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Genetic Counseling at UK Markey Cancer Center · UK HealthCast

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  Nolan Alexander (Host): Welcome to UK HealthCast, a podcast
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  presented by UK HealthCare.
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  I'm your host, Nolan Alexander.
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  And today, we're joined by Terra Armstrong, a licensed genetic counselor
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  at the UK Markey Cancer Center.
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  And today, we're talking about genetic counseling, what it is, who it can
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  help, and how it can guide cancer care for patients and their families.
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  Terra, thank you so much for joining us today.
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  How are you?
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  Terra Armstrong: Thanks, Nolan.
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  I'm doing well.
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  Glad to be here.
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  Host: It's our pleasure.
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  And I'm excited to discuss today with you.
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  But to start out with, tell me a little bit more about your role at the UK
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  Markey Cancer Center, and I'm curious what led you genetic counseling?
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  Terra Armstrong: Sure.
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  So, I am currently the Cancer Genetic Counseling Supervisor at
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  UK in the Markey Cancer Center.
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  I've been in this particular role since 2024.
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  So, I see patients, but I also manage our team of cancer genetic counselors.
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  So, there's six of us now, which is really amazing.
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  We were a team of two and then three, and slowly grew over time.
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  So, I started at UK in 2017 as a senior genetic counselor, so I was full-time
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  clinical and did that for many years until I stepped into this supervisor role.
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  So, in terms of what led me to genetic counseling, I learned about it first
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  in my undergraduate school when I was taking a molecular genetics course.
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  This profession came up, and I thought it was really interesting because it was
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  part of patient care, but it was different than medical school or some of those other
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  healthcare professions we hear about.
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  So, I was able to do some research.
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  And then, I was really lucky to do some shadowing and also
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  internships with genetic counselors in Lexington and Louisville.
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  So, that really helped solidify my interest in the field.
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  And really, you know, what it came down to was wanting to help patients and families.
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  And this was a really niche area that I found super interesting.
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  Host: Well,
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  Nolan Alexander (Host): if I
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  Host: had taken molecular genetics class, I would get scared by it.
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  But I'm glad that it led you to your passion, Terra.
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  Terra Armstrong: Thank you.
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  Host: So, I'm also curious, how would define a genetic
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  Nolan Alexander (Host): counselor?
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  Host: So, like, what is a genetic counselor and what does cancer
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  genetic counseling help people understand about their health?
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  Terra Armstrong: Genetic counselors are a healthcare profession.
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  They're providers that assess patients and their families for hereditary syndromes.
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  And, you know, at this point, there's genetic counselors that work
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  in all different types of fields.
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  So, oncology, of course, but then even things like neurology,
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  ophthalmology, psychology.
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  So, really, almost every aspect of healthcare is touched by
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  genetics in some capacity.
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  And genetic counselors, what we do is we really help patients and
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  their families learn what they could be at increased risk for.
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  And specifically with cancer, we're trying to assess families for inherited
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  cancer syndromes to better understand how we can manage them moving forward.
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  So if we know that a patient and their family is at risk for a certain
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  cancer type, maybe that impacts how we screen them, what ages we start at,
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  and basically helps personalize their medical care over what we would just
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  recommend for the general population.
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  Host: Who would you say should consider seeing a cancer genetic counselor?
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  Terra Armstrong: So, there's a lot of people who could probably benefit
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  from seeing cancer genetic counselor, and they don't necessarily have to
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  have a cancer diagnosis themselves.
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  That's oftentimes where we start because they're the people who we're
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  most concerned about, of course.
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  But there are certain aspects or maybe red flags that we look for in terms of
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  who a good candidate for counseling.
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  So, some things that patients could maybe think about or keep in mind is
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  if have early-onset cancers in their family, maybe people who were diagnosed
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  young, like below the age of 50.
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  If they have rare cancers in their family, some examples would be things
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  like ovarian cancer, pancreatic cancer, male breast cancer or anything,
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  you know, maybe that's rare, they could consider genetic counseling.
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  And then, if they have strong history, so multiple relatives on the same side
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  of the family with similar cancers, or if their doctor's ever mentioned a
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  concern for a hereditary cancer syndrome.
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  But ultimately, what I encourage patients to consider is if they have any concern
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  about their personal or family history in terms of inherited cancer syndromes,
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  to make an appointment with us, because we can always talk with them about what
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  our concerns are and hopefully alleviate them, and maybe we need to do anything
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  further, or we can assess, you know, what their risks are and determine if there's
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  anything else that needs to be done.
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  Host: So if someone reaches out, what's next?
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  What happens during the process of genetic counseling?
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  Terra Armstrong: Sure.
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  So, I think of genetic counseling probably in three parts.
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  That's a good way to think about it.
