UK HealthCast: Oncology Genetic Counseling at UK Markey Cancer Center

UK HealthCast is a podcast series featuring interviews with UK HealthCare experts on a variety of health-related topics.

Many people have heard of genetic testing, but fewer understand the role of genetic counseling. While testing can provide valuable information, oncology genetic counseling is a broader service that helps patients and families understand their risk for inherited cancer syndromes and make informed decisions about their care.

Terra Armstrong, a cancer genetic counseling supervisor at UK Markey Cancer Center, recently joined UK HealthCast to discuss the role of genetic counselors, the growth of the service at UK HealthCare and for whom genetic counseling services can make a difference.

What is genetic counseling?

Genetic counselors are healthcare providers who assess patients and families for hereditary conditions. In oncology, their focus is identifying inherited cancer syndromes that may increase a person's risk of developing certain cancers.

Understanding whether a cancer risk is inherited can change how patients and their family members are monitored and treated. For example, people with a hereditary cancer syndrome may need to begin cancer screenings at younger ages or undergo additional screening beyond what is recommended for the general population.

Genetic counseling is also highly personalized. Counselors review family history, explain how inherited cancer syndromes work and help patients understand what information may be relevant to their healthcare decisions.

Who should consider genetic counseling?

A cancer diagnosis is one reason to seek genetic counseling, but it is far from the only one. Many people without cancer may still benefit from an evaluation if they have concerns about their family history.

Several factors may suggest a hereditary cancer syndrome could be present:

• Close family members diagnosed with specific types of cancer before age 50. (Such as a maternal aunt diagnosed with breast cancer at age 50 or a father diagnosed with colon cancer in his 30s.)
• Rare cancers in the family, such as ovarian cancer, pancreatic cancer or male breast cancer.
• Multiple relatives on the same side of the family with similar cancers.
• A recommendation from a physician based on personal or family history.

Even when people are unsure whether their family history is concerning, a genetic counseling appointment can help clarify risks and determine whether any additional evaluation is needed.

“Ultimately, what I encourage patients to do is if they have any concern about their personal or family history in terms of inherited cancer syndromes, to make an appointment with us,” Armstrong said. “Because we can always talk with them about what our concerns are and hopefully alleviate them. If we need to do anything further or can assess what their risks are, then we can determine if there's anything else that needs to be done.”

What happens during a genetic counseling appointment?

The process often begins before you walk through the door. Patients are encouraged to gather information about relatives who have had cancer, including cancer types and ages at diagnosis. If family members have undergone genetic testing for hereditary cancer syndromes, those results can also be helpful.

The appointment typically lasts about 45 minutes and includes a detailed review of personal and family history. Genetic counselors educate patients about hereditary cancer syndromes, discuss individual risk factors and determine whether genetic testing may be appropriate.

If testing is recommended, the discussion may include:

• Which tests are appropriate
• How samples are collected
• Insurance coverage
• Possible outcomes of testing
• Genetic discrimination concerns and legal protections

If a patient chooses testing, the counseling team later reviews the results and explains what they mean for future screening, cancer prevention and family members. If a patient decides not to pursue testing, counselors can still provide personalized risk assessments and screening recommendations based on family history alone.

How genetic testing can influence care

One of the biggest benefits of genetic testing is the ability to personalize healthcare.

For people who have not been diagnosed with cancer, results may help determine when screening should begin and whether additional screening methods are needed. Someone with an inherited risk for breast cancer, for example, may be advised to start screening earlier or undergo breast MRI screening in addition to routine mammograms.

For patients already undergoing cancer treatment, genetic testing can sometimes affect treatment options. Certain hereditary cancer syndromes may make patients eligible for therapies such as PARP inhibitors or immunotherapy, depending on the type of cancer involved.

Addressing common concerns

Many patients arrive at genetic counseling appointments feeling overwhelmed or uncertain about the process. For that reason, counselors spend time assessing a patient's understanding and explaining what to expect.

Genetic counseling is designed to help patients make informed choices, not to pressure them into testing. Genetic testing is always optional, and some appointments end with education and risk assessment rather than testing.

Cost is one of the most common concerns. While genetic testing can be expensive, out-of-pocket costs have decreased significantly in recent years. Insurance coverage has expanded, particularly for patients who meet established criteria. Many laboratories also offer financial assistance programs and self-pay options that can make testing more affordable.

Another common concern involves genetic discrimination. Patients sometimes worry that genetic test results could affect employment or health insurance coverage. The federal Genetic Information Nondiscrimination Act provides protections related to most employers and health insurers. Genetic counselors also discuss the law's limitations and help patients understand other considerations, such as life insurance or long-term care insurance.

Is genetic counseling only about testing?

A key message for patients is that genetic counseling and genetic testing are not the same thing.
Genetic testing is one tool that may be discussed during a counseling appointment, but counseling focuses on understanding a patient's personal and family history, assessing risks and discussing available options. Some patients pursue testing, while others use the appointment to gain a better understanding of their situation and future screening needs.

Family members may also benefit from genetic counseling in certain situations. While testing a family member with cancer is often the most informative approach, that is not always possible. When necessary, unaffected relatives can sometimes undergo evaluation and testing to help clarify cancer risks within a family.
For patients and families concerned about inherited cancer risk, genetic counseling offers more than a test result. It provides expert guidance, individualized risk assessment and information that can help shape future healthcare decisions. 

Whether testing ultimately becomes part of the process or not, genetic counseling can help patients better understand their risks and the options available to them.