established its Medical Advisory Council (or MAC as we call it). All these distinguished endocrinologists have devoted their time and expertise to ThyCa, and we thank them! They answer our questions, advise us on our materials and web site, and are available to address the numerous issues that arise for our members. Who are these wonderful people? Take a look:
Kenneth B. Ain, M.D.
Kenneth D. Burman, M.D.
Paul W. Ladenson, M.D.
Arturo R. Rolla, M.D.
Nicholas J. Sarlis, M.D.,
Monica C. Skarulis, MD
Since the fall of 1995, thyroid cancer survivors and their families have had a place on the Internet that they can call home. It is the America Online (AOL) Thyroid Cancer Mutual Support Group, where thyroid cancer patients and their caregivers share information and receive support. From this first home, a community of varied support services was launched and continues to grow.
The AOL on-line group is largely the work of Karen Ferguson, a resident of North Carolina, who was diagnosed with follicular thyroid cancer with Hurthle cells in late 1994. At the time, Karen knew no one with thyroid cancer. She reacted with fear of the disease and of the prospect of death. After being treated with a total thyroidectomy and two doses of radioactive iodine (RAI), Karen has been cancer-free since 1995. But her experience led to her interest in ensuring that no other person would have to face diagnosis, treatment, and recovery without support from thyroid cancer survivors.
As thyroid cancer patients soon discover, their type of cancer is unique in many ways. As with any illness, early detection can simplify treatment and improve outcomes. However, thyroid cancer comes in varied types with distinctive treatments; treatment for the most common types is quite different from that of other cancers. Although the most common types of thyroid cancer have low mortality rates, there are rarer types and variants that can be very aggressive and often have a worse prognosis. People treated for thyroid cancer also need lifetime monitoring, because some recurrences can occur much later, even decades after initial treatment.
These differences can make
it difficult to seek solace in traditional cancer support groups.
In Karen's words, "I was probably not going to die from my cancer.
I was not facing chemotherapy. I had not lost a breast or my colon
or my leg. I could not go to a support group for general cancer and
expect folks who might be dead in five years to devote their precious
time to supporting me.... [Thyroid cancer
Despite the differences between thyroid and other cancers, people diagnosed with thyroid cancer have many concerns that need to be addressed. Thyroid cancer patients face fears about their mortality and must become accustomed to relying on a daily pill for the thyroid function that is vital to life and well-being. They need to adapt to lifestyle changes, particularly when hypothyroid. Above all, they want to feel that they are not alone with their disease. Even with the most supportive family and friends, the experience of speaking to another thyroid cancer patient or survivor is unparalleled.
In the mid-1990s, the Internet was not the widely used method of communication and information sharing that it is today. But Karen began attending a weekly private on-line group devoted to African Pygmy Hedgehogs. Her weekly sessions on that subject led her to the idea of using the Internet to reach out in an organized way to others with thyroid cancer. But the impetus for the thyroid cancer patient on-line support group was more than the hedgehog--it was Karen's need not to be alone as she experienced having thyroid cancer. In the process of helping herself, she would create something that would help countless others.
In the spring of 1995, Karen
posted an inquiry about thyroid cancer on AOL's message board. Within
a few weeks, she had received seven or eight responses from other
thyroid cancer patients. The members of this small group began e-mailing
one another, sharing information and experiences.
Although the group tried to be accessible to others seeking thyroid cancer-related support, it was difficult without the backing of AOL. Company policy allowed only public groups to be advertised on the AOL web site, and the company controlled the creation of such groups. Fortunately, e-mails and telephone calls to AOL pleading for a public area in which to meet were rewarded when, in the spring of 1996, AOL supported the creation of the public Thyroid Cancer Mutual Support Group.
The first hour-long public group meeting involved five people. They compared notes and tried to educate themselves about their disease. As Karen notes, "It's ludicrous. We were all SO dumb about our cancer. But we were THRILLED to talk to each other and became instant friends."
Participation in the support group grew as members posted information about its existence on Internet message boards. Individuals searching AOL for information on thyroid cancer would automatically find the group listed. Within a year, over 75 people had dropped in on the group to listen, share, and learn. The numbers keep growing. On August 13th, the AOL group will hold its 300th meeting!
On a typical Monday night, approximately 30 people participate in the group, which is facilitated by Karen with Elizabeth Irion, who has also been a member for several years. While there is a core set of people who participate regularly, others come and go as they move through the experience of their cancer. Many people look for information and support from the group when they are newly diagnosed and undergoing treatment. Once they have progressed to regular monitoring, they participate more sporadically. But the group happily welcomes them back when they check in with updates or need additional support.
