Nolan Alexander (Host): Welcome to UK HealthCast, a podcast presented by UK HealthCare. I'm your host, Nolan Alexander. And today, we're joined by Terra Armstrong, a licensed genetic counselor at the UK Markey Cancer Center. And today, we're talking about genetic counseling, what it is, who it can help, and how it can guide cancer care for patients and their families. Terra, thank you so much for joining us today. How are you?

Terra Armstrong: Thanks, Nolan. I'm doing well. Glad to be here.

Host: It's our pleasure. And I'm excited to discuss today with you. But to start out with, tell me a little bit more about your role at the UK Markey Cancer Center, and I'm curious what led you genetic counseling?

Terra Armstrong: Sure. So, I am currently the Cancer Genetic Counseling Supervisor at UK in the Markey Cancer Center. I've been in this particular role since 2024. So, I see patients, but I also manage our team of cancer genetic counselors. So, there's six of us now, which is really amazing. We were a team of two and then three, and slowly grew over time. So, I started at UK in 2017 as a senior genetic counselor, so I was full-time clinical and did that for many years until I stepped into this supervisor role.

So, in terms of what led me to genetic counseling, I learned about it first in my undergraduate school when I was taking a molecular genetics course. This profession came up, and I thought it was really interesting because it was part of patient care, but it was different than medical school or some of those other healthcare professions we hear about. So, I was able to do some research. And then, I was really lucky to do some shadowing and also internships with genetic counselors in Lexington and Louisville. So, that really helped solidify my interest in the field. And really, you know, what it came down to was wanting to help patients and families. And this was a really niche area that I found super interesting.

Host: Well, if I had taken molecular genetics class, I would get scared by it. But I'm glad that it led you to your passion, Terra.

Terra Armstrong: Thank you.

Host: So, I'm also curious, how would define a genetic counselor? So, like, what is a genetic counselor and what does cancer genetic counseling help people understand about their health?

Terra Armstrong: Genetic counselors are a healthcare profession. They're providers that assess patients and their families for hereditary syndromes. And, you know, at this point, there's genetic counselors that work in all different types of fields. So, oncology, of course, but then even things like neurology, ophthalmology, psychology. So, really, almost every aspect of healthcare is touched by genetics in some capacity.

And genetic counselors, what we do is we really help patients and their families learn what they could be at increased risk for. And specifically with cancer, we're trying to assess families for inherited cancer syndromes to better understand how we can manage them moving forward. So if we know that a patient and their family is at risk for a certain cancer type, maybe that impacts how we screen them, what ages we start at, and basically helps personalize their medical care over what we would just recommend for the general population.

Host: Who would you say should consider seeing a cancer genetic counselor?

Terra Armstrong: So, there's a lot of people who could probably benefit from seeing cancer genetic counselor, and they don't necessarily have to have a cancer diagnosis themselves. That's oftentimes where we start because they're the people who we're most concerned about, of course. But there are certain aspects or maybe red flags that we look for in terms of who a good candidate for counseling.

So, some things that patients could maybe think about or keep in mind is if have early-onset cancers in their family, maybe people who were diagnosed young, like below the age of 50. If they have rare cancers in their family, some examples would be things like ovarian cancer, pancreatic cancer, male breast cancer or anything, you know, maybe that's rare, they could consider genetic counseling. And then, if they have strong history, so multiple relatives on the same side of the family with similar cancers, or if their doctor's ever mentioned a concern for a hereditary cancer syndrome.

But ultimately, what I encourage patients to consider is if they have any concern about their personal or family history in terms of inherited cancer syndromes, to make an appointment with us, because we can always talk with them about what our concerns are and hopefully alleviate them, and maybe we need to do anything further, or we can assess, you know, what their risks are and determine if there's anything else that needs to be done.

Host: So if someone reaches out, what's next? What happens during the process of genetic counseling?

