Colon and Rectal Cancer Resources
General colorectal cancer organizations
Colon Cancer Alliance
175 Ninth Avenue
New York, NY 10011
c/o Julian Sheffield, Treasurer CCA
Phone (toll-free): (877) 422-2030
The Colon Cancer Alliance brings the voice of survivors to battle
colorectal cancer through patient support, education, research and advocacy.
Colorectal Cancer Association of Canada
180 Bloor Street West
M5S 2V6 Canada
Phone (toll-free): (888) 318-9442
Offers support groups, newsletter, conference, and advocacy
Colorectal Cancer Network
PO Box 182
Kensington, MD 20895-0182
Phone: (301) 879-1500
Colorectal Cancer Network offers support groups; aggressive
awareness, screening, and early detection programs; and
Hereditary Cancer Institute
Creighton University School of Medicine
2500 California Plaza
Omaha, NE 68178
Phone: (800) 648-8133
Hereditary Cancer Institute provides educational material and can
help evaluate families for possible hereditary cancers.
Hereditary Colon Cancer Association (HCCA)
3601 N. 4th Avenue
Sioux Falls, SD 57104
Promotes awareness, education and prevention of hereditary colon
cancer and raises awareness of the need for more research.
Hereditary Colorectal Cancer Polyposis Registry
Johns Hopkins Hospital
550 North Broadway, Suite 108
Baltimore, MD 21205
Phone: (888) 772-6566
Hereditary Colorectal Cancer Polyposis Registry provides an
opportunity to participate in research on hereditary colorectal cancer.
PO Box 11
Conynghan, PA 18219
Phone: (570) 788-3712
Intestinal Multiple Polyposis and Colorectal Cancer (IMPACC) is a
clearinghouse for information about polyposis.
National Lymphedema Network
1611 Telegraph Ave, Suite 1111
Oakland, CA 94612-2138
Phone: (510) 208-3200
Fax: (510) 208-3200
Info Line: (800) 541-3259
Provides information on swollen limbs which may occur soon or many years
Colorectal cancer support groups
A list of colorectal cancer-related internet support groups follows. Because the Internet is a dynamic resource, this list may not be comprehensive. The number of subscribers given was approximate at the time of writing, and will vary over time. The Association of Cancer Online Resources (ACOR) at: http://www.acor.org has pointers to cancer email discussion groups. ACOR offers a handy automatic subscription feature for these and other discussion mailing lists.
- COLON, run by Bill Glenning and Gilles Frydman, offers medical discussion and emotional support for all colorectal cancer survivors and their loved ones. COLON has about 500 subscribers.
- Cancer-Pain, Cancer-Sexuality, and Cancer-Fatigue are
ACOR discussion groups for those with cancer-related side effects and long-term effects. These groups were formed in early 1999.
Colorectal cancer reading and reference material
- The National Library of Medicine's MEDLINE database at
http://www4.ncbi.nlm.nih.gov/PubMed/ is the best place to find the
published results of studies on cancer treatment and care. If you need help
with searching, you can call the National Library of Medicine at
(888) 346-3656 or 594-5983.
- The US National Cancer Institute (NCI)
Attn: Cancer Information Service
9000 Rockville Pike
Bethesda, MD 20892
Hotline (800) 4-CANCER
Fax: (301) 231-6941 CancerFax: (301) 402-5874
A division of the National Institutes of Health, the National Cancer
Institute has a hotline; an enormous web site; and numerous tracts,
statements, booklets, and books about cancer treatment and care. Many of the
statements about cancer come in two versions: for patients and for physicians.
You might prefer to start with the patients' versions, but it's likely that,
as you learn more, the physicians' statements will provide better, more
detailed answers to your questions. The physicians' information is often part
of PDQ, Physicians' Data Query.
- Beck, G., ed. Handbook of Colorectal Surgery. Louis, Missouri: Quality Medical Publishing, 1997.
