Onconurse.com -- Fact Sheet

Pancreatic Cancer Resources

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

While searching for information, if you cannot find pancreatic cancer in a list of cancers in a reference book or on a web site, look under gastrointestinal cancers or cancers of the digestive system. During Internet searches, use both "pancreatic cancer" and "pancreas cancer" as search terms.

Pancreatic cancer organizations

  • The Lustgarten Foundation for Pancreatic Cancer Research
    1111 Steward Avenue
    Bethpage, NY 11714
    (516) 803-2304
    The Lustgarten Foundation provides financial support for pancreatic cancer research, facilitates communication about the disease between scientists and doctors, and provides patient information and support.

  • The National Pancreas Foundation
    P.O. Box 600590
    Newtonville, MA 02460
    (877) NPF-FUND
    The NPF supports research on diseases of the pancreas and provides information and assistance to people who are suffering from such illnesses.

  • Pancreatic Cancer Action Network
    P. O. Box 4809
    Palos Verdes, CA 90274
    (877) 2-PANCAN
    The Pancreatic Cancer Action Network (PanCAN) works to focus national attention on the need to find the cure for pancreatic cancer. They provide public and professional education to encourage more research, effective treatments, prevention programs, and early detection methods.

Organizations providing general 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 pancreatic 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.

Pancreatic 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 PANCREAS-ONC--an unmoderated discussion list for patients, friends, researchers, and physicians, to discuss clinical and non-clinical issues and advances pertaining to pancreatic cancer. ACOR also hosts 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 www.acor.org. Click on mailing lists (on the left navbar); then click on the group you are interested in joining.

  • The Johns Hopkins Pancreas Cancer Center provides several unmoderated bulletin-board style chat rooms for patients and their caregivers. In addition to a general pancreatic cancer chat room, there is a social worker's chat room and a bereavement chat room. The general chat room and links to the other chat rooms can be found at www.pathology.jhu.edu/pancreas_chat.

  • 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.

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.

  • Final Gifts by Maggie Callanan and Patricia Kelley. Bantam Books, 1997.

  • 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 also recommends books and includes inspirational patient stories. He has links to many of the best cancer sites on the Internet.

  • CancerLinks
    This site provides a wide variety of information about pancreatic cancer, pain, hospice, and many other topics. Information is provided in ten different languages.

  • 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 important information sources for cancer patients on the Net.

  • 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.

  • Johns Hopkins pancreatic cancer home page
    Johns Hopkins Medical Institutions provide information to educate pancreatic cancer patients and their family members about the disease and treatment. The site also hosts three unmoderated chat rooms for those with pancreatic cancer and their caregivers. There is also a link to register for a study if more than one person in your family has been diagnosed with pancreatic cancer.

  • Medline Plus Health Information
    The National Library of Medicine provides links to government sites that contain information on pancreatic cancer, diagnosis, treatment, current research, and clinical trials. Contains information in both English and Spanish.

  • OncoLink
    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, responses to frequently asked questions, treatment options, and current news.

  • The Pancreatic Duct
    This web site was prepared by Don Sterner, a patient who was diagnosed with a rare form of pancreatic cancer. It is an excellent place to learn about many aspects of pancreatic cancer. There are definitions and information about staging, diet, and many other topics. It also provides links to other pancreatic cancer and general cancer web sites.

  • 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. In addition to brief abstracts from technical journals, PubMed offers FAQs, news, and clinical alerts.

Clinical trial information

Pancreatic cancer patients may find that traditional treatment options do not give them the results that they are seeking. If you are interested in pursuing clinical trials, you can find more information at these web sites:

You can also call (800) 4-CANCER (800-422-6237) for information about clinical trials from the Cancer Information Service at the National Cancer Institute.

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
    (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) 923-3680

  • Schine On-Line Services
    (800) FIN
This fact sheet was developed by Nancy Keene, an author of several Patient-Centered Guides, including, with Wendy Hobbie and Kathy Ruccione, Childhood Cancer Survivors: A Practical Guide to Your Future, © Patient-Centered Guides, 2000. Call (800) 998-9938 or check www.patientcenters.com for more information.

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