Newsletters

Dear Reader,

Facing our Risk of Cancer Empowered  ( FORCE )  is one of the most well-established and credible resources for anyone who wants to know anything about inherited breast and ovarian cancer risk. This month we have published a review of their website prepared by volunteer Ann Marie Martin, MPT, as part of our blog series recommending reliable web-sites that share evidence based information on breast cancer related issues and healthy living resources. You can read this latest review here.

30 years ago my family history was the only indicator that I might be high risk for breast and ovarian cancer. On that basis alone I made significant decisions in order to mitigate those risks. It was only much more recently that a laboratory identified my BRCA1 inherited genetic mutation. Now one of my young adult daughters is starting the process of making sense of her inherited BRCA1 mutation risk and the options for staying healthy that are available to her. Even with all the 'preparation' we have both had for this moment it has not been without sadness and grief. I have worked hard to role model to her that knowledge is power. Testing provides knowledge.  However testing alone does not provide all the answers.  Please read the next segment below to ensure that you understand the best way to get the best information about your risk.Testing and evaluation by a trained expert will give you the most reliable information for you and help you make the most informed choices about reducing your breast cancer risk.  Both have served me well so far!

Does alcohol cause breast cancer? Did you read the recent article in Mother Jones which is a good piece written for the public by a breast cancer survivor.  You can access it here.  Breast cancer risks are not clear cut or sudden; they are complex, they interact and they are embedded in our physical and our social environments. Therefore, risk reduction and prevention efforts must be multi-faceted, incremental and sustained. In this context ZBC recommends that one of the things you can do to protect your breast health is to limit your alcohol consumption.

Study: Mother's weight linked to daughters' early puberty. You can read the report in the Mercury News publsidhed on April 23rd, 2018.  Shout out to Rachel Cornejo, a former a member of the CYGNET Study Youth Advisory Board (YAB) and now at UC Berkeley who reflects on her own personal experience with early puberty.

The topic of body mass and its influence on breast cancer risk and treatment outcomes is complicated and much studied. Two pieces were published on April 5th, 2018 in JAMA Oncology (a monthly peer-reviewed medical journal published by the American Medical Association, with a focus on cancer) that shed knew light and deepen our understanding of how the scientific understanding of this complex topic is changing. 

• Association of Muscle and Adiposity Measured by Computed Tomography With Survival in Patients With Nonmetastatic Breast Cancer. Bette J Caan, DrPH, et al..  A distinguished researcher at the Kaiser Permanente Northern California Division of Research in Oakland, CA, Bette is also a member of ZBC's Scientific Advisory Group (SAG).  You can access the full paper here and a very readable synopsis in Medscape.com here. In a nutshell their observational study suggests that clinicians should not only be concerned about a patients Body Mass Index (BMI) but about the patients ratio of fat to muscle. At the risk of oversimplifying more muscle at any body weight seems to be desirable and associated with better outcomes for breast cancer patients. This may in part explain widely verified findings that exercise is positively associated with primary breast cancer and recurrence risk reduction.
• ZBC collaborator, Esther John, PhD (formerly of Cancer Prevention Institute of California (CPIC), now Stanford) and her colleague Elisa V Bandera, MD, PhD were invited to write a commentary on the topic. Obesity, Body Composition, and Breast Cancer: An Evolving Science.  The commentary opens with this statement "The role of obesity in breast cancer development has been known for decades, but better and larger studies over time have uncovered more details about the complex association."  You can read the first page here.

Last but not least please join us in recognizing three leading lights in the world of public health to whom ZBC has been directly connected with as a partner or whose work informs our understanding of environmental risk factors for breast cancer or who has inspired us greatly. On Saturday night April 21st the University of California Berkeley's School of Public Health (SPH) celebrated it 75th year by honoring its 75 most influential alumni. Congratulations to Robert A. Hiatt MD, MPH '72, PhD '80,Paul English PhD '92, MPH '85 and Rena J Pasick DrPH '85, MPH '80.  Thank you and all your colleagues for the work that you do to contribute to reducing the burden of breast cancer and other diseases in our communities.

Yours in health,

Rose Barlow 

Executive Director

PS.  ZBC is growing its number of monthly donors significantly and you can become one too!  If you read these monthly newsletter regularly then please consider a monthly gift of $25 or $50 (any amount helps) to help sustain the work of translating, disseminating and communication evidence-based information about breast cancer risk reduction. Its quick and easy and you can now pay by  PayPal too. Just click on this secure link and get started.  Thank you!

APPROACH THESE WITH DUE CAUTION!

