Ep. 8 – LiveWell Talk On…Genetic Testing (ft. Julie Thompson)
Host: Dr. Dustin Arnold, chief medical officer, UnityPoint Health – St. Luke’s Hospital
Guest: Julie Thompson, genetic nurse practitioner, Helen G. Nassif Community Cancer Center
Dr. Arnold: This is LiveWell Talk On…Genetic Testing. I’m Dr. Dustin Arnold, chief medical officer at UnityPoint Health – St. Luke’s Hospital. There are many risk factors that can cause cancer. Some we can control, such as diet and exercise, but other factors, genetics for example, are out of our control. However, there are resources available to individuals with a family history of cancer to help them understand and minimize the risk. Our guest today is Julie Thompson, a genetic nurse practitioner with the Helen G. Nassif Community Cancer Center. Thanks so much for stopping by.
Julie Thompson: You’re welcome.
Dr. Arnold: Well, Julie, this is an interesting topic. This is the future of medicine with the mapping of the human genome in the early, mid-nineties, I think somewhere in there. So that opened, that was the prologue to what is to follow, genetic testing, from an Orwellian standpoint, some people are fearful of it, right?
Julie Thompson: That’s true, yes they are.
Dr. Arnold: And can a pre-existing condition pre-exist prior to it being a condition, you know that…
Julie Thompson: Right.
Dr. Arnold: And that’s a legitimate concern.
Julie Thompson: It is.
Dr. Arnold: I’ve often said, you know, if you were tested for dementia and you had the genetic makeups, let’s say. Then the first time you couldn’t find your keys, you’d be like, okay, here it starts, it starting.
Julie Thompson: Yep, you panic.
Dr. Arnold: Yep. Here it is. Here it is. Here’s what’s going on now. So start off, what does it take to be a genetic nurse practitioner?
Julie Thompson: So there are many different ways actually for a person to become a genetics professional and there are, the first one that’s most common is actually a genetic counselor. And those are individuals who actually have a master’s degree in genetic counseling. Unfortunately, those people are few and far between. There aren’t very many institutions out there right now who have degrees in genetic counseling, but we’re working on that. Other professionals that do genetic counseling are people like me, who are nurse practitioners. And typically what we’ve done is go through programs that give us additional certification and training specifically for genetic counseling. What I did was go through the City of Hope, which is a cancer research hospital in Los Angeles. And they have a program that takes nurses, physician’s assistants, MDs and nurse practitioners through their program that gives us the ability and the training then to do the genetic counseling and testing.
Dr. Arnold: Here in the state of Iowa how many certified, if you will, or credentialed genetic counselors slash practitioners we have?
Julie Thompson: Not near enough, unfortunately. I believe there is one individual in Des Moines. There is one individual in Mason City. There are three of us here actually in Cedar Rapids and then the University of Iowa. So we’re spread pretty thin.
Dr. Arnold: Right. And two of those three are with the Helen G. Nassif Community Cancer Center, correct?
Julie Thompson: Correct. My partner, Shana Coker, who is also a nurse practitioner, she sees patients primarily at our affiliate in Dubuque and Fort Dodge. And then I see most of the patients that come through the Cedar Rapids office.
Dr. Arnold: What’s an average day? Take me through an average day.
Julie Thompson: So an average day I will see probably three patients, which to most providers sounds fabulous, but our visits typically last about an hour and a half and then there’s prep for each of those visits. We’ll also have maybe three or four test results that we’re either talking to people on the phone or we’re actually bringing them in for test results.
Dr. Arnold: Is health literacy a challenge?
Julie Thompson: Yes it is. Genetics is a tough kind of cookie to crack I think. I mean, this is, this is difficult things for, for almost anybody to understand. And so we really do need to try and tailor our teaching to whatever educational level that we’re seeing with our patients. And not only that, but you know, a lot of times if we’re seeing a patient who’s just been diagnosed with cancer, they’re overwhelmed and they’re getting so much information thrown at them so that we need to be very careful with how we’re presenting our information to them so that it’s easy to understand and yet they can see how important the information is.
Dr. Arnold: Why don’t you walk us through how genetic profiling, that’s probably not a positive term, but genetic testing plays a role in cancer therapy.
Julie Thompson: Okay. In the therapy part? Sure.
Dr. Arnold: Because it seems like we’ve went from, we went for where we’re going to have certain drugs targeted for certain cancers.
Julie Thompson: Correct.
Dr. Arnold: And we blew right by that and now we’re at certain drugs for certain people with certain cancers will be used and it’s really individualized down to the person, not necessarily the cancer anymore, and that’s fascinating.
