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Gilles Frydman
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 Resources. 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 advice."

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 decisions."

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 and 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."

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