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
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
Pancreatic cancer organizations
The Lustgarten Foundation for Pancreatic Cancer Research
1111 Steward Avenue
Bethpage, NY 11714
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
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
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
American Cancer Society (ACS) National Office
1599 Clifton Road NE
Atlanta, GA 30329-4251
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
National Cancer Institute (NCI)
Bethesda, MD 20892
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
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
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
General cancer reading and reference
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,
Informed Decisions: The Complete Book of Cancer Diagnosis, Treatment,
and Recovery by Gerald P. Murphy, Lois B. Morris, and Dianne Lange.
Choices in Healing: Integrating the Best of Conventional and
Complementary Approaches to Cancer by Michael Lerner. The MIT Press,
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,
- Working with Your
Doctor by Nancy Keene. O'Reilly & Associates, Inc., 1998.
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.
This site provides a wide variety of information about pancreatic cancer,
pain, hospice, and many other topics. Information is provided in ten
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.
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
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
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
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.
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
Free air services
Air Care Alliance
ACA is a nationwide association of humanitarian flying organizations.
Founded in 1990, ACA members have safely flown 24,000 patients to and from
Corporate Angel Network, Inc. (CAN)
Westchester County Airport, Building 1
White Plains, NY 10604
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
Companies that will do medical information
searches for a fee:
This fact sheet was developed by Nancy Keene, an author of several
Patient-Centered Guides, including, with Wendy Hobbie and Kathy Ruccione,
Survivors: A Practical Guide to Your Future, ©
Patient-Centered Guides, 2000. Call (800) 998-9938 or check
for more information.
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