It is difficult enough to learn that you are positive for a BRCA mutation. How then do you go about sharing your test results with your immediate and extended family members? Check Your Genes is pleased to provide the secure, free Family Notification Service to help you notify your family members about your BRCA test results.
Family Notification Service
Through the Family Notification Service, you customize template letters to send via email or postal mail. If you are sending letters via email, all addresses are loaded into your own secure account. A copy of your test result can be uploaded to accompany the email as well. If you choose to send letters through postal mail, you may customize and then print your letters from the service.
To learn more or to start using the secure, free-of-charge Family Notification Service, click here.
“The Family Notification Service is fantastic! When patients have just received news of their mutation status, it can be overwhelming to face all the new management options AND contact at-risk family members. This service allows BRCA mutation carriers an efficient and versatile way to share crucial life-saving information. As a genetic counselor, I find it useful and I recommend it highly. When the tool was presented at the National Society of Genetic Counselors meeting, genetic counselors embraced it with enthusiasm.”
Karen M. Huelsman, MS, CGC
Certified Genetic Counselor
Frequently Asked Questions
There are many questions to be asked and decisions to be made if you have a family history of cancer, especially breast or ovarian cancer. We hope these Frequently Asked Questions will assist you with your search for answers and help you be more proactive in managing your own risks against cancer.
What is a BRCA1 or BRCA2 gene mutation?
BRCA1 and BRCA2 are two genes that were identified over a decade ago. They are classified as “tumor suppressor genes.” When BRCA1 and BRCA2 are functioning normally, they are protective against certain types of cancer, especially breast and ovarian cancer. Some individuals carry a mutation (a change or mistake) in either the BRCA1 or BRCA2 gene. When this is the case, they are at significantly increased risk for breast cancer (up to an 85% lifetime risk), ovarian cancer (16-45% risk), and certain other cancers (prostate, melanoma, pancreatic).
How do I know if genetic testing is right for me?
Find a local genetic counselor! Genetic counselors are specially trained health care providers located throughout the nation who can provide an expert analysis of your family history and determine the best genetic test for you or your family members. It is important to work with your health care providers to order testing when appropriate and to interpret the meaning and significance of genetic test results.
What is genetic testing and what does it tell me?
Genetic testing is a specific analysis test that uses multiple lab techniques to evaluate the BRCA1 and BRCA2 genes. Genetic testing for BRCA1/2 (or other specific hereditary cancer genes) will provide a personalized risk assessment determining the likelihood of developing cancer. The testing will predict cancer risks, but does not evaluate other genes (for example, muscular dystrophy, Alzheimer’s, etc.).
How is the test conducted?
Testing can be done on a blood sample or a cheek wash (buccal) sample. The cheek wash method involves swishing about a tablespoon of Scope in your mouth for 30 seconds and repeating 3 times, spitting the sample into a tall plastic tube. This captures cheek cells that contain your DNA for testing. Cheek wash or buccal sampling cannot be done if you have eaten or had anything to drink within the past 60 minutes. It is also not recommended for patients undergoing chemotherapy because of the diminished number of free cheek cells.
If I find out I carry a gene mutation, what do I do next?
There are many prevention and surveillance options to consider! An important first step is to work with your health care providers. In some cases, you may be able to seek comprehensive care with a multidisciplinary team focused on minimizing your cancer risks and maximizing your wellness outcomes! It is important to explore your surveillance (screening), chemoprevention (taking medication to decrease risks) and preventive surgery options.
I’m scared to find out. Why should I be tested?
There are lots of reasons for stress and anxiety surrounding the testing process. It is very helpful to discuss all of your questions and concerns with a qualified health care provider (such as a genetic counselor) prior to having testing. Every individual will take a different course of action on the basis of test results and each family should be assessed individually. The most important reason to test, though, is to optimize your health and to attempt to prevent cancer diagnoses in yourself and your family members.
If I carry a gene mutation, what are my medical treatment options?
