This blog will cover topics of interest that affect our community. Unless otherwise stated, the blog articles will be written by Sue Friedman, Executive Director of FORCE.

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Helping Hereditary Cancer Research: Participating in Research Studies

July 24, 2008

People frequently ask me what can be done to promote hereditary cancer research. Given the fact that our population is relatively small, and there are few research studies specifically for our community, connecting willing and eligible participants to open research studies is a critical piece of the work FORCE does to support research. If researchers can’t fill and complete their studies then the research funds may be wasted and fewer funds may be set aside for future research to benefit our community. I recently learned of some new studies and thought it timely to highlight clinical trials that might be of particular interest to our community. What follows is a sampling of research listed at this moment on (the research search tool through the National Institute of Health) and other research studies but is not a comprehensive or complete list of what is available. New studies are added continually, so keep checking back on the FORCE and the webpages for updates. A list of PARP Inhibitor studies is available on the FORCE website under our clinical trials and research section.

Breast and Ovarian Cancer Treatment Studies:
Most research on new treatments for breast and ovarian cancer are enrolling women with advanced (stage III or IV) disease. If you or a loved one has advanced breast or ovarian cancer, we encourage you to look into the following studies.

PARP Inhibitors and breast or ovarian cancer
These are new cancer therapies that take advantage of weaknesses of cancer cells. Clinical trials are looking at PARP Inhibitors for treating several different types of cancers, including breast cancer and ovarian cancer. Based on how the medication works, researchers are hopeful that it will work particularly well in BRCA mutation carriers with cancer.

Avastin and “triple-negative” breast cancer
Researchers are looking at specific treatments for a type of breast cancer known as “triple-negative” cancer. These cancers are called triple-negative because they are estrogen- and progesterone-receptor negative and are negative for overexpression of Her2neu. “Triple-negative” breast cancers are particularly common in women wtih BRCA 1 mutations (roughly 85% of BRCA 1 breast cancers are “triple-negative” while only about 5-10% of BRCA 2 breast cancers are “triple-negative”) therefore these studies may be of interest to many women in our community. Several studies are researching whether bevacizumab (Avastin) may work better than standard therapy for “triple-negative” breast cancers.

There are also open studies (not necessarily for BRCA carriers) researching Avastin for ovarian cancer treatment.

Prevention Studies
Searching for cancer prevention studies in high-risk women uncovered a few studies.

Breast cancer prevention
Two centers in California are participating in an open study to look at a medication called Deslorelin to lower the risk for breast cancer in women with a BRCA mutation.

One fascinating study which will be conducted in Israel but which is not yet recruiting women involves prophylactic radiation for breast cancer survivors with a BRCA mutation to prevent cancer in the opposite breast.

Other prevention studies although not necessarily specific to women with BRCA mutations are enrolling high-risk women.

Ovarian cancer prevention
A new phase II “prevention” trial from the Gynecologic Oncology Group (GOG) is open only to women who are planning risk-reducing salpingo-ophorectomy. The goal is to study a medication called Levonorgestrel (a type of progesterone) for the prevention of ovarian cancer (note that the clinical trial information for this study is from the National Cancer Institute and at the time of this writing it has not yet been listed on

Surveillance Studies
Breast surveillance
Few of the research listings under breast cancer detection or surveillance were specifically for high-risk women. This Protocol for Women at Increased Risk of Developing Breast Cancer study from the University of Kansas includes a surveillance component.

Ovarian surveillance
The Clinical Trial to Screen Participants Who Are at High Genetic Risk for Ovarian Cancer (also known as the ROCA Study) is still enrolling high-risk women at several sites.

The Robert H. Lurie Comprehensive Cancer Center at Northwestern University hasa surveillance study open to high-risk women in Chicago.

New York University (NYU) lists their National Ovarian Cancer Early Detection Program.

Other Studies of Interest
Registries for Women Undergoing Mastectomy
I recently became aware of two registries open to women undergoing mastectomy. One is a registry for patients having a risk-reduction mastectomy at Georgetown University Hospital (Washington, DC). The other is a registry studying nipple-sparing mastectomy and is open to women having surgery at Evanston Northwestern.

Another study being conducted at Massachusetts General Hospital and Dana-Farber Cancer Institute that might be of interest for postmenopausal women in our community is looking at treating menopausal symptoms using nonhormonal therapies. The study is open to survivors and previvors who fit eligibility criteria.

Another fascinating study entitled Standard Genetic Counseling With or Without a Decision Guide in Improving Communication Between Mothers Undergoing BRCA1/2 Testing and Their Minor-Age Children is enrolling women in Boston (through Dana-Farber Cancer Institute) and DC (through Lombardi Cancer Center) undergoing genetic counseling for BRCA who have children who are minors. Note that the study is about mothers communicating their test results to children and does not involve actual testing of minors for BRCA.

Is a research study right for you?
Participating in research studies is a personal decision. A person may qualify for a research study but may not choose to participate. Additionally, not everyone who would like to participate in research qualifies for studies that are available. For more information on the benefits and risks of participating in research, explanation of types of research studies, and links to further studies visit the FORCE website page on clinical trials and research. If you are a researcher with a study enrolling hereditary cancer or high-risk people, please visit the FORCE website section for health care professionals to learn how to list your study.

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  1. katbur says:

    Good to have this info somewhere else. The clinicaltrials site is a bit dry and it’s always good to find new options.

  2. paulina says:

    brac1 positive e1694x mom, gma, sister s all past before 60 one half sister stage 3 ovarian stage 4 breast. in san diego calif

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