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  So, part one, of course, is you have your appointment scheduled, and what we ask
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  patients to prior to their visit is gather information about their family history.
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  We usually ask a lot of questions about what cancers people may have had, how
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  old they were when they were diagnosed, and try and really build out that family
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  tree to look for patterns or clues.
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  We also ask patients to gather genetic test results from family members.
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  So, there is little bit of work before the visit, which is sometimes different
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  from other appointments patients may have.
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  That's sort of, you know, pre-appointment work.
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  Then, the actual genetic counseling appointment itself is, of course,
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  with the genetic counselor.
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  Usually, those appointments can be around 45 minutes.
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  It's a little longer than a normal doctor's visit.
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  But what we do is talk about that family history, clarify
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  information, clarify misconceptions.
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  We educate patients on basics of genetics and hereditary cancer syndromes.
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  And then, we assess if they're appropriate candidates for genetic testing.
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  If patients are, then of course, we go through all that information about
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  what tests to order, what we recommend, sample collection, insurance coverage.
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  And then, we even talk about genetic discrimination.
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  So, that appointment can be pretty information-heavy, but what we're doing is
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  trying to make sure that we're getting the proper informed consent for the genetic
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  testing and making sure patients know what they're going to learn and how it could
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  impact them and their family members.
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  So, that's sort of part two.
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  And then, part three is what happens next.
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  So if a patient pursues genetic testing, we would follow up with the patient
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  about their results, talk with them about any findings, what screenings
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  we recommend for cancer, and what their family members should consider.
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  If patients don't choose to pursue testing because it is completely optional, we
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  would then do like a risk assessment for the patient and give them personalized
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  screening recommendations based on their personal and family history at that time.
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  So, that's sort of how I think of the visit, maybe sort of three
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  parts, but it's choose your own path.
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  So, it depends on how the patient wants proceed as to what we wrap up with.
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  Host: So, Terra, in regards to that second part when you discussed genetic
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  testing, how do see that influence a patient's care or treatment plan?
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  Terra Armstrong: With the genetic testing, it can definitely impact patients' care.
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  In terms of patients who maybe don't have a cancer diagnosis, what the main
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  benefit is determining what screenings we should be doing moving forward.
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  So, for example, if a patient has an inherited risk for breast cancer,
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  then maybe we're talking about starting breast cancer screening
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  at an earlier age, increasing the amount of screening we're doing.
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  So, instead of maybe just a mammogram once a year, also incorporate breast
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  MRI, and then other options for risk reduction, whether that's surgery or
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  medication or something like that.
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  Genetic testing can impact patients who have a cancer diagnosis, because
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  it opens up the opportunity for sometimes different treatment options.
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  So, it of course depends on the type of cancer a patient has, and we always
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  encourage patients to talk with their oncologist about treatment plans.
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  But some genetic testing that identifies hereditary syndromes
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  can qualify patients things like PARP inhibitors or immunotherapy.
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  So, that can beneficial for patients who are actually undergoing treatment in
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  addition to their screening once they are through their initial cancer treatment.
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  Host: I can imagine there are times that patients come and they're not confident
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  about taking part in genetic testing.
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  Maybe they come to you and they're overwhelmed, or they have a
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  misunderstanding about exactly what it is.
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  So, how do you work to smooth out those concerns and dispel any myths?
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  Terra Armstrong: It's really common actually for patients to come to us
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  in terms of being overwhelmed or not sure exactly how they want to proceed,
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  because genetic counseling is not something that people are super familiar
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  with unless they've been in a situation where they've had to seek out that care.
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  So, a lot of times when patients are coming to see us, we really try and
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  assess their understanding of the visit when we're first meeting with them.
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  So, trying to find out if they've looked anything up, if their doctors told them
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  anything, what their understanding is.
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  So that way, we can help guide them in terms of what to expect.
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  So, we set an agenda.
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  We explain to them, you know, like I said, those kind of three parts
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  of the visit so they know what's coming next, because it's not
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  unusual patients to be unsure.
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  And in addition to the genetic testing component, patients may not feel
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  comfortable pursuing genetic testing, but it's always optional, we make sure that
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  we reinforce that because we're here as guide to help patients figure out what
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  option is best for them and their family.
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  And sometimes genetic counseling is just a conversation.
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  There's no more that happens after that.
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  So, that's something that I think I like to address pretty upfront
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  with patients, is that we're here to help you and help you make an
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  informed decision and work together.
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  We're not here to tell you what to do what not to do.
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  And, you know, that's something that is really important to us in terms of of
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  genetic counseling, is giving patients the opportunity to make that choice.
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  Host: What are some of those common misconceptions that
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  you hear in your office?
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  Terra Armstrong: Misconceptions or maybe major concerns that I think I hear often
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  are usually around the cost of genetic testing and then also discrimination.
