Is genetic counseling right for you?
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Does cancer run in your family?
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Were you diagnosed with cancer at a young age?
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When you heard about Angelina Jolie’s experience with BRCA1 genetic testing and her decision to have her breasts and ovaries removed to reduce her risk, did you wonder whether you or someone in your family should get tested?
If you answered yes to any of these questions, genetic counseling—and possibly genetic testing—can help you and your family.
Although many people have a family history of cancer, only 5 to 10 percent of cancers are due to an inherited susceptibility. Genetic counseling can help you learn more about hereditary risks for cancer, and how genetic testing may provide important information for you and your family.
Genetic counseling at MedStar Health
Our program provides a full range of services to help you and your family when inherited, cancer-related mutations are suspected. We offer:
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Expertise: We are the most experienced hereditary cancer team in the D.C. metro area—our doctors and researchers are nationally recognized, and our genetic counselors are certified by the American Board of Genetic Counseling. Such expertise is important, because:
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Hereditary cancer is a complex, rapidly evolving field—studies show that doctors who don’t specialize in the subject often order the wrong tests or don’t interpret them correctly.
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Most at-home genetic testing kits (direct-to-consumer, or DTC) don’t look for clinically important genes, and none come with the counseling that can ease anxiety, provide meaning and help guide care, including preventive steps.
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Research and Clinical Trials: We are leaders in local, national, and international research efforts to understand cancer risks associated with gene mutations and cancer family histories; evaluate genetic counseling approaches; help people make decisions about management after genetic testing; identify additional inherited mutations that can cause cancer; and to find better ways to detect, treat, and prevent hereditary cancers.
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Through Georgetown Lombardi Comprehensive Cancer Center’s Fisher Center for Hereditary Cancer and Clinical Genomics Research, the Lombardi Research Participant Registry, and the MedStar Georgetown Cancer Institute, we are able to provide you with information about many research opportunities. You may benefit by:
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Getting access to local and national clinical trials that test new approaches to genetic counseling, cancer screening, and cancer risk management
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Helping the next generation of your family
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Seamless Care: We work closely with MedStar Georgetown Cancer Institute cancer specialists covering all types of cancer. While those doctors know when to send us patients, we also encourage you to contact us. We work with doctors outside the network, too, sharing results and collaborating on management plans.
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Insurance Coverage for Genetic Testing and Counseling: Most insurance companies cover all or part of genetic counseling. For testing, we work with your insurer to get approval beforehand (pre-authorization).
Should I get genetic counseling for hereditary cancer risk?
Please contact us with any questions — we’d rather be in a position to determine you might not be a good candidate rather than miss the opportunity to provide help.
Generally speaking, these are the signs that cancer might run in your family:
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Confirmed history of a harmful alteration (mutation) in a cancer risk gene
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One or more individuals with cancer diagnosed before age 50, such as:
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Breast cancer in women: Triple negative breast cancer diagnosed before age 60 (these are breast cancers that are negative for estrogen and progesterone receptors and HER2/neu)
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Colon cancer
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Uterine or endometrial cancer
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Gastric cancer, especially diffuse type
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Pancreatic cancer
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Renal cancer
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Sarcoma of bone or muscle
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One or more individuals who have had any of these cancers:
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Ovarian, fallopian tube, or peritoneal cancer
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Male breast cancer
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Medullary thyroid cancer
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Sebaceous carcinoma
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Adrenocortical cancer
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Choroid plexus cancer
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More than one cancer in the same person, especially if the first one was diagnosed before age 50, such as:
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Breast and ovarian cancer
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Breast and thyroid cancer
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Colon and uterine cancer
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Melanomas
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One or more individuals with multiple colon polyps (adenomatous, hamartomatous, or juvenile)
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Individuals with the same or related cancers on the same side of the family, such as:
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Breast, ovarian, prostate, and/or pancreatic cancers
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Colon, uterine, ovarian, and/or stomach cancers
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Abnormal testing results from colon or uterine tumors
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These tests are called microsatellite instability, or MSI, and immunohistochemistry, or IHC
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Abnormal results may indicate an increased hereditary risk
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Jewish ancestry, especially with a personal or family history of breast, ovarian, or pancreatic cancer
What does genetic counseling for hereditary cancer risk involve?
