Genetics contribute to your risk of developing cancer. Sometimes cancer can run in families when mutations (harmful changes) in genes are passed down through generations. These changes might put you at risk for cancer.
At University of Missouri Health Care’s Ellis Fischel Cancer Center, we work with our patients to provide a cancer risk assessment to inform you about your risk of developing cancers.
The Ellis Fischel difference
At Ellis Fischel, our physicians and genetic counselors are here to provide you with the most advanced treatment, care, and up-to-date genetic testing options. About five to 10 percent of cancers are inherited, so we want to provide you with your cancer risk assessment and determine if cancer in the family is likely hereditary, familial or sporadic (happened by chance). With our expertise, we can then personalize your cancer treatment to offer you the most advanced care available using innovative and leading-edge treatment plans such as immunotherapy or targeted therapy.
Who should have a genetic cancer risk assessment?
When individuals choose to meet with a genetic counselor and undergo genetic testing, a wide range of cancer predisposition genes can be tested. Some individuals might choose to have an evaluation done based purely on their family history. The National Comprehensive Cancer Network recommends people who have been diagnosed with breast cancer, ovarian cancer, pancreatic cancer or metastatic prostate cancer should undergo genetic counseling and testing. Individuals with other cancer types such as colon, uterine, thyroid kidney and sarcoma might also benefit from genetic counseling and be eligible for genetic testing. Our genetic counselors are specially trained to evaluate patients to determine if further evaluation is needed based on their personal medical and family history.
Preparing for an appointment
You should anticipate an informative and thoughtful conversation that often lasts one to two hours. Your genetic counselor will:
- Inquire about your family health history and draw a family tree.
- Discuss the reason for the referral.
- Talk about decisions that may need to be made.
- Help you understand what tests are available, what those tests may show and provide guidance to help you decide whether testing is something you would like to pursue.
Not only are you welcome to bring someone with you — whether a spouse, a family member or a friend – it is encouraged. It’s always helpful to have someone else who can listen, take notes and ask questions you might not think of. In addition, please bring:
- Information about the family history of cancer, tumors, and/or polyps, and age of onset of the cancer. We ask questions about family members from three generations (siblings, children, parents, aunts/uncles, nieces/nephews, grandparents and may include cousins, great-grandparents, great-aunts and great-uncles).
- Copies of any genetic test results from previous testing in you or relatives.
- Other medical records you would like reviewed as part of your cancer genetic counseling session.
Frequently Asked Questions
What is a genetic counselor?
Genetic counselors have advanced training in medical genetics and counseling to guide and support patients seeking more information about how inherited diseases and conditions might affect them or their families, and to interpret genetic test results.
Who needs genetic testing?
You already see a doctor, nurse practitioner or other provider for your health care. So, you might wonder, what additional help can a genetic counselor provide? Because genetic counselors receive specialized training in genetics and counseling, they can be an important part of your health care team. Think of genetic counseling as a conversation. Your input – your goals, your feelings, your concerns – are all very important. Using a unique set of skills, a genetic counselor helps you understand your genetic risks, determines if genetic testing might be right for you – and if so, which tests – and explains what results might mean for you and your family. Just as valuable, a genetic counselor helps you cope with your emotions as you process information.
How is genetic testing done?
Genetic testing is a simple process. Usually it can be done by collecting a blood or saliva sample. The sample is sent to a laboratory which runs the tests. Results typically are available within a few weeks.
What are the risks of genetic testing?
Genetic testing is not anticipated to cause any significant health risks. It is typically a blood draw or saliva spit sample.
How much does it cost?
Health insurance often pays for genetic counseling. Genetic testing (cancer gene panel) typically costs from $250 to $400 and is often covered by insurance. In many cases, health insurance covers genetic testing when it is recommended by a genetic counselor or doctor. A benefits investigation is typically run by the testing laboratory to determine coverage for a genetic test from a health insurance company. Different companies have different policies. Some cover certain tests but not others. As with most healthcare services, you might need to pay for some of the cost. If the cost is too high, you might be notified before testing is completed and can cancel testing at no charge to you.
What happens if I test positive?
Genetic testing can help identify if you inherited a gene mutation that caused your cancer and, if so, this information could help doctors treat you more effectively. Researchers have found some inherited types of cancer don’t respond to standard treatments. In some cases those cancers respond very well to other treatments. Knowing if your cancer is inherited can also help determine who else in your family is at risk, who else is the family would benefit from genetic counseling and testing, and steps they can take to avoid getting cancer. Learn more.
Can my insurance company discriminate against me based on my results?
The Genetic Information Nondiscrimination Act of 2008 (GINA) protects you and your genetic information from being used (in a company with 15 or more employees) in employment decisions and when determining your eligibility for medical insurance. This helps ensure that you can pursue genetic testing and medical care as well as participate in clinical research without fear of having that information used against you or your family members. Be aware that GINA does not protect you against discrimination in the purchase of life, disability or long-term care insurance. Learn more about GINA and protection against genetic discrimination.
Do I need to have genetic testing if I come for a genetic counseling appointment?
No, genetic testing is always optional. If you are considering genetic testing or are unsure if you would like to be tested, a genetic counselor can help guide you, explaining what genetic tests you might consider and what information those results will – and won’t – provide. At the appointment, you can choose whether or not you would like to proceed with testing.
Should I just use a direct-to-consumer at-home test?
There are several different ways to get genetic testing. Genetic tests you can order at home without a healthcare provider aren’t regulated like genetic tests that are ordered by a genetic counselor or doctor, they may not provide the information you are looking for and often there is no guidance about how to interpret the results. Learn more about the difference between physician- or genetic counselor-ordered genetic testing and direct-to-consumer at-home testing.
How can my condition be genetic (hereditary) if no one else in my family has it?
There are different ways you can inherit a genetic variant that can cause a disease or condition. Because of the way genetics works, it is possible for you to have a new genetic mutation that neither of your biological parents have, although this is rare. It is also possible to inherit a condition that no one else in your family seems to have. Others in your family may have the same mutation and eventually develop the condition, or some may never develop the condition due to environmental and other factors. In other cases, people in your family may be carriers of a condition – meaning they can pass it to their children without ever showing signs of it.
Can genetic counseling help me if I don’t know anything about my family history?
Yes. While family history is helpful, there are a number of ways genetic counseling can help you even if you don’t know anything about it. If you’ve been diagnosed with cancer under the age of 50, or if it is a rare type of cancer, genetic counseling can help you decide whether genetic testing might be beneficial.
Meet our genetic counselors
Suzanne Stilwell, MS, CGC
Certified genetic counselor
Suzanne Stilwell, MS, CGC, is a certified genetic counselor for Ellis Fischel Cancer Center. She works with patients to provide education about their cancer risk, determine their chance of having a hereditary cancer gene, and understand their genetic testing options. She also discusses implications for family members based on the test results and family history so that family members can also benefit from a risk assessment. Suzanne provides patients and their family members personalized care and assistance through shared decision-making. She earned her master’s degree at University of Wisconsin-Madison and is board certified by the American Board of Genetic Counseling. She has been working in the field of cancer genetics for more than 20 years.
Stephen White, MS, CGC
Certified genetic counselor
Stephen White, MS, CGC, is a certified genetic counselor for Ellis Fischel Cancer Center. He works with patients to identify their familial cancer risk and can help coordinate genetic testing if requested by the patient and his/her physician. Stephen provides personalized care and assistance through shared decision-making. He earned his master of science in genetic counseling at the University of South Carolina School of Medicine. He is board certified by the American Board of Genetic Counseling. Stephen’s interests include hereditary predisposition syndromes for cancers, tumors and polyps.