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  So, those are two main things that we're always discussing with with patients and
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  are probably one of the biggest things that we see cause patients to avoid having
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  an appointment or even following through.
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  So in terms of cost, patients have an understandable perception
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  that it's very expensive.
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  Because historically, genetic testing, you know, we hear about it,
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  costs people lots of money get done.
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  But genetic testing is much more affordable for patients now,
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  insurances are much more likely to cover it, especially patients meet
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  criteria, which is what our job is to determine during the visit.
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  We also use laboratories that are patient-friendly and have financial
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  assistance programs, and we work with patients in the laboratories to try
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  and get genetic testing accomplished.
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  These laboratories also have self-pay options that are, you know, for
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  some patients, more affordable than what they have been past.
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  So, try and tell providers and patients, "Don't let cost be a barrier to
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  having appointment and learning more."
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  And then, we can work with you to help try and get that covered
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  in the easiest way possible."
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  So, that's one major misconception or concern that we see.
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  The other is genetic discrimination and that is, again, very valid
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  for many patients worried about.
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  But there is a federal law called the Genetic Information Nondiscrimination Act.
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  That law protects patients from genetic discrimination when it comes
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  to most employers and health insurance.
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  So, patients cannot be discriminated against no what their results show,
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  again, for most and health insurance.
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  And so, that's really important for us to communicate with because
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  I think it is a valid of patients to think, "Could my job be on the
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  line or could I lose my insurance?"
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  But this federal law is protection against that.
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  That law, you know, has its limitations.
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  So, it doesn't cover protection from discrimination from
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  other types of policies.
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  So, we do talk with patients about getting things set up before
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  testing, like life insurance, long-term disability, long-term care.
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  But there is no discrimination, you know, at play for seeing a genetic counselor or
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  having a genetic counseling appointment.
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  So, we always encourage patients to come talk with us, and we can, you
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  know, walk you through that information help figure out when is to test or
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  who is best to test, and how do we get you set up to do that successfully.
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  Host: Wow, Terra, given us so much information today.
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  And I didn't know all this.
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  Just couple more questions here if we can.
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  Should family also consider genetic counseling when a loved one has cancer?
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  Terra Armstrong: I would say it's always possible.
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  So, sometimes testing for family members that are unaffected definitely possible.
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  Like I said earlier, I think it's always preferred if we could test the
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  patient in the family with cancer.
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  That's concerning because they're the most informative person to test.
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  But we do have situations where that's not always possible.
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  They're either going through treatment or not feeling well, or they don't live
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  close by, or whatever, is the case.
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  And so, there are situations where we're testing family
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  members of those with cancer.
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  And so, I would say if that's, you know, a situation that you find yourself in,
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  ask your doctor, reach out to us, and we're happy talk through that with you.
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  But definitely a situation where we can see that happen.
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  Host: So, if listeners remember just one thing from today,
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  what would you want it to be?
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  Terra Armstrong: It would probably just be reiterating that genetic counseling does
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  not equal genetic testing necessarily.
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  There can be many things that come up in a genetic counseling appointment that you
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  don't need genetic testing to do to find and, you know, be helpful for patients.
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  So, it's not one or both.
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  It's a full circle appointment where we assess the patient and
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  their entire family and think about what's best for all involved.
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  So, I think that's what I would like patients to know is that we're here to
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  help and talk through all the options and all the possibilities, and it
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  probably will be a lot of information, even just like today's podcast.
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  But we're here to support patients and their families in whatever way they need,
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  whether or not testing is part of that.
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  It can be a helpful tool, but it's just one part of the visit.
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  Host: So Terra, receive that support, where can someone go if they want
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  to learn more or get connected with genetic counseling services at UK?
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  Terra Armstrong: Definitely.
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  We would love for people to reach out if they are interested.
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  Our direct line is 859-323-2798.
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  That goes to our counseling assistants.
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  They can answer many of the patient's basic questions about genetic counseling.
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  They schedule patients.
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  We do not require a referral, but you can also talk with your
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  doctor who can refer you to us.
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  And we also have a email address that anyone can reach out to.
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  It's cancergenetics@uky.edu.
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  Host: Awesome.
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  Nolan Alexander (Host): Terra,
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  Host: thank you for your time today
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  Nolan Alexander (Host): and
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  Host: you told us.
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  We're walking away more informed, and we know how to be connected to
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  you and others at UK Healthcare.
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  Thank you again.
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  Terra Armstrong: Thank you so much.
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  Host: That was Terra Armstrong, licensed genetic counselor
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  at UK Markey Cancer Center.
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  I'm Nolan Alexander.
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  And thanks for listening to UK HealthCast, a podcast from UK Healthcare.