Ep. 7: Genetics transform breast cancer screenings

WISDOM study shares clues about history and health, says Larissa Risty

Larissa Risty and Jacqueline Palfy having a conversation in front of podcast microphones

Episode Transcript

Jacqueline Palfy (Host): Hi, I’m Jacqueline Palfy and I’m here with Sanford Health News. Today our guest is Larissa Risty. She is a senior genetic counselor with Sanford Health. Hey, Larissa.

Larissa Risty (Guest): Good morning. How are you?

Host: I’m great. Thanks for being here today.

Risty: Of course.

Host: So, you and I have talked to each other quite bit over the past few years about the world of genetic counseling. Tell me a little bit about how you got into that field. It’s pretty new.

Risty: Right, sure. So, I was actually on an engineering track in undergrad. Really have always liked science and math and have always been where I wanted to go in a career. But after having a few internships, I realized that engineering was you sat, and you designed, and you didn’t have a lot of human interaction except for your kind of nerdy counterparts that worked with you. And I enjoyed that. But also kind of wanted a job that would have a little bit more one-on-one time with an individual.

And I actually started doing Google searches looking for things that could potentially tie that things in —

Host: What do you Google for that? “Talking to people job.”

Risty: Right.

Host: So, you stumbled onto genetic counseling as a career and it’s a fairly new field and we talk a lot in the state of South Dakota about brain drain. You know you hear about that a ton and whenever I hear that I think that’s not my company. Sanford is hiring all kinds of people in very highly skilled professions including genetic counseling. For folks who might not know exactly what that entails, can you tell me a little bit about it?

Risty: The profession in general?

Host: Absolutely. Not the brain drain. You already came back. We’re happy to have you.

Risty: Yeah, absolutely. So, genetic counseling is a master’s program first of all. So, two-year master’s with the summer in between the two academic years and you actually are trained in multiple areas of genetics with the idea then that you can come out and some individuals are kind of general genetic counselors who work in multiple different areas. The primary areas are going to be in prenatal high risk OB genetics, pediatric genetics, and then cancer genetics.

Now there’s a bunch of kind of subspecialties that are breaking off from that, but that’s kind of the three main areas that you would be trained in and you have clinical rotations through all of those. And really, it’s a profession where you are trying to take that medical information, that scientific information and make it understandable for a family. So, you work a lot with just helping them to understand what’s going on, breaking things down and helping them to think through how disease can be passed through families, how genes can impact the way that our body functions and what the result symptomology can kind of be there.

Host: We talked a little bit about how just because you might go and talk to a genetic counselor, that doesn’t mean that you have to have any kind of testing done. But this is someone who can really help you understand why you might want it and why you might not and what you do with the information, right?

Risty: Absolutely. A lot of the consults that we have don’t end in actual genetic testing. But it can be moreso information for the family about again how diseases pass through families, what their risk might be.

I specialize in cancer genetics so working through kind of if there’s been certain types of cancer present in family members, what does that mean for you? Does that put you at higher risk? Are there differences in the way that you might screen for that type of cancer in your lifetime?

So, all of those conversations can happen without genetic testing even being done.

Host: And again, this is something that tells you if you are more or less likely to get something, not if you have it. Correct?

Risty: Absolutely. So, specifically in cancer, when you carry a genetic predisposition as we call it, for a certain type of cancer, that does not mean with 100% certainty that you are going to develop that disease in your lifetime. Just that you are at much higher risk than the average person.

Host: And so then you might want to change some things in your lifestyle if you can. I mean some of those things would contribute as well.

Risty: Absolutely. That’s all part of that conversation that we have. What are the things that — what are your options to help to reduce risk as much as possible. Are there differences again in the way that you might screen for that type of cancer starting earlier, screening more frequently, et cetera.

Host: It’s pretty — what’s it like to talk to people? Tell me a little bit about like the first couple times you did this. Was it what you expected? Or — it’s such an intimate conversation.

Risty: Right. And it’s so different from patient to patient. I mean I think that’s what I really enjoy about my job. Everybody has a different personality. Everybody has a different way of understanding information. So, no consult is the same.

You can talk to sisters in two different consults and have entirely different conversations even though they are related and have the same family history. So, I think the variety and that human interaction is what I really enjoy.

Host: So, you got exactly what you wanted from your Google search. Thanks Google. So, you talk a little bit about different kinds of cancer, and I know that you work a lot with breast cancer. So, tell me what kind of testing is available and then what Sanford offers for women in that field. I shouldn’t just say women. Because can men get tested for breast cancer too?

Risty: Absolutely they can, yeah. So, Sanford has kind of a variety of different services to help families that have had breast cancer present in individuals. One of the first places you can kind of go is of course to your primary care doctor, talking about that family history and there are kind of triggers, early onset disease in a family, multiple family members that might trigger that referral to maybe either a genetic counselor to start with.

That conversation of taking the family history, understanding what’s gone on and then getting into what we were talking about a little bit earlier. What do we do about this now that you have this family history?

Sanford also has programs like our Breast Specialty Clinic. So Edith Sanford Breast Specialty Clinic is a clinic that an individual can actually have kind of her breast care centered in that clinic.

So, if she has risk factors for breast cancer, including family history, she might come — her initial consult, she would actually visit with a genetic counselor and then she could be followed in that clinic annually by a nurse practitioner who would do a clinical breast exam and just kind of keep up to date on any changes for her and her family to make sure that again, screening is being ordered effectively for her.

Host: Because of that family history.

Risty: Exactly.

Host: You know when we think about our grandparents and it’s changing, right? Like my – I’m older than maybe some of our listeners, but you might not always know what your grandmother died of. People didn’t always talk about it as much. So, you may not have any idea that some of this is in your family, right?

Risty: We talk about that regularly. Some individuals feel shy to come in and talk about family history because they really feel like, I haven’t gotten that much information from my family, I don’t really know what everybody had, and they just said they had cancer.

But I don’t even know really what type of cancer they had or what age they were when they were diagnosed, and we completely understand that. The generations before us were very closed lipped about medical information. They didn’t share quite as much in a lot of situations.

Host: And didn’t know as much. Not as much to share.

Risty: Right. So, in those cases, we just work with what we have. What you know is what you know and if you know well my grandmother had some type of cancer, I’m not sure what it was, but then I also know that my aunt on that side of the family did indeed have breast cancer at age 50.

We work with the information that we have and try to estimate as best we can what