There are many medical management options. If you have been diagnosed with cancer, the best plan is always to work closely with your health care team. If you have tested positive and not been diagnosed with cancer, surveillance options include self-breast exam, clinical breast exam, mammography, breast ultrasound, breast MRI and gynecologic ultrasound and CA-125 levels. Chemoprevention may include medications such as oral contraceptives and tamoxifen. Prophylactic (preventive) surgery options include mastectomy (with reconstruction) and salpingo-oophorectomy (having the ovaries removed).
I know I have the gene. Should other family members be tested?
Genetic testing should be offered to all of your family members. If you know the mutation is from your mom’s side, then your maternal relatives, siblings and children should be tested; if paternal, your paternal relatives, and all siblings and children, should be tested.
Is genetic testing covered by my insurance company?
Most likely. In some cases of need, specialized grant funding may be available.
It is typical for most programs to offer testing for those with a 10% or higher chance of mutation. If the full Comprehensive BRACAnalaysis is warranted, the cost is $3,340. For those with sufficient risk and clinical implications, the testing is usually covered by insurance. There could be out of pocket expenses such as a co-pay or deductible. The lab will generally let you know if the out of pocket cost is more than $375, a cut off they use.
For patients with Ashkenazi Jewish heritage, the MultiSite3 test for common heritage mutation is $575. Patients with very high risk may go onto fuller testing if indicated. For patients with a known BRCA1/2 mutation in the family, Genetic Counselors will usually order the Single Site Analysis for the one known mutation only. A thorough family history will generally confirm if anything beyond is needed.
Insurance coverage is quite good these days and even Medicare and Medicaid have testing policies. When a patient decides to move forward with testing, this can be done at the close of the Genetic Counseling session. Informed consent papers and billing pre-verification forms need to be signed.
Ask your genetic counselor or health care provider for assistance with other specific questions.
Can I lose my health insurance if I carry either gene mutation?
Both federal and state law protects against discrimination on the basis of a genetic test result. HIPAA, in place since 1997 and GINA, since 2009, are two legislative acts in place to support federal protection against genetic discrimination. For more information, please see www.nsgc.org.
Can I only inherit the breast cancer gene from my mother?
No, 50% of hereditary breast cancer is inherited from the father’s side of the family.
Are men at an increased risk of cancer if they have a BRCA 1 or BRCA2 mutation?
Men have increased risks for prostate cancer, pancreatic cancer and melanoma. In rare cases, male breast cancer may occur.
How can I help or support Check Your Genes?
There are numerous ways to get involved! We are always in need of volunteers, donors and sponsors and people who can help champion the cause. We also need everyone to help spread the word about hereditary breast and ovarian cancer. Knowledge is the best form of early detection: know your past…to improve your future!
Genetic Counseling Links
- National Society of Genetic Counselors (home)
- National Society of Genetic Counselors (find a counselor)
- Genetic Health
- Informed Medical Decisions (provides online or telephone access to genetic counselors if you cannot find a local expert). 1-800-975-4819 ext 102
- St. Elizabeth’s Comprehensive Hereditary Cancer Program (Edwood, KY). 859-301-3939.
- The Hereditary Cancer Program/Division of Human Genetics at Cincinnati Children’s Hospital Medical Center. 513-803-0750 or 800-344-2462, ext. 30750.
- Genetic Counseling at TriHealth Cancer Institute. 513-865-5578.
- Canadian Society of Genetic Counsellors (home)
- Canadian Society of Genetic Counsellors (find a counselor)
Organizations and Links for Support
- American Cancer Society
- American Society of Clinical Oncology
- National Cancer Institute
- National Ovarian Cancer Coalition
- MD Anderson Cancer Center
- Myriad Genetic Laboratories, Inc.
- Bright Pink
- Facing our Risk of Cancer Empowerd (FORCE)
- I Have Wings Breast Cancer Foundation
- Pink Ribbon Girls
- Young Survival Coalition
- The Mesothelioma Group
- American Childhood Cancer Society