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. IMPACC 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. Books 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 www.cancervive.org 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 Clinical Pharmacology 2000 Web: http://www.cp.gsm.com DrugInfoNet Web: http://www.druginfonet.com Glaxo's DoseCalc Web: http://www.meds.com/DChome.html HealthTouch Web: http://www.healthtouch.com/level1/p_dri.htm PharmInfoNet Web: http://pharminfo.com Physician's Desk Reference The Physician's Desk Reference (PDR), a compendium of information about drugs, is now reprinted in versions that are easier for the general public to understand, but you might appreciate the learning experience gained from reading the original PDR. In addition to the PDR, there are many other drug encyclopedias available for the general public. Available through bookstores or in libraries. RxMed Web: http://www.rxmed.com/prescribe.html US Food and Drug Administration (FDA) 5600 Fishers Lane Rockville, MD 20857 Phone: (301) 827-4420 or (888) info FDA, (888) 463-6332 Web: http://www.fda.gov You can report adverse effects of drugs to the FDA, too, or use their MedWatch web site at: http://www.fda.gov/medwatch/how.htm. 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 The University of Pennsylvania Cancer Center. Enter the test name and click search: http://www.oncolink.upenn.edu. The University of Michigan Pathology Laboratories Handbook. Enter the test name and click search: http://po.path.med.umich.edu/handbook/. 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