Julie Thompson: Yes. It’s just, I can’t express enough how much this has changed. I’ve been doing this for probably 12 years now, and when I first started out we were looking at maybe three or four different genes. Today we can look at well over a hundred when we do testing. So that, and that’s just in the world of cancer. So that’s how much things are changing. It’s fast. But at the beginning we were looking at ways that maybe not necessarily would help the patient so much as would helped their family to know if they were at increased risk. But now definitely we are looking at ways to target those therapies based on the genetics of the tumor itself. So there are just so many ways that that treating cancer is opening up because of genetics. So it makes it, it makes it very important for anyone who’s had a cancer diagnosis to think about doing genetic testing.
Dr. Arnold: Yeah, I can remember in my 23 years of practice that where I’ve had an individual that perhaps was late in life, had colon cancer is one that comes to mind, where it was fairly certain they had a cancer, they chose, I don’t want to do anything about it. Don’t put me through anything. I lived a long life and I’m comfortable with that. But I would, I don’t know if talk them into, but lead them to say, well, but if we do a procedure and a biopsy, you can tell your family and then they can understand that they’re at risk. So I can see where genetics is going to replace that. So where we can say, well, I think dad has colon cancer, let’s get you the family tested or profiled from that standpoint. So, which that’s fascinating.
Julie Thompson: Yeah. And I think it’s also important to note that, certainly when I started out, the focus was breast cancer and with maybe looking at ovarian cancer as well, and a little bit of colon on the side. And a lot of people still think that that’s, you know, when you think hereditary cancers, those are the go to. But honestly, almost every cancer may have a hereditary component to it. So we are definitely seeing patients with almost every type of cancer to do genetic testing.
Dr. Arnold: That’s fascinating. Are there patients that present with cancer, they’re tested and they’re told there’s, your genetic profile, there’s nothing we can do for that or is it always helpful to have it done where it compliments their care they’re going to receive?
Julie Thompson: It may not be always helpful for them specifically, but it’s always helpful for the family.
Dr. Arnold: Okay. That’s whether it confirms or discounts there’s or genetic involvement.
Julie Thompson: Correct. Yes. Yes.
Dr. Arnold: Well, I warned you ahead of time that we would get to this, and you and I have had this conversation before.
Julie Thompson: Okay.
Dr. Arnold: The 23andMe, Ancestry.com.
Julie Thompson: Oh yes.
Dr. Arnold: I know you get those calls.
Julie Thompson: We do.
Dr. Arnold: And I know you get a lot of them. Walk us through your opinion on that.
Julie Thompson: I have a little bit of a jaded opinion about that. I’ll say that. And, and honestly, at a large conference that my partner Shana and I went to back in March, that was a whole, that was a whole subject of conversation. And the reality is, is that 23andMe, Ancestry.com, Nat Geo, they are offering this testing and it’s not going to go away. So we need to understand what those tests are doing so that we can help our patients. What I tell patients is we believe those tests are great for an entertainment value, we’ll say. And I don’t, I don’t mean to belittle that because I think finding out one’s ancestry is fabulous and I’d be curious about that as well. But the health side of things, mostly with 23andMe, the issues that we have most with it is that, first of all, there’s no counseling ahead of doing the testing. And that’s a big part of what we do before we test anyone. That’s why our appointments are so long is that we are really talking to these patients to see why are you wanting this testing done? What are you, what are you hoping to gain from this? If the answer is A, then have you thought about what you would do with that answer? If the answer is B, oh my gosh, are you going to run and hide from the world? So that’s not there with these what we call the direct-to-consumer testing. And there is also no then counseling on the, what we call the backside. So when those patients or when those individuals receive those test results, you know, they, you know, get this 25-page printout of something that’s, that’s honestly very difficult to understand and they’re unsure of what to do with it. So we may have somebody who, who receives a test result that says, you know, here is, you are at an increased risk for, for this disease and this disease, and they panic. Then we may get a person who says, nope, you have no risk at all, don’t worry about it, and so they decide that, well, I don’t ever have to have a colonoscopy or a mammogram because my 23andMe said that I’m not at risk when, when in reality that’s not true. And another, I think very important thing is that there was a study that was done, I believe it was two years ago now, by one of the top legitimate, genetic labs in the country, and they took a hundred individuals from people like 23andMe who had had testing done. So these people had had testing done and they had received a result that said, you have an increased risk for cancer, you have a genetic mutation and this lab, legitimate lab, they took those people and retested them again for free and they had a 40 percent false positive rate.
Dr. Arnold: That doesn’t surprise me.
Julie Thompson: Yeah, me either, but that’s a very scary, that’s a very scary thing. So certainly if somebody comes to me with a test result from one of those direct-to-consumer companies, what I really counsel people to do is we need to retest you. We need to retest you with a medical-grade lab that we know is looking correctly at these results.
