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 19 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 support groups listed below to be directed to their websites.  Printed below the organization name is the mission statement or a short description of the website.  Please note: the TBCRC neither endorses nor takes responsibility for the sites listed below.   Further, as there are numerous oncology-related support groups, we only listed those organizations that focus on breast cancer.

Breast Cancer Research Foundation (BCRF)
"Our mission 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."

Susan G. Komen
Susan G. Komen has "evolved into the world’s largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures".

Avon Foundation for Women
The Avon Foundation for Women supports breast cancer "awareness and education, screening and diagnosis, access to care, support services, and scientific research".

ABCD- After Breast Cancer Diagnosis
"ABCD provides free, personalized information and one-to-one support to people affected by breast cancer – patients, families and friends.”

This website is designed "for patients, caregivers, mothers, daughters, sons, and husbands of breast cancer survivors who are HER2 positive.  On this site newly diagnosed patients and long term survivors are willing to share their experiences and knowledge".  The organization "promises to assist members by supporting their concerns and providing links to news and current research."

Inflammatory Breast Cancer Research Foundation
The mission of the Inflammatory Breast Cancer Research Foundation is "to assist scientists and researchers in their quest to determine the definitive causes of inflammatory breast cancer. The Inflammatory Breast Cancer Research Foundation seeks to assist them in their work so effective and meaningful detection and diagnosis, prevention and treatment can be pursued and achieved."  

Living Beyond Breast Cancer
Living Beyond Breast Cancer (LBBC) is a national education and support organization. Their medical advisory board lists many respected  members from a broad spectrum of medical services.  “LBBC empowers all women affected by breast cancer to live as long as possible with the best quality of life”.

Metastatic Breast Cancer Alliance (MBC 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".

Metastatic Breast Cancer Network (MBCN)
"The MBCN is a national, independent, non-profit, all volunteer, patient-led advocacy organization dedicated to the unique concerns of the women and men living with metastatic breast cancer, also know as Stage IV or advanced breast cancer."

National Breast Cancer Foundation (NBCF)
"The National Breast Cancer Foundatin's (NBCF) mission is to save lives through early detection and to provide mammograms for those in need.  The mission of the NBCF includes increasing awareness through education, providing diagnostic breast cancer services for those in need, and providing nurturing support services."

SHARE- for Women Facing Breast and Ovarian Cancers
"SHARE Cancer Support is the leading ovarian and breast cancer organization, offering support for women with breast cancer, metastatic breast cancer and ovarian cancer."

Sisters Network Inc.
"Sisters Network Inc. is committed to increasing local and national attention to the devastating impact that breast cancer has in the African American community."

Triple Negative Breast Cancer Foundation
The mission of the Triple Negative Breast Cancer Foundation is "to raise awareness of triple negative breast cancer and to support scientists and researchers in their effort to determine the definitive causes of triple negative breast cancer, so that effective detection, diagnosis, prevention and treatment can be pursued and achieved."

The Young Survival Coalition (YSC)
The Young Survival Coalition (YSC) is a breast cancer advocacy organization. The YSC organization works with survivors, caregivers, and the medical, research, advocacy, and legislative communities to increase the quality and quantity of life for women diagnosed with breast cancer ages 40 and under. YSC seeks to increase the number of studies of young women and breast cancer.

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