Terra Armstrong: Sure. So, I think of genetic counseling probably in three parts. That's a good way to think about it. So, part one, of course, is you have your appointment scheduled, and what we ask patients to prior to their visit is gather information about their family history. We usually ask a lot of questions about what cancers people may have had, how old they were when they were diagnosed, and try and really build out that family tree to look for patterns or clues.

We also ask patients to gather genetic test results from family members. So, there is little bit of work before the visit, which is sometimes different from other appointments patients may have. That's sort of, you know, pre-appointment work. Then, the actual genetic counseling appointment itself is, of course, with the genetic counselor. Usually, those appointments can be around 45 minutes. It's a little longer than a normal doctor's visit. But what we do is talk about that family history, clarify information, clarify misconceptions. We educate patients on basics of genetics and hereditary cancer syndromes. And then, we assess if they're appropriate candidates for genetic testing.

If patients are, then of course, we go through all that information about what tests to order, what we recommend, sample collection, insurance coverage. And then, we even talk about genetic discrimination. So, that appointment can be pretty information-heavy, but what we're doing is trying to make sure that we're getting the proper informed consent for the genetic testing and making sure patients know what they're going to learn and how it could impact them and their family members. So, that's sort of part two.

And then, part three is what happens next. So if a patient pursues genetic testing, we would follow up with the patient about their results, talk with them about any findings, what screenings we recommend for cancer, and what their family members should consider. If patients don't choose to pursue testing because it is completely optional, we would then do like a risk assessment for the patient and give them personalized screening recommendations based on their personal and family history at that time.

So, that's sort of how I think of the visit, maybe sort of three parts, but it's choose your own path. So, it depends on how the patient wants proceed as to what we wrap up with.

Host: So, Terra, in regards to that second part when you discussed genetic testing, how do see that influence a patient's care or treatment plan?

Terra Armstrong: With the genetic testing, it can definitely impact patients' care. In terms of patients who maybe don't have a cancer diagnosis, what the main benefit is determining what screenings we should be doing moving forward. So, for example, if a patient has an inherited risk for breast cancer, then maybe we're talking about starting breast cancer screening at an earlier age, increasing the amount of screening we're doing. So, instead of maybe just a mammogram once a year, also incorporate breast MRI, and then other options for risk reduction, whether that's surgery or medication or something like that.

Genetic testing can impact patients who have a cancer diagnosis, because it opens up the opportunity for sometimes different treatment options. So, it of course depends on the type of cancer a patient has, and we always encourage patients to talk with their oncologist about treatment plans.

But some genetic testing that identifies hereditary syndromes can qualify patients things like PARP inhibitors or immunotherapy. So, that can beneficial for patients who are actually undergoing treatment in addition to their screening once they are through their initial cancer treatment.

Host: I can imagine there are times that patients come and they're not confident about taking part in genetic testing. Maybe they come to you and they're overwhelmed, or they have a misunderstanding about exactly what it is. So, how do you work to smooth out those concerns and dispel any myths?

Terra Armstrong: It's really common actually for patients to come to us in terms of being overwhelmed or not sure exactly how they want to proceed, because genetic counseling is not something that people are super familiar with unless they've been in a situation where they've had to seek out that care. So, a lot of times when patients are coming to see us, we really try and assess their understanding of the visit when we're first meeting with them.

So, trying to find out if they've looked anything up, if their doctors told them anything, what their understanding is. So that way, we can help guide them in terms of what to expect. So, we set an agenda. We explain to them, you know, like I said, those kind of three parts of the visit so they know what's coming next, because it's not unusual patients to be unsure.

And in addition to the genetic testing component, patients may not feel comfortable pursuing genetic testing, but it's always optional, we make sure that we reinforce that because we're here as guide to help patients figure out what option is best for them and their family. And sometimes genetic counseling is just a conversation. There's no more that happens after that. So, that's something that I think I like to address pretty upfront with patients, is that we're here to help you and help you make an informed decision and work together. We're not here to tell you what to do what not to do. And, you know, that's something that is really important to us in terms of of genetic counseling, is giving patients the opportunity to make that choice.

Host: What are some of those common misconceptions that you hear in your office?

