Breast Cancer RESOURCE GUIDE

Breast Cancer
RESOURCE GUIDE
A collection of websites that provide information and
support for patients with breast cancer and the oncology
professionals who treat them.
Sponsored by Novartis Pharmaceuticals Corporation
I’M LIVING
MY LIFE
FEELINGS
WHAT’S
RIGHT
FOR ME
OPTIONS
I’M NOT
GIVING UP
CREATE
A PLAN
TOGETHER
UNCERTAINTY
MY BREAST CANCER
IS NOT EARLY STAGE.
WHERE CAN I GET
THE HELP I NEED?
If you have advanced or metastatic breast cancer,
go to advancedbreastcancercommunity.org.
There’s a lot on your mind, whether you’re newly diagnosed or have
been living with your disease for a while. You have decisions to make,
options to consider. But your breast cancer is not early stage cancer,
and you may not be able to find help in the usual places. You have
your doctors, but you need other support too. So where can you turn?
You’ll find the information and inspiration you’re looking for at
advancedbreastcancercommunity.org. It’s a place where you can
be counted, a place that helps bring much-needed awareness to
metastatic breast cancer and those living with this disease.
Sign up and join the others
who have already been counted
Learn important information
about metastatic disease
Find support, resources, and information
whenever you need them
FRIENDS
FAMILY
SUPPORT
OTHERS
WHO’VE BEEN
THERE
Join us at
advancedbreastcancercommunity.org
and be counted today.
Novartis Pharmaceuticals Corporation
East Hanover, New Jersey 07936-1080
© 2012 Novartis
8/12
MDA-1047319
A Guide to Support Services
Individuals with metastatic breast
cancer
Alamo Breast Cancer Foundation
www.alamobreastcancer.org
210-692-9535
[email protected]
Individuals with all types of breast
cancer
American Cancer Society
www.cancer.org
1-800-227-2345
E-mail via website
Individuals affected by all types of
cancer
Avon Foundation for Women Breast Health
Outreach Program
www.avonbhop.org
212-244-5368
[email protected]
Medically underserved individuals
with breast cancer
BrainMetsBC.org
www.brainmetsbc.org
E-mail via website
Patients and their families impacted
by metastatic breast cancer
Breastcancer.org
www.breastcancer.org
E-mail via website
Individuals with all types of breast
cancer
BreastCancerTrials.org
www.breastcancertrials.org
415-476-5777
[email protected]
Breast cancer patients considering
clinical trials
Breast Cancer Research Foundation
www.bcrfcure.org
1-866-346-3228
[email protected]
Healthcare professionals and
individuals affected by all types of
breast cancer and interested in
research
CancerCare
www.cancercare.org
1-800-813-4673
[email protected]
Patients, loved ones, and physicians
affected by all types of cancer
Cancer.Net
American Society of Clinical Oncology
www.cancer.net
1-888-651-3038
[email protected]
Patients and loved ones affected by
all types of cancer
Cancer and Careers
www.cancerandcareers.org
212-685-5955
[email protected]
Patients, coworkers, and physicians
affected by all types of cancer
ral
So
W cial
eb Me
Su dia
pp /
ort
Ge
S nera
up l C
po an
rt ce
r
Advanced Breast Cancer Community
www.advancedbreastcancercommunity.org
1-888-669-6682
E-mail via website
ltu
Individuals with metastatic breast
cancer
Cu
AdvancedBC.org
www.advancedbc.org
E-mail via website
A
Mdvan
eta ced
sta /
tic
Who It Serves
Re
gio
na
l
Organization
Na
ti
on
al
There are many sources of support available to assist you as you manage your decisions regarding a diagnosis of
breast cancer. Please use this checklist as a guide to determine which organizations fit your needs.
3
CaringBridge
www.caringbridge.org
651-789-2300
E-mail via website
Patients, family, and friends
affected by all types of cancer
CopingUniversity.com
www.copinguniversity.com
1-866-725-7877
E-mail via website
Individuals affected by all types of
cancer
Día de la Mujer Latina
www.diadelamujerlatina.org
281-489-1111
[email protected]
Latina women, including medically
underserved, with all types of
breast cancer
Inspire
www.inspire.com
1-800-945-0381
[email protected]
Patients, loved ones, and caregivers
affected by all types of cancer
Intercultural Cancer Council
www.iccnetwork.org
713-798-4614
[email protected]
Racial, ethnic, and medically
underserved cancer patients
Linda Creed Foundation
www.lindacreed.org
1-877-992-7333
[email protected]
Individuals and loved ones in the
greater Philadelphia area
Living Beyond Breast Cancer
www.lbbc.org
610-645-4567
[email protected]
Individuals with all types of breast
cancer
Men Against Breast Cancer
www.menagainstbreastcancer.org
1-866-547-6222
[email protected]
Male caregivers affected by all
types of breast cancer
Metastatic Breast Cancer Network
www.mbcn.org
1-888-500-0370
[email protected]
Individuals affected by metastatic
breast cancer
METAvivor Research and Support, Inc
www.metavivor.org
410-353-3733
[email protected]
Individuals affected by metastatic
breast cancer
MyLifeLine.org
www.mylifeline.org
720-883-8715
[email protected]
Patients and caregivers affected by
all types of cancer
National Breast Cancer Coalition
www.breastcancerdeadline2020.org
1-800-622-2838
E-mail via website
Policy makers, researchers, and
advocates for all types of breast
cancer
ral
So
W cial
eb Me
Su dia
pp /
or t
Ge
n
S era
up l C
po an
rt ce
r
Breast cancer patients and survivors
in the Washington, DC area
ltu
Capital Region Action Against Breast Cancer!
