Dateline: November 2, 1998
On September 18, 1998 thyroid cancer (Thyca) survivors met in Boston for the first time in history at their own conference. The event, known as ThyCa '98, was a gathering of survivors, their families, friends, health care professionals, and students. Here, we offer a variety of information recapping the conference, including:
The Origins of the Thyca Conference
The Conference's Agenda
A Recap by Ric Blake, ThyCa `98 Coordinator
Ric Blake's Opening Remarks to the Conference
Gail Gundling's Remarks to the Conference
The Origins of the Thyca Conference
Thyca survivors may never have met another person with thyroid cancer, according to Ric Blake, because "this is not a disease that affects many thousands, as does breast and prostate cancer. Only 12,000 - 15,000 are diagnosed with Thyca each year. We are so few," Blake adds, "that unless they specialize in thyroid disease or surgery, physicians may go through their entire career
treating only a handful of Thyca patients. Some doctors have never seen one."
Unlike many other types of cancer, thyroid cancer treatment requires taking daily medication and for the rest of ones life undergoing period diagnostic procedures and sometimes radiation. Learning to live with the disease is much more difficult if you never have the chance to meet others with thyroid cancer.
Blake says he and a handful of others developed the conference to "give survivors a chance to talk with those walking the same path. Unless you live with the disease, you don't know, can't know, what living with thyroid cancer is like. It is important for survivors of any type of cancer to build a community of support. We need to talk with other survivors about how it affects us and our families, how we can manage our treatments while working and taking care of our families-all the basic, daily living issues that our medical providers too often ignore or give short shrift because of the lack of time. This is a conference by survivors, for survivors. We hope the atmosphere will be as warm and welcoming as sitting around your best friend's kitchen table over a cup of coffee. Finally, we have a chance to meet each other."
ThyCa '98 has historic importance also. Because of their small numbers, survivors have never had enough people in any area to organize on a large scale for mutual support and education. The Internet changed that, making it possible to develop an international network of survivors, their physicians and caregivers. Within the past three years, a handful of Thyca survivors have created a mutual support group that meets in a chat room on America Online weekly, two mailing lists that have more than 400 subscribers. And by the end of the year, the first ThyCa mutual support group, which Blake organized in 1996, will have grown to a half dozen in the U.S.
The ThyCa Listserv
The Thyroid Cancer (ThyCa) Listserv is an email list for sharing support and information for people with cancer of the thyroid. They provide a mixture of personal experiences, medical information, scientific news, and support for living with thyroid cancer. No question or subject related to thyroid cancer is too small or too large. They discuss all of the personal and scientific aspects of this disease and how it affects their lives. They want to keep their list as candid and as impartial as they can. To help maintain this atmosphere of trust, vendors and advertisements are not allowed on this list.
To subscribe, send e-mail to firstname.lastname@example.org with this in the body of the message (not in the Subject line):
To unsubscribe, send e-mail to email@example.com with this in the body of the message (not in the subject line):
Contact firstname.lastname@example.org if you have problems.
In 1995, Blake was diagnosed with thyroid cancer at age 50. Since then, he has become a good student of his disease. "The good news," Blake explains, "is that relatively few people get thyroid
cancer. The bad news is that because the numbers are small, thyroid cancer is a disease ignored by the media and by organizations that offer support and resources for cancer survivors and their families."
Following his surgery in October 1995, Blake discovered that information about his type of thyroid cancer in particular and thyroid cancer in general was difficult to get. "I received no patient education information from my surgeon, my primary care physician, my endocrinologist nor the hospital at the time of my surgery or during the first months of treatment to follow. What I needed was easy-to-understand, comprehensive information and, more importantly, a chance to meet with other thyroid cancer survivors, either by phone, mail or face to face. What I received from my health care providers was nothing."
"During the next six months I found the Thyroid Foundation of America, but most of TFA's efforts are focused on all thyroid diseases. Consequently the information they have on the uncommon thyroid cancer is limited. In the spring of 1996, my wife and I began attending support groups for cancer survivors at the Wellness Community in Newton Center, MA, just outside of Boston. The support groups were great for supporting those newly diagnosed with cancer. But I quickly realized a cancer-specific support group would be much more helpful to us," Blake says.
The following September, just before he began radiation treatments, Blake discovered a weekly thyroid cancer chat room on America Online. The chat room was organized by Karen Ferguson, a resident of Charlotte, NC, who was diagnosed with thyroid cancer the preceding year. The America Online chat room, which is open to all Thyca survivors from 8:00 to 9:00 p.m. on America Online every Monday night remains the only chat room devoted to thyroid cancer. To participate at AOL, go to Glenna's Garden (keyword: glenna).
By the time his treatment was finished, Blake decided to start a support group in the Merrimack Valley area of Massachusetts and New Hampshire. He turned to cancer organizations for help starting a local group. To his surprise, he discovered there was no thyroid cancer survivor support group meeting anywhere in the United States. Almost two years after organizing that first support group, Blake has prepared a manual with material and guidelines for starting local support groups and is working with other survivors to begin groups across the country. From that first group, as many as six are now in the planning stages.
"Thyca '98 will be the first conference ever held anywhere at any time strictly for thyroid cancer survivors, Blake says. "It still amazes me that there has never been a conference for thyroid cancer survivors. After all, there are at least 200,000 of us just in the United States, representing one percent of all cancer. Our goal for Thyca '98 is to increase public awareness and to let other survivors know they are not alone. If we can get the media to help survivors tap into the growing world-wide network of support, then we will have done our job."
In January 1997, he coined the term "ThyCa" and began recruiting other survivors and their physicians through the Internet. Within days there was a network of volunteers; ThyCa '98 is the result of their effort.