Terra Armstrong: Misconceptions or maybe major concerns that I think I hear often are usually around the cost of genetic testing and then also discrimination. So, those are two main things that we're always discussing with with patients and are probably one of the biggest things that we see cause patients to avoid having an appointment or even following through.

So in terms of cost, patients have an understandable perception that it's very expensive. Because historically, genetic testing, you know, we hear about it, costs people lots of money get done. But genetic testing is much more affordable for patients now, insurances are much more likely to cover it, especially patients meet criteria, which is what our job is to determine during the visit.

We also use laboratories that are patient-friendly and have financial assistance programs, and we work with patients in the laboratories to try and get genetic testing accomplished. These laboratories also have self-pay options that are, you know, for some patients, more affordable than what they have been past. So, try and tell providers and patients, "Don't let cost be a barrier to having appointment and learning more." And then, we can work with you to help try and get that covered in the easiest way possible." So, that's one major misconception or concern that we see.

The other is genetic discrimination and that is, again, very valid for many patients worried about. But there is a federal law called the Genetic Information Nondiscrimination Act. That law protects patients from genetic discrimination when it comes to most employers and health insurance. So, patients cannot be discriminated against no what their results show, again, for most and health insurance. And so, that's really important for us to communicate with because I think it is a valid of patients to think, "Could my job be on the line or could I lose my insurance?" But this federal law is protection against that. That law, you know, has its limitations. So, it doesn't cover protection from discrimination from other types of policies. So, we do talk with patients about getting things set up before testing, like life insurance, long-term disability, long-term care. But there is no discrimination, you know, at play for seeing a genetic counselor or having a genetic counseling appointment. So, we always encourage patients to come talk with us, and we can, you know, walk you through that information help figure out when is to test or who is best to test, and how do we get you set up to do that successfully.

Host: Wow, Terra, given us so much information today. And I didn't know all this. Just couple more questions here if we can. Should family also consider genetic counseling when a loved one has cancer?

Terra Armstrong: I would say it's always possible. So, sometimes testing for family members that are unaffected definitely possible. Like I said earlier, I think it's always preferred if we could test the patient in the family with cancer. That's concerning because they're the most informative person to test. But we do have situations where that's not always possible. They're either going through treatment or not feeling well, or they don't live close by, or whatever, is the case. And so, there are situations where we're testing family members of those with cancer. And so, I would say if that's, you know, a situation that you find yourself in, ask your doctor, reach out to us, and we're happy talk through that with you. But definitely a situation where we can see that happen.

Host: So, if listeners remember just one thing from today, what would you want it to be?

Terra Armstrong: It would probably just be reiterating that genetic counseling does not equal genetic testing necessarily. There can be many things that come up in a genetic counseling appointment that you don't need genetic testing to do to find and, you know, be helpful for patients.

So, it's not one or both. It's a full circle appointment where we assess the patient and their entire family and think about what's best for all involved. So, I think that's what I would like patients to know is that we're here to help and talk through all the options and all the possibilities, and it probably will be a lot of information, even just like today's podcast. But we're here to support patients and their families in whatever way they need, whether or not testing is part of that. It can be a helpful tool, but it's just one part of the visit.

Host: So Terra, receive that support, where can someone go if they want to learn more or get connected with genetic counseling services at UK?

Terra Armstrong: Definitely. We would love for people to reach out if they are interested. Our direct line is 859-323-2798. That goes to our counseling assistants. They can answer many of the patient's basic questions about genetic counseling. They schedule patients. We do not require a referral, but you can also talk with your doctor who can refer you to us. And we also have a email address that anyone can reach out to. It's cancergenetics@uky.edu.

Host: Awesome. Terra, thank you for your time today and you told us. We're walking away more informed, and we know how to be connected to you and others at UK Healthcare. Thank you again.

Terra Armstrong: Thank you so much.

Host: That was Terra Armstrong, licensed genetic counselor at UK Markey Cancer Center. I'm Nolan Alexander. And thanks for listening to UK HealthCast, a podcast from UK Healthcare.