Dr. Arnold: That is, you know, I’ve always said that there’s two relationships that you have with patients. In some patients you demonstrate both those relationships. One of them, some patients it’s one or the other and that’s either you’re paternal, as a parent…
Julie Thompson: Sure.
Dr. Arnold: Or you’re fraternal as a sibling, you know, and so you partner with them. You know, sometimes you’re paternal, you just tell a patient no and the patient goes, okay. But there’s other times you have to be fraternal and this sounds like a fraternal situation where you want to partner with the patient.
Julie Thompson: Yes.
Dr. Arnold: Be transparent, teach the patient, learn, learn yourself as you go through.
Julie Thompson: Absolutely. I mean I, one of the things I say from the onset with an initial visit is that I am here to teach you about hereditary cancer syndromes and genetic testing, but it is absolutely your decision whether to go forward with the testing. So I can, I can look at your family tree and tell you, you know, I think it is very reasonable for your family to consider genetic testing and this is why I think that, but in the end, it is their decision because absolutely, people especially even within a family, have very different opinions about genetic testing and what they want to know and what they don’t want to know. And that’s okay.
Dr. Arnold: I can imagine there’d be some patients say I just simply don’t want to know.
Julie Thompson: Right. Yep.
Dr. Arnold: Yeah, that does make sense. It’s a fascinating subject and I have to wonder when, my youngest daughter watches criminal minds all the time, so I’m familiar with that show, I’m not familiar with so much with the other CSI and all that. So when they’re just going after DNA all the time, how accurate is that?
Julie Thompson: Oh, you know, I guess it’s probably pretty accurate. I don’t know.
Dr. Arnold: I mean do you watch those shows and go that is not how it works?
Julie Thompson: I honestly am one of those people that if it’s a medical show, I usually don’t watch it because I’m like, oh gosh, really? That’s not real life. That’s not how it goes.
Dr. Arnold: I’m just the opposite and the one that sits in…
Julie Thompson: And critiques it all?
Dr. Arnold: In the man cave and yells at the TV, you know.
Julie Thompson: That could be fun. Yeah. Yeah.
Dr. Arnold: Like House, they’ll get the brain biopsy prior to the CBC. That is not how it works.
Julie Thompson: Right. Nope. Nope.
Dr. Arnold: One last question.
Julie Thompson: Sure.
Dr. Arnold: What got you interested in genetic counseling? That is not something, I’m sure we’re going to have someone maybe even listening to this podcast, going to grow up saying I want to be a genetic counselor when I grow up.
Julie Thompson: Please do.
Dr. Arnold: Exactly. But what got you interested? Cause you’re kinda at the cutting edge or the bleeding edge as we say in medicine.
Julie Thompson: Sure, so I when I, you know, was I got my nurse practitioner back in ’99, and honestly I wasn’t even aware that anything like this existed at the time. And back in 2007, I think it was St. Luke’s was thinking about, along with building their cancer center, about having a genetic testing program, and at the time I was working in a clinic and my actual initial certification is women’s health. And so they were looking for a nurse practitioner because again, it was mostly the focus was on breast cancer and ovarian cancer, so they were looking with someone for someone who had a women’s health background. And so they kinda tapped me and said, hey, would you be interested? And I was like, well that sounds awesome. Sure. I’ll give that a go. And then went through the City of Hope program to do that. So yeah, I’ve definitely learned from the ground up. Definitely.
Dr. Arnold: Yeah, this is fascinating. I always enjoyed genetics in undergrad and medical school and this plays into it. It’s dynamic though.
Julie Thompson: Oh my gosh, yes.
Dr. Arnold: I think I’m caught up on it and then something else comes out and like, where did this come from?
Julie Thompson: I’m not caught up on it, and I do it every day. Yes.
Dr. Arnold: I feel reassured that I shouldn’t think less of myself.
Julie Thompson: Yes, don’t feel bad. But no, it is, there’s a huge shortage of genetics professionals in the country right now. So anyone listening who loves science and genetics, please look into it. That’d be great. I’d love to retire someday, and maybe not if I can’t find somebody to replace me.
Dr. Arnold: We want to keep you around. This is really great information and thank you so much for taking the time to meet with us.
Julie Thompson: Oh, you’re welcome.
Dr. Arnold: Again, this was Julie Thompson, a genetic nurse practitioner at the Helen G. Nassif Community Cancer Center. To see if genetic testing may be right for you, take the genetic testing questionnaire on the Community Cancer Center’s website, which is communitycancercenter.org/genetics. If you have a topic you’d like to suggest for a Talk On… podcast, shoot us an email at firstname.lastname@example.org, and we encourage you to tell your family, friends, neighbors about our podcast. Until next time, be well.