Although most cancers occur by chance, some families have a hereditary predisposition that increases the chance to develop cancer. Genetic testing for cancer risk is complex and rapidly evolving. Genetic counseling before and after testing is more important than ever. Partnering with a certified genetic counselor to learn about your risks and options can be empowering. It can help you and your family be proactive about managing your risks.
The Lombardi Comprehensive Cancer Center at MedStar Georgetown University Hospital has the region’s longest running genetic counseling program. We are also the only National Cancer Institute-designated Comprehensive Cancer Center in the Washington, D.C. area.
Who should consider genetic counseling and testing for hereditary risk?
Genetic counseling is available to women and men with a personal or family history of cancer who want to learn about risks, genetic testing options, and state-of-the-art cancer screening and risk-reduction options.
You should consider genetic counseling and testing if you have a personal and/or family history of:
- Breast, colon, or uterine cancer diagnosed at age 50 or younger
- Pancreatic, ovarian, or metastatic prostate cancer diagnosed at any age
- Ashkenazi Jewish ancestry and a personal/family history of one or more cancers above
- Multiple cancers in the same individual
- 10 or more colorectal polyps
- Cancer in several close relatives on the same side of your family, particularly breast or colon cancer
- A rare type of cancer (e.g., male breast cancer, sarcoma, diffuse type gastric cancer, medullary thyroid cancer, pheochromocytoma)
- A known cancer-predisposing genetic change already identified in your family
If you are unsure whether you are a good candidate for genetic counseling and/or testing, you can talk with your doctor or you may contact us directly.
What is genetic counseling?
Genetic counseling is an educational and support process for helping men and women learn about the chances of developing cancer based on hereditary risk factors, as well as strategies to reduce risks or detect cancers early.
What does genetic counseling for hereditary risk involve?
Genetic counseling is a comprehensive process of risk assessment, management, and support for individuals and families concerned about their risk of developing cancer. You will meet one-on-one with a certified genetic counselor for approximately one hour. Follow-up visits may be coordinated if needed.
The genetic counseling process will include:
- A detailed family history and personal risk factor assessment
- Options for genetic testing
- Collection of your saliva or blood if you opt for genetic testing
- Interpretation of genetic test results
- Individualized recommendations for cancer screening and options for risk reduction
- Information about your relatives’ risk for cancer
- Guidance and support for decision making throughout the genetic counseling process, including any necessary referrals
- A detailed individual summary letter for you and your referring doctor
Who provides genetic counseling?
Genetic counseling is provided by board-certified genetic counselors. Genetic counselors have a Master’s degree and provide state-of-the-art risk assessment, management guidelines, and supportive care to individuals and families.
Genetic counseling is recommended prior to and after any type of genetic testing. The choice about testing is yours – it is not a required part of genetic counseling.
How soon can I get an appointment?
Most patients typically wait no more than a few weeks for a genetic counseling appointment at MedStar Georgetown University Hospital. If you need an urgent appointment for genetic testing to make immediate decisions about treatment, we can typically accommodate you within one week.
What You Need to Know About Genetic Testing?
What does genetic testing involve?
After a discussion with your genetic counselor about the benefits and limitations of various genetic testing options, you can choose to have genetic testing. If so, you can provide a blood or saliva sample immediately following your genetic counseling session.
Your sample is sent to an outside genetic testing laboratory. The results are reported back to your genetic counselor. The genetic counselor will discuss with you what your results mean for you and your family members and make individualized recommendations for screening and risk reduction.
Is genetic testing a required part of genetic counseling?
No. Genetic testing is a personal decision, and some people who receive counseling choose not to get tested. We will help you weigh the decision and encourage careful consideration of several factors. Although you can get tested during your initial visit, you can also think about it and come back to do so.
How long does it take to get results from genetic testing?
It depends upon the specific test ordered, but most results are available within 3-4 weeks. If your results are needed sooner to inform an upcoming treatment decision, there may be options available to expedite your testing and receive results within 1-2 weeks. Your genetic counselor will review these options with you in detail.
