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Information, Services, and Support


The following resources for general information and services are from Advanced Breast Cancer: A Guide to Living with Metastatic Disease, 2nd Edition by Musa Mayer, copyright 1998, published by O'Reilly & Associates, Inc. To order, or get more information about Musa's book, call 1-800-998-9938. Permission is granted to print and distribute this list of resources for noncommercial use as long as the above source is included. This information is meant to educate and should not be used as an alternative for professional medical care.

Information, services, and support:

Financial and legal information and assistance:

Information, services, and support

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.

Breast Cancer Connections
http://bcconnections.org/
Among other resources, this website contains the full text of Jenilu Schoolman's essay on living with metastatic breast cancer, Within Measured Boundaries.

Health News
http://www.healthdirect.com/usenew/news.shtml
Links to Reuters, AP and many other health news services online. All health topics, but most sites can be searched for disease-specific information.

NCI CancerNet
http://wwwicic.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, with links to:

  • PDQ Disease Topics.
  • Supportive Care Topics.
  • Search Clinical Trials Database at the NCI.
  • News and NCI Publication Information including Full Text Publications.
  • Cancer Information Service (800 4-CANCER).
  • Journal of the NCI.
  • CANCERLIT Citations and Abstracts.
  • MEDLINE From PubMed.
  • NCI Fact Sheets with Risk Factors, Prevention, Detection, Therapy, Rehabilitation, and unconventional Methods.
  • Search the CancerNet Files for Keywords (full-text retrieval).
  • What's new in this month's CancerNet?

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.

Scientific American
http://www.sciam.com/0996issue/0996currentissue.html
Selections from their excellent September 1996 Single Topic Issue: "What You Need to Know About Cancer."

• • • • • •

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:

  • Through the Resources, Information, and Guidance program, ACS gives callers information about cancer.
  • Community services and other resources meet the practical, social, psychological and other support needs of cancer patients and others coping with the burden of cancer.
  • Reach to Recovery is a peer visitor program providing support and information for women who have had breast cancer surgery.
  • Road to Recovery provides volunteer drivers to drive patients who have no other means of transportation to and from treatment.
  • Equipment. ACS may be able to arrange for durable medical equipment such as walkers, wheelchairs, hospital beds, etc., at no cost to the patient.
  • Look Good...Feel Better helps women undergoing radiation or chemotherapy manage the temporary changes in appearance that their treatments can cause, such as skin problems and hair loss.

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.

The Mautner Project for Lesbians with Cancer
1707 L Street NW, Suite 1060
Washington, DC 20036
(202) 332-5536
FAX: (202) 265-6854
World Wide Web: http://www.edisolwaynedotson.com/mautner/
Direct services to lesbians with cancer, their partners and caregivers. Offers education and information to the lesbian community about cancer, and education to the health care community about the special concerns of lesbians with cancer and their families. Active in advocacy on lesbian health issues in national and local arenas.

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. Information is available on its Website, by telephone and through the 1997/98 edition of the NABCO Breast Cancer Resource List. Other resources from NABCO include:

  • NABCO Fact Sheets, for current information on risk, early detection, treatment, follow-up care and national statistics.
  • NABCO News, a quarterly newsletter covering the latest developments in medicine, science, services and policy, including risk factors, early detection and treatment options.
  • National Support Groups, a state-by-state listing of support groups, with contact numbers.
  • NABCO also will provide physicians with one free copy of the 1992, 30-minute video, Autologous Bone Marrow Transplantation: Facing the Challenge.
  • Video: On with Life: Practical information on living with metastatic breast cancer.

National Cancer Institute (NCI)
Building 31, Room 10A16
9000 Rockville Pike
Bethesda, MD 20892
Hot line: (800) 4-CANCER (800) 422-6237
FAX: (301) 231-6941
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
323 Eighth Street SW
Albuquerque, NM 87102
(505) 764-9956
World Wide Web: http://www.access.digex.net/~mkragen/index.html
A national network of independent groups and individuals concerned with survivorship and support services for patients and families.

Sisters Network
8787 Woodway Drive, Suite 4207
Houston, TX 77063
(713) 781-0255
World Wide Web: http://members.aol.com/SistersNet/sis.html
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 9:00 am to 5:00 pm cst, Mon.-Fri.
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 friends through a national hot line, open door groups, early detection workshops and many local chapters. They also offer peer support programs: breast cancer patients talking with survivors, and spouses of patients talking with spouses of survivors. They provide up-to-date information on approved mamogram 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.

Commonweal
P.O. Box 316
Bolinas, CA 94924
(415) 868-0970
World Wide Web: http://www.commonwealhealth.org/
Commonweal is a health and environmental research institute located in Bolinas, California, run by Michael Lerner, author of Choices in Healing, and featured in Bill Moyers' PBS Series, Healing and the Mind. The Commonweal Cancer Help Program conducts weeklong support and learning programs for people with cancer. For information, please contact Asoka Thomas, Program Coordinator.