www.craab.org
[email protected]
Cu
Patients and loved ones affected by
all types of cancer
A
Mdvan
eta ced
sta /
tic
Cancer Support Community
www.cancersupportcommunity.org
1-888-793-9355
[email protected]
Re
gio
na
l
Who It Serves
Na
ti
on
al
4
Organization
National Coalition for Cancer Survivorship
www.canceradvocacy.org
301-650-9127
[email protected]
Patients, caregivers, and survivors
affected by all types of cancer
Nueva Vida
www.nueva-vida.org
1-866-986-8432
[email protected]
Latina women, including medically
underserved, with all types of
breast cancer
Patient Advocate Foundation
www.patientadvocate.org
1-800-532-5274
[email protected]
Patients with serious diseases who
are medically underserved
Pennsylvania Breast Cancer Coalition
www.pabreastcancer.org
1-800-377-8828
[email protected]
Breast cancer patients and families,
including medically underserved, in
Pennsylvania
SHARE-Self-Help-for Women With Breast or
Ovarian Cancer
www.sharecancersupport.org
1-866-891-2392
Individuals affected by breast
cancer or ovarian cancer
Sharsheret
www.sharsheret.org
1-866-474-2774
[email protected]
Jewish breast cancer or ovarian
cancer patients and those at risk
Sisters Network Inc
www.sistersnetworkinc.org
1-866-781-1808
[email protected]
African American women, including
medically underserved, with all
types of breast cancer
Susan G. Komen for the Cure
ww5.komen.org
1-877-465-6636
E-mail via website
Individuals affected by all types of
breast cancer
Triple Negative Breast Cancer Foundation
www.tnbcfoundation.org
1-877-880-8622
[email protected]
Patients and caregivers affected by
triple negative breast cancer
Virginia Breast Cancer Foundation
www.vbcf.org
1-800-345-8223
Individuals in Virginia with all types
of breast cancer
Young Japanese Breast Cancer Network
bcnetwork.org
[email protected]
Japanese women living in the United
States who have breast cancer
Young Survival Coalition
www.youngsurvival.org
1-877-972-1011
E-mail via website
Young patients and caregivers
affected by all types of breast
cancer
ral
So
W cial
eb Me
Su dia
pp /
or t
Ge
S nera
up l C
po an
rt ce
r
Individuals affected by all types of
cancer
ltu
National Cancer Institute
www.cancer.gov
1-800-422-6237
E-mail via website
Cu
Patients affected by all types of
breast cancer
A
Mdvan
eta ced
sta /
tic
National Breast Cancer Foundation, Inc
www.nationalbreastcancer.org
E-mail via website
Re
gio
na
l
on
al
Who It Serves
Na
ti
Organization
5
Breast Cancer Support Groups
Many organizations offer support in more than one category provided below. Please use the Support
Services checklist on pages 3-5 to help you determine which organizations fit your needs.
Note - descriptions on the following pages are provided by the organizations.
Cultural
National
7Avon Foundation for Women Breast
Health Outreach Program
Breastcancer.org
8 BreastCancerTrials.org
Living Beyond Breast Cancer
9 Men Against Breast Cancer
18 Día de la Mujer Latina
Intercultural Cancer Council
The Breast Cancer Research Foundation
12Triple Negative Breast Cancer
Foundation
Young Survival Coalition
Capital Region Action Against
Breast Cancer!
