In This Issue...
Sharing Genetic Test Results with Adult Family Members
The results from your genetic testing have an impact on your family, regardless of whether the results detected a mutation, were uninformative, or demonstrated that you do not carry the mutation identified in your family. While there is no legal obligation to share the results from your test with relatives, you may feel ethically or morally responsible for sharing test results that could have a significant impact on the health and well-being of your family members. Your healthcare provider cannot assume this role. It is generally accepted that the individual being tested has the responsibility to disseminate the information within their own family. However, this can be complicated by family dynamics, individual beliefs, and the physical location of your relatives.
It should never be assumed what your relatives will want to know. All family members should have equal access to the information from genetic testing, regardless of how close or distant you are to that relative. Even if you are not interested in sharing your own genetic status, family members should be notified that there is some important medical information that is available to them. It is not your job to act as gatekeeper of the family genetic results.
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New Team Members
We are very pleased to announce the addition of two new members to our program team. Nicole Edwards accepted the position of Office Manager in August 2011. Nicole has worked at Yale for many years, and most recently held a position in the Office of the Dean. Her wonderful organizational and administrative skills, combined with her warm, caring, and welcoming demeanor make Nicole a perfect fit for this position.
Justin Leighton, MS, CGC joined us as our 5th full-time Cancer Genetic Counselor in January 2012. Justin successfully completed our competitive Kurzrok Cancer Summer Fellowship in 2009 and he has since worked as a Genetic Counselor at The Cancer Institute of New Jersey. We are very excited to have Justin back and know that his strong work ethic and drive will make him a wonderful addition to our counseling team.
The Take Charge Clinic
Know it. Face it. Change it.
We are excited to announce the launch of a new concept, multi-disciplinary clinic that will bring together the expertise of Genetic Counseling & Risk Assessment, Breast Oncology, and Gynecologic Oncology in one coordinated Team. Each patient will be seen for risk assessment and then a Personalized Passport will be created for that patient that will guide her to our experts in cancer surveillance, chemoprevention, sexuality, and menopause based on her specific risks, age, needs and personal and family history. Look for more information in our Fall 2012 Newsletter after the formal launch of the program, or call us at (203) 764-RISK (7475) for more information.
New Outreach Clinics
We are pleased to announce the opening of Yale Cancer Genetic Counseling Clinics at The Center for Cancer Care at Griffin Hospital in Derby and at the Norma F. Pfriem Cancer Institute in Trumbull. A certified genetic counselor from our program will staff each monthly clinic. To make an appointment at either clinic, please call our main phone number (203) 764-8400.
Share your story through the ACLU's public campaign, Take Back My GenesIn 2009, 20 professional medical associations, geneticists, breast cancer and women's health groups, and patients filed a lawsuit charging that patents on two human genes associated with hereditary breast and ovarian cancer (BRCA1 and BRCA2) are invalid and unconstitutional. The Supreme Court is now hearing an appeal on the case.
Share Now >>
Expanded Criteria for Hereditary Breast and Ovarian Cancer Syndrome take Triple Negative Breast Cancers and Pancreatic Cancer into Account
Triple Negative Breast Cancers (TNBC) are cancers that are found to be estrogen, progesterone, and HER2 receptor negative. Women with BRCA1 mutations, associated with hereditary breast and ovarian cancer syndrome, have a higher likelihood of developing a TNBC than other breast cancer patients. Several studies have examined the percentage of women with TNBC that are found to carry BRCA mutations. The findings range from 11-38% depending on the population studied (1-4).
In 2011, researchers found that 19.5% of women with a TNBC diagnosis carried a BRCA mutation (1). The women in the study had varying ages of diagnosis and family histories of cancer. The majority of women in the study had never been offered genetic counseling. Furthermore, 64% of women found to carry a mutation had no close relatives with breast or ovarian cancer. Although this study looked at a small number of women, the researchers concluded that the diagnosis of a TNBC should prompt the consideration of genetic counseling.
