Onconurse.com -- Fact Sheet

Ovarian Cancer Resources

This list includes resources you're likely to use most often and those that are the richest sources of specific information on ovarian cancer. All entries in each category are listed in alphabetical order, not by importance.

Ovarian cancer organizations

  • Gilda's Club, Inc.
    195 West Houston Street
    New York NY 10014
    (212) 647-9700
    Gilda's Club is a nonprofit organization that provides home-like places for cancer patients, their families, and friends to meet for social and emotional support. They sponsor support groups, workshops, and social events.

  • National Ovarian Cancer Coalition, Inc.
    500 NE Spanish River Boulevard, Suite 14
    Boca Raton, FL 33431
    (888) OVARIAN or (561) 393-0005
    A nonprofit organization devoted to raising awareness about ovarian cancer, providing complete and accurate information about the disease, and raising funds for research and education. The comprehensive web site includes resource lists, frequently asked questions, contact information for online and community support organizations, and news.

Major organizations providing cancer information

  • American Cancer Society (ACS) National Office
    1599 Clifton Road NE
    Atlanta, GA 30329-4251
    (800) ACS-2345
    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
    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 ovarian 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.

Ovarian 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. Discussion groups hosted by ACOR include OVARIAN--an unmoderated discussion list with over 1,000 subscribers. ACOR also has discussion groups on CANCER, CANCER-FATIGUE, CANCER-PAIN, CANCER-PARENTS, and dozens of others. ACOR offers a convenient automatic subscription feature for discussion mailing lists at http://www.acor.org. Click on mailing lists (on the left nav bar) then click on the group you are interested in joining.

  • The National Ovarian Cancer Coalition (NOCC) hosts a chat area for women with ovarian cancer. To participate, go to www.ovarian.org/ and click on "Chat" listed under "Support" on the left nav bar. They have a feature that allows participants to schedule chat events on particular topics. The NOCC also hosts multiple listservs on various topics including a resource list, awareness list, caregiver's list, humor list, and others. To subscribe, click on "Mailing lists" under "Support" on the left nav bar.

  • 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.

Books on ovarian cancer

  • Gilda's Disease: Sharing Personal Experiences and a Medical Perspective on Ovarian Cancer by M. Steven Piver, MD, with Gene Wilder. Prometheus Books, 1996.

  • No Time to Die: Living With Ovarian Cancer by Liz Tilberis and Aimee Lee Ball. Avon, 1999.

General 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.
    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 recommends books, includes inspirational patient stories, and has links to many of the best cancer sites on the Web.

  • CancerNet
    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 Net.

  • CanSearch: Online Guide to Cancer Resources
    Service of the National Coalition for Cancer Survivorship that leads you step-by-step through an online search.

  • Clinical Trials
    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.

  • Conversations
    International newsletter for women fighting ovarian cancer.

  • Gilda Radner Familial Ovarian Cancer Registry
    Roswell Park Cancer Institute hosts an international registry of families with two or more members with ovarian cancer. They promote ovarian cancer research and offer a help line, education, and peer support for women with a high risk of ovarian cancer.

  • OncoLink
    University of Pennsylvania cancer specialists founded OncoLink in 1994 to help cancer patients, families, healthcare professionals, and the general public get accurate cancer-related information at no charge. It contains information on ovarian cancer, causes, treatment options, hormones, symptom management, causes, psychosocial support and personal experiences.

  • PubMed
    The National Library of Medicine's free search service provides access to the 9 million citations in MEDLINE (with links to participating on-line journals) and other related databases. Also includes FAQs, news, and clinical alerts.

  • Ovarian Cancer Research Notebook
    The OCRN is a comprehensive list of articles on treatment for ovarian cancer that contains approximately 3,000 documents. It is maintained and upgraded by the National Ovarian Cancer Association of Toronto, Canada.

  • The Women's Cancer Network
    Site developed by the Society of Gynecologic Oncologists to help prevent, detect, and conquer cancer in women. It has cancer information, a bookstore, survivor stories, links to other web sites, and a helpful find-a-doc feature.

Free Air Services

  • Air Care Alliance
    (800) 296-1217
    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
    (800) 328-4226 or (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:

  • Can Help (360) 437-2291

  • Planetree Health Resource Center
    (415) 923-3681

  • Schine On-Line Services
    (800) FIND-CURE

  • The Health Resource, Inc.
    (501) 329-5272

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