Since its inception, the AOL group has led to the creation of a broader community of thyroid cancer support services. In Karen's words, "We understood the need to connect with others like us, and we were never satisfied confining ourselves just to AOL."
The second support service was the first local support group for thyroid cancer survivors and families. Started in late 1996 in Lawrence, Massachusetts, near Boston, by Ric Blake of New Hampshire, this group still meets each month and gives survivors and families the opportunity to meet in person.
The impact of the AOL Thyroid
Cancer Mutual Support Group was further enhanced when Dr. Arturo Rolla
learned about the group from Ric and, in January 1997, with help from
Karen and Ric, established a thyroid cancer listserv discussion group
on the Internet. This discussion group provided thyroid cancer patients
with a third means of communicating and making their presence known.
Now a Yahoo discussion group with Dr. Rolla still actively involved,
this listserv became the next step in
The AOL on-line group also
led to another important milestone--the initiation of an annual ThyCa
conference for thyroid cancer survivors and families. The first conference
took place in the fall of 1998. Some of the survivors who met there
formed the seventeen-person steering committee that founded the ThyCa
organization early in 1999. Today, the thyroid cancer support community
thrives through this
Services include a growing network of ThyCa local support groups across the country, and the newest group, in Toronto, Ontario, Canada. In addition, ThyCa's Person-to-Person Network offers one-on-one support. Another service, a toll-free survivors' telephone line, offers a connection for people without Internet service. ThyCa also continues to expand its award-winning web site. There are also several additional listserv discussion groups. These support people and families coping with medullary thyroid cancer, anaplastic thyroid cancer, advanced thyroid cancer, and pediatric thyroid cancer. ThyCa volunteers have also contributed to a Low-Iodine Cookbook, free and downloadable from the ThyCa web site.
Even as the thyroid cancer support community and network of ThyCa services has grown, the AOL Thyroid Cancer Mutual Support Group continues to be a source of support for people across the United States, Canada and Europe. While not all patients have access to thyroid cancer specialists, the Internet allows them access to a wealth of information and support from others who have already faced the disease.
And although local support groups do not yet operate in all parts of the country, any thyroid cancer patient or caregiver seeking information and understanding through AOL can find it at their computer on Monday nights at 8 p.m. Eastern time. The success and impact of the AOL Thyroid Cancer Mutual Support Group have perhaps exceeded the imagination of its founder, but not her hopes.
Anyone diagnosed with thyroid cancer can experience feelings of isolation, depression and anxiety. But by the simple act of self-expression through words, fine arts, visual arts, healing arts, performing arts, hobbies or sport, we can feel better and more connected.
Creativity is an amazing defense against depression. Writing, in particular, in the form of journaling, poetry or letter-writing is a great way to express yourself, and improve your mental health. A new study published in The Journal of the American Medical Association found that that people suffering from chronic ailments such as asthma or arthritis actually felt better when they wrote about their ailments.
A few years ago, Oprah Winfrey used her influence to get her viewers to begin daily journaling or diary writing because of the powerful effects it can have on enabling those of us who are otherwise without voice or expression. Using her own creativity to enable others, she has "resold" the idea of journaling in an age where few people take the time to sit down and be still with their thoughts. Oprah has taken journaling one step further by encouraging people to begin "gratitude journaling" where they think about what, in their lives, they are thankful for, and actually write it down. A firm believer in literacy as well, Oprah's influence on the comeback of journals can also enable many who in the past, might have been afraid to write because of their education levels, to find the courage to write and express themselves. For people who do not feel they are "creative" or "artistic," journaling is an opportunity for anyone to express his/her feelings.
(Editor's Note: Each issue, we feature a thyroid cancer survivor's personal experience with this disease. If you have an experience you'd like to share with us, please e-mail us at firstname.lastname@example.org. Articles may be edited for length.)
It was the last appointment on the last day of the last month of the year. The atmosphere at the office was festive as the staff anticipated New Year's celebrations to come later that evening, welcoming 1998. After a battery of tests that lasted several hours, it was time for the physical examination. I was disappointed to be assigned to a physician whom I had never met before. I had hoped for the woman doctor who was so friendly. Instead I met an older gentleman who seemed somewhat gruff.
