Onconurse.com -- Fact Sheet

Advanced Breast Cancer Resources


  • 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
    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
    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)
    A comprehensive list of toll-free numbers for health information.

  • Oncolink
    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
    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.


  • 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
    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.


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.


  • 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.


  • 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.

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