Prostate Cancer Resources This list includes resources you're likely to use most often and those that are the richest sources of information specific to prostate cancer. All entries in each category are listed in alphabetical order, not by importance. Organizations related to prostate cancer The American Prostate Society 7188 Ridge Road Hanover, Maryland 21076 (410) 859-3735 www.ameripros.org The American Prostate Society is a nonprofit organization dedicated to increasing education, awareness, and service to the prostate cancer community. CaP Cure (The Association for the Cure of Cancer of the Prostate) 1250 Fourth Street Santa Monica, CA 90401 (800) 757-CURE or (310) 458-2873 www.capcure.org Founded by Michael Milken in 1993, CaP CURE identifies and supports prostate cancer research to improve treatments and cures. National Association for Continence P.O. Box 8310 Spartanburg, SC 29305 (800) 252-3337 www.nafc.org The National Association for Continence (NAFC) is a nonprofit organization dedicated to improving the quality of life for people with incontinence. NAFC publishes a quarterly newsletter, resource guide of products and services for incontinence, audio/visual programs, and other educational materials. National Prostate Cancer Coalition 1156 15th Street, NW Washington, DC 20005 (202) 463-9455 www.pcacoalition.org/ National Prostate Cancer Coalition is an organization dedicated to bringing together and representing the interests of multiple organizations and individuals with an interest in the prevention and the cure of prostate cancer through funding prostate cancer research. US Too International, Inc. 930 North York Road, Suite 50 Hinsdale, IL 60521-2993 (800) 808-7866 or (630) 323-1002 www.ustoo.com US TOO is an independent network of support group chapters for men with prostate cancer and their families. US TOO groups offer fellowship, peer counseling, and education about treatment options. It publishes a newsletter and brochures and will refer to support groups. Organizations providing general cancer information American Cancer Society (ACS) National Office 1599 Clifton Road NE Atlanta, GA 30329-4251 (800) ACS-2345 www.cancer.org The American Cancer Society has many national and local programs to help cancer patients with travel, lodging, and emotional support. They also offer a 24-hour support line for both English- and Spanish-speaking cancer patients. National Cancer Institute (NCI) Bethesda, MD 20892 (800) 4-CANCER http://cancernet.nci.nih.gov A division of the US National Institutes of Health, the NCI has an enormous web site, numerous statements, booklets, and books about cancer treatment and care, and a hotline to help cancer patients with a variety of issues such as physician referrals. To learn of the newest treatments available, call (800) 4-CANCER and ask for the PDQ (Physicians Data Query) summary for prostate cancer. These free statements explain the disease, state-of-the-art treatments, and ongoing clinical trials. There are two versions available: one for patients that uses simple language and contains no statistics and one for professionals that is technical, thorough, and includes citations to the scientific literature. The PDQ can also be found on the Internet at http://cancernet.nci.nih.gov/pdq.html. Prostate cancer Internet support groups Internet support groups (listservs or chat rooms) are free email or chat room discussions on specific topics of interest. Email subscribers receive copies of emails sent by any members of the group to the listserv. Some active groups generate dozens of messages a day. If you subscribe to the "digest" mode, you will receive one email containing all of the messages posted that day. Email discussion groups are an excellent way to connect with people in similar circumstances. Chat rooms can be either "live" chats or bulletin board-type chats. A live chat is similar to walking into a room where a discussion is already taking place except you will be typing your messages. In a bulletin board-type chat room, a participant may post a message, and others will usually respond right below that message. With any of these support groups, you may elect to participate or just observe by reading the messages of others and the responses that their messages generate. ACOR (Association of Cancer Online Resources) hosts dozens of cancer email discussion groups. ACOR offers a handy automatic subscription feature for discussion mailing lists at www.acor.org. Click on mailing lists (on the left nav bar); then click on the group you are interested in joining. Discussion groups hosted by ACOR include PROSTATE--a discussion list for patients, family, friends, researchers, and physicians to discuss clinical and non-clinical issues about prostatitis, BPH, and prostate cancer. ACOR also hosts discussion groups on CANCER-FERTILITY, CANCER-FATIGUE, CANCER-PAIN, CANCER-SEXUALITY, and dozens of other topics. Prostate cancer mailing lists not served by ACOR's computer include: CIRCLE: A moderated list offering emotional support to men with prostate cancer, as well as their family and friends. http://rattler.cameron.edu/circle/ ICEBALLS: Information and support for those interested in cryosurgery. http://rattler.cameron.edu/iceballs/ P2P (Patient to Physician): A moderated list where several physicians respond to selected questions from prostate cancer patients. http://rattler.cameron.edu/p2p/ SEEDPODS: Information and support for those interested in seed implants. http://rattler.cameron.edu/seedpods/ To subscribe to one of these mailing lists: Address an email note to majordomo@prostatepointers.org. Leave the subject line blank. Type the following as your message: SUBSCRIBE (NAME OF LIST). For example, to subscribe to CIRCLE, you would type SUBSCRIBE CIRCLE Within a few minutes, you should receive a confirmation message from the host computer. Follow the instructions to activate your subscription. To subscribe to the National Prostate Cancer Coalition (NPCC) Mailing List: Address an email note to MAJORDOMO@WWW.4NPCC.ORG. Leave subject line blank. Type the following as your message: SUBSCRIBE NPCC OncoLink, at the University of Pennsylvania, has an online