May 24, 2017

Interview Transcript

Interviewer: Genetic counseling, what is it and is it something you and your family should consider so you have an idea of what kind of health risks might be facing you? We'll learn more about that next on The Scope.

Announcer: Health tips, medical news, research, and more for a happier, healthier life. From University of Utah Health Sciences, this is The Scope.

Interviewer: What does an appointment with a genetic counselor look like? Whitney Espinel is a genetic counselor at Huntsman Cancer Institute. And Whitney, if somebody ends up in your office, first of all, how do they end up there? What was their journey like before that moment they walk through your door?

Whitney: Most people are referred by their doctor. They brought up a family history with their doctor and they're referred or they're diagnosed with cancer and there are some sort of red flag that made their doctor think about genetic testing.

Interviewer: All right, and is it the doctor's intention then that they want their patient to be genetically tested if they're sending them to you or do you do other things as well?

Whitney: Most people coming in want genetic testing or at least want to have that discussion with us, but other things we do are what kind of screening is appropriate based on your family history regardless of genetic testing.

Interviewer: So when they come into your office, they have not been tested yet?

Whitney: They have not.

Interviewer: So what's that first meeting look like?

Whitney: So we generally sit down, talk about their medical history, get a pretty comprehensive family history, so three generations, who has cancer, who doesn't have cancer. We talk about genetic testing. We talk about insurance coverage, what the test would mean for themselves as well as for their family members, and then we can send off the test that day.

Interviewer: You kind of brushed by what the test means and what it could mean for their family members, but isn't that a big part of what you talk about because there's a lot of issues, I think, the common person doesn't think about when it comes to that?

Whitney: Oh, sure. That's a much larger discussion in our visit. So we talk about, you know, what does this test mean for you? Are there surgeries or screenings that we might recommend? If you're positive, what does that mean for your family members? Can you pass it on to your kids or not?

Interviewer: So a good idea to bring a comprehensive family history beforehand so then they can be ready to discuss that with you. Is there anything else they should bring to that first meeting or anything they should be ready to talk about?

Whitney: You know, I think as much as you can, talk to your family about their health history. That's really what we ask. Ask about any types of cancers, how old they were, who's had genetic testing if any, and that's the best that they can do before coming in.

Interviewer: And then, at that point, if you decide "We want to do some genetic testing," are you the one that orders the test at the point?

Whitney: We are. We do blood sample or saliva sample with them in the visit. We send it off to the lab.

Interviewer: Oh, their first visit?

Whitney: Uh-huh, exactly.

Interviewer: Really? Okay. And does insurance cover that or no?

Whitney: Yes, for the most part. That's a really big question that we have. So genetic testing can range in price, but it's mostly covered by insurance as long as they meet certain criteria, but we can talk about that in more detail with them in the visit.

Interviewer: Yeah, and you're an expert at kind of figuring that out, I'd imagine.

Whitney: Unfortunately, we do a lot with insurances, so yes.

Interviewer: I'm sure, right? Okay, so that first meeting happens. They go get the test. Then what? Two to three-week waiting period, come back for a follow-up?

Whitney: Exactly. So two to four weeks for genetic testing. Generally, we either have them come in for a follow-up and discuss results or we call them over the phone with those results. If it's positive, we might recommend seeing certain medical specialists or certain screenings. If it's negative, sometimes we still recommend screenings or we just say, "Hey, this is great news. There's no cancer risk in your family."

Interviewer: Let's take a look at that second meeting just in terms of time spent. Is there a lot of time spent helping people understand what the test results actually say? Because there are times I'll get my blood test results back, right, and I can see them in my chart before, and I think, "Oh, I have no idea what this means. It's just a bunch of numbers."

Whitney: You're not alone in that. Doctors, medical professionals, it's very complicated information. We really sit down, go over what did we test, what does that result mean? What specific cancers is that person at risk for? Can they pass it on to their children? What screening is recommended? What risk reduction technique should they consider? All of that.

Interviewer: Can you get a percentage of risk? Could you, after looking at this information, go "All right, you're about 40%. You're about 80%"?

Whitney: Sometimes we can, yeah.

Interviewer: Yeah? And is it limited to certain cancers?

Whitney: You know, the biggest referrals that we see are breast cancer, ovarian cancer, colon, and uterine cancer. Those tend to have an underlying genetic condition more often than other types of cancers.

Interviewer: Okay. So after that second meeting, how long is that meeting generally, an hour, two hours?

Whitney: Anywhere from 30 minutes to an hour.

Interviewer: Okay. Is there going to be another meeting after that point or . . . I mean, do you have an ongoing relationship with the patients or at that point, are you done?

Whitney: It really varies. Some patients, we follow for long periods of time. Others, we send them to a physician who can better manage their syndrome or their cancer risks. It really depends on the patient sitting in front of me what I'll recommend.

Interviewer: Got you. And is there anything else that we should know as far as this journey is concerned if somebody is at the beginning of it, you know, wondering what to expect? I think we covered a lot of really good stuff.

Whitney: I think just ask questions. Ask your doctor. Call a genetic counselor. Ask your family about their medical history. The more information you can get, the better.

Interviewer: And are there times where you don't even get a genetic test done?

Whitney: For sure, yeah. Some people come in and just want information, and don't have any intention of doing genetic testing, and we just go off family history and their personal history.

Interviewer: All right. I like this, whether you get the genetic testing done or not because it really helps people take ownership of a possible problem before it becomes a problem, and they can implement solutions in their life that might solve that.

Whitney: Exactly. That's our goal, is to prevent cancers from happening. And so, we take as much information as we can and try to stop people from developing breast cancer or ovarian cancer, for example.

Announcer: Want The Scope delivered straight to your inbox? Enter your email address at thescoperadio.com and click "Sign Me Up" for updates of our latest episodes. The Scope Radio is a production of University of Utah Health Sciences.


For Patients


Sign Up For Weekly Health Updates

Get weekly emails of the latest health information from The Scope