The very first stop on the Web for anyone newly diagnosed with the big C should be the non-profit ACOR site. Home of 200+ support groups for cancer, the life-changing advice on this clearinghouse is supplied outside the view of search engines, so you probably won’t encounter it by Googling.
Talking with survivors of your type of cancer is the best place to start. It normalizes the experience, provides vital information and support, directs you to the other resources you will need, saves you many wasted hours on the Net, helps you make sure that you’re getting the best available medical care, and plugs you into a continuing network within which you can both ask for help and be of help to others.
About half of the ACOR communities are composed of patients and family caregivers concerned with a specific type of cancer, e.g., the Lung Cancer Online Support Group, the AdenoCarcinoma of Unknown Primary Online Group, and the Prostate Problems Mailing List. Other groups focus on topics of interest to patients with cancer, e.g., the Cancer Patients Christian Online Support Group, the Cancer and Fertility Discussion Group, and the Complementary & Alternative Medicine Clinical Trials Discussion Group.
ACOR was established in 1995 by New York artist Gilles Frydman to host his wife’s breast cancer mailing list. It then opened it’s virtual doors, offering to host any noncommercial cancer-related mailing list. It now hosts nearly all such lists, and Frydman (firstname.lastname@example.org) and his ACOR colleagues are always happy to help patients, family caregivers, or medical professionals start new cancer-related lists on needed topics. They’ve made a special effort to develop new support groups for rare cancers. And their Rare Cancers Discussion Group can be a godsend for patients with extremely rare forms of cancer.
To find the group you need, click on the Mailing Lists/Online Communities link at the ACOR home page, then search or browse till you find the group you’re looking for. You will then be prompted to enter your e-mail address and to choose a password. ACOR will immediately send you an e-mail message confirming your request. When you click on the link in this e-mail, your password will be activated. (This procedure protects users from search engines and spam.)
Once your password is activated, you can browse or search the list’s archives of past postings. You can also sign up to receive future postings. For active lists, the once-a-day “daily digest” option is strongly recommended.
Since ACOR blocks search engines and links for privacy protection, the group you’re looking for may not show up on a Google (or other search engine) query for general terms. So if you know anyone with cancer, do them a favor: Send them a copy of this review.05/5/04