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Sexuality, Intimacy, and Menopause Concerns
On October 13, 2011, Elena Ratner, MD, Assistant Professor of Obstetrics, Gynecology & Reproductive Sciences at Yale School of Medicine, presented information about the Sexuality, Intimacy, and Menopause (SIMS) Clinic at Smilow Cancer Hospital as part of our periodic discussion groups for women who carry a BRCA mutation. She reviewed sexual side effects of cancer treatment and menopausal symptoms and options for addressing them, particularly for women who are facing these symptoms as a result of cancer therapy or prophylactic surgery. For more information and resources regarding sexual functioning for women after cancer or prophylactic surgery, please download our fact sheet.
Fact Sheet >> (PDF)
To schedule an appointment with the SIMS clinic, please call
Would you Drive a Mile to Save a Life?
American Cancer Society's Road to Recovery program
Every day in Connecticut there are people battling cancer, and sometimes the biggest challenge in cancer treatment is getting there. A committed group of volunteer drivers provide many of these rides through the American Cancer Society's Road to Recovery program. Currently, requests for transportation assistance outnumber the available drivers, leaving many without the rides they need.
The Society is currently seeking volunteers from Middlesex, New Haven and New London counties to drive cancer patients to their treatment appointments. If you have a car, a safe driving record, and even one or two hours once a month, you can make a real difference in someone's life by becoming a driver. The program is flexible and matches drivers' availability with the patients' transportation needs.
For more information, or to volunteer as a Road to Recovery driver, contact Heather Druan, Community Relationship Manager of the American Cancer Society at 203-379-4832.
Learn More >>
We are writing this newsletter during a very spring-like period in the middle of winter. By the time this reaches you, the real spring will have arrived! As you will read in this issue of Generations, our program has undergone significant changes since our last newsletter. We have two new outreach clinics, more space, more staff members, and are opening a brand new type of clinic --- all in an attempt to serve you and your families more effectively. You'll also read about the great strides in Cancer Genetics that are keeping us so busy!
We hope this new season finds you and your families healthy and well, and that you'll enjoy reading about the many positive changes in our program and in the field.
Karina L. Brierley, MS, CGC
Rachel E. Barnett, MS, CGC
Danielle Bonadies, MS, CGC
Justin Leighton, MS, CGC
Ellen T. Matloff, MS, CGC
Email us your suggestions >>
Stories of Survivorship from Yale Cancer Center
Margaret: Genetic Testing >>
David: Genetic Testing >>
Karen: Genetic Testing >>
The Pink Daisy Project is a non-profit organization started by a young breast cancer survivor who wanted to "pay it forward" for all of the help that she received during her treatment. The organization provides assistance to women with breast cancer with meals, groceries, housecleaning, and other needs. Preference is given to women under age 45, single mothers, and underinsured women.
Learn More >>
This non-profit foundation promotes education, awareness, and research for pancreatic cancer. The FAQ section has easy-to-understand information about a pancreatic cancer diagnosis and treatment. The site also includes survivors' stories and links to pancreatic cancer research registries.
Learn More >>
This organization strives to provide education and raise awareness about colon cancer through "crazy projects" including the Colossal Colon (a 40-ft long 4-ft tall model of the human colon) and a yearly "Colondar" (a calendar featuring young colon cancer survivors tastefully showing off their scars). They also have a support forum and stories from young colon cancer survivors.
Please Make a Donation
to Help Support
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, CGC
Danielle C. Bonadies, MS, CGC
Rachel Barnett, MS, CGC
Senior Genetic Counselor
Karina Brierley, MS, CGC
Senior Genetic Counselor
Justin Leighton, MC, CGC
Allen Bale, MD
Erin Hofstatter, MD
Director, Public Affairs and Marketing
Yale Cancer Center Genetic
55 Church Street, Suite 402
New Haven, CT 06510
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, 100 Church Street South, Suite 160, New Haven Connecticut 06510.