What if I already tested negative for BRCA1 and BRCA2?
Harmful changes in several other genes have been associated with hereditary breast and ovarian cancer. If you previously received a negative or inconclusive BRCA1 or BRCA2 test result and were not tested for other genes associated with hereditary breast/ovarian cancer, and nobody in your family has tested positive for a BRCA1 or BRCA2 mutation, then you may want to consider additional genetic testing.
Individuals tested before 2006 may have had incomplete BRCA1/2 testing. In 2013, testing simultaneously for many genes besides BRCA1/2 became available. If you had negative/inconclusive testing prior to 2013 you may wish to consider updated testing. Genetic counseling is recommended prior to additional testing.
What if I had BRCA1/2 testing through 23andMe?
This direct-to-consumer company tests for some “Genetic Health Risks” including hereditary breast and ovarian cancer due to certain harmful changes (mutations) in the BRCA1 and BRCA2 genes. However, the testing is for only 3 harmful changes that are most common in people of Ashkenazi (central or Eastern European) Jewish descent.
There are more than a thousand other possible mutations in BRCA1 and BRCA2, as well as mutations in dozens of other cancer predisposition genes that are not a part of 23andMe’s testing.
If you received a positive result from 23andMe, please contact us for a genetic counseling appointment. We will coordinate confirmatory testing in another clinical laboratory. It is important this process occurs before you make any changes to your medical management.
If you tested negative, this result may not tell you anything conclusive about your risk for breast, ovarian, or other cancers. It is important to have genetic counseling and possibly further genetic testing if you are concerned about hereditary cancer risk. Please contact us for an appointment.
Some people obtain their “raw data” from direct-to-consumer companies and then send it to a third-party interpretation service. A recent study suggests that up to 40% of results obtained from this type of genetic testing may be incorrect . All potentially positive test results should be confirmed in a clinical lab. If you believe you may have a cancer-predisposing mutation based on this type of testing, please contact us for genetic counseling and confirmatory testing. More information about considerations in direct-to-consumer genetic testing are found in this short video.
What You Need to Know About Your Appointment?
What do I need to do to prepare for my appointment?
It is important to gather as much information as possible about your family’s health history prior to your appointment. This includes clarifying the specific type of cancer(s) your relatives had, what ages they were diagnosed, as well as the ages and causes of death of all individuals in your family. We will provide you with a questionnaire before your appointment to make this process as easy as possible. As you complete the form, we encourage you to speak with your family members and gather any relevant medical records. If any family members have already had genetic testing, it is extremely important to obtain a copy of the test report and send it to us in advance, or bring it with you to your visit.
What will we discuss during the visit?
A typical genetic counseling session begins with discussing your goals and expectations for the visit to ensure that all of your specific questions will be addressed over the course of the session. Your genetic counselor will review your medical history, your family history, and discuss the likelihood based on this information that your family may have a hereditary predisposition to cancer. If genetic testing is appropriate, your genetic counselor will review all aspects of the testing process. This will involve a discussion of the risks, benefits, and limitations of testing, as well as the possible results and the implications of each for you and your family members. You will have the opportunity to decide at the end of the visit if you would like to proceed with testing.
How long will the visit last?
Most visits typically last about an hour.
Will I have genetic testing?
Not necessarily. Based on your personal risk factors and family history, your genetic counselor will make a recommendation about whether genetic testing is likely to provide useful information for you or your family. In some cases, another family member may be a more informative person to test. Our goal is to make sure you can make a fully informed decision about whether genetic testing is right for you.
What happens after my appointment?
If you choose to proceed with genetic testing, you should expect to wait up to 3 or 4 weeks to receive results. Typically, your genetic counselor will call you and discuss the results with you by phone. Depending on the result, a follow up appointment may be recommended to discuss the information in more detail.
After the results have been disclosed to you, a copy of the report will be sent to your referring physician and will be placed directly in your patient record at MedStar Georgetown University Hospital. You will receive a detailed summary letter with information about genetic testing options or results, as well as individualized cancer risks and recommendations for you and your family members. This letter will also be placed in your medical record and will be sent your referring health care provider(s).