20Sisters Network Inc
Young Japanese Breast Cancer Network
General cancer support
21American Cancer Society
Project Manager
Jaclyn Pallotti
Art Director
Ray Pelesko
CancerCare
Vice President, Integrated Special
Projects Group
David Lepping
Associate Publisher
Erik Lohrmann
Director of Sales
Mike Hennessy, Jr
22Cancer.Net
National Accounts Manager
Robert Goldsmith
National Accounts Representative
Nicole Jussen
Cancer and Careers
23Cancer Support Community
Sales & Marketing Coordinator
Megan O’Connell
CopingUniversity.com
National Coalition for Cancer
Survivorship
Digital Media
Vice President, Digital Media
Jung Kim
Web Editor
Silas Inman
25Patient Advocate Foundation
Operations & Finance
Group Director, Circulation and Production
John Burke
social media/Web support
Pennsylvania Breast Cancer Coalition
ADVANCED/METASTATIC
Project Director
Donna Bonura
Sales & Marketing
14Linda Creed Foundation
15 Virginia Breast Cancer Foundation
Senior Vice President, Clinical and
Scientific Affairs
Jeff D. Prescott, PharmD, RPh
Quality Assurance Editor
David Allikas
Sharsheret
24National Cancer Institute
13Alamo Breast Cancer Foundation
Editorial & Production
Regional
Jack Lepping
Assistant Editor
Jeanne Linke
10National Breast Cancer Foundation, Inc
11 Susan G. Komen for the Cure
President
19Nueva Vida
National Breast Cancer Coalition
SHARE-Self-Help for Women With
Breast or Ovarian Cancer
www.OncLive.com
Director of Operations
Thomas J. Kanzler
25CaringBridge
Controller
Jonathan Fisher, CPA
26The Inspire Advanced Breast Cancer
Support Community
Assistant Controller
Leah Babitz, CPA
Corporate
MyLifeLine.org Cancer Foundation
15AdvancedBC.org
Chairman/Chief Executive Officer/
President
Mike Hennessy
16Advanced Breast Cancer Community
Chief Operating Officer
Tighe Blazier
Chief Financial Officer
Neil Glasser, CPA/CFE
BrainMetsBC.org
17Metastatic Breast Cancer Network
METAvivor Research and Support, Inc
Executive Vice President,
Executive Director of Education
Judy V. Lum, MPA
Vice President, Group Creative Director
Jeff Brown
Bringing the Oncology Community Together
Office Center at Princeton Meadows
Bldg. 300 • Plainsboro, NJ 08536
(609) 716-7777
Copyright © 2012 Intellisphere, LLC.
All rights reserved.
Avon Foundation for
Women Breast Health
Outreach Program
National
Breast Cancer Support Groups
www.avonbhop.org
ADDRESS:
505 Eighth Avenue
Suite 1901
New York, NY 10018
CONTACT INFO:
Phone: 212-244-5368
E-mail: [email protected]
The mission of the Avon Foundation for Women Breast Health
Outreach Program (BHOP) is to link medically underserved
women to breast health education and screening services.
The foundation understands that low-income, underinsured, and other marginalized populations often need
targeted, customized approaches to help them obtain regular
mammograms and clinical breast exams.
Resource Checklist
Screening information
Grant applications
Abstracts
Additional resources
Breastcancer.org
www.breastcancer.org
Breastcancer.org was founded in 1999 by Marisa Weiss, MD, a
nationally renowned oncologist specializing in breast cancer. The
organization has a mission to help women and their loved ones
make sense of the complex medical and personal information
about the disease, enabling them to make the best decisions
for their lives. All content on the Breastcancer.org website is
reviewed by a professional advisory board for accuracy.
ADDRESS:
7 East Lancaster Avenue
3rd Floor
Ardmore, PA 19003
CONTACT INFO:
E-mail: Through website
Resource Checklist
Advanced/metastatic breast cancer information
Free booklets/brochures
Chat rooms and forums
Stories of hope
Research news
Day-to-day matters
Practical tips
Extensive breast cancer information
Available in Spanish
7
National
BreastCancerTrials.org
www.breastcancertrials.org
BreastCancerTrials.org (BCT) encourages individuals
affected by breast cancer to consider clinical trials as
a routine option for care. To help match patients to
appropriate trials, BCT connects with individuals through
online profiles and provides patients with accurate
information regarding well-suited trials.
Resource Checklist
ADDRESS:
3450 California Street
San Francisco, CA 94118
CONTACT INFO:
Phone: 415-476-5777
E-mail: [email protected]
Advanced/metastatic breast cancer information
Browse trials feature
Personalized clinical trials matching service
Resources for working with healthcare professionals
Newsletter
Living Beyond Breast Cancer
www.lbbc.org
Living Beyond Breast Cancer (LBBC) is a national education
and support organization dedicated to improving quality of
life by encouraging patients to take an active role in their
ongoing recovery or management of breast cancer. The LBBC’s
website offers specialized programs and services that don’t
discriminate on the basis of educational background, social
support, or financial means.
ADDRESS:
354 West Lancaster Avenue
Suite 224
Haverford, PA 19041
CONTACT INFO:
Phone: 610-645-4567
484-708-1550
E-mail: [email protected]
8
Resource Checklist
Advanced/metastatic breast cancer information
Downloadable booklets/brochures
Insight newsletter
Survivors’ helpline
Tips for living
Clinical trials information
Blog
National
Men Against Breast Cancer
www.menagainstbreastcancer.org
Men Against Breast Cancer (MABC) provides support services
to educate and empower men to be effective caregivers
when breast cancer strikes a woman in their life. MABC also
targets and mobilizes men to become advocates in the fight to
eradicate breast cancer as a life-threatening disease.
