Erin Winkler, MS, CGC
Certified Genetic Counselor
Frequently Asked Questions (FAQ)
- Why am I being referred for genetic counseling?
Your doctor or other health care provider may have suggested that you have an appointment in the Hereditary Cancer Program because something about your personal or family is somewhat suggestive of a hereditary cancer syndrome.
- What is a hereditary cancer syndrome?
A hereditary cancer syndrome refers to when there is a gene that is being passed through the family that causes a higher than normal risk of cancer. In families with hereditary cancer, it is common for people to be diagnosed at an earlier age (often before age 50), have multiple primary cancers or bilateral cancer (both sides), and for multiple family members to have the same type of cancers.
The most common hereditary cancers usually involve breast, ovarian, colon and endometrial (uterine) cancers, but almost any type of cancer can be hereditary.
- What is a genetic counselor?
A genetic counselor is a health care provider who has graduate training in medical genetics and counseling. Genetic counselors help people understand complex genetic information related to their family history. Genetic counselors can help you to make informed, personalized decisions about your genetic health by providing you with information related to your genetic risk for cancer.
- What happens at a genetic counseling appointment?
Typically, you will meet with a genetic counselor and an oncologist during this visit. The genetic counselor will review your personal and family history information and discuss the chance that you have a hereditary cancer syndrome. This appointment usually takes about an hour, and includes a discussion about how genes play a role in cancer, the specific genes that might be present in your family, the cancer risks associated with those genes, screening recommendations and risk reduction options for people at high risk for certain cancers, and genetic testing options. The oncologist will review the information, order testing (if desired), and/or make medical management recommendations.
- I’m not sure if I want to have genetic testing or not. Should I still come for genetic counseling?
If you want to have genetic testing for a hereditary cancer gene, this can usually be done at the same time as the appointment. However, having an appointment does not mean that you have to have genetic testing. This appointment can be helpful for people who don’t know if they want to have genetic testing or not, to learn more about hereditary cancers and genetic testing, including benefits and limitations of testing, which may help them decide what they would like to do.
- Why would I want to know if I have a high risk for cancer?
If you are found to have a hereditary cancer syndrome, your chances of developing certain types of cancer are much higher than normal. Because of these high risks, specialized cancer screening is usually recommended. There are also risk-reducing options available for certain cancers that can dramatically reduce your cancer risk. Genetic testing may also provide information for your family members.
- Will my insurance pay for genetic testing?
Most insurers, including Medicare and Medicaid, do cover genetic testing for hereditary cancers. Sometimes, the insurance company has criterion that needs to be met before testing is covered. This will be discussed by the genetic counselor at your appointment. Before any testing is run, the testing labs will typically check your insurance to determine if the testing is covered.
- What can I do to prepare for my appointment?
It is very helpful for the genetic counselor to have as much correct information as possible about your family’s medical history before your appointment. Spend some time talking to family members to find out as much as you can. The most important information about your family history would be:
- What type of cancer did your family member have?
- At what age were they first diagnosed?
- What is the current age or age of death for all relatives, including ones that did not have cancer?
Many times, people do not know the exact age that someone had cancer or their current age. If you have a general idea of how old they were, that is also helpful. For example, did you aunt have breast cancer in her 30s-40s, or in her 70s-80s?
It can also be helpful to write down any questions or concerns you may have, so you can be sure to get the most out of your appointment.