Advanced Breast Cancer Resources Information BreastCancer.Net http://www.breastcancer.net An e-mail service that surveys popular Internet medical and health news sources for information, then e-mails it to you daily. Subscriptions to this newsletter are free. Community Breast Health Project http://www-med.stanford.edu/CBHP/ Among other resources, this website contains the full text of Jenilu Schoolman's essay on living with metastatic breast cancer, Within Measured Boundaries. NCI CancerNet http://cancernet.nci.nih.gov/ The NCI website with all the most updated information. See the Bonn and Oncolink websites listed below for hyperlinked access to this information, so that references and abstracts appear when you click on the footnotes in the medical review articles. NCI CancerNet Database Main Index Redistributed by University of Bonn Medical Center http://imsdd.meb.uni-bonn.de/cancernet/cancernet.html This is a fully hyperlinked interface to all the NCI information. National Health Information Center (NHIC) http://nhic-nt.health.org/ A comprehensive list of toll-free numbers for health information. Oncolink http://www.oncolink.upenn.edu The University of Pennsylvania Cancer Center Resource. The best single one-stop resource with information on all aspects of cancer, and pointers to other sites. PDQ Physician Statement on Breast Cancer http://imsdd.meb.uni-bonn.de/cancernet/100013.html http://www.oncolink.upenn.edu/pdq_html/1/engl/100013.html Although the NCI Statements can be obtained directly from the NCI, this excellent version hyperlinks references in the text to the article abstracts, a major convenience. It is also available in Spanish. Services American Cancer Society 1599 Clifton Road NE Atlanta, GA 30329-4251 Hot line: (800) ACS-2345 World Wide Web: http://www.cancer.org/ The American Cancer Society has a national network of both employees and volunteers who implement research, education and patient service programs to help cancer patients and their families cope with cancer. Blood & Marrow Transplant Information Network (formerly BMT Newsletter) 2900 Skokie Valley Road, Suite B Highland Park, IL 60035 (847) 433-3313 or toll-free (888) 597-7674 Fax: (847) 433-4599 Email: help@bmtnews.org www.bmtnews.org Publishes Blood & Marrow Transplant Newsletter, for bone marrow, peripheral stem cell, and cord blood transplant patients, and books on bone marrow and stem cell transplantation. Also available are the Transplant Center Database of more than 250 transplant programs in the US and Canada, a resource directory, an attorney referral service for those having difficulty persuading their insurer to pay for treatment, the Patient-to-Survivor Link Service, and a comprehensive web site. The Susan G. Komen Breast Cancer Foundation (800) I'M AWARE or (800) 462-9273 World Wide Web: http://www.komen.org/ The Komen Foundation was established in 1982 by Nancy Brinker in memory of her sister Susan, who died in 1980 after a three-year struggle with breast cancer. The primary mission of the Komen Foundation is to eradicate breast cancer as a life-threatening disease by advancing research, education, screening, and treatment. They are the sponsors of the annual Race for the Cure, run in cities around the country, and offer a helpline to callers needing information. National Alliance of Breast Cancer Organizations (NABCO) 9 East 37th Street, 10th floor New York, NY 10016 Toll free: (888) 80-NABCO (888-806-2226) World Wide Web: http://www.nabco.org/ NABCO is the leading non-profit central resource for information, assistance, and referral to anyone with questions about breast cancer and a network of more than 370 organizations that provide detection, treatment and care to hundreds of thousands of American women. National Cancer Institute (NCI) Attn: Cancer Information Service 9000 Rockville Pike Bethesda, MD 20892 Hot line: (800) 4-CANCER (800) 422-6237 Fax: (301) 231-6941; CancerFax: (301) 402-5874 World Wide Web: http://www.nci.nih.gov/ The National Cancer Institute is the most comprehensive and up-to-date source of clinical and research information for cancer patients and for health care professionals. Detailed and extensive patient treatment information, reviewed and updated monthly, is available by a number of methods from NCI. A clinical trials finder that lists all NCI sponsored clinical trials offers contact and other information. NCI publishes a variety of related materials, from supportive care guidelines to clinical updates, available free. National Coalition for Cancer Survivorship 1010 Wayne Avenue Suite 770 Silver Spring, MD 20810-5600 (877) NCSS-YES (877) 622-7937) Fax: (301) 565-9670 Email: info@cansearch.org World Wide Web: http://www.cansearch.org/ A national network of independent groups and individuals concerned with survivorship and support services for patients and families. Sisters Network 8787 Woodway Drive, Suite 4206 Houston, TX 77063 (713) 781-0255 Fax: (713) 780-8998 World Wide Web: http://sistersnetworkinc.org/ A national organization with 7 affiliated chapters, founded in 1994. Support, education and advocacy for the African American community concerning breast cancer. Outreach, training and research. Newsletter, information and referrals, phone support, conferences. Assistance in starting new groups. Y-Me National Breast Cancer Organization 212 W. Van Buren, 5th Floor Chicago, Illinois 60607-3907 Hot line: (800) 221-2141 24 