Resource Checklist
ADDRESS:
PO Box 150
Adamstown, MD 21710
CONTACT INFO:
Phone: 1-866-547-6222
E-mail: [email protected]
Information on male breast cancer
Find a Friend support service
Resource library
Educational materials
Available in Spanish
National Breast Cancer
Coalition
www.breastcancerdeadline2020.org
ADDRESS:
1101 17th Street, NW
Suite 1300
Washington, DC 20036
CONTACT INFO:
Phone: 1-800-622-2838
202-296-7477
E-mail: Through website
The National Breast Cancer Coalition (NBCC) has become
a powerful voice, as it has created new partnerships,
collaborations, research funding opportunities, and avenues
for access to quality care. The NBCC’s Breast Cancer Deadline
2020 is an initiative for all for policy makers, researchers,
breast cancer advocates, and other stakeholders to end the
disease by 2020. NBCC encourages those concerned about
breast cancer to become advocates for action and change.
Resource Checklist
Advanced/metastatic breast cancer information
Scientific breast cancer news
Glossary of terms
Explore breast cancer issues
Facts and figures
Available in Spanish
9
National
National Breast Cancer
Foundation, Inc
www.nationalbreastcancer.org
ADDRESS:
2600 Network Boulevard
Suite 300
Frisco, TX 75034
CONTACT INFO:
E-mail: Through website
The National Breast Cancer Foundation’s (NBCF) mission
is to save lives through early detection and to provide
mammograms for those in need. NBCF’s mission includes
increasing awareness through education, providing diagnostic
breast care services for those in need, and providing nurturing
support services. Please visit NBCF’s additional website,
beyondtheshock.com, for educational resources for women and
their families.
Resource Checklist
Advanced/metastatic breast cancer information
Online community
Newsletter
Inspirational stories
Educational videos
Extensive breast cancer information
SHARE-Self-Help for Women
With Breast or Ovarian Cancer
www.sharecancersupport.org
ADDRESS:
1501 Broadway
Suite 704A
New York, NY 10036
CONTACT INFO:
Phone: 1-866-891-2392
212-719-0364
10
SHARE encourages women, their families, and their friends
to join with others to create a community which offers them
the opportunity to receive and exchange information, support,
strength, and hope. SHARE provides telephone support. Its
toll-free hotline is available in English, Spanish, and 10 other
languages. SHARE’s other free services include support
groups, educational programs, and advocacy activities.
SHARE’s work focuses on empowerment, education, and
advocacy to bring about better health care, an improved
quality of life, and a cure for these diseases.
Resource Checklist
Advanced/metastatic breast cancer information
Toll-free multilingual helpline
Family and friends blog
Survivor stories
Videos
Available in Spanish
ww5.komen.org
Susan G. Komen for the Cure is currently the boldest
community fueling the best science and making the biggest
impact in the fight against breast cancer. Since 1982, the
organization has played a critical role in every major advance
in the fight against breast cancer. Its contributions include
improvements in detection and effective treatments, and more
hope, research, and breast cancer survivors.
National
Susan G. Komen for the Cure
Resource Checklist
ADDRESS:
5005 LBJ Freeway
Suite 250
Dallas, TX 75244
CONTACT INFO:
Phone: 1-877-465-6636
E-mail: Through website
Advanced/metastatic breast cancer information
Website resource links
Helpline
Healthy recipes
Insurance and financial information
Mammogram/CBE reminder
Message boards
Blog
Available in Spanish
The Breast Cancer
Research Foundation
www.bcrfcure.org
ADDRESS:
60 East 56th Street
8th Floor
New York, NY 10022
CONTACT INFO:
Phone: 1-866-FINDACURE
646-497-2600
E-mail: [email protected]
The mission of The Breast Cancer Research Foundation
(BCRF) is to achieve prevention and a cure for breast cancer
in our lifetime by providing critical funding for innovative
clinical and translational research at leading medical centers
worldwide and increasing public awareness about good breast
health. If not for BCRF, many facts about the genetic basis of
breast cancer would not be known, the link between exercise,
nutrition and breast cancer risk would not be established, and
the rate of mortalities would not continue its downward curve.
Resource Checklist
Advanced/metastatic breast cancer information
Breast health library
Information on breast cancer research
Resources for clinical trials
Available in Spanish
11
National
Triple Negative Breast
Cancer Foundation
www.tnbcfoundation.org
ADDRESS:
PO Box 204
Norwood, NJ 07648
CONTACT INFO:
Phone: 1-877-880-8622
646-942-0242
E-mail: [email protected]
The Triple Negative Breast Cancer Foundation raises
awareness about triple negative breast cancer (TNBC), a
subtype of breast cancer. The foundation’s mission is to
raise awareness about TNBC and to support scientists and
researchers in their efforts to determine the definitive
causes of triple negative breast cancer so that effective
detection, diagnosis, prevention, and treatment can be
pursued and achieved.
Resource Checklist
Downloadable resources
Spotlight stories
Online community
Helpline
Clinical trials matching service
Young Survival Coalition
www.youngsurvival.org
Young Survival Coalition (YSC) was founded by 3 young
women all diagnosed with breast cancer before age 35.
These women saw the need for better information, support,
and research for young women facing breast cancer. YSC is
dedicated to the critical issues unique to young women who
are diagnosed with breast cancer. The YSC website offers
resources, connections, and outreach to help women feel
supported, empowered, and hopeful.
