Inside the GENOME

The Emerging Role of Genetic Counselors in Tumor Testing

September 27, 2021 Myriad Oncology Season 1 Episode 27
Inside the GENOME
The Emerging Role of Genetic Counselors in Tumor Testing
Show Notes Transcript

In this episode, Dr. Slavin welcomes Leigha Senter-Jamieson, MS, CGC, to the podcast. As an Associate Professor of Internal Medicine, Associate Director of the Division of Human Genetics, and the Ohio State University Genetic Counseling Graduate Program Associate Director she discusses hereditary testing and offers her unique insight into the emerging role of genetic counselors in tumor testing.



0:00:11.2 Dr. Thomas Slavin: I am Dr. Thomas Slavin, Senior Vice President of Medical Affairs for Myriad Oncology. Welcome to Inside the Genome. Hi, everyone. Welcome back to the podcast. Today we have Leigha Senter, she's a licensed Genetic Counselor. She is an Associate Professor of Internal Medicine, as well as the Associate Director in the Division of Human Genetics, and the Associate Director of the Ohio State University of Genetic Counseling graduate program. So she works at the Ohio State University Comprehensive Cancer Center and has many titles. We are very happy and privileged to have her on the podcast today. So welcome, Leigha. Thank you so much.


0:00:49.2 Dr. Leigha Senter: Thanks for having me.


0:00:50.9 DS: Yeah, you have an interesting background. I first met you a few months ago, yeah, I was really interested in your integration into the somatic world through genetic counseling, which we tend to think of usually more in a hereditary type cancer context since this is a cancer discussion. So I was wondering if you could just discuss your path. How did you start out, and then how did you get to where you are now, and if you could just explain to people a little bit about what your clinical life is and you're research mix? 


0:01:26.6 DS: Yeah, sure, I'm happy too. So I've been a genetic counselor since 2003, so quite a long time by practicing in cancer the whole time. And I think for the first, even half of my career so far, we practiced in a very traditional genetic counseling model where the genetic counselors had an outpatient clinic where patients had to come see us in a different location on a different day and so forth. We realized over time as more cancer patients needed genetic testing, and we're still talking about germline here, that we weren't doing a really good job of meeting their needs by making this so difficult on them. So we started to integrate into the other cancer specialties just really to make it easier and have more patient-centered care. So in 2014, I embedded into the gynecologic oncology clinic, where I support eight gynecologic oncology attendings. And still at that time, our primary focus was making sure that all the women with ovarian cancer had access to BRCA testing. But it was shortly thereafter that PARP inhibitors became so at the forefront of all discussions with these patients, and then the label indication started to grow and grow, and somatic testing then was put in our laps to say, "Okay, all of these patients probably need somatic testing."


0:03:04.7 DS: So it just sort of evolved naturally that because I was already there and talking about genetics with hopefully all of the patients who are diagnosed with ovarian cancer, it just made sense to add tumor testing as part of the discussion. And I have to say though, I hadn't really counseled about that before, it was not very hard to do, because when you're talking about germline genetics, it's not that hard to also explain what the tumor genetics are, too. And so it just kind of naturally grew to include both kinds of testing.


0:03:42.7 DS: Yeah, and what is your role now overall? You're seeing clinical patients, I assume a few times a week. Are you the decision-maker for what tests are being ordered in these situations? How closely are you working with your gynecologist, oncologist colleagues? 


0:04:03.3 DS: Yeah, we work really close. I'm in clinic two days a week, we actually just hired another genetic counselor about a year ago to also support gynecologic oncology. But we sort of put our heads together a year or two ago and said, "Let's try to streamline this as much as possible." So about decision-making, I would say it's really a combined decision, but I take the oncologists lead, and so we kind of have an if-then-what kind of decision tree. So it takes the guesswork out of it for me. And if there's any deviation from that, I sort of go back to them and say, "Are you sure we wanna do it this way, or which test is gonna help you the most in a therapeutic decisions?", and then I can just help facilitate that. And there are some situations where I'm seeing patients, maybe while they're getting their neoadjuvant treatment or the treatment before they ever have a surgery. In that situation, maybe I'm just doing the germline testing and then the nurse practitioners or other members of the staff order the tumor testing later after the patients have their surgery. So we're in constant communication, really, which has been great because I think we're all playing a really important part in that team.


0:05:21.3 DS: Absolutely. On the back end, so after all the testing has been completed, are you sitting down and going through both results at the same time in many of the cases? 


