Resources for metastatic breast cancer

Metastatic Cancer Organizations

Willow – Willow Breast & Hereditary Cancer Support was founded in 1994 as a national, not-for-profit organization. Willow provides free-of-cost support, insight and information to anyone affected by breast cancer or hereditary cancer.

Metastatic breast cancer network (MBCN) – A community that has a Guide for the Newly Diagnosed, connects and supports MBC patients and holds an annual patient conference which can be viewed online.

Living beyond breast cancer (LBBC) – A site which offers high quality information for all breast cancer patients and survivors and also holds an annual MBC conference.

Advanced breast cancer community – The Advanced Breast Cancer Community is a web portal and online community solely dedicated to advanced/metastatic breast cancer patients, their families, friends and health care providers.

AdvancedBC.org – AdvancedBC.org is dedicated to the needs of people living with metastatic breast cancer. The website links to online resources, information about research and treatments, and the perspectives of Musa Mayer, long-time advocate and author.

METAvivor – A non-profit organization dedicated to increasing awareness of advanced breast cancer and equity in research and patient support.

MetaCancer – The mission of the MetaCancer Foundation is to improve the psychosocial condition of people living with metastatic cancers. Its website includes information and tips, as well as an online community.

Metastatic Breast Cancer Advocacy Canada – The MBCAC purpose is to join voices to advocate to Canadian governments for better research and medical resources, to coordinate with other Canadian breast cancer organizations and to connect with people with metastatic breast cancer.

Breast Cancer Awareness Guide – Wristband Resources – This guide explains everything from breast cancer symptoms, risk factors and treatment options.

Clinical trials in Canada and the US

BreastCancerTrials.org – BCT is a non-profit service that encourages individuals affected by breast cancer to consider clinical trials as a routine option for care
(Pharma sponsored)

ClinicalTrials.gov – A web-based resource that provides patients, their family members, health care professionals, researchers, and the public with easy access to information on publicly and privately supported clinical studies on a wide range of diseases and conditions. The website is maintained by the National Library of Medicine (NLM) at the National Institutes of Health (NIH).

Clinical trials research studies (LBBC) – Get basic information about breast cancer clinical trials, find studies you may be eligible to participate in and explore tools to help you decide whether taking part in a clinical trial is right for you.

Message Boards/Online Communities for MBC

Cancer connection – A discussion board focused on various cancer offered by the Canadian Cancer Society.

BC METS community – A community provided support and information for metastatic breast cancer sponsored by breast cancer advocate Musa Mayer

Breastcancer.org – A discussion forum devoted to Stage IV and metastatic breast cancer.

Inspire – The Advanced Breast Cancer Community is a web portal and an online community dedicated to advanced/metastatic breast cancer patients, their families, friends and health care providers.

The closed metastatic (advanced) breast cancer facebook support group – As a closed group, only members who join can see what is posted within the group. To request access, click here and then click on ‘join group’.

TNBC foundation – Offers a forum for those with metastatic triple negative breast cancer.

Her2 support group – A forum for patients with Her2+ breast cancer, however, there is no separate thread for just metastatic users

In-Person Support

Cancer support community – A free program with emotional support, education, and hope for people with cancer and their families; has Canadian offices in Toronto, Kingston and Barrie.

Cancer care, Inc – Offers support services, education, information, referrals, and financial assistance in various locations across Canada and the U.S.

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. (US)

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. (US)

Telephone Support: Hotlines

Willow – Breast cancer helpline – Willow support team members, each of whom has had breast cancer or a high-risk diagnosis, provide personalized service to all of Willow’s clients.The Support Team work together with their Health Librarian, providing patients with the most accurate information and resources to address your unique concerns and questions.

Cancer connection – A telephone peer support program and discussion board offered by the Canadian Cancer Society. 1 800 263-6750 M-F 9AM-5PM. Available in French or English.

Cancer care – Offers a 12 week free telephone support group for those living with MBC nationwide in the U.S. To register, call 800?813?HOPE (4673). (US)

SHARE – A telephone support program for metastatic women on Mondays from 4-5pm. They also have a metastatic evening group called Living With Uncertainty, which meets on the phone twice a month on Thursday evenings from 6:30-7:30. To register for either program, call 212-382-2111. You will then be supplied with the 800 call-in number. (US)

Support connection Inc. – An ongoing toll-free telephone support group on the first Monday of each month at 8PM ET. This group is for women living with advanced or metastatic breast cancer, facilitated by a survivor, and is designed to provide an opportunity for women with a common diagnosis to share their concerns and support one another. Participants in the group include women who live locally as well as women from across the country. Call in advance at 914-962-6402, or toll-free at 800-532-4290, to register and receive instructions on how to participate in this telephone support group. (US)

Young survival coalition – Offers a telephone and networking support session every 2nd Tuesday of the month from 8:00-9:30 pm (ET) for young women diagnosed before age 40 with MBC. (US)

National call-in number: 877.594.8353
International call-in number: 720.362.6860
Access Code: 0284559#

Remaining 2014 dates: October 14, 2014, November 11, 2014, and December 9, 2014.

Native American cancer research – A telephone line and network support for Native Americans with cancer. Toll-Free at 303-838-9359 (US)

Neuve Vida for Latin’s with cancer – Neuva Vida aims to improve the health outcomes and enhance the quality of life of medically under served Latina families, often in poverty, who face their illness far from family and friends. Nueva Vida is a regional organization with national recognition that offers telephone and support network Toll-free at 202-233-9100. (US)

Sisters for African American women – Commited to increasing local and national attention to the devastating impact that breast cancer has on African American Community. Offering telephone and network support Toll-Free at 731-718-0255. (US)

Further resources and articles on MBC

Triple step toward the cure – Raising awareness for triple negative breast cancer

Metastatic breast cancer alliance – The Metastatic Breast Cancer Alliance unifies the efforts of its members to improve the lives of and outcomes for those living with metastatic breast cancer and their families through increasing awareness and education about the disease and advancing policy and strategic coordination of research funding specifically focused on metastasis that has the potential to extend life, enhance quality of life and ultimately to cure.

Breast cancer social media (BCSM) community – An article entitled ‘Changing the Metastatic breast cancer landscape’

MBC Alliance press release – A press release entitled ‘Fifteen leading charities and advocacy groups join forces to change the way MBC is understood and to increase focus on research’