ADDRESS:
61 Broadway
Suite 2235
New York, NY 10006
CONTACT INFO:
Phone: 1-877-972-1011
646-257-3000
E-mail: Through website
12
Resource Checklist
Advanced/metastatic breast cancer information
Newsroom
Online community
Blog
Extensive breast cancer information
Information for caregivers
Information for health care professionals
Survivor stories
Affiliate matching service
www.alamobreastcancer.org
Regional
Alamo Breast Cancer
Foundation
Located in San Antonio, Texas, the Alamo Breast Cancer
Foundation is a nonprofit volunteer organization that hopes
to end breast cancer by assisting patients, informing policy
makers, and expanding knowledge through education and
community outreach programs.
Resource Checklist
ADDRESS:
PO Box 780067
San Antonio, TX 78278
CONTACT INFO:
Phone: 210-692-9535
E-mail: [email protected]
Listing of San Antonio support groups
Clinical trials information
Survivor stories
Helpline
Glossary of terms
Local stores offering breast cancer supplies
Capital Region Action
Against Breast Cancer!
www.craab.org
Capital Region Action Against Breast Cancer! (CRAAB!) was
created to make the eradication of breast cancer a priority.
Through education and advocacy efforts, the organization is
an active, independent voice throughout the Albany, NY area
in the fight against breast cancer.
CONTACT INFO:
E-mail: [email protected]
Resource Checklist
Newsletters
Breast cancer articles
Free workshops
Free classes
Additional resources
13
Regional
Linda Creed Foundation
www.lindacreed.org
Linda Creed was the first local organization to address breast
cancer as a serious and widespread disease threatening the
lives of women living in the greater Philadelphia area. Linda
Creed encourages women and their families to talk about
breast cancer, learn about it, and take control of their health
and their lives.
Resource Checklist
ADDRESS:
PO Box 40607
Philadelphia, PA 19107
CONTACT INFO:
Phone: 1-877-992-7333
215-564-3700
E-mail: [email protected]
Free mammography screening schedule
Medical care assistance
Extensive breast cancer information
Clinical trials information
Pennsylvania Breast Cancer
Coalition
www.pabreastcancer.org
The PA Breast Cancer Coalition (PBCC) represents, supports,
and serves breast cancer survivors and their families in
Pennsylvania through educational programming, legislative
advocacy, and breast cancer research grants. The PBCC is a
statewide nonprofit organization that creates the hope of a
brighter tomorrow by providing action and information for
women with breast cancer.
ADDRESS:
344 North Reading Road
Ephrata, PA 17522
CONTACT INFO:
Phone: 1-800-377-8828
717-721-2580
E-mail: [email protected]
14
Resource Checklist
Find a support group service
Survivor stories
Free online course for nurses, social workers, and advocates
Patient resources
Blog
Newsletter
www.vbcf.org
Regional
Virginia Breast Cancer
Foundation
The Virginia Breast Cancer Foundation (VBCF) is an
organization committed to the eradication of breast cancer
through education and advocacy. Its goal is making the
elimination of breast cancer a state and national priority,
to advocate for the collective needs of people affected by
breast cancer, and to educate all Virginians on the truth
about breast cancer.
CONTACT INFO:
Phone: 1-800-345-8223
804-285-1200
Resource Checklist
Blog
Order free literature
Find a support group service
Newsletters
Legal resources
Insurance resources
AdvancedBC.org
www.advancedbc.org
The goal of AdvancedBC.org is to empower women and
their families to forge more effective partnerships with
their medical team. AdvancedBC.org gathers a collection of
important resources and places them on the organization’s
website to provide readers with evidence-based information.
ADVANCED/METASTATIC
ADDRESS:
5004 Monument Avenue
Suite 102
Henrico, VA 23230
Resource Checklist
CONTACT INFO:
E-mail: Through website
Advanced/metastatic breast cancer information
Information about standard treatments
Free resources
Clinical trials information
List of helpful products and remedies
Research information for healthcare professionals
Extensive list of support groups and resources
Financial assistance information
15
ADVANCED/METASTATIC
Advanced Breast Cancer
Community
www.advancedbreastcancercommunity.org
Sponsored by Novartis
ADDRESS:
Novartis
1 Health Plaza
East Hanover, NJ 07936
CONTACT INFO:
Phone: 1-888-669-6682
E-mail: Through website
Specific to the different physical and emotional needs of
advanced breast cancer patients, the Advanced Breast
Cancer Community is a compilation of several advocacy
organizations that have partnered with Novartis to help raise
awareness about advanced breast cancer. Advanced Breast
Cancer Community’s mission is to recognize those living
with advanced breast cancer and their caregivers, supporters,
friends, and family members.
Resource Checklist
Advanced/metastatic breast cancer information
Listing of advocacy organizations
Online support community
Financial support resources
Hotlines
Treatment overview
News
BrainMetsBC.org
www.brainmetsbc.org
BrainMetsBC.org is a resource for breast cancer patients
with brain metastases and their families, as well as anyone
interested in learning more about brain and other central
nervous system metastases of metastatic breast cancer. The
website is medically reviewed, and is a source for the latest
information about this form of the disease.
