brainmetsbc.org

Resources List

Online Information, Services and Support for Metastatic Breast Cancer                              *** Download  Hyperlinked PDF Resource List  ***

National Organizations

[Return to top]

American Cancer Society
800-ACS-2345

Living Beyond Breast Cancer   Advanced Breast Cancer webpage
Helpline: 888-753-5222

SHARE Self-Help for Women with Breast and Ovarian Cancer
866-891-2392

Susan G. Komen for the Cure
800-I'M AWARE

Metastatic Breast Cancer Network
888-500-0370 MBCNET@gmail.com

The National Breast Cancer Coalition
800-622-2838

National Coalition for Cancer Survivorship
301-650-9127

Breast Cancer Action
877-278-6722

The Wellness Community
888-793-WELL

Y-Me National Breast Cancer Organization
Hotline:800-221-2141  Spanish Hotline: 800-986-9505

Young Survival Coalition
877-YSC-1011

Inflammatory Breast Cancer Research Foundation
877-786-7422

Sisters Network For African-American women
713-781-0255

The Mautner Project for Lesbians with Cancer
202-332-5536

Asian American Cancer Support Network
650-967-2305

Native American Cancer Research
303 838-9359

Nueva Vida For Latinas with cancer.
202 223-9100

FORCE: Facing Our Risk of Cancer Empowered
(hereditary breast and ovarian cancer) 866-288-RISK

In-Person Support

[Return to top]

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.

The Wellness 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

Gilda's Club
Free services in a clubhouse format offering emotional and social support for cancer patients, their families and friends. 1-888-GILDA-4-U

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

** SEND US LINKS YOU FIND USEFUL **

Telephone Support : Hotlines and Groups

[Return to top]

Note: 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

Young Survival Coalition
Hotline: 877-YSC-1011  (women diagnosed under 40)

Y-Me National Breast Cancer Organization
Hotline: 800-211-2141 Spanish Hotline: 800-986-9505

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.

** SEND US LINKS YOU FIND USEFUL **

Information Seeking

[Return to top]

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.

** SEND US LINKS YOU FIND USEFUL **

Online Support

[Return to top]

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.

BCMETS Mailing List and Webpage Large, open mailing list for metastatic breast cancer patients, family members and friends.  Browse and search the public archive of all messages over its eight year history. Lurkers (people who choose not to post public messages) are welcome. Very active.

CLUB-METS-BC Mailing List Mailing list for metastatic breast cancer patients and caregivers only.  Archives only searchable by list members.

IBC Support Mailing List and Webpage Mailing list for inflammatory breast cancer support and information.

Breast Cancer Action Nova Scotia (BCANS) Support Forum Bulletin board for all breast cancer, but with many advanced breast cancer patients. Very active.

HER2 Support Group Forum Bulletin board and information for women with HER2+ breast cancer. Very active.

Her2/Recurrence Board for Survivors Support for women with HER2+ breast cancer.

"Recurrence and Metastatic Disease" Discussion Board
"Braving more treatment and managing the ups and downs with others who care." Very active discussion board at BreastCancer.org.

Young Survival Coalition Bulletin Board Support for young women with metastatic disease. "Our Corner" Message Board A forum for women living with metastatic disease at Living Beyond Breast Cancer.

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.

** SEND US LINKS YOU FIND USEFUL **

Treatment Information

[Return to top]

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.

** SEND US LINKS YOU FIND USEFUL **

Clinical Trials

[Return to top]

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.

** SEND US LINKS YOU FIND USEFUL **

 

Supportive Care

[Return to top]

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)

Cancer-pain.org
"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...

** SEND US LINKS YOU FIND USEFUL **

Recommended Reading

[Return to top]

Patient Active Guide to Living with Advanced Breast Cancer download PDF or read online
A helpful new resource from the Wellness Community and Living Beyond Breast Cancer.

When Cancer Returns: Meeting The Challenge Again
NCI publication, touches on many of the major issues metastatic breast cancer patients will face.

I Still Buy Green Bananas: Living with Advanced Breast Cancer
Helpful brochure published by Y-Me.

The Median Isn't the Message
How to make sense of statistics by evolutionary biologist Stephen Jay Gould. "The wisest, most humane thing ever written about cancer and statistics." -Steve Dunn, editor, CancerGuide.org.

The Shock of Recurrence
From Musa Mayer's Advanced Breast Cancer: A Guide to Living with Metastatic Disease. Look for other excerpts on this website.

Within Measured Boundaries
Jenilu Schoolman's essay on living with advanced breast cancer.

Conversations From The Heart
Resources for Talking With Children About a Parent's Serious Illness, by Janet Perloff and Victoria Rizzo.

The Quiet War
Film profiles of five women living with metastatic breast cancer, plus expert interviews on treatment, coping.  DVD from AffinityFilms.  (888) 353-4325

Understanding Brain Metastases: A Guide for Patient and Caregiver
Patient brochure from the American Brain Tumor Foundation

** SEND US LINKS YOU FIND USEFUL **

[Return to top]

www.BRAINMETSBC.ORG

© Musa Mayer 2010