Online Information, Services and Support for Metastatic Breast Cancer
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Dedicated Solely to Metastatic Breast Cancer
Note: In-person support groups that serve only women with advanced breast cancer may be hard to find outside of urban areas. Groups for patients with all advanced cancers are offered in many hospitals and cancer centers, usually led by nurses or social workers. Local breast cancer support organizations may also have metastatic groups.
- Cancer Support Community
A free program of emotional support, education, and hope for people with cancer and their families. (888) 793-9355
“Cancer Help Program conducts weeklong support and learning programs for people with cancer.” (415) 868-0970
- Cancer Care, Inc.
Offers support services, education and information, referrals, and financial assistance.
“Embrace” is a new program of group and individual telephone counseling designed to meet the unique needs of young Jewish women living with metastatic breast cancer. (866) 474-2774 .
- SHARE Self-Help for Women with Breast and Ovarian Cancer
Offers newly diagnosed and ongoing face-to-face support groups for women with metastatic breast cancer for women in the New York City area
Telephone Support : Hotlines and Groups
Hotline services will usually match you with a woman with metastatic breast cancers. Regular telephone support groups give metastatic breast cancer patients the chance to hear from others and share their questions and experiences.
- National Comprehensive Cancer Network (NCCN) Guidelines
The National Comprehensive Cancer Network has released new guidelines for the treatment of breast cancer, in decision-tree format.
- CancerGuide: How to Research the Medical Literature
Steve Dunn’s online, step-by-step, thorough introduction to researching cancer and its treatments.
Search the Medline database of medical/scientific citations and abstracts. Includes overview and tutorial on search methods, plus links to some full text articles.
- PDQ Health Professional Statement on Breast Cancer
PDQ is a cancer database maintained by the National Cancer Institute (NCI) and contains statements, updated monthly, of the most recent treatments, standard and investigational treatment protocols, clinical trials, and major cancer treatment centers and physicians. Peer-reviewed summary on breast cancer treatment for health professionals, reviewed monthly. Available in Spanish, and in a version for patients.
- Levels of Evidence for Adult Cancer Treatment Studies (PDQ)
An easy-to-follow description of how scientific evidence is evaluated for the PDQ documents and for cancer research in general.
Continuing medical education, conference and research reports for physicians and consumers.
Free from the limitations of time, money and location, women with advanced breast cancer and their families can give and receive support and share information via the mailing lists and bulletin boards listed below. Mailing lists operate via an exchange of email, while bulletin boards take the form of messages posted on websites.
“CaringBridge offers free, easy-to-create web sites that help connect friends and family when they need it most.”
- Making Memories
This organization provides an opportunity for advanced breast cancer patients to fulfill a dream or wish.
- Lotsa Helping Hands
- Lotsa Helping Hands provides a free caregiving and volunteer service that allows for the creation of private web-based communities to organize help for people in need.
- How To Find a Doctor or Treatment Facility If You Have Cancer
From the NCI Cancer Facts, what you need to know about finding quality medical care.
- NCI-Designated Cancer Centers
“60 research-oriented institutions across America that National Cancer Institute recognizes for scientific excellence and for their extensive resources focused on cancer and cancer-related problems.” Top breast cancer oncologists involved with clinical research are usually affiliated with one of these. If you are being treated elsewhere, a consultation or second opinion with one of these doctors can be helpful at critical points in your treatment, alerting you to clinical trials or emerging treatments.
A service of the National Library of Medicine and the National Institutes of Health, consumer-friendly information on drugs, medical encyclopedia and dictionary.
FDA-approved labeling information on prescription drugs in an easy-to-read format.
An FDA web site to help consumers and health professionals find information about approved drug products. Gives the history of a drug’s approval.
- Mayo Clinic Drugs and Supplements Index
Drug information in consumer-friendly language.
Information about drugs used in cancer treatment, in patient-friendly format.
- Harvard Medical School Family Health Guide to Diagnostic Tests
Helps patients and caregivers to better understand the many clinical lab tests that are part of routine care as well as diagnosis and treatment of a broad range of conditions and diseases.
- NCI Dictionary of Cancer Terms A good cancer dictionary and glossary.
- The Bone and Cancer Foundation Provides information for patients and health professionals on the causes and treatment of bone metastases. Pamphlets on issues of concern, and detailed research summaries in slide format.