Genetic counseling provides a full range of support for individuals concerned about potential hereditary risks of cancer. During your session, your certified genetic counselor will:
- Take a complete personal and family medical history—particularly for brothers, sisters, parents, children, grandparents, aunts, uncles, nieces, nephews, and first cousins—focusing on cancer diagnoses in the family and the age when family members were diagnosed
- Explain how harmful gene changes (mutations) may be passed down in families and contribute to cancer risk, along with other factors
- Discuss options for genetic testing, including the potential benefits, risks, and limitations of testing
- Assess the chance that cancer will develop at some point in your life, or your chance of developing a second (primary) cancer
- Create a personalized plan for cancer screening and risk reduction based on national guidelines and current research
- Review the likelihood that relatives may have an inherited cancer risk mutation
- Refer you to research and clinical trial opportunities
- Provide emotional support and referrals to support groups
- Review previous cancer genetic test results and identify possible new options for testing
Cancer and genetic testing
Testing for inherited mutations that are associated with increased cancer risks is a powerful tool, one that continues to improve all the time. We can now test for mutations in over 20 different genes with just one blood or saliva sample.
If you choose to have genetic testing, in most cases, you can provide a sample immediately following your initial genetic counseling session.
Some people who get counseling choose not to get testing. That is okay. We help you weigh the decision and encourage careful consideration—while you can get tested during your initial visit, you can also come back to do so.
Cancer and genetic testing: things to consider
We help you consider several factors when deciding whether to undergo genetic testing for cancer risk:
- Impact: Most people who get genetic testing cope very well with the results. You may be relieved and feel good about taking action to protect your health and become more informed. But sometimes coping with genetic test results can be challenging. We provide information and support resources to help meet your individual needs.
- Family: Obtaining information for family members is often a key reason for choosing to have genetic testing. But sometimes relationships can be strained by prospects of testing and by the results—not everyone wants to know this type of information.
- Uncertainty: Sometimes genetic testing fails to provide a definitive answer about cancer risk.
- This can happen when extensive testing is pursued and no mutation is found. This type of test result does not always rule out hereditary risks for cancer.
- Sometimes a gene change is found and the cancer risks that are associated with it are very unclear.
- Timing: The length of time to receive results varies depending on the type of test and the lab used. Sometimes results take several weeks to obtain.
- Cost: The cost of genetic testing varies widely depending on what tests are ordered, what lab is used, and whether you have insurance.
- Genetic Discrimination: The federal Affordable Care Act and the Genetic Information Nondiscrimination Act (GINA), as well as some state laws, provide many protections against employers and health insurers treating people differently based on genetic information.
If you do choose to get tested, we will help you to thoroughly understand the results, their meaning and their implications for you and your family.
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We will give you a detailed written report summarizing your genetic counseling session, the interpretation of any genetic testing results, the recommendations for your medical management, and implications for your relatives
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We will also make specific referrals for medical and other follow-ups, if needed
Hereditary cancer and cancer prevention
There are several steps you and your family can take to lower the risk of cancer. We craft an individualized set of recommendations based on your family history, risk level, and, if pursued, genetic testing results. We also help you weigh the options, which might include:
- Earlier and more frequent cancer screening than people at average risk, sometimes with specific tests
- Use of medications (for example, tamoxifen) to prevent cancer (called chemoprevention)
- Preventative surgery (risk-reducing or prophylactic procedures) to remove the breast(s), the colon, or the ovaries and fallopian tubes
- If appropriate, lifestyle changes such as changing your diet, limiting alcohol consumption, getting more exercise, or giving up smoking
If you have been newly diagnosed with cancer, genetic testing may provide information for your treatment planning, such as helping you make decisions about surgery.
Insurance coverage for genetic testing and counseling
Many insurance companies cover all or part of genetic counseling. For testing, we submit the necessary paperwork to the laboratory who will then work with your insurer to obtain approval beforehand (pre-authorization). We can tell you what your out-of-pocket costs for testing will be before you get tested. Of note, genetic testing may not be approved by certain Medicaid plans.
If you do not have any health insurance, you may be eligible to receive genetic testing at no charge, or at a reduced rate, provided you meet certain criteria.