Resources List

Online Information, Services and Support for Metastatic Breast Cancer 

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Dedicated Solely to Metastatic Breast Cancer


 

National Organizations

In-Person Support

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       
  • Commonweal
    “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.
  • Sharsheret
    “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.  

  • SHARE Self-Help for Women with Breast and Ovarian Cancer
    Toll-Free Breast and Latina Hotlines**               866-891-2392       
    New York City: Breast Cancer Hotline               212-382-2111       
  • **SHARE hotline matches metastatic patients with metastatic volunteers
  • Young Survival Coalition
    Hotline:               877-YSC-1011         (women diagnosed under 40)
  • Cancer Care, Inc.
    National phone group:               800-813-HOPE        
  • SHARE Self-Help for Women with Breast and Ovarian Cancer
    Phone group available to New York State residents:               212-937-5585        
  • Sharsheret
    Telephone support group.
  • Breast Cancer Options Offers free ongoing face-to-face support group,educational programs and a retreat for women with metastatic breast cancer in the Hudson Valley NY area. 845-339-HOPE (4673)

Information Seeking

  • 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.
  • PubMed
    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.
  • Medscape
    Continuing medical education, conference and research reports for physicians and consumers.


 

Online Support

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
    “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.


 

Treatment Information

  • 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. 
  • MedlinePlus
    A service of the National Library of Medicine and the National Institutes of Health, consumer-friendly information on drugs, medical encyclopedia and dictionary.
  • RxList.org
    FDA-approved labeling information on prescription drugs in an easy-to-read format. 
  • Drugs@FDA
    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.
  • ChemoCare.com
    Information about drugs used in cancer treatment, in patient-friendly format.
  • Harvard Medical School Family Health Guide to Diagnostic Tests
  • LabTestsOnline.org
    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.


Clinical Trials

  • 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
www.uneedpsi.org
800-366-7741
804-744-5407

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
www.cdfund.org
877-968-7233
214-975-1114

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
www.copays.org
800-532-5274
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
www.patientaccessnetwork.org
866-316-PANF (7263)
704-357-0036

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
www.healthwellfoundation.org
800-675-8416
240-632-3863

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
www.rarediseases.org
203 744-0100
203 798-2291

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.


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© Musa Mayer 2011