Savage, a Boston Globe correspondent and ITF contributor, was awarded the Pulitzer Prize for national reporting. This story was originally published June 4, 2001.
(Illustration by Melissa Scram)
“No man is an island,” the poet John
Donne assures us. But on October 5, 1998, I had a hard time sharing his
optimism. That was the day I found out I had LMS — leiomyosarcoma,
a rare cancer of soft muscle tissue that strikes fewer than four people
out of a million.
But despite those numbers, I never really felt alone. Today, people
with extremely rare medical conditions around the world are banding together
via email groups. It is, in every sense, a revolution in terms of patient
empowerment, one that has quickly spread in the past couple of years.
Cancers like LMS are among the loneliest of illnesses. While those with
more common cancers can usually find a network of others in the same city
who have the same condition and who are going through the same thing,
my chances of ever meeting another LMS patient seemed slim.
Only a few years ago, that isolation would have been my new reality.
It certainly was for Orland Hetherington, a native of Ontario, Canada,
who had LMS diagnosed in 1994. “I spent two years trying desperately
to find another living soul with LMS,” Hetherington said. “I
was alone with this and scared. I became somewhat obsessed with finding
someone else on the planet with LMS and searching harder for more and
In March 1997, LaDonna Backmeyer, an LMS patient in Rock Island, Illinois,
found Hetherington on a cancer online support list. She asked him to help
her start an online discussion group specifically for LMS patients and
their families and friends. From just four members then, that email group has
grown to more than 560 subscribers.
For a while, I was one of them. The group instantly welcomed me to its
ranks with both personal notes of understanding and a barrage of advice
on treatment options and research information that helped me know more
about what lay ahead during my recovery.
The group “has given information to several hundred patients since
its founding,” Backmeyer said. “Some of the patients check in
for a small amount of time in order to get the information they need;
others find a group of welcoming friends, and they stay.”
All this from a machine
my case, the group helped me learn about a then-experimental surgical technique
developed by Dr. Steven
Curley at the M.D. Anderson Cancer
Center in Houston. I flew to Houston and underwent Curley's surgery, which
removed all traces of tumor from my liver in December 1998. As of my last trimonthly
check up, I remain cancer-free without having had to undergo chemotherapy.
In October 2000, Curley was quoted in a U.S. News & World
Report article about a successful
new generation of cancer-fighting techniques; because of the help of the LMS
group, I found him two years before the general public learned of his existence.
are similar email lists for about sixty other cancers. All are the offspring
of a single group list started three years ago by the not-for-profit Association of Cancer Online Resources, founded
by Gilles Frydman, a New York City computer entrepreneur. Frydman's wife was
stricken with breast cancer and found information through an email list that
helped her avoid a mastectomy.
"I started to look at how cancer patients use
the Internet," Frydman said. He found that people with a variety
of cancers all seemed to end up on a single, general-cancer email list.
"I thought it was outrageous that only people suffering from very
common forms, like breast and prostate cancer, got their own specific
mailing list. So it seemed to me that what we should do was create a mailing
list for every known type of cancer." Today, there are more than 125 email groups, with a total enrollment in
the tens of thousands.
"Everyone comes to this support group with
no idea of the vast information that is going to be shared with them,"
said one LMS group member, Cynthia Whitson of LaGrange, Georgia. "We all
just come to selfishly help ourselves find the way through the maze of doctors,
facilities, treatments, and side effects. We find that we become a part of an
emotional movement to collectively find the answer to each one's question."
many, helping others on the list find answers becomes a way to cope themselves.
"I had every intention of getting off the group during this three-month
break between treatments while I waited for the next scan date," Whitson
said. "But you can't leave it. It becomes a part of your life, just as
cancer will forever be a part of your everyday life."
members of these rare-cancer communities attest to this sense of involvement--becoming,
in the words of Donne’s
poem, not an island but a “part of the main … involved
“The list, for me, has meant longer time here on Earth and incredible
satisfaction in trying to help others with LMS,” Hetherington said. “It’s a motivator. It gives strength, humor,
and sometimes even poetry that uplifts. All this from a machine that I
used to see as a beefed-up typewriter and techno-toy for technocrats.”