Resource Checklist
CONTACT INFO:
E-mail: Through website
16
Advanced/metastatic breast cancer information
Personal stories
Doctor’s corner
Clinical trials information
Treatment resources
Available in Spanish
www.mbcn.org
ADDRESS:
PO Box 1449
New York, NY 10159
CONTACT INFO:
Phone: 1-888-500-0370
E-mail: [email protected]
The Metastatic Breast Cancer Network (MBCN) dedicates its
work to the unique concerns of women and men living with
metastatic breast cancer. Founded by 2 advanced breast cancer
patients who felt isolated from their support groups, MBCN
was created with a mission to develop awareness of metastatic
breast cancer by putting a public face on the metastatic
experience. MBCN strives to help those living with metastatic
breast cancer be their own best advocate through education.
MBCN helps patients cope by providing them with information
regarding better treatments.
ADVANCED/METASTATIC
Metastatic Breast Cancer
Network
Resource Checklist
Advanced/metastatic breast cancer information
Order brochures
Tips
Questions for your physician
Clinical trials information
Support groups
Drug information
METAvivor Research and
Support, Inc
www.metavivor.org
ADDRESS:
1783 Forest Drive
#184
Annapolis, MD 21401
CONTACT INFO:
Phone: 410-353-3733
E-mail: [email protected]
Run entirely by volunteers, METAvivor’s mission is to end
death caused by metastatic breast cancer. The organization
provides support options to those impacted by the disease
while they continue working to increase awareness and
funding toward current and future research. Ultimately, this
organization hopes research will help transition metastatic
breast cancer from a terminal disease to a controlled,
permanently survivable condition, thus offering a decent
quality of life for patients.
Resource Checklist
Advanced/metastatic breast cancer information
Blog
Statistics
Support programs
META Book Nook program
Research news
17
cultural
Día de la Mujer Latina
www.diadelamujerlatina.org
Día de la Mujer Latina was founded by a Latina breast cancer
survivor. The mission of Día de la Mujer Latina is to promote
health awareness and wellness to the underserved Latino
community by providing informational resources that are
culturally and ethnically specific. The organization facilitates
early detection screening and prevention care interventions.
Resource Checklist
ADDRESS:
14 Sunnyvale Lane
Manvel, TX 77578
CONTACT INFO:
Phone: 281-489-1111
E-mail: [email protected]
Available in Spanish
Information about screening tests
Healthy lifestyle tips
Information about preventive medicines
Information about depression
Additional resources
Intercultural Cancer Council
www.iccnetwork.org
The Intercultural Cancer Council (ICC) promotes policies,
programs, partnerships, and research to eliminate the
unequal burden of cancer among racial and ethnic minorities,
and medically underserved populations in the United States
and its associated territories.
Resource Checklist
ADDRESS:
1 Baylor Plaza
MS 620
Houston, TX 77030
CONTACT INFO:
Phone: 713-798-4614
E-mail: [email protected]
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Categorized cancer fact sheets
Additional resources and support groups
Regional groups
Public conferences
www.nueva-vida.org
Nueva Vida provides a continuous flow of culturally
appropriate services to support Latina women diagnosed
with cancer in the metropolitan areas of Washington, DC,
Baltimore, and Richmond. The organization’s mission is to
inform, support, and educate Latinas whose lives have been
affected by cancer, including breast cancer. Nueva Vida
advocates for access to high-quality medical services for
timely detection, diagnosis, and treatment of cancer.
CONTACT INFO:
Phone: 1-866-986-8432
202-223-9100
E-mail: [email protected]
cultural
Nueva Vida
Resource Checklist
Available in Spanish
Bilingual support groups
Newsletters
Video gallery
Additional resources
Individual counseling
Sharsheret
www.sharsheret.org
Sharsheret nationally supports young Jewish women and their
families as they face breast cancer. The organization’s mission
is to offer a community of support to women of all Jewish
backgrounds diagnosed with breast cancer or at increased
genetic risk by fostering culturally relevant individualized
connections with networks of peers, health professionals, and
related resources.
ADDRESS:
1086 Teaneck Road
Suite 3A
Teaneck, NJ 07666
CONTACT INFO:
Phone: 1-866-474-2774
201-833-2341
E-mail: [email protected]
Resource Checklist
Advanced/metastatic breast cancer information
Brochures and booklets
Information for caregivers
Information for health care professionals
Ask a question feature
Jewish support program locator
Clinical trials information
Newsletters
Blog
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cultural
Sisters Network Inc
www.sistersnetworkinc.org
Sisters Network Inc is a national African American breast
cancer survivorship organization. The organization is
committed to increasing local and national attention to the
devastating impact that breast cancer has on the African
American community.