FAQ (document answering frequently asked questions) about cancer listservs at http://oncolink.org/resources/faq/listserv.html. If you would like to learn a bit more about them and get answers to some specific questions, this is a good place to start. Prostate cancer reading and reference material The ABC's of Advanced Prostate Cancer by Mark A. Moyad, MPH, and Kenneth J. Pienta, MD. Sleeping Bear Press, 2000. The Complete Prostate Book: Everyman's Guide by Lee Belshin. Prima Publishing, 1997. Man to Man: Surviving Prostate Cancer by Michael Korda, MD. Random House, 1996. Men, Women, and Prostate Cancer: A Medical and Psychological Guide for Women and the Men They Love by Barbara Rubin Wainrib and others. New Harbinger Publications, 2000. The Prostate: A Guide for Men and the Women Who Love Them by Patrick C. Walsh, MD, and Janet Farrar Worthington. Mass Market Paperback, 1997. Prostate & Cancer: A Family Guide to Diagnosis, Treatment & Survival by Sheldon Marks, MD. Fisher Books, 2000. The Prostate Cancer Answer Book: An Unbiased Guide to Treatment Choices by Marion Morra, Eve Potts, and Vincent DeVita, MD. Avon Books, 1996. Prostate Cancer: A Survivor's Guide by Don Kaltenbach with Tim Richards. Seneca House Press, 1994. Prostate Cancer, Revised Edition, by David Bostwick, MD, Gregory MacLennan, MD, and Thayne R. Larson, MD. Villard Books, 1999. Videotapes: Prostate Cancer. VHS, 30 minutes. Time/Life Medical. Basic overview of prostate cancer and its treatment. Contains a booklet that includes a summary of key points, glossary of terms, a resource guide, and a personal journal. Take Charge: For Men Newly Diagnosed with Prostate Cancer. VHS, 30 minutes. State of the Art, Inc. (888) 275-2605). This video, narrated by General Colin Powell, helps men newly diagnosed with prostate cancer. Package includes a booklet that includes treatment options, a glossary of medical terms, and a resource list. General cancer reading and reference material The Cancer Dictionary, Second Edition, by Robert Altman and Michael Sarg. Checkmark Books, 1999. A Cancer Survivor's Almanac: Charting Your Journey, edited by Barbara Hoffman, JD. John Wiley & Sons, 1998. Everyone's Guide to Cancer Therapy, Third Edition, edited by Malin Dollinger, MD. Andrews McMeel Publishing, 1998. Informed Decisions: The Complete Book of Cancer Diagnosis, Treatment, and Recovery by Gerald P. Murphy, Lois B. Morris, and Dianne Lange. Viking, 1997. Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer by Michael Lerner. The MIT Press, 1996. When a Parent Has Cancer: A Guide to Caring for Your Children by Wendy Schlessel Harpham. HarperCollins, 1997. The Chemotherapy and Radiation Therapy Survival Guide by Judith McKay and Nancee Hirano. New Harbinger Publications, 1998. Sexuality and Fertility After Cancer by Leslie R. Schover. John Wiley & Sons, Inc., 1997. When Life Becomes Precious by Elise Needell Babcock. Bantam Books, 1997. Working with Your Doctor by Nancy Keene. O'Reilly & Associates, Inc., 1998. Online resources CancerGuide. www.cancerguide.org Steve Dunn, a cancer survivor, clearly explains cancer types and staging, chemotherapy, pathology reports, and the pros and cons of researching your own cancer. He also recommends books and includes inspirational patient stories. He has links to many of the best cancer sites on the Internet. CancerNet http://cancernet.nci.nih.gov/ An NCI sponsored comprehensive source of cancer information including types of cancer, treatment options, clinical trials, genetics, coping, support, resources, and cancer literature. CancerNet is one of the most comprehensive information sources for cancer patients on the Internet. CanSearch: Online Guide to Cancer Resources www.cansearch.org/canserch/canserch.htm Service of the National Coalition for Cancer Survivorship that leads you step-by-step through an online search. Clinical Trials http://clinicaltrials.gov A consumer-friendly database sponsored by the National Institutes of Health that provides information on more than 4,000 federal and private medical studies involving patients at more than 47,000 locations nationwide. PubMed www.ncbi.nlm.nih.gov/PubMed The National Library of Medicine's free search service provides access to the 9 million citations in MEDLINE (with links to participating online journals) and other related databases. It also includes FAQs, news, and clinical alerts. OncoLink www.oncolink.org/disease/pancreas/ OncoLink was founded in 1994 by University of Pennsylvania cancer specialists to help cancer patients, families, healthcare professionals and the general public get accurate cancer-related information at no charge. It contains general information, symptom management, psychosocial support and personal experiences, overviews of different types of cancer, answers to frequently asked questions, treatment options, and current news. Patient to Physician (p2p) http://rattler.cameron.edu/p2p Oncologists' answers to selected questions from prostate-cancer patients. Prostate Cancer InfoLink www.comed.com/Prostate/ Award winning site on prostate cancer that includes the "Ask Arthur" feature and the "Prostate Dictionary." Prostate Pointers http://prostatepointers.org/ Contains a wealth of information on prostate cancer. American Foundation for Urologic Disease www.impotence.org/ Free air services Air Care Alliance (800) 296-1217 www.aircareall.org/ ACA is a nationwide association of humanitarian flying organizations. Founded in 1990, ACA members have safely flown 24,000 patients to and from medical treatments. Corporate Angel Network, Inc. (CAN) Westchester County Airport, Building 1 White Plains, NY 10604 (914) 328-1313 A nationwide nonprofit program designed to give patients with cancer the use of available seats on corporate aircraft to get to and from recognized cancer treatment centers. Patients must be able to walk and travel without life-support systems or medical attention. There are no cost or financial need requirements. Companies that will do medical information searches for a fee: The Health Resource, Inc. (501) 329-5272 Can Help (360) 437-2291 Planetree Health Resource Center (415) 923-3681 Schine On-Line Services (800) FIND-CURE