Breast Cancer Connections
390 Cambridge Ave.
Palo Alto, CA 94306
(650) 326-6299
World Wide Web: http://bcconnections.org
The Community Breast Health Project acts as a clearinghouse for information and support, providing volunteer opportunities for breast cancer survivors and friends dedicated to helping others with the disease, and serving as an educational resource and a community center for those concerned about breast cancer and breast health. Offers counseling, groups for metastatic and primary breast cancer patients, practical information and information on advocacy efforts.

SHARE: Self-Help for Women with Breast and Ovarian Cancer
19 West 44th Street, Suite 415
New York, NY 10036
(212) 719-0364
Hot line (English): (212) 382-2111
Hot line (Spanish): (212) 719-4454
Hot line (Chinese): (718) 296-7108
SHARE offers many support groups for women with breast and ovarian cancer, including groups in Spanish and Chinese. Operates a patient hot line (also multilingual) and presents an ongoing educational series on issues of interest to breast cancer patients. Particularly important for their extensive outreach programs to underserved communities in New York City.

• • • • • •

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

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.

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.

Everyone's Guide to Cancer Therapy, by Dollinger, Rosenbaum, and Cable. Andrews & McMeel, 1994. Based on the PDQ database of the National Cancer Institute, this is a good resource on many types of cancer.

Teamwork: The Cancer Patients' Guide To Talking with Your Doctor, National Coalition for Cancer Survivorship, 1010 Wayne Avenue, 5th Floor, Silver Spring, MD 20910. Online at: http://www.access.digex.net/~mkragen/index.html

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

Affording Care
429 East 52nd Street, Suite 4G
New York, NY 10022-6431
(212) 371-4740
World Wide Web: http://www.thebody.com/.../afford/affordix.html
Financial information for those with serious illness. Publishes a free newsletter, The Affording Care Bulletin.

Barbara Anne Deboer Foundation
2069 S. Busse Road
Mount Prospect, IL 60056
(800) 895-8478 or (847) 981-0130
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 the 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 HDC 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 & Marrow Transplant Information Network under Information, Services and Support.

Judges and Lawyers Breast Cancer Alert
Hot line for legal professionals: (212) 759-6630.

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://oncolink.upenn.edu/specialty/chemo/general/
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.wolf-aviation.org/aircare/
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, Building 1
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.

• • • • • •

Cancer Treatments Your Insurance Should Cover. March, 1991. The Association of Community Cancer Centers, 11600 Nebel Street, Suite 201, Rockville, MD 20852; (301) 984-9496. World Wide Web: http://www.assoc-cancer-ctrs.org/. Information for Patients and Their Families sponsored by: the Association of Community Cancer Centers; the Oncology Nursing Society; the National Coalition for Cancer Survivorship.

Cancer: Your Job, Insurance and the Law. An informative pamphlet from the American Cancer Society, (800) ACS-2345.

Directory of Prescription Drug Patient Assistance Programs, 1996. Pharmaceutical Research and Manufacturers of America, 1100 15th Street, NW Washington, DC 20005; (800) PMA-INFA.

Free & Low Cost Prescription Drugs. Booklet #PD-360 from the Cost Containment Research Institute, 611 Pennsylvania Ave. SE, Suite 1010, Washington, DC 20003-4303.

Health Care Bill Of Rights/Standards. MacLean Center for Clinical Medical Ethics, at the University of Chicago. Online at: http://ccme-mac4.bsd.uchicago.edu/

Health Insurance Association of America (HIAA). A trade association that serves as the voice of health insurance. Publishes a number of consumer guides to various kinds of insurance, including:
The Consumer's Guide To Disability Insurance, 1995.
The Consumer's Guide To Health Insurance, 1995.
The Consumer's Guide To Long-Term Care Insurance, 1995.
The Consumer's Guide To Medicare Supplement Insurance, 1995.
Call (202) 824-1600. HIAA Website: http://www.hiaa.org/

The Managed Care Consumers' Bill of Rights, 1996. A Health Policy Guide for Consumer Advocates Public Policy and Education Fund of New York, 94 Central Avenue, Albany, NY 12206.

Medical Records: Getting Yours. This booklet includes a summary of legal rights in each state and what to do if a request is denied or if the records are incorrect. Available from Public Citizen's Health Research Group, Washington, DC; (800) 289-3787 or (202) 588-1000, between 9:00 a.m. to 5:00 p.m., Monday through Friday. Online: http://www.citizen.org

What Cancer Survivors Need To Know About Health Insurance, 1995. Available free from the National Coalition for Cancer Survivorship; (301) 650-8868. Provides a clear understanding of health insurance and how to receive maximum reimbursement on claims.


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