hours a day Spanish Hot line: (800) 986-9505 World Wide Web: http://www.y-me.org/ For almost 20 years, Y-ME has served women with breast cancer and their families and through a national hot line, open door groups, early detection workshops and many local chapters. They also offer peer support breast cancer patients talking with survivors, and spouses of patients talking with spouses of survivors. They provide up-to-date information on approved mammogram facilities, comprehensive breast centers, treatment and research hospitals, breast specialists, and support programs. Nineteen affiliated groups nationwide. Support Local organizations providing information and support In addition to the national organizations listed above, there are many outstanding local organizations. Ask for referrals from one of the national organizations or your treatment center; or look in the telephone book under "Social Service Organizations." A few of the better-known ones are listed below. Reading The Activist Cancer Patient, by Beverly Zakarian. John Wiley & Sons, 1996. A well-organized, practical guide to becoming an "empowered patient," covering every aspect of taking charge of your treatment decisions, including researching state-of-the-art treatments, understanding how drug trials work, discovering what "experimental treatment" means, searching out relevant medical journals and accessing reliable databases, and enlisting the help of medical specialists and support groups Advanced Breast Cancer: A Guide to Living with Metastatic Disease, by Musa Mayer, Second Edition. Sebastopol, CA, 1998. Updated edition of a comprehensive guide that deals honestly with metastatic disease yet offers hope and comfort. Includes stories of those living with advanced breast cancer. The book from which this fact sheet was adapted. Breast Cancer: The Complete Guide, by Yashar Hirshaut and Peter Pressman. Second edition. New York: Bantam, 1996. Another excellent basic "companion" book for breast cancer, with a chapter on metastatic disease. A third edition is scheduled for September 2000. Dr. Susan Love's Breast Book, by Susan Love, M.D. Second edition. Boston: Addison-Wesley, 1995. Considered by many to be the primary breast cancer patient's bible, the revised edition incorporates two chapters on metastatic disease. A third edition is scheduled for August 2000. When Cancer Recurs: Meeting The Challenge Again. NCI publication #93-2709, 1992. A free pamphlet on recurrence, from the National Cancer Institute. Call (800) 4-CANCER. As a point of departure, this touches on many of the major issues metastatic breast cancer patients will face. Financial and Legal Information and Assistance Barbara Anne Deboer Foundation (630) 758-0450 FAX: (847) 981-1575 A national non-profit organization to assist those in need of organ transplants and other life-saving procedures in obtaining resources specific to individual needs. The Foundation is especially concerned with those life-saving procedures not covered by insurance, and provides outreach, support, and advocacy services to patients who are affected. The foundation responds to inquiries from both patients and professionals. They offer information on funding high-dose chemotherapy through an individual Fund-Raising Program. Help is available for planning a funding campaign, and managing the donations to insure full availability to you and full tax credit to those who donate. See Blood and Marrow Transplant Information Newtwork under Services The National Insurance Consumer Helpline Hot line: (800) 942-4242 Mon.-Fri., 8:00 a.m. to 8:00 p.m., est. A general information source for all types of insurance-related issues, including life and health insurance. Pharmaceutical Reimbursement Assistance Programs U.S. Senate, Department of Aging Majority: (202) 224-5364 Minority: (202) 224-1467 World Wide Web: http://cancer.med.upenn.edu/specialty/med_onc/chemo/general/indigent_drugs.html Most pharmaceutical companies have programs for people who can't afford their medications to receive free drugs if they meet financial criteria. Copies of this list are available free of charge by calling the numbers above. Oncolink maintains a list of providers online. U.S. Social Security Administration (800) 772-1213 World Wide Web: http://www.ssa.gov/SSA_Home.html If you have been or will be disabled for six months or longer, you may be entitled to disability benefits. Metastatic breast cancer is generally considered a qualifying disability. Pamphlets are available online at: http://www.ssa.gov/pubs/englist.html. Transportation Air Care Alliance The National Patient Air Transport Hot line (NPATH) Hot line: (800) 296-1217 World Wide Web: http://www.aircareall.org/ A "nationwide association of humanitarian flying organizations." Airlifeline (800) 446-1231 World Wide Web: http://www.airlifeline.org/ Free, nationwide service that flies qualified patients to treatment sites within 500-700 miles Corporate Angel Network Westchester County Airport One Loop Road White Plains, NY 10604 (914) 328-1313 World Wide Web: http://www.corpangelnetwork.org/ Flies qualified patients to treatment sites, free, using empty seats on corporate flights. This fact sheet was adapted from Advanced Breast Cancer: A Guide to Living with Metastatic Disease, Second Edition, by Musa Mayer, copyright 1998 by Patient-Centered Guides. For more information, call (800) 998-9938 or see www.patientcenters.com.