"Didn't you notice the lump in your throat? Weren't your shirt collars too tight? Don't you have trouble swallowing? Didn't you notice anything?" I felt defensive. There was nothing wrong. I had no symptoms. Yet he was right; my shirt collars had gotten tighter and swallowing was a little different. He ordered my blood tests to include thyroid tests. What was that about? He suggested I have my own physician examine me. Nothing was mentioned about what it might be. What did he know? Maybe he was having a bad day. I'm fine. But I was having my annual physical exam at the Executive Health Group, which specializes in early detection and preventive medicine. This doctor must know something.
Following his advice, I made an appointment with my general practitioner, Dr. Richard Eiges. He found the lump in my throat and advised me to have a thyroid scan. I made another appointment -- this time with the radiology department at Robert Wood Johnson University Hospital -- the major teaching hospital in New Jersey. Swallow this radioactive iodine pill and come back the next day for more scans. Hot nodule? Cold nodule? What did this all mean? The radiologist who performed the tests had little to say to me.
Returning to my GP, he informed me that I had a cold nodule which was not likely to be cancerous, but to be safe, suggested I should be examined by an endocrinologist who would perform a fine needle biopsy. He referred me to Dr. Ira Spiler. I was becoming concerned and wanted to have this taken care of quickly since it had been nearly three months since the lump was first noticed. It took another three weeks to secure an appointment with the endocrinologist. ( I could have seen his Associate sooner, but if this was serious I thought I should be examined by the senior physician instead of a substitute.)
On my way to his office,
I anticipated the biopsy would be done that same day. No, he had to
examine me first and determine for himself what should be done. He
was impressed that the growth was noticed on a routine exam. (My thinking
was that if this were a serious problem, there wouldn't be this delay.)
I was wrong; the fact of the matter was that biopsies were only performed
on Wednesdays at his office in another hospital. Nearly four months
after my annual physical examination, I found myself in the Raritan
Bay Medical Center for a biopsy. I had to reschedule our office Annual
Secretaries' Day luncheon because I was going into the hospital. No
one knew why. While performing the biopsy, the doctor assured me,
jokingly, that he was a "real" doctor. He was pleased that
he was able to extract enough material without multiple tries. I stared
at the ceiling as he stuck what seemed like a giant
Swallowing had become more difficult. I could tell that this thing in my neck was growing.
The following Monday I was out of the office, taking a deposition. At the end of the afternoon I called in for my messages. There were two from my endocrinologist, Dr. Spiler. I immediately sensed the news was not good; why would he call a second time unless there was a problem? I returned the call right away, and he told me that the pathology report concluded there was a 99% probability I had papillary thyroid cancer and that I needed to see a surgeon. He recommended Dr. Ralph Greco. I called my wife to tell her the results. I decided that I would depart from my usual habit of returning back to the office to continue working late in the day. I had a few other things to ponder. Work would have to wait.
I went to the library to find out something about thyroid cancer and found M. Sara Rosenthal's wonderful book--The Thyroid Sourcebook. I called the National Cancer Institute for more information. I called a friend who was a radiologist for advice. He told me this was the best type of cancer to get. I didn't know there was a "good" type of cancer. I didn't know what to do or where to go. He advised me about the pros and cons of going to a New York City hospital, such as Sloan Kettering or staying in New Jersey. He suggested Dr. Greco for the surgery.
The next step: back to my general practitioner to discuss my options. He reassured me that there would be a positive outcome and recommended Dr. Greco, too. Three out of three recommendations for Dr. Greco. So off I went to meet Dr. Greco, chief of surgery at Robert Wood Johnson University Hospital and the head of the department of surgery at the medical school. I indicated I had a few questions; knowing that I was a lawyer, Dr. Greco leaned back, smiled and said: "Go ahead, cross examine me." I liked him already. He was more than willing to answer all of my questions. I brought a notebook and wrote down his answers to my long list of questions:
What are my options? Total thyroidectomy versus partial thyroidectomy? Any transfusions involved? What are the side effects? What kind of follow-up is involved? What is my life expectancy? Clearly, these were questions Dr. Greco had heard before, and answered every one.
I was first examined by one of Dr. Greco's residents, before he looked at me himself. I spent roughly 90 minutes with Dr. Greco and his staff. Afterwards, I decided not to get a second opinion and I scheduled the surgery with Dr. Greco. Again, I anticipated that my surgery could be booked quickly, and that I could resolve this matter and move on. I was anxious to have this over by May, so I could attend my daughter's college graduation from the University of Texas. However, the surgery wasn't scheduled until the middle of June.
