Meet Activist Gilles Frydman
By Nancy Keene
In 1995, Monica Frydman learned that she had ductal carcinoma in situ, a type
of breast cancer. Her physician decreed the treatment: mastectomy,
chemotherapy, and reconstruction. Monica and her husband, Gilles, went home
to explore their options. Frydman said, "At first, I thought it was a death
sentence for my wife."
Frydman decided he needed information fast. He went on the Internet and,
within ten minutes, discovered a breast cancer discussion group--one of only
four that existed at the time. He described Monica's situation and asked for
help. Answers to his questions flooded his email. He learned almost
immediately that his wife had been diagnosed with early-stage breast
cancer--not advanced disease--and that the state-of-the-art treatment for
Monica's cancer was lumpectomy and radiation, not mastectomy. The online
community provided a list of the best doctors in his area and an outpouring
of emotional support.
Listservs (also called mailing lists) like the one Frydman discovered are a
recent phenomenon. Unlike chat rooms, in which everyone talks at once,
listservs operate in a different way. Anyone interested in a topic
subscribes and then receives individual emails posted from anyone in the
group. Topics on cancer listservs typically include the newest research, ways
for family members to cope, chemotherapy side effects, information about
experts in the field, and humor. Each list develops a character of its own,
and they evolve over time as the membership shifts.
During his wife's treatment, Frydman continued to participate on the list. He
was amazed at the quantity, complexity, and accuracy of the information
shared. The time and effort donated by the list owners and some members was
equally impressive. Frydman found so much valuable information that he
wondered why the emails (also called "posts") were not stored so that the
accumulated wisdom of the group was available for new members.
In September 1995, he contacted the list owners and offered to archive the
information in a centralized place. In 1996, he founded ACOR--the Association
of Online Cancer
This nonprofit organization, funded by Frydman, now hosts 99 electronic
mailing lists and a variety of unique websites. The mailing lists provide
information and community to over 44,000 patients and caregivers. Many
professionals (physicians, social workers, nurses) also participate on the
lists and use professional lists to communicate among themselves. ACOR
delivers over 1,800,000 individual messages around the world every week.
Frydman believes that, "Coping with cancer is 95% community and 5% expert
Medical information is now booming on the Internet. Some is provided by
organizations with experience and integrity while on other sites snake oil
salesmen hawk miracle cures to the unwary. Large numbers of experts--both lay
and professional--subscribe to ACOR lists. If a member posts medical
information, it is scrutinized closely, and requests for citations to the
literature are often made. The quality of the medical information shared is
very high. Frydman believes passionately in people's right to research and
make their own medical decisions. He said, "It is your body and your life.
You have the right to do the research, talk to others, and make your own
People with cancer and those who love them find camaraderie, information, and
solace on ACOR's lists. One woman who dealt with the long-term effects from
her cancer treatment in isolation said, "I love to tell people about my
Internet quest. After cruising the archives, I sat at my computer and cried.
This list is the best thing that has happened to me in years."
The mother of a child with cancer said, "Illness can isolate a family into a
daily ritual that prevents the parents from finding information and support.
The Internet has opened two very important doors for us. We now have
information at our fingertips, any time of the day, that helps empower us to
make informed decisions. It also provides a place where we can bond with other
families of children with cancer. For a long time I felt like I was standing
alone on an island in the middle of the ocean. Then I found the list. I
often come to my computer in the middle of the night, when everyone else is
asleep. Someone is always there to hold my hand and reassure me that they
have felt these things, too."
Membership in ACOR's lists continues to grow as cancer patients search for
information and support online. To join an ACOR list, go to the home page at
click on "mailing lists" on the navbar on the left. Then click on the list you
would like to join and follow the directions. The ACOR web site also contains
direct links to the National Cancer Institute's CancerNet service, the best
cancer web sites on the Internet, a comprehensive glossary of cancer terms,
and a search engine.
Frydman summed up his philosophy on why ACOR's lists enjoy such huge success:
"Anyone diagnosed with cancer enters the cancer continuum: the life of that
person and her or his caregivers will never be the same. Participating in one
or more of the cancer forums helps people better cope with their current
medical or psychosocial issues in the safest environment possible. Thanks to
the lists, people realize that--contrary to what they feared at first--they
are not alone."