0:05:31.9 DS: Yeah, usually if I've facilitated both kinds of tests, when I call the patient with their results, I'll sort of review both of them and then I document both of them in one progress note, also. Yeah, so it's kind of all in one place. Now, I defer a lot of the, obviously, a lot of the detailed discussion to the gynecologic oncologist with regard to the somatic result in what role that might play in therapeutic decisions. But I answer any sort of genetics-related questions at that time.


0:06:05.3 DS: Yeah, no, that's great. Do you think, in your experience, are the patients really understanding if something was found in the tumor and it wasn't in their mom and dad germline genetics, are they understanding that? What kind of complexities are you seeing in clinic? 


0:06:21.4 DS: Yeah, I suppose... I don't have data to suggest it, but I think so, and I guess what I use as evidence to that is in the situations where we haven't had a discussion about both kinds of testing, either before or after we have results, I do notice a little more confusion when they're separated by time, because a person will think, "Oh, I had genetic testing, my family members don't need to be tested," and then maybe they do have a somatic mutation and then they're concerned again that it might impact family members. But when I'm able to dispel that worry right off the bat, people are like, "Oh, okay, just my cancer has this mutation. That's good." Yeah.


0:07:07.0 DS: Are you seeing a lot of discordant results where like a germline test comes back with mutation and a tumor test doesn't, or vice versa? 


0:07:17.8 DS: Once in a while, but not routinely. And I would say it's usually not an exact discordance, it might be a difference in the technology used that there's a justifiable reason for why it wasn't found. Yeah.


0:07:35.6 DS: Something wasn't found or called differently or something like that.


0:07:37.2 DS: Right. Right.


0:07:39.9 DS: Okay. Yeah. Yeah. I know you do a lot of research, as well. What are you working on these days? 


0:07:45.3 DS: Oh, that's a great question. So in my role, I've also sort of evolved from or supporting other PIs who are doing more molecular gene hunting kind of studies to focus on some of my own research projects. And I would say the two that are taking up most of my brain space these days are related to how we communicate about genetics, but in two very different ways. So, one, a few of my projects are how families communicate about cascade genetic testing, so once a mutation is identified, how they talk to their family members about it. And then a new project that we recently just got funding for actually is about somatic testing, sort of consistent messaging, trying to meet the standards that a lot of the experts have published that say, "These are the things that you should be talking about before you do somatic testing." In a busy oncology office that doesn't necessarily always happen, and so a collaborator of mine and I are working together to design a video message that we can sort of test to see if it works in that way.


0:08:58.2 DS: Oh, that's great. Yeah, no, it's great to see that your clinical work is really leading to this, the forefront of research on this topic and how to integrate it. As a whole, I think you definitely, in my mind, are out there doing a lot of the somatic work, but I would say the genetic counseling profession as a whole is largely still doing hereditary, I was thinking specifically about cancer genetics. I mean, what do you think the role for a genetic counselor is in the tumor world, or do you think there's things missing from the training or things that you wish you would have had? You also work a lot with the education program there? 


0:09:39.3 DS: Yeah, yeah, it's a kind of a loaded question, but I think for genetic counselors who are working in spaces where somatic testing is now becoming part of the care, it's an easy transition. And I know some of my colleagues might be a little apprehensive, and that's sort of not what they're there to discuss, and sometimes our oncology colleagues are a little apprehensive like, "No, you don't discuss that." But I think even for the patients where I'm not facilitating the ordering of their testing, I still mention it, like, "Your doctor is probably gonna wanna order tumor genetic testing, too. Here's how that's different. And when you get that result, here's how it's different." So as far as giving the patient the best information so that they can adjust to it, I think they should. I think genetic counselors definitely play a role there.


0:10:33.3 DS: I do think it's a little different to make that leap, if it's a situation where somatic testing is the gold standard, and there's a very low likelihood of finding something that's meaningful in the germline, if you do it's, you know, really incidental, like the lung cancer space, for instance. I think genetic counselors can still play a role in that team, in the sense that some people will need genetic counseling or follow-up germline testing, and we should all play together nicely in the sandbox and make each other, sort of... Everybody plays an important role there, but that's a bigger leap, I think. But as far as training the next generation of genetic counselors, the more that the clinically practicing genetic counselors now have those discussions, that's where we're training, it's in the clinic. And so I think it is rare for students to have more than a lecture or a seminar, and that makes sense because there's so much that they do have to learn in that short amount of time. But I know for certain that any student who's on rotation with me, is gonna at least understand how to counsel about it in tandem with germline discussions, for sure.