I had to decide who to tell and when. I didn't want my family to know because I thought that it would ruin the graduation celebrations. Why should they worry? I was more than a bit anxious for the next month. What would people think of me with this scar on my neck? Who wants to be near someone with cancer? I thought I would never be as healthy as I was then. I didn't want to have to take a pill every day forever. I didn't want to be a sick person.
A week before the surgery I told my family and colleagues at work. (One of the other lawyers thought I was joking. This certainly was nothing to joke about). My brother immediately came to see me. My mother was angry I hadn't told her sooner.
My wife and I drove to the hospital in her car since I wouldn't be driving home. The morning of the surgery my mother, brother, sister-in-law, and eldest daughter were at the hospital before we arrived. I suspect the waiting was worse for them than for me. I was unconscious. I couldn't worry under sedation in the OR. Because there were no available beds, I waited in the recovery room before I was taken to a room, IV in my arm and drains attached to my neck. I told the nurse I had been promised a room with an ocean view. (New Brunswick, New Jersey, is nowhere near the ocean!) I could hear the sound of helicopters landing around the ER, carrying critically injured people from car crashes. Just shy of 24-hours and one full meal, out I went. The ride home was painful and I felt every tiny bump in the road.
My endocrinologist gave me a copy of the pathology report. It confirmed that my papillary thyroid cancer had spread to some lymph nodes. He told me the next step was a total body scan and was furious when Robert Wood Johnson Hospital couldn't schedule me for the scan. No big deal, I thought. I'll just go somewhere else. However, Dr. Spiler wanted to make sure that it was performed in a hospital he approved with a nuclear radiologist he respected.
Soon it was back to the
hospital for a total body scan. Although I had been told by my endocrinologist
about radioactive iodine (RAI) therapy, and informed that my surgeon
couldn't remove all of the cancer, I had convinced myself that RAI
wasn't necessary. I was surprised to find a message from Dr. Theodore
Stahl, a nuclear medicine specialist, requesting to speak to me in
the morning. When I spoke with him the next day, Dr. Stahl told me
although he and Dr. Spiler had debated about the amount of radiation
I was to receive (he didn't tell me who voted for "more"
and who voted for "less"), I was to have RAI treatment nonetheless.
The dosage they agreed on was 101 milliCuries. I could stay
Back in the hospital Dr.
Stahl provided me with detailed written and oral instructions. A technician
brought a large canister, plastered with "radioactive warnings"
and a label with my name on it. This was going to be the most expensive
lunch I ever had; I sat on a stool in the hospital basement, and was
handed a small cup containing a single little pill, along with a paper
cup of water. (At these prices couldn't I have a tablecloth and a
real glass? Crystal? China?) After swallowing the pill, I was escorted
to our car to make sure no one was near me. Next, it was home, where
I was to be in isolation for a week. Only my dog was close to me.
(I still think the brain tumor she developed shortly afterwards
Once I was out of isolation it was time to begin my lifelong thyroid replacement hormone treatment. I had morning sickness for several months and commiserated with my pregnant secretary. Eventually, I learned that thyroid medication should be taken on an empty stomach, and once I started doing that, I felt better. It took many months for my body to adjust to the pills. I never felt like myself. The dosage changed after nearly every blood test. The weight I had gained wouldn't melt away.
Fast forward to the next
summer. Time for another total body scan. Time to become hypothyroid.
I didn't quite know what that would entail. The plan was this: Stop
taking Levoxyl completely. Two weeks on Cytomel. Four weeks cold turkey.
The fun was just beginning. Insomnia, constant constipation, slow
and slurred speech, stomach pains, further weight gain, brain fog,
agitation, falling asleep in the middle of the day, wandering around
the house all night, inability to get out of bed or get
Scan time again. The night before I was to take my prescan RAI pill, Lance Armstrong took the lead for the first time in the Tour de France. Since I had been a cyclist and had watched Lance win his first race after recovering from cancer in Austin, TX during the same weekend as my daughter's graduation, I viewed this as a sign I'd have a clean scan. I DID!!
Fast forward one more year. Scan time again. This time we'd try it with Thyrogen since I hadn't tolerated my hypothyroidism very well, had a clean scan the previous year, and was considered a relatively low risk. Day one: first Thyrogen shot. Only a mild headache from the Thyrogen. No other symptoms. Day two: second Thyrogen shot. Day three: RAI. Day four: total body scan. Day five: total body scan. No hypo symptoms. What a difference. Clean scan again! Two in a row! Dr. Spiler told me that since "we had so much fun" this year, we'll do it again next year!