How do I schedule an appointment?
What if I need to cancel my appointment?
Please call 202-444-0023 as soon as possible if you need to cancel or reschedule your appointment. We kindly ask that you provide a minimum of 48 hours' notice so that another patient may benefit from your appointment slot.
Where Can I Find Information About the Lombardi Comprehensive Cancer Center?
Frequently Asked Questions
Do I need a referral? Will my insurance cover the genetic counseling visit?
Most insurance companies will cover all or part of the genetic counseling visit. However, the only way to ensure that your genetic counseling visit is covered by your insurance and to find whether a referral is needed is to call your insurance company in advance, and provide the CPT code for genetic counseling: 96040. If your insurer asks for other specific information, please call 202-444-0023 or send an email to GUH-LombardiGenetics@medstar.net.
Medicare does not currently cover genetic counseling visits. You will have to sign a financial responsibility form and to pay the genetic counseling fee when you check in for your appointment.
Other Private Insurances: you will not need a referral if you have a private insurance accepted at MedStar Georgetown University Hospital. To find out if your insurance is accepted at MedStar Georgetown University Hospital, please call 202-444-0023 or send an email to GUH-LombardiGenetics@medstar.net.
Medicaid: Please contact your insurance to ask whether you need a referral for your genetic counseling visit. Please call 202-444-0023 or send an email to GUH-LombardiGenetics@medstar.net if you have questions.
Self-Pay: You will be asked to sign a financial responsibility form and to pay the genetic counseling fee when you check-in for your appointment.
Will my insurance cover genetic testing?
There is no need to contact your insurance company before the visit to determine whether genetic testing is covered. The laboratory that performs the testing will contact your insurance company directly to determine coverage. If you are an appropriate candidate for genetic testing, most insurance companies will cover the majority of the cost of genetic testing. Most patients pay no more than $100 out of pocket.
If you do not have insurance or if your insurance company does not cover genetic testing, there are affordable out of pocket options and financial assistance options that your genetic counselor will discuss with you.
Do you do genetic testing for health conditions other than cancer?
No. Our discussion and genetic testing options will focus specifically on hereditary cancer risk. If you are concerned about another medical condition that may have a genetic basis, we encourage you to see a geneticist or genetic counselor in the appropriate specialty. To find other genetics providers in your area, we encourage you to visit www.findageneticcounselor.com.
Do you test children under 18?
We see only adult patients in our cancer genetic counseling practice. However, we work closely with Dr. Reem Saadeh-Haddad, a clinical geneticist, who sees children for diagnostic assessment, genetic counseling, and testing. To make an appointment with Dr. Saadeh-Haddad, please call 202-243-3491.
The majority of hereditary cancer predisposition syndromes present in adulthood, while a few syndromes (e.g., Familial Adenomatous Polyposis, Li Fraumeni syndrome) may occur in childhood or adolescence. Testing minor children is discouraged unless there are medical implications in childhood. Questions about testing your children will be discussed during your genetic counseling visit.
How am I protected against genetic discrimination?
The Affordable Care Act (ACA), the Genetic Information Nondiscrimination Act (GINA), as well as some state laws provide protections against employers and health insurers treating people unfairly based on genetic information. However, these laws do not include any protections related to life insurance, long term care insurance, or disability insurance.
To learn more about federal protections against genetic discrimination, we encourage you to visit http://www.ginahelp.org.
How do I get involved in research?
Your genetic counselor will let you know if you may be eligible for research studies based on your personal/family history or genetic testing results. These may include studies conducted at Georgetown or through other centers. Our genetic counselors are members of the Georgetown University Fisher Center for Hereditary Cancer and Clinical Genomics Research. The Fisher Center is involved in several research studies related to genetic counseling and testing.
Watch the video above to see Beth Peshkin, MS, CGC, a senior genetic counselor at Georgetown Lombardi Comprehensive Cancer Center, answer some of the most commonly asked genetic counseling questions by patients.