0:11:50.8 DS: Yeah, yeah, yeah. And the worlds are just colliding. It's hard to just be an expert in one and know nothing about the tumor, for instance, because even things that... I think of chrono-hematopoiesis, which is a big word, but when there's aberrant clones in someone's blood that are floating around that are being created from bone marrow or it could be from leukemia, or could be circulating tumor, there's a lot of confusing things to figure out, "Okay, is this really an abnormal blood clone, or is it something else?" That's really, in my mind, that total intersection of... You really have to have a decent handle on what is in the mom and dad germline genetics, what could potentially be in tumor, what could be in a hematologic cancer, and what does this all mean? And then you can even see those clones sometimes now in tumor tissue. That also becomes very confusing, so yeah, I think the worlds are just on a collision course and, yeah, it's great to have people like you that are really leading the charge and thinking about the research and how to counsel patients and these kind of models.


0:13:00.6 DS: Yeah, and to me, it's been really rewarding, just personally, too. It's nice to kind of add something new and shake it up a little bit, but I also think it underscores the value of what we can bring as genetic counselors to the discussion because it really didn't change how I see patients. And it doesn't extend the time of my appointments or anything like that, whereas probably having a really super detailed discussion in the oncology office where they've already got 20 other things that they have to cover might have changed, you know how it happens there, so it just worked really nicely.


0:13:38.1 DS: Are you counseling people that do not have germline testing ever, or is germline always part of it when they see you? 


0:13:46.4 DS: No. Occasionally, I'll see someone who's already had germline testing. Often in that situation, I'm still doing some behind the scenes assessment to make sure that the testing they already had was comprehensive enough, for example. And then sometimes the oncologist, they didn't need germline testing, and so they didn't refer them to genetics, but they had so many questions after the fact about their tumor result, that they just asked if they could speak more to somebody about it, and so I can sometimes help in that way, too.


0:14:19.3 DS: Yeah, yeah. And a lot of the patients you're seeing are almost all of them ovarian cancer? 


0:14:27.5 DS: For the thematic testing, usually. I see a fair number of endometrial cancer patients, too. The sort of testing algorithm and process is quite different for them, though. And they usually start off with at least mismatch repair screening of their tumor. And so we're starting at a different kind of entry point with specific thing.


0:14:51.2 DS: It's very interesting. So how do you work with clinicians overall that maybe you're not as intimate with in clinic on a day-to-day basis? 


0:15:01.5 DS: Yeah, I think somatic testing has really opened the door for more communication about that. And we often get questions about or just even have a process to routinely help them screen their somatic test results for the purpose of determining whether or not some germline testing should be done in follow up. So these are patients that we wouldn't have seen otherwise and that we didn't help with this somatic testing, but if they have, for instance, a somatic BRCA mutation, then they should have germline testing. And so we'll kind of flag that for some providers who've requested our consult on that. Or even behind the scenes, if they're sort of new to the somatic testing space and wondering how to vet some offerings over others, we can sort of help from a technology standpoint, too. So again everybody always says, "There aren't enough genetic counselors, we can't be everywhere," but we can at a very high level sort of help behind the scenes, too.


0:16:02.6 DS: Yeah, kinda helping the system, yeah.


0:16:04.4 DS: Yeah. And the whole deal is making sure patients have access, and so I considered that an integral part of all of that.


0:16:13.0 DS: What would you say to a genetic counselor that maybe move somewhere where there's already a full swing in process for tumor testing and they're coming into this program, probably the large expectation at that point is on the hereditary side, pearls of wisdom that you would impart on how to integrate with a team like that? 


0:16:34.8 DS: Yeah, I think that for the most part, just being really collegial and making yourself available to those teams who are doing somatic testing. They may, in truth, not need any help per se, but they may find it very valuable to have somebody there for results that are not so straightforward or results that really do have germline implications, but maybe are completely out of left field and sort of how to help the patient navigate that. And I think once you take baby steps into building those relationships, everybody will understand that sometimes they can work really nicely and make it easier on everybody, including the patient.


0:17:19.0 DS: Yeah, yeah, no, that's great. Well, thank you so much for coming on today. I think your experience in this field is highly valuable, and hopefully our audience learned some tidbits that maybe they can take back to their own [chuckle] practice for those that are out there practicing. And if you're a patient, you know that, yeah, this is... Or individual that just wants to learn about genetics know that, yeah, there's these two worlds, there's the mom and dad genetic world, and there's the tumor genetic world, and they're absolutely colliding. Hopefully, you learn from our podcast today. So thank you, Leigha, and I know you're busy, so I'll let you get back to your crazy week.


0:18:03.3 DS: Alright, sounds good. It was fun. Thanks.