Just Get Me Through This! - Revised and Updated. Deborah A. Cohen
special conference news highlights of breast cancer medical forums and conferences.
• National Cancer Institute (NCI)
Bethesda, MD 20892
Phone: 800-4-CANCER (Cancer Information Service)
Web site(s): www.cancernet.gov or www.nlm.nih.gov (for the U.S. National Library of Medicine’s MEDLINE and other online services)
As one of eight government agencies that comprise the National Institutes of Health, NCI is funded through the U.S. Department of Health & Human Services. Their nationwide Cancer Information Service (CIS) is a free public service education network that has trained staff to answer your questions, send you relevant written materials, or refer you to resources in your local area, including medical facilities, home care assistance programs, and support groups and services (both emotional and financial). Information is also available via their CancerFax® computerized service, by calling 301-402-5874 and following instructions. Or you can access their Web site, which can also be your gateway to Internet breast cancer information, as they provide a directory of “Useful Links.”
Regardless of how you contact NCI, you’ll have access to their database, Physician Data Query (PDQ), the most detailed, timely data relevant to your specific cancer available anywhere. Just provide the details of your specific cancer—cell types, stage, tumor size, etc.—and they’ll send the latest on treatment protocols, side effects, prognosis, relevant clinical trials, and research programs. There are two versions—one for doctors, one for consumers. Neither is uplifting reading, but discussing them with your doctor will reassure you that you are on the leading edge of treatment.
• American Cancer Society (ACS)
National Office
1599 Clifton Road, NE
Atlanta, GA 30329-4251
Phone: 1-800-ACS-2345, 1-800-395-LOOK (for Look Good,
Feel Better® Program only)
Web site: www.cancer.org
With chapters in most major cities, the volunteer-based ACS is one of the most widely known cancer organizations. Since ACS deals with all types and stages of cancer, its services are extensive, but some of the written publications can be a bit generic (better to stick with books specific to breast cancer or publications provided by your doctors). However, ACS efforts specifically for breast cancer include:
• The Breast Cancer Fund
282 Second Avenue, 2nd floor
San Francisco, CA 94105
Phone: 415-543-2979 or 800-487-0492
Web site: www.breastcancerfund.org
The Breast Cancer Fund (BCF) was founded in 1992 to raise awareness and fund cutting-edge projects in research, education, patient support, and advocacy. Its mission is to eliminate deaths from breast cancer in our lifetime, and make sure that women living with breast cancer receive the best available care and support. Emphasizing quality of life for women living with breast cancer, they focus on such issues as early detection programs, the value of exercise during treatment, psycho-social programs for patients and families, integration of complementary techniques with traditional medical treatments, and research in areas such as investigating less toxic treatments or the potential impact of the environment on the development of breast cancer.
One of their more visible programs to raise hope, awareness, and funding is “Climb Against the Odds,” in which a group of breast cancer survivors climb some of the world’s highest mountain peaks (which have included Mt. McKinley and Mt. Aconcagua to date). The motivational message is that you can make it through breast cancer just as you can make it to the top of a mountain—one step at a time.
• SHARE
1501 Broadway, 17th floor
New York, NY 10036
Phone: 212-719-0364 or 212-382-2111 (for hotline)
Web site: www.sharecancersupport.org
This New York–based volunteer organization is a unique, nonprofit self-help support organization for women with breast or ovarian cancer and their families and friends. SHARE’s services include information hotlines, peer-led support groups, public education, advocacy, and wellness programs. Visible on a national basis, SHARE’s work enables women to make informed decisions about their medical care and treatment, and contributes to a broader awareness regarding research, prevention, and early detection. With its extensive and broad membership, SHARE’s programs run the gamut, including special programs for young women, parenting after breast cancer, alternative medicine and nutrition, meditation and visualization, and information on leading-edge medical breakthroughs. Even if you don’t live in New York, it’s a very helpful network to tap into.
• National Coalition for Cancer Survivorship
1010 Wayne Avenue, 5th floor
Silver Spring, MD 20910
Phone: 888-YES-NCCS or 888-650-9127 (toll-free direct
line)
Web site: www.canceradvocacy.org
Founded by and for cancer survivors, NCCS is a national grassroots network. Its mission is to lead and strengthen the cancer survivorship movement, to empower cancer survivors, and to advocate for policy issues that affect survivors’ quality of life. NCCS serves as a clearinghouse for information on services and materials on survivorship. A sampling of the useful publications available from NCCS (some for a nominal fee, others free) include: “Working It Out: Your Employment Rights as a Cancer Survivor,” or “What Cancer Survivors Need to Know About Health Insurance.” Their Web site also contains a useful section called “CanSearch: Online Guide to Cancer Research.” In addition to general oncology-related Web sites, it suggests several breast cancer–specific sites.
• Y-ME Breast Cancer Support Program, Inc.
212 West Van Buren, 4th floor
Chicago, IL 60607
Phone: 800-221-2141
Web site: www.y-me.org
Y-Me provides information and education programs for patients, as well as