This year when I went for my annual physical, I smiled when I learned I would be examined by the physician whom I first thought was gruff. I had thanked him for finding the lump soon after I received the diagnosis two and a half years earlier. He did know what he was doing.
What have I learned from all this? Having had a blood test every three months has resulted in overcoming my fear of needles. I know what RAI, TSH, LID, T4, T3, Tg and scans are. My respect for the medical profession, medical researchers and the pharmaceutical industry is heightened, as these industries keep me alive, and lessen the discomfort of thyroid cancer testing. I am thankful to have been fortunate enough to have access to several excellent physicians. I try to "smell the roses'" every day. I am extremely fortunate to have a caring and supportive family. I am thankful to G-d for watching over me. Every day is a gift. I know what it really means to be a survivor.
( Editor's Note: Hal R. Crane is a lawyer who resides in Morganville, New Jersey. He also volunteers for ThyCa as the Speaker Liaison for the ThyCa 2001 Conference. We are grateful to him for poignantly sharing his thyroid cancer experience with us.)
This issue's Thyca Counter looks at thyroid cancer in Australia and New Zealand. According to World Health Organization statistical estimates for the year 2000, here's how thyroid cancer adds up:
Source: WHO International Agency for Research on Cancer Data (IARC)
According to Josh Billings,
"There ain't much fun in medicine, but there's a heck of a lot
of medicine in fun." Megan Stendebach has taken this attitude
to heart, and her new web site, the Thyroid Cancer
Convinced that attitude plays a huge role in recovery, Megan set out rewriting some popular song lyrics in order to both educate and entertain the thyroid cancer community. The results are often hilarious, sometimes touching, and always a lot of fun. Sing along at http://www.thyroidcancersongs.com. You'll find many of her songs in the Humor section of the ThyCa web site as well. Megan is a member of the ThyCa Board of Directors, and is the Conference Coordinator for ThyCa 2000 and the upcoming September 2001 conference. If you haven't yet met Megan, be sure to say "Hello" to her at the opening Get-Acquainted Session Friday, September 21, 2001, which she'll be leading. We're all very lucky to have Megan aboard!
ThyCa's services are designed to support your well-being, your treatment, and your communication with health professionals. Our web site at http://www.thyca.org has details about each service and how to reach it. Our services include:
We enthusiastically invite you to join us at the 4th International Thyroid Cancer Survivors' Conference. You'll find yourself in the company of numerous thyroid cancer experts, all of whom have volunteered their time to share with us. You'll also be amongst many survivors who understand what you're going through and who can offer support. We are excited to report that by mid-July we had already received registrations from 16 states in all parts of the United States, and from Canada.
Treat yourself to the support
and education you need and deserve. Hope to see you there. You may
register at any time, including walk-in at the conference itself.
Early registrations postmarked by August 14 are $40, with free registration
for anyone requesting a scholarship, and discounts for ThyCa members
and for added family members. After August 14, the fee is $45, with
scholarships on request and with ThyCa member discounts and added
family member discounts as well. You may also
For the program, speaker list, registration form, and transportation and housing information, visit http://www.thyca.org and click on our Conference link.
Would you like to help ThyCa's volunteers reach and support more thyroid cancer survivors and families? Do you have an idea for how to improve our services? ThyCa is an all-volunteer organization. We always need more volunteers! We welcome new volunteers at any time.
If you'd like to help, please contact our Volunteer Coordinator, Karen Ferguson, at email@example.com. She'll help you find a volunteer activity for your time and interests.
The articles in this newsletter represent the opinions of their authors and are not official positions of ThyCa; Thyroid Cancer Survivors' Association, Inc. The articles by laypeople do not offer medical advice, as the authors are not doctors and have no medical training. Articles by physicians are educational and not intended to offer medical advice, as physicians cannot diagnose through the Internet. If you have medical questions, please consult with your physician.
ThyCa: Thyroid Cancer Survivors' Association, Inc. is an all-volunteer nonprofit 501(c )(3) service organization advised by nationally recognized thyroid cancer specialists and dedicated to support, education, and communication for thyroid cancer survivors, their families, and friends.
Copyright (c) 2001 ThyCa: Thyroid Cancer Survivors' Association, Inc. We encourage you to send this newsletter to your family and friends. For permission to reprint in another electronic or print publication, please contact ThyCa.
We want your comments on this newsletter! Do you like it? What would you like us to print? Send your comments to firstname.lastname@example.org or ThyCa: Thyroid Cancer Survivors' Association, Inc. P.O. Box 1545, New York, NY 10159-1545.