`98: First Thyroid Cancer Survivors' Conference
A Recap by Ric Blake, ThyCa `98 Coordinator
During the three days of ThyCa
`98, I cried a lot. Most of the time I was laughing. Occasionally
I was furious. I wasn't the only one riding an emotional roller coaster.
Many of the 70 survivors attending the world's first conference for
thyroid cancer survivors were overwhelmed. It's understandable. For
most, it was the first time they had met another survivor. For some,
it was the first time they had even talked with another survivor.
For all of us, it was an opportunity to watch the beginning of a movement
that promises to change the lives of survivors around the world.
ThyCa `98 was the first conference for thyroid cancer survivors to
be held anywhere. Ever.
Isolation is perhaps the toughest part of living with thyroid cancer.
It is not one of the popular cancers, like breast, lung or prostate;
consequently, there are no support and outreach services for us. Because
our disease demands lifelong testing to make sure the cancer has not
recurred, we can't ignore it. And living without a thyroid presents
challenges that only another survivor can understand. The goal of
those of us who organized the conference is to eventually create a
worldwide network of survivors helping survivors. ThyCa `98 was the
The memories of the conference is a patchwork of individual stories:
The parents of the 12-year-old survivor wanting to find other families
with a young survivor; the woman who had her surgery 38 years before
and had never met another survivor; the young woman who came alone
because her husband, who has thyroid cancer, wouldn't attend; the
truck driver who stopped on his way home from work to get information
for his niece who was diagnosed with thyroid cancer the week before; the survivor
who had given up on life and whispered to me on the last day: "I've
gotten more out of this conference than anyone. It has changed my
Not all the conference was catharsis. Much of it was nuts and bolts
planning. By the end of the conference, volunteers made commitments
to form local support groups in their communities. Thanks to our webmaster,
Betty Solbjor, we now have a web page, the first ever to be solely
devoted to thyroid cancer survivors' issues. The address is www.thyca.org and we hope to begin building the
information available at the site in November of 1998.
In addition to the support group I started in Lawrence, MA, in December
1996, we now have groups developing in Albany, Boston, Charlotte,
Chicago, New York City, Phoenix, Southern California, Toronto and
Washington, DC. By January 1999, anyone will be able to get the time
and place of the meeting nearest to them at our ThyCa web site.
Many survivors, however, do not live in urban areas with enough population
to sustain a local support group. To reach as many people as possible,
Gail Gundling of Arizona is organizing the ThyCa Outreach Network.
This worldwide group of volunteers will be available to go and meet
with anyone who needs to
talk with another survivor before their first surgery or radiation.
Perhaps the most important result of ThyCa `98 was the organization
of a steering committee that is taking steps to incorporate our far
flung community that exists now only because of the Internet as a
national, not-for-profit survivors' association. Any survivor or physician
who wants to serve on a committee or medical advisory board should
check our web page for directions on how to get involved. Our goal
is to have the first formal members' meeting at next year's conference.
And that's the best news: There will be future conferences.
It took a handful of volunteers
two years to organize ThyCa `98, and going into this year's conference,
we knew we could only have a meeting every year if enough volunteers
stepped up and offered to help. They did. Local steering committees
are now planning ThyCa `99, which will be held again in Massachusetts,
ThyCa 2000 in Phoenix, AZ, and ThyCa 2001 in Chicago.
I doubt that I will ever have
another weekend as extraordinary at ThyCa `98. It was a gift to watch
the birth of a network that will link survivors of thyroid cancer
around the Earth. If you didn't make it this year, come to Massachusetts
next year. ThyCa `99 will be even better.