- Learning about Clinical Trials The National Cancer Institute’s (NCI) introduction to clinical trials.
- NCI Clinical Trials Search Trials listed at the National Cancer Institute site overlap trial listings at ClinicalTrials.gov
- ClinicalTrials.gov User-friendly search site developed by the National Library of Medicine and the National Institutes of Health. Companies developing drugs are required to list Phase II and III trials for their drugs here. See “Understanding Clinical Trials.”
NCI Clinical Trials Cooperative Group Program The Cooperative Groups design and conduct many of the studies done in advanced breast cancer after drugs are approved.
Financial Assistance with Co-Payment for Treatment
Patient Services Incorporated (PSI)
P.O.Box 1602, Midlothian, VA 23113; 13541 East
Boundary Road, Midlothian, VA 23112
Developed in 1989, PSI is a non-profit charitable organization, primarily dedicated to subsidizing the high cost of health insurance premiums and pharmacy co-payments for persons with specific chronic illnesses and rare disorders..
Chronic Disease Fund (CDF)
2503 Windgate Drive, Frisco, TX 75034
The Chronic Disease Fund is a non-profit organization founded in 2003 and established in January, 2004. The fund's mission is to provide financial assistance and disease management to under-insured patients who are diagnosed with a "targeted" chronic disease. "The greatest good to the greatest many."
Patient Advocate Foundation (PAF)
700 Thimble Shoals Blvd, Suite 200, Newport News, VA 23606
757-873-8999 or 757-873-1082
The Patient Advocate Foundation (PAF) is a non-profit organization introduced their copay program July, 2003. The program provides co-payment assistance to insured Americans who financially and medically qualify.
Patient Access Network Foundation (PANF)
PO Box 221858, Charlotte, NC 28222-1858;
Corporate Center Five, 3735 Glenlake Drive, Suite 300, Charlotte, NC 28208
September 3,2004 - The Patient Access Network Foundation is an independent, non-profit 501(c)(3) organization was created, unaffiliated with any of its donors, dedicated to assisting insured patients who cannot afford the out-of-pocket costs associated with their treatment needs. The Patient Access Network Foundation was created in response to a growing need to develop new solutions to assist the treatment of the underinsured.
The Healthwell Foundation
P.O. Box 4133, Gaithersburg, MD 20878; 9801
Washingtonian Boulevard, 9th Floor, Gaithersburg, MD 20885
The HealthWell FoundationT is a 501(c)(3) non-profit, charitable organization that helps individuals afford prescription medications they are taking for specific illnesses. The Foundation provides financial assistance to eligible patients to cover certain out-of-pocket health care costs, including: Prescription drug coinsurance, copayments and deductibles; Health insurance premiums and Other selected out-ot-pocket health care costs.
National Organization for Rare Disorders, Inc. (NORD)
55 Kenosia Avenue, PO Box 1968, Danbury, CT 06813-1968
The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations and individuals..committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
- Coping with Cancer
National Cancer Institute, with links for NCI materials coping with fatigue, pain and other side effects/treatment complications, as well as emotional and nutritional concerns and end of life issues.
- Cancer Supportive Care
A broad series of articles on supportive care for cancer patients and health professionals.
- Chemotherapy and You: A Guide To Self-Help During Treatment.
Basic principles for handling side effects of treatment.
- The Xtra Support Program From Roche, a free program involving follow-up from an oncology nurse, for added support with Xeloda therapy..
- Pain PDQ
National Cancer Insitute PDQ guides for pain management for health professionals and patients (also in Spanish)
“Connect to the latest and most accurate information on state-of-the-art management of cancer pain for patients, caregivers and healthcare professionals.”
- Pain Control: A Guide for People with Cancer and Their Families
National Cancer Institute guide for pain control.
- Radiation Therapy and You: A Guide To Self-Help During Treatment.
A basic introduction to the topic of radiation treatment, how and why it is done, and coping with the side effects.
- American Cancer Society Tender Loving Care Catalog
Hats, scarves, mastectomy products and more…
Infinite Boundaries A four-day retreat designed by breast cancer survivors for breast cancer survivors. Retreats feature uplifting discussions, creative arts, journaling and outdoor activities. Breast Cancer Recovery also offers retreats for women living with metastatic breast cancer.
More Recommended Reading
© Musa Mayer 2011