Resource Checklist
ADDRESS:
2922 Rosedale Street
Houston, TX 77004
CONTACT INFO:
Phone: 1-866-781-1808
713-781-0255
E-mail: [email protected]
Online community
Financial assistance
Additional resources
Breast cancer facts
Questions for your physician
Support groups
Young Japanese Breast
Cancer Network
Bcnetwork.org
CONTACT INFO:
E-mail: [email protected]
The mission of Young Japanese Breast Cancer Network
(BCNetwork) is to provide cutting edge treatment information
to newly diagnosed Japanese women with breast cancer and
to raise awareness among young Japanese women on the
importance of early detection. The network understands that
a woman diagnosed with breast cancer must face several
challenges. Additionally, the network understands that Japanese
women living in the United States face language challenges,
differences in the healthcare system, and fertility issues after
cancer treatments. The goal of BCNetwork is to respond to the
medical and social needs of Japanese breast cancer patients.
Resource Checklist
Articles
Symposiums
Community seminars
Support group meetings
Hotline
E-newsletters
20
www.cancer.org/Cancer/BreastCancer/
index?ssSourceSiteId=null
The American Cancer Society (ACS) is a nationwide, communitybased voluntary health organization dedicated to eliminating
cancer as a major health problem. The society’s international
mission concentrates on capacity building in developing
cancer societies and on collaboration with other cancer-related
organizations throughout the world in carrying out shared
strategic directions.
ADDRESS:
250 Williams Street NW
Atlanta, GA 30303
CONTACT INFO:
Phone: 1-800-227-2345
E-mail: Through website
GENERAL cancer support
American Cancer Society
Resource Checklist
Clinical trials information
Coping tips
Caregiver information
Circle of sharing community
Disease-specific information
Stories of hope
Recent news
Available in multiple languages
CancerCare
www.cancercare.org/diagnosis/breast_cancer
CancerCare provides free professional support services to
anyone affected by cancer, including patients, caregivers,
children, loved ones, and the bereaved. The organization
helps more than 100,000 people annually face the crisis
of cancer, and the website has become a leading online
resource for cancer information, with more than 1 million
unique visitors last year.
ADDRESS:
275 Seventh Avenue
22nd Floor
New York, NY 10001
CONTACT INFO:
Phone: 212‑712‑8400
1-800‑813‑4673
E-mail: [email protected]
Resource Checklist
Advanced/metastatic breast cancer information
Free counseling
Financial assistance
Free community programs
Patient stories
Podcasts
Free publications
Connect Education Workshops
Available in Spanish
21
GENERAL cancer support
Cancer.Net
American Society of Clinical Oncology
www.cancer.net/cancer-types/breast-cancer
Cancer.net is the American Society of Clinical Oncology’s
(ASCO’s) patient information website. The website was
founded on the belief that well-informed patients are
their own best advocates and are invaluable partners for
physicians. Cancer.net provides patients and families with
timely, comprehensive information to help make informed
healthcare decisions.
ADDRESS:
American Society of Clinical Oncology
Attn: Communications and Patient
Information Department
2318 Mill Road
Suite 800
Alexandria, VA 22314
CONTACT INFO:
Phone: 1-888-651-3038
571-483-1780
E-mail: [email protected]
Resource Checklist
Extensive breast cancer information
Information on advanced cancer care planning
Publications
Tips for coping
Patient stories
Find an oncologist resource
Available in Spanish
Cancer and Careers
www.cancerandcareers.org
Cancer and Careers is a program of the CEW Foundation,
the charitable arm of Cosmetic Executive Women, Inc. To
help eliminate fear and uncertainty, Cancer and Careers is
dedicated to empowering and educating people with cancer
to thrive in their workplace by providing expert advice,
interactive tools, and educational events. The Cancer and
Careers website informs more than 180,000 visitors per year.
ADDRESS:
Cosmetic Executive Women
286 Madison Avenue
19th Floor
New York, NY 10017
CONTACT INFO:
Phone: 212-685-5955
E-mail: [email protected]
22
Resource Checklist
Questions for your physician
Legal and financial information
Suggestions for coping
Job searching information
Ask a career coach blog
Patient diaries
Information for coworkers
Information for health care professionals
Available in Spanish
www.cancersupportcommunity.org/MainMenu/
About-Cancer/Types-of-Cancer/Breast-Cancer
ADDRESS:
1050 17th Street, NW
Suite 500
Washington, DC 20036
CONTACT INFO:
Phone: 1-888-793-9355
E-mail: [email protected]
The Cancer Support Community (CSC) is one of the largest
providers of cancer support worldwide, encompassing 56
affiliates as well as more than 100 satellite offices worldwide.
CSC is the largest nonprofit employer of psychosocial
oncology mental health professionals in the United States. The
organization offers services and education that put patients at
the center of their care so that no one has to face cancer alone.
CSC strives to answer the social and emotional needs of those
affected by cancer, and ensures that all affected by breast
cancer are empowered by knowledge, strengthened by action,
and sustained by their community.