- Cohen, A., and S. Winawer, eds. Cancer of the Colon, Rectum, and Anus. New York: McGraw-Hill, Inc., 1995. As of this writing, this is the most current and comprehensive textbook available that is specifically devoted to colorectal cancer. You might be able to find a copy in your doctor's office, a hospital library, or a university library.
- Johnston, L. Colon and Rectal Cancer: A Comprehensive Guide for Patients and Families. Sebastopol, CA: O'Reilly & Associates, 2000. This book provides up-to-date and in-depth information to help patients and families participate wisely in treatment decisions. It covers coping with tests and treatment side effects, caring for ostomies, finding support, and other practical issues. Includes many stories and coping techniques from those living with colon cancer.
- Levin, B. Colorectal Cancer: A Thorough and Compassionate Resource for Patients and Their Families. New York: American Cancer Society/Random House, 1999.
- Miscovitz, P., and M. Betancourt. What to Do If You Get Colon Cancer. New York: John Wiley and Sons, 1997.
- Phillips, Robin, ed. Colorectal Surgery. London: W. B. Saunders Co. Ltd., 1998.
- Wanebo, H., ed. Surgery for Gastrointestinal Cancer: A Multidisciplinary Approach. Philadelphia: Lippincott-Raven, 1997. Another comprehensive textbook.
Document retrieval services
Document retrieval services can fax or mail you the full text of any published research paper. On the Internet, the Medline service providers HealthGate, Medscape, Helix, PhyNet, PDRnet.com, SilverPlatter, Ovid On Call, Infotrieve, PaperChase, and others offer full-text services for a fee. Do a Web search on any of these names.
Companies that will do medical information searches for you for a fee are:
- Can Help
- The Health Resource, Inc.
- Schine On-Line Services
General cancer reading
- Crane, Judy B. How to Survive Your Hospital Stay. Westlake Village, California: The Center Press, 1998.
- Dunn, Steve. CancerGuide. Available online at: http://www.cancerguide.org/sdunn_story.html.
- Harpham, Wendy. After Cancer: A Guide to Your New Life. New York: W. W. Norton, 1995.
- Harpham, Wendy. When a Parent Has Cancer: A Guide to Caring for Your Children.. New York: HarperCollins, 1997.
- Keene, Nancy. Working with Your Doctor: Getting the Healthcare You Deserve. Sebastopol, California: O'Reilly & Associates, 1998.
- Lerner, Michael. Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer. Cambridge, Massachusetts: The MIT Press, 1996.
- McKay, J., N. Hirano, and M. Lampenfeld. The Chemotherapy & Radiation Therapy Survival Guide. New Harbinger Publications, 1998.
- The Merck Manual. A vast resource available in either the paper version or at their web site: http://www.merck.com. Many public libraries have a copy of the Merck Manual in their non-circulating reference section.
- Schover, L. Sexuality and Fertility after Cancer. New York: John Wiley & Sons, 1997.
Books about cancer for children
- Clifford, Christine. Our Family Has Cancer, Too! Pfeifer-Hamilton Publishing, 1997.
- Harpham, Wendy Schlessel. Becky and the Worry Cup: A Children's Book about a Parent's Cancer. HarperCollins, 1997.
- Kohlenberg, Sherry. Sammy's Mommy Has Cancer. Magination, 1993. For preschoolers.
General cancer organizations
- American Cancer Society National Office
1599 Clifton Road NE
Atlanta, GA 30329-4251
Phone: (800) ACS-2345
The American Cancer Society has many national and local programs, as well as a 24-hour support line, to help cancer survivors with problems such as travel, lodging, and emotional issues.
- Cancer Family Care
7162 Reading Road, Suite 1050
Cincinnati, OH 45237
Phone: (513) 731-3346
Offers counseling to families affected by cancer.
6500 Wilshire Boulevard, Suite 500
Los Angeles, CA 90048
Phone: (213) 655-0640
Offers many services to cancer survivors.