FDA Approves New Direct-to-Consumer Genetic Test for 3 BRCA Mutations

Leah Kelley, MD,  breast surgeon and a leader in Marin Cancer Center’s High Risk Breast Program is a member of the ZBC Scientific Advisory Group (SAG). Dr. Kelly agrees that ZBC should add its voice alongside those of others about the limitations of the recently approved, direct-to-consumer, testing services for inherited breast cancer risk.  We salute FORCE for their Official Statement which we find to be informative and soundly reasoned. You can read the full version here.

It is really important to remind you that inherited breast cancers only explain 5 - 10% of all breast cancers. A negative result from direct to consumer tests does not automatically mean no or low risk; you may nonetheless have personal risk factors which could include, but are not limited to, lifestyle, occupation, past medical history, family history etc. not discover-able in a test tube. In the absence of appropriate counseling and education, a negative genetic test may give the false impression of low or average breast cancer risk to someone whose risk may in fact be elevated.  We encourage you to seek advice from someone trained to evaluate your risk if you are concerned.

 For emphasis we have shared in full all the key points contained in the FORCE statement.  And we quote;

• The best way for anyone to learn about his or her risk of cancer is to consult with a genetics expert before undergoing genetic testing for increased cancer risk. Information on how to find a genetic counselor is available through the FORCE website.
• People who receive a positive BRCA test result from 23andMe should speak to a genetics expert to better understand their cancer risk and how to manage it.
• People who test negative for a BRCA mutation through 23andMe may still be at increased risk for cancer.
• This 23andMe test only looks for the three most common BRCA1 or BRCA2 mutations found in Ashkenazi Jewish people. BRCA1 and BRCA2 mutations have been found in people of every race and ethnicity. Over 5000 different BRCA mutations have been identified through genetic testing. People of Jewish ancestry can carry one or more of the other thousands of BRCA1 or BRCA2 mutations, or in other high-risk cancer genes.
• Testing only for the three founder mutations is most helpful for people of Ashkenazi Jewish descent. About 2.5% of Ashkenazi Jewish people carry one of the inherited BRCA mutations tested for in 23andMe’s panel. It’s important to note, however, that some Jewish people carry a mutation other than one of the three founder mutations tested for in this panel. As such, a Jewish person may falsely assume that they do not carry a BRCA genetic mutation if the GHR test is negative. Beyond the Jewish community, an estimated one in 400 people in the “general population” carry an inherited mutation that puts them at increased risk of certain cancers. Approximately 98% of the U.S. population is not Jewish so this test is a very poor indicator of hereditary cancer risk for the majority of Americans.
• Inherited mutations in many other genes are associated with increased cancer risk. The genes that cause Lynch syndrome, Cowden’s syndrome, and newly identified genes such as PALB2, CHEK2, BRIP1, ATM and many other gene mutations have also been linked to increased risk for breast, ovarian, or other cancers. Consumers who receive a negative 23andMe GHR Report may falsely believe that they do not carry an increased risk of hereditary cancer when they actually do. A list of genes associated with hereditary breast, ovarian, and related cancers is available on the FORCE website.
• There are comprehensive panel tests available through testing laboratories that can identify any of the mutations associated with increased cancer risk. A genetics expert can determine if genetic testing is warranted, assure that the appropriate test is ordered, and once testing has been completed, correctly interpret the results. Genetic counseling and testing can help women and men understand their risk for cancer based on family history and genetics, and make medical decisions about managing their cancer risk.
• Under the Affordable Care Act (ACA), most health insurers are required to cover BRCA testing at no cost for women who meet certain family history criteria. Outside of those covered by ACA, genetic testing for mutations associated with hereditary cancer is typically covered by health insurance for men and others. Financial assistance and reduced-cost options are available for people who do not have, or prefer not to utilize, health insurance.

HIKE FOR HEALTH 09/22/18: Registration opens 06/01/18

Don't you love the new bib? Thanks Tamalpa Runners!

SPOTLIGHT ON : Board Member Arbella Odishoo Parrot, PsyD

Recently Helaine Alon, ZBC Communication Coordinator, chatted with a ZBC Board Member about how she came to be involved with ZBC and why it was so important to her. 

According to Helaine, in a conversation with Arbella Parrot means you naturally latch on to her every word and get inspired by her sincerity and enthusiasm. A licensed clinical psychologist for eighteen years, Arbella joined the ZBC board a little over one year ago and has been an invaluable member of the organization ever since. This conversation with Arbella is the first of a Get to Know the ZBC Board series. You will be moved just reading about her experience of breast cancer and how she she became motivated to get engaged in the vision of a world with zero breast cancer.  You can read the full blog post here. 

Did you know? One surprising fact that you might not know about Arbella is that she is a first generation Assyrian American, a Christian minority group that originated in the Assyrian Empire, a major power in the ancient Middle East, which spanned across parts of northern Iraq, Syria, Turkey, and Iran. While most of the 2 – 4 million Assyrians live in those areas, many have fled due to conflict and live in different countries around the world, including about 100,000 in the United States today.