GENERAL cancer support
Cancer Support Community
Resource Checklist
Advanced/metastatic breast cancer information
Order or download free resources
Extensive breast cancer information
Create your own website feature
Online support
Internet radio show
Information for family and friends
Open to Options treatment counseling
CopingUniversity.com
www.copinguniversity.com
CopingUniversity.com is a service of The Patient/Partner
Project. Founded by a cancer caregiver, David Balch,
CopingUniversity.com offers stress-reducing tips and
inspirational audio and video programs for patients, loved
ones, and caregivers. The website is specific to coping
strategies, rather than information about cancer.
Resource Checklist
ADDRESS:
PO Box 824
Twin Peaks, CA 92391
CONTACT INFO:
Phone: 1-866-725-7877
E-mail: Through website
Free e-mail mini-course
Patient/partner online progress reports
Recorded programs
Downloadable handouts
Free monthly newsletter
23
GENERAL cancer support
National Cancer Institute
www.cancer.gov/cancertopics/types/breast
The US National Cancer Institute’s website provides
accurate, up-to-date information about many types of cancer,
information about clinical trials, resources for people dealing
with cancer, and information for researchers and health
professionals.
Resource Checklist
ADDRESS:
6116 Executive Boulevard
Suite 300
Bethesda, MD 20892
CONTACT INFO:
Phone: 1-800-422-6237
Advanced/metastatic breast cancer information
Live online chat
Toll-free hotline
Extensive disease information
Clinical trials information
Drug dictionary
Available in Spanish
National Coalition for
Cancer Survivorship
www.canceradvocacy.org
ADDRESS:
1010 Wayne Avenue
Suite 770
Silver Spring, MD 20910
CONTACT INFO:
Phone: 301-650-9127
E-mail: [email protected]
24
The National Coalition for Cancer Survivorship (NCCS) represents
the millions of Americans who live with, through, and beyond
cancer. Understanding that cancer survivors and their caregivers
face many challenges, the NCCS advocates for changes in how
the nation researches, regulates, finances, and delivers quality
cancer care; convenes with other cancer organizations to address
nationwide public policy issues affecting cancer survivors; and
empowers cancer survivors through NCCS publications and
programs that provide tools for self-advocacy.
Resource Checklist
Cancer survival toolbox
Survivor stories
Financial information
Tips for coping
Information for health care professionals
Telephone workshops
Publications
News
www.patientadvocate.org/resources.php?p=823
Patient Advocate Foundation (PAF) offers assistance to
patients who receive a diagnosis of a life-threatening or
debilitating disease. PAF case managers assist patients
with issues specific to insurance, an employer, or a creditor
regarding insurance, job retention, and debt crisis matters.
Resource Checklist
CONTACT INFO:
Phone: 1-800-532-5274
E-mail: [email protected]
Downloadable publications
Resource directories
Clinical trials information
Information for uninsured patients
Co-pay assistance
Webinars
Online assistance
Toll-free helpline
Available in Spanish
CaringBridge
www.caringbridge.org
CaringBridge is a nonprofit organization offering free
personalized patient websites to those diagnosed with or
recovering from cancer, a significant accident or injury, or
another serious illness. CaringBridge focuses on ensuring
that families receive the love and compassion they need
during a significant health challenge by reaching out to
more families.
ADDRESS:
1715 Yankee Doodle Road
Suite 301
Eagan, MN 55121
CONTACT INFO:
Phone: 651-789-2300
651-452-7940
E-mail: Through website
Resource Checklist
Social media/Web support
ADDRESS:
421 Butler Farm Road
Hampton, VA 23666
GENERAL cancer support
Patient Advocate Foundation
Create your own website feature
SupportPlanner calendar
Amplifier Hub for volunteers
Available in Spanish
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Social media/Web support
The Inspire Advanced Breast
Cancer Support Community
www.inspire.com/groups/advanced-breast-cancer
Inspire was created with the belief that patient contributions
to medical progress have been historically underappreciated
and that progress in medical research will result from
involving patients as well as fully valuing their contributions.
This privately held company partners with breast cancer
organizations to provide online patient communities in a
safe, privacy-protected environment.
ADDRESS:
66 Witherspoon Street
Suite 402
Princeton, NJ 08540
CONTACT INFO:
Phone: 1-800-945-0381
E-mail: [email protected]
Resource Checklist
Advanced/metastatic breast cancer information
Create your own website feature
Start an Inspire partner organization feature
MyLifeLine.org Cancer
Foundation
www.mylifeline.org
Proudly supporting more than 74,000 people, MyLifeLine.org
encourages cancer patients and caregivers to create free,
customized websites. Each personalized page helps build
an online support community of family and friends to foster
connection, inspiration, and healing.
ADDRESS:
55 Madison Street
Suite 750
Denver, CO 80206
CONTACT INFO:
Phone: 720-883-8715
E-mail: [email protected]
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Resource Checklist
Breast cancer resource guides
Caregiver resources
ComfortCare Marketplace for side effects
Create your own website feature
.com
This Resource Guide was supported by Novartis
Pharmaceuticals Corporation. The information is designed
to be a summary of information and not an exhaustive list of
available resources. Intellisphere Oncology Specialty Group was
responsible for selecting the groups included in this supplement.
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