- Hereditary Cancer Institute
Dept. of Preventative Medicine, Creighton University School of Medicine
2500 California Plaza
Omaha, NE 68178
Phone: (800) 648-8133
Evaluates families for risk, and furnishes educational material to families with hereditary cancers.
- National Cancer Care Foundation
275 7th Avenue, 22nd Floor
New York, NY 10001
Phone: (212) 312-2400 or (800) 813-HOPE
Provides information, support, and counseling for those affected by cancer.
- National Coalition for Cancer Survivorship
1010 Wayne Avenue, Sutie 770
Silver Spring, MD 20910-5600
Phone: (301) 565-9670 or (877) NCSS-YES or (877) 622-7937
Fax: (301) 656-9670
Formed by cancer survivors to offer support and to effect change in progress against cancer through legislative efforts, they have published the Cancer Survivor's Almanac, a good reference for any cancer survivor.
- National Family Caregivers Association
9621 East Bexhill Drive
Kensington, MD 20895
Phone: (800) 896-3650
Provides a variety of services to caregivers.
- People Living Through Cancer, Inc.
323 Eighth Street, SW
Albuquerque, NM 87102
Phone: (505) 242-3263
Offers many services to cancer survivors.
- PWA Coalition Hotline
50 West 17th Street, 8th Floor
New York, NY 10011
Phone: (800) 828-3280
Furnishes assistance to those with AIDS, including AIDS-related colorectal cancer. A really nice group of people.
- R. A. Bloch Cancer Foundation
4410 Main Street
Kansas City, MO 64111
Phone: (816) 932-8453
Offers a variety of services to cancer patients and survivors, such as telephone-based second medical opinions and one-on-one phone contact between cancer survivors.
- Well Spouse Foundation
610 Lexington Avenue, Suite 814
New York, NY 10022
Phone: (800) 838-0879
Offers support to those whose spouses are chronically ill.
Drug and dosage information
Tests and procedures
These resources can help you learn how tests are done, and what the results mean.
Information on how tests are done
- Barry, L., ed. The Patient's Guide to Medical Tests. Houghton Mifflin Co., 1997.
- The Biology Project. University of Arizona: http://www.biology.arizona.edu.
- Brodin, Michael B. The Encyclopedia of Medical Tests. Pocket Books, 1997. A 1982 book with the same title written by Pinckney and Pinckney should be passed over in favor of this newer book.
- Department of Pathology, University of Washington, Seattle: http://www.pathology.washington.edu.
- Mid-South Imaging & Therapeutics, P.A.: http://www.msit.com.
- Stauffer, Joseph, and Joseph C. Segen. The Patient's Guide to Medical Tests: Everything You Need to Know About the Tests Your Doctor Prescribes, 4th ed. Facts on File, 1997.
Normal values of tests
Clinical trials and investigational new substances
- The Food and Drug Administration at: http://www.fda.gov contains regulations for investigational new drugs and for importing foreign drugs for single-patient use.
(888) info FDA, (888) 463-6332
- The book Intuitive Biostatistics, by Harvey Motulsky, can help you understand published results of clinical trials, and can help you assess trial design if you're planning to enroll in a trial.
- The National Cancer Institute Clinical Trials web site is the most comprehensive way to locate trials of new substances and treatments: http://cnetdb.nci.nih.gov/trialsrch.shtml.
- QuackWatch on the Internet gives the medical scientist's evaluation of those unusual remedies you've been hearing about: http://www.quackwatch.com.
- Niebuhr, Bruce. Handbook of Clinical Trial and Epidemiological Research Designs. January 1998. www.sahs.utmb.edu/pellinore/intro_to_research/clintrls.htm.
- Steve Dunn's Cancerguide is an excellent resource for learning how to assess clinical trials and how to research your illness: http://www.cancerguide.org.
This fact sheet was adapted from Colon and Rectal Cancer: A Comprehensive Guide, by Lorraine Johnston, © 2001 by Patient-Centered Guides. For more information, call (800) 998-9938 or see www.patientcenters.com
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