Genetic Counseling for Breast Cancer
If you’re considering genetic testing, you may want to meet with a genetic counselor.
What is genetic counseling?
A genetic counselor is a specially trained medical professional who assesses people’s risk for a variety of inherited conditions, including birth defects, cancer, and other illnesses. They work in hospitals, cancer centers, genetic testing sites, and more.
Like other medical professionals, many genetic counselors must complete continuing education to maintain their certification and state license.
At your first meeting with a genetic counselor, you usually discuss:
your medical history
whether you’ve been diagnosed with breast cancer or other cancers
whether anyone on either side of your family has been diagnosed with cancer
Using this information, the genetic counselor can:
analyze your family history and disease inheritance patterns
advise you on the likelihood that a genetic condition runs in your family
explain why certain genetic mutations are linked to diseases like breast cancer
offer information on the benefits and risks of genetic testing
recommend a genetic test that make sense for you
If you decide to have genetic testing, a genetic counselor can:
help you understand the results
explain how the results may affect your family
discuss next steps that might be right for you
provide support and resources
What to bring to your first genetic counseling appointment
It’s important to make sure the genetic counselor gets a complete picture of your medical history and as much of your family’s medical history as possible. But it’s OK if you don’t have much, or even any, information about your relatives.
Here is the most important information to bring:
When you make your appointment for genetic counseling, it’s important to ask the office which records they require. That way you have some time to collect what is needed. It’s also possible that you’ll be asked to complete one or more questionnaires before your appointment or in the office before you meet with a counselor. These records will give the counselor a sense of your overall health and any reproductive history. If you’ve been diagnosed with cancer, you’ll want to include doctors’ notes, biopsy results, pathology reports, and treatment history.
As you are able, make a list of both sides of your family. Include your parents and grandparents, and if possible, grandparents’ siblings, great-grandparents, brothers and sisters (including half-siblings), children, aunts, uncles, nieces, nephews, and cousins. List the type of cancer each relative has been diagnosed with, their age when they were diagnosed, and the treatment outcomes. Note which relatives have died and include the cause of death — not just cancer — and how old they were when they died.
To create this list, you may wish to use an online tool, such as the Centers for Disease Control and Prevention’s (CDC) My Family Health Portrait or Sharsheret’s Complete Your Family Tree. The cancer genetics program you're working with also may have its own form or questionnaire.
If anyone in your family has had genetic testing, ask if you can take those lab reports to your genetic counseling appointment. If they don’t have their lab reports or aren’t comfortable sharing them with you, ask your relatives to share if they tested positive for any genetic mutations they might share with you. This information can help the counselor to make more informed testing recommendations.
You may have questions about genetic testing, including the process and how the results might inform your care. The genetic counselor is there to help walk you through the process, so you may want to consider taking a list of your concerns. Here are some common questions to ask your genetic counselor.
What to discuss with your genetic counselor
There’s a lot of information to cover during your first appointment with your genetic counselor. Here is what you can expect to discuss:
You and your genetic counselor can use the list you put together to build a family tree that lets you visualize any cancer diagnoses on both sides of your family. These family trees typically include cancer type, age at diagnosis, and treatment outcomes.
Your genetic counselor looks for any patterns in your medical history as well as your family’s medical history to see if there is evidence of an inherited mutation. Your counselor may use a risk-assessment tool to predict how likely it is for you to have a cancer-related mutation.
One of your genetic counselor’s responsibilities is to make sure you’re ready to find out if you have a genetic mutation linked to a higher risk of cancer. Your counselor may ask if you’re prepared to take steps after receiving the results, help you weigh the advantages and disadvantages of going through with genetic testing, and see how valuable genetic testing may be for you.
The type of genetic test you get depends on your family’s cancer history, whether any of your relatives have had genetic testing, your personal preferences, and, in some cases, your health insurance coverage.
What you discuss with your genetic counselor after you get your test results
In most cases, labs send genetic test results to the genetic counselor or doctor who ordered the test. Your doctor or counselor then shares the results with you. Your genetic counselor can help you understand your test results and give you guidance on what to do next. If you test positive for a gene mutation that increases your risk of breast cancer, your counselor may recommend you talk to your doctor about more frequent screenings, or screening using different technology, such as ultrasound or MRI, preventive surgery (such as removing the breasts or ovaries), or medicine to reduce your cancer risk.
Your counselor can also explain what it means if you test negative, receive an uncertain result, or have a variant of unknown significance. For example, if you test negative but have a strong family history of cancer, your counselor may recommend talking to your doctor about starting screening at an earlier age, extra screening, or other risk-reducing options.
Your genetic counselor also can help you decide how to let your family members know if you get a positive result and discuss how they might react. Your counselor can advise you on what your results might mean for your children if you have or are considering having them. You can also discuss what you might say to more distant relatives.
Learn more about genetic testing and family relationships.
Health insurance coverage for genetic counseling
Check with your health insurance plan to confirm whether it covers genetic counseling and what information you may need to provide for coverage of your appointments with the genetic counselor. Your genetic counselor’s office or doctor’s office also may be able to help. When you schedule your appointment, the office can give you the procedure code for genetic counseling so you can run it by your health insurance company.
Insurance coverage for genetic testing is separate from the fee for the genetic counseling visit.
— Last updated on December 5, 2024 at 5:27 PM