Message from the TBCRC Patient Advocates

As patient advocates, we are providing this message to not only provide support during what we know to be a difficult time, but also to give some information that we believe is helpful to you.  The TBCRC advocates are women who have survived breast cancer and now want to help other breast cancer patients by assuring the patient voice is heard and valued by researchers.

Unfortunately, you will soon find that there is no “answer book” on what to do with a breast cancer diagnosis.  As you begin to explore your options, keep in mind that many people are living long lives with breast cancer.  Some of the newest approaches to treatment are offered as “clinical trials”. Clinical trials are developed to conduct research in a way that will provide you with comprehensive and caring treatment, while developing information about new treatments that could help patients like you in the future.

You are likely reading this message because your physician has suggested a clinical trial conducted by the Translational Breast Cancer Research Consortium (TBCRC).  The TBCRC is a group of 18 cancer hospitals/research centers that conduct innovative breast cancer clinical trials.  The TBCRC consists of oncologists, surgeons, scientists, statisticians, study coordinators, and patient advocates.  All of these individuals- the advocates included- provide input into the development of each trial.

Please ask your doctor all your questions- as we want you to make the best decision for your particular situation.  Although you may feel overwhelmed, please remember- you are not alone.  There is support for you and your family.  It can be helpful to know that others understand what you are going through.  We’ve listed some online patient resources that might be of interest to you.

With best wishes,

The TBCRC Patient Advocates

Clinical Trial Information

It is likely that you are visiting this site because your physician has suggested that you enroll in a clinical trial.  In the United States, clinical trials can be funded by government agencies, pharmaceutical companies, and/or by private foundations.  Several websites have been developed to assist both physicians and patients in finding appropriate clinical trials.  A few sites are listed below.  Please note: the TBCRC neither endorses nor takes responsibility for the sites listed below.

The American Cancer Society Clinical Trials Matching Service: a free, confidential program that helps patients, their families, and health care workers find cancer clinical trials most appropriate to a patient's medical and personal situation. Through a partnership with the Coalition of Cancer Cooperative Groups, one can find research studies that are testing new drugs or methods to prevent, detect or treat cancer.

Breast Cancer a website that is specific to breast cancer clinical trials for both women and men. Its main feature matches people looking for a clinical trial for which they are eligible. Users can also browse trial listings by clinical trial type; e.g., chemotherapy. This website includes trials funded by the National Cancer Institute, public research foundations, and the pharmaceutical/biotechnology industry. The National Cancer Institute (NCI), part of the National Institutes of Health, is the federal agency that provides funding for most cancer clinical trials. This site provides information on both open and closed cancer clinical trials that are funded by the government, pharmaceutical companies, and some international organizations a website initiated by U.S. law that mandates that all clinical trials conducted in the U.S. and around the world be listed on this website. The homepage has a simple layout with links for investigators, patients, advocates, and other consumers. There is exhaustive information from the “Background Information” and “Understanding Clinical Trials” links. Sponsors include: National Institute of Health, U.S. Department of Health and Human Services, U.S. National Library of Medicine, and Lister Hill National Center for Biomedical Communications.

Summary of Results

Protocol Title
TBCRC 018 TBCRC 018: A Phase II Study of the PARP Inhibitor, BSI-201, in Combination with Chemotherapy to Treat Triple Negative Breast Cancer Brain Metastasis View Details
TBCRC 017 TBCRC 017: Retrospective Project for the Predictive Accuracy of MRI to Determine Pathological Status in Patients Treated with Neoadjuvant Chemotherapy (NCT). View Details
TBCRC 011 TBCRC 011: A Non-randomized, Single Agent, Open-label, Phase II Study of Bicalutamide in Patients with AR+, ER-/PR- Metastatic Breast Cancer (MBC) View Details
TBCRC 008 TBCRC 008: A Multi-Institutional Double-Blind Phase II Study Evaluating Response and Measurable Outcome to Carboplatin and nab-Paclitaxel (CP) With or Without Vorinostat as Preoperative Chemotherapy in HER2-negative Primary Operable Breast Cancer View Details
TBCRC 007 TBCRC 007: A Phase II comparison and effectiveness study of medroxyprogesterone acetate (MPA) alone or in combination with low-dose chemotherapy in postmenopausal women with hormone receptor negative (HR-), metastatic breast cancer (MBC) View Details
TBCRC 001 TBCRC 001: Comparison and effectiveness of cetuximab alone or cetuximab with carboplatin in women with triple negative, metastatic breast cancer (MBC) View Details

Sources of Information

If you were recently diagnosed with breast cancer, you are not alone. Please click on the names of the organizations listed below to be directed to their websites. To request that a website be added as a link from the TBCRC website, please complete the TBCRC Link Request Form. Requests will be considered according to the TBCRC Linking Policy. Please note: the TBCRC neither endorses nor takes responsibility for the sites listed below.

TBCRC Supporting Organizations

Avon Foundation for Women
Breast Cancer Research Foundation
Susan G. Komen

Breast Cancer Organizations and Resources

After Breast Cancer Diagnosis
Alamo Breast Cancer Foundation
Breast Cancer Action
Breast Cancer Research Foundation
Bright Pink
Cancer Couch Foundation
Chrysalis Initiative
Cierra Sisters
Dense Breast
Dr. Susan Love Foundation for Breast Cancer Research
For the Breast of Us
Going Beyond the Pink
HIS Breast Cancer Awareness
Hope Scarves
IBC Network Foundation
Infinite Strength
Inflammatory Breast Cancer Research Foundation
Know Your Lemons Foundation
Living Beyond Breast Cancer
Lobular Breast Cancer Alliance
Male Breast Cancer Happens
Metaplastic Breast Cancer Global Alliance
Metastatic Breast Cancer Alliance
Metastatic Breast Cancer Network
Metastatic Breast Cancer Project and Count Me In
Metastatic Trial Talk
My Hope Chest
National Breast Cancer Coalition
Not Putting on a Shirt
Nueva Vida, Inc.
Pink Fund
Project Life
SHARE Cancer Support
Sisters Network
Surviving Breast Cancer
Susan G. Komen
The Tutu Project
Theresa’s Research Foundation
Tigerlily Foundation
Touch - the Black Breast Cancer Alliance
Triple Negative Breast Cancer Foundation
Twisted Pink
Unite for HER
Young Survival Coalition

Metastatic Breast Cancer-Specific Organizations and Resources

In addition to the organizations listed under Breast Cancer Organizations and Resources, these organizations focus specifically on people with metastatic breast cancer

Cancer Couch Foundation
Infinite Strength
Metastatic Breast Cancer Alliance
Metastatic Breast Cancer Network
Metastatic Breast Cancer Project and Count Me In
Metastatic Trial Talk
Project Life
Twisted Pink

General Cancer Organizations and Resources

American Cancer Society’s Look Good Feel Better Program
Cancer.Net (patient website of the American Society of Clinical Oncology)
Cancer Support Community
Cornell Community Cancer Partnership’s list of Opportunities and Resources for Cancer Research Advocates
GRASP: Guiding Researchers and Advocates to Scientific Partnerships
FORCE: Facing Our Risk of Cancer Empowered
Patient Advocate Foundation
National Lymphedema Network
Research Advocacy Network

Specimen Submissions/Tissue Banking