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Should I Get Tested for the Cancer Gene?

Knowledge is power, but sometimes knowledge can be scary, too. Many people who have a family member with cancer want to know if they’re at an increased risk of developing the disease. But they may also be anxious to find out—and that’s perfectly natural, says Catherine Fine, MS, LCGC, a certified genetic counselor with UNC REX Cancer Care. Her job is to help people understand their potential hereditary risk of cancer and use that information to make informed medical decisions. Often, making those decisions can turn anxiety into peace of mind.

Fine answered our questions about genetic counseling, whether you should consider being tested and what the process involves.

What happens in a cancer genetic counseling session?

I meet with individuals and families who have a personal history or a family history of cancer and are concerned that something hereditary led to those diagnoses. During our session, we review their medical history, particularly if they’ve had cancer themselves, and their family history. We look back four generations to determine whether we should be concerned if they have a hereditary predisposition to cancer.

Is cancer always hereditary?

No. It’s important to know that most cancers are not hereditary. In fact, only about 5 to 10 percent of diagnosed cancers are due to a hereditary predisposition. It’s true that all cancer is genetic, meaning cancer is a genetic process that happens in a cell that allows the cell to grow out of control. But most often, it’s not something we inherit.

What if I don’t know the entire health history of my family or I’m adopted?

Once a genetic counseling appointment has been scheduled, we will send you a packet of information outlining questions pertaining to your family history. This will give you time to investigate and find the answers. But it’s OK if you don’t know everything. We will do our best to use the information we have to determine if genetic testing for cancer makes sense.

What are some cancers that can be hereditary?

Most often, we see patients for breast, colon, ovarian, uterine, stomach and pancreatic cancers, though we can see patients for any type of cancer. We’re typically looking for the presence of certain hallmark features in a family, such as early age of diagnosis, multiple family members with the same cancer or certain combinations of cancers that occur together in a family. However, for some cancers, like ovarian, having only one family member with a diagnosis may warrant genetic testing because a higher percentage of ovarian cancer is associated with a hereditary predisposition.

Do I need a referral to see a genetic counselor?

No. If you have questions, you can see a genetic counselor. We see ourselves as information givers so people can make more informed choices. Using the information we gather allows us to do a risk assessment to determine whether genetic testing for cancer makes sense for you. If it does, we explain the process of testing, possible results and how you can use the results. We will also discuss insurance coverage. The good news is that many insurers cover most, if not all, of the cost of the test. However, they may require pre-authorization before beginning the process.

How is genetic testing for cancer done?

A blood test or a saliva sample is used for genetic testing. The sample is sent to a genetic testing lab, and test results may take one to four weeks to come back. There are several genes we look at, depending on what kind of cancer we’re concerned about. For example, you might have heard of the genes called BRCA1 and BRCA2. Having a mutation in one of these genes puts women at an increased risk for breast and ovarian cancer. Men with a mutation in one of these genes are at a slightly increased risk for breast cancer and an increased risk for prostate cancer.

So what should I do with my genetic testing results?

Genetic information is just that: information. It’s not necessarily good news or bad news—it’s just news. We all have mutations, many of which cause us no trouble. But if we have a mutation that causes concern, knowing about it can help us do something about it and hopefully help relieve anxiety.

For many of the genes we test, we can tell you your lifetime risks of certain cancers. Once we know your risk, we can help you take action to reduce it by screening for cancer at an earlier age, with better tools or more frequently.

How do I pay for genetic testing?

Genetic testing has become much more affordable now that most insurers are covering it, especially when a doctor or genetic counselor confirms there’s a need to test. The labs we use obtain pre-authorization with a patient’s insurance. This ensures the patient isn’t stuck with out-of-pocket expenses they weren’t expecting to pay. Also, many of the labs we use have various patient assistance programs to help people get tested even if they don’t have insurance.

Learn more about genetic counseling options with UNC REX Cancer Care in Wake County or UNC Cancer Care in Chapel Hill.

Catherine Fine, MS, LCGC, is a certified genetic counselor with UNC REX Cancer Care.