Welcome to the Yale Cancer Center Genetic Counseling Program newsletter. Generations is a bi-annual publication written to provide the latest information on cancer genetic counseling and supportive care concerns. We hope you find this issue of generations helpful and welcome your suggestions for future topics.
In this issue:
Sharing Risk with Family Members – Part 1
By Rachel Barnett, MS
Have you ever wondered how or when to share information about your hereditary risk for cancer with your children? Or, how to contact a relative with whom you have lost touch? In this two part series, we will address sharing genetic test results with family members. Genetic testing for diseases that do not develop until adulthood, such as most hereditary cancer syndromes, is not recommended before the age of 18. In the absence of genetic testing of minors, children of all ages may express curiosity as to why a parent is having a preventative surgery, the family history of cancer in general, or why a parent who may have just learned his/her test results is emotional. These are opportunities to broach the topic of hereditary cancer risk in a developmentally- and age-appropriate way with your child...
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Ellen Matloff attended and presented at the 5th Annual FORCE Conference this June in Orlando, FL. It was an amazing experience to be in a room with 450 men and women who carry BRCA mutations and some of the leading international researchers in this area. The conference offered everything from lectures about surveillance and risk-reducing surgeries for breast and ovarian cancer, body image and sexuality, how to tell your family members about the mutation in the family, to a ‘Show and Tell’ session in which women shared their bilateral mastectomy outcomes. This is a conference worth considering next year.
Erin Hofstatter, MD joined the Yale Cancer Center in August 2010 and specializes in breast cancer oncology and the long term management of patients with hereditary cancer syndromes. Dr. Hofstatter received her medical degree at the University of Connecticut School of Medicine and completed her internship and residency at Mount Auburn Hospital in MA before going on to do her clinical fellowship in hematology/oncology at the Beth Israel Deaconess in Boston, MA. She is an active member of the Cancer Genetic Counseling Program and is available to follow our patients. Welcome Dr. Hofstatter!
In the News
Direct-to-consumer (DTC) genetic testing has received a lot of press in the past year. DTC testing, often available to consumers via on-line companies, performs genetic testing on a saliva or cheek brush sample that consumers take themselves and send in through the mail. This testing often ‘estimates risk’ for conditions such as prostate cancer and heart disease based on a series of genetic changes. The reliability of such testing and the interpretation of these results are being investigated by the FDA . It is important to note that the validity of genetic testing through approved clinical laboratories is not under question.
Myriad Patent Ruling
The American Civil Liberties Union (ACLU), on behalf of several medical organizations, clinicians, and individual patients, filed a lawsuit against Myriad Genetics Inc. charging that patents on the BRCA1 and BRCA2 genes are unconstitutional and invalid. On March 29, 2010, U.S. District Court Judge Robert Sweet ruled against Myriad Genetics Inc. saying that the patents were “improperly granted” because they involved a “law of nature.” Myriad is appealing this.
Pink Picnic at BJ's
Join us for inspirational guest speakers, a complimentary luncheon and special gifts.
Date: Wednesday, Oct. 6, 2010 at 11:45 A.M.
Location: Your local BJ’s at 1046 N. Colony Rd., Wallingford
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Occult ovarian cancers identified at the time of prophylactic removal of the ovaries and fallopian tubes
Breast Cancer Res Treat. 2010 Feb 24.
This international study found that a small percentage (~2.5%) of healthy, asymptomatic BRCA+ women having prophylactic removal of their ovaries and fallopian tubes were diagnosed with ovarian or fallopian tube cancers at the time of their surgeries. Those women who were diagnosed with ovarian cancer were less likely to have used birth control pills, more likely to smoke, and were older at the time of surgery (51.7 years vs. 46.6 years) than women who were ovarian cancer-free upon prophylactic surgery. The majority of these cancers occurred in BRCA1 carriers. Cancers diagnosed at the time of prophylactic surgery were more likely to be early stage than the other ovarian cancers among BRCA+ women. Despite published recommendations, a review of the available pathology reports showed that the ovaries and fallopian tubes were completely examined in only ~60% of cases but this was more likely to occur at major genetics referral centers than non-referral centers (75% vs. 30%). Therefore, it is recommend that pathologists be made aware of a patient’s BRCA+ status and the guideline that these samples be carefully and completely examined. A special thank you to all of our patients who completed questionnaires, which contributed to this important study.
Update on the Study of Tamoxifen and Raloxifene (STAR) Trial: Preventing Breast Cancer
Cancer Prev Res 2010 3(6):696-706.
This article reports updated, follow-up data from the Study of Tamoxifen and Raloxifene (STAR) Trial, which followed >19,000 women at increased risk for breast cancer who were randomly assigned to take either raloxifene (Evista) or tamoxifen. These data show that raloxifene maintains much of the benefit of tamoxifen in terms of the reduction in risk of both invasive and non-invasive breast cancer with significantly fewer side effects (including fewer cases of blood clots, uterine cancer, and cataracts). This update, along with existing data, confirm that the benefits of both tamoxifen and raloxifene (in terms of breast cancer risk reduction) outweigh the risks (in terms of side effects) making both medications good options for women at increased risk for breast cancer. The choice between the two medications should be based on personal preference and individual risk factors.
Errors in Delivery of Cancer Genetics Services: Implications for Practice
Connecticut Medicine 2010 74(7): 413-423.
In this publication, together with colleagues from across the United States, Yale Genetic Counseling reports a series of 21 cases illustrating negative outcomes of cancer genetic testing performed without counseling by a qualified cancer genetics provider. Three major patterns emerged from analysis of these cases: 1) Wrong genetic test ordered, 2) Genetic test results misinterpreted, and 3) Inadequate genetic counseling. Negative outcomes included unnecessary preventative surgeries, unnecessary testing, psychosocial distress, and false reassurance resulting in inappropriate medical management. Based on these cases and the complexities of cancer genetic counseling and testing, we conclude that it may be unrealistic to expect all clinicians to provide these services and recommend that patients be referred to a certified genetic counselor prior to genetic testing.
Happy Autumn to all of you as we welcome a new school year and many new updates in Cancer Genetics! We are pleased to welcome Dr. Erin Hofstatter to Yale Cancer Center and as the team oncologist for Yale Cancer Genetic Counseling. As you will read inside this issue, Dr. Hofstatter has an impressive academic and clinical background and specializes in patients at high-risk. She is available to speak with you about medications that may reduce your risk of developing cancer (chemoprevention) and will be working with us to manage your care. Please enjoy reading about our newest team member, and of the many updates in Cancer Genetics in this issue of our newsletter.
Karina L. Brierley, MS
Rachel E. Barnett, MS
Danielle Campfield, MS
Ellen T. Matloff, MS
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Stories of Survivorship from Yale Cancer Center
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My Family History
Researching your family history is an important first step in discovering your own personal health history. To learn how to get started and find online tools to help with genealogy, please go to
My Family History >>
This website is published by the Oncofertility Consortium, a nationwide initiative dedicated to providing improved fertility preservation options for people diagnosed with cancer who must undergo treatments that threaten their fertility. The website discusses broad options for fertility preservation though informative Q & As, animations, and videos. Since every individual experiences cancer treatment differently, the information is meant to be used as a guide for discussions with your doctor before cancer treatment begins.
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The National Lesbian, Gay, Bisexual & Transgender (LGBT) Cancer Network
The National LGBT Cancer Network is the first program in the country to address the needs of all LGBT people with cancer and those at risk. The main goal of the program is to educate the LGBT community about increased cancer risk and the importance of screening and early detection.
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Veronica Brett is a new luxury collection of swimwear designed especially for breast cancer survivors and women who have had risk-reducing mastectomies. As a BRCA mutation carrier, designer and founder Patrica Brett was inspired by the women in her own family to create fashionable, designer-level options for life post-surgery.
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The sentiment of The Hope Chest is to ensure that genetic counseling, and the hope of early detection, risk reduction, prevention, and cutting-edge research, will be passed on to the next generation.
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Ellen Matloff, MS
Allen Bale, MD
Counselors and Contributing
Director, Public Affairs and Marketing
Yale Cancer Center Genetic
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Yale Cancer Center's communications are written to inform the public and the Center's friends, volunteers, donors, and staff on current items of interest at Yale Cancer Center. All inquiries should be addressed to Renee Gaudette, Director of Public Affairs and Marketing, 157 Church Street, New Haven, CT 06510-2100.