Onconurse.com -- Fact Sheet

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
    Email: ccalliance@acor.org
    Web: http://www.ccalliance.org

    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
    Suite 904
    Toronto, Ontario
    M5S 2V6 Canada
    Phone (toll-free): (888) 318-9442
    Web: http://www.ccac-accc.ca

    Offers support groups, newsletter, conference, and advocacy programs.

  • Colorectal Cancer Network
    PO Box 182
    Kensington, MD 20895-0182
    Phone: (301) 879-1500
    Web: http://www.colorectal-cancer.net

    Colorectal Cancer Network offers support groups; aggressive awareness, screening, and early detection programs; and legislative action.

  • Hereditary Cancer Institute
    Creighton University School of Medicine
    Preventive 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
    Suite 201
    Sioux Falls, SD 57104
    Phone: (800)-264-6783
    Web: http://www.hereditarycc.org

    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
    Latham Square
    1611 Telegraph Ave, Suite 1111
    Oakland, CA 94612-2138
    Phone: (510) 208-3200
    Fax: (510) 208-3200
    Info Line: (800) 541-3259
    Email: nln@lymphnet.org
    Web: http://www.lymphnet.org

    Provides information on swollen limbs which may occur soon or many years after treatment.

Ostomy assistance

  • International Ostomy Association
    c/o British Colostomy Association
    15 Station Road, Reading, Berks
    England RG1 1LG
    Email: ioa@ostomyinternational.o rg
    Web: http://www.ostomyinternational.org

  • Ostomy Rehabilitation Program
    American Cancer Society
    Phone: (800) ACS-2345

  • United Ostomy Association
    19772 MacArthur Boulevard, Suite 200
    Irvine, CA 92612-2405
    Phone: (800) 826-0826
    Email: info@uoa.org
    Web: http://www.uoa.org

    Holds in-person support groups throughout the US.

  • Wound Ostomy and Continence Nurses Society
    4700 W. Lake Avenue
    Glenview, IL 60025
    Phone: (888) 224-WOCN (9626)
    Web: http://www.wocn.org

    Can refer you to an enterostomal therapy nurse in your area.

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

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
    http://cancernet.nci.nih.gov 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
    (360) 437-2291

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

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

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
    Web: http://www.cancer.org
    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.

  • Cancervive
    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
    Email: info@cansearch.org
    Worldwide Web: www.cansearch.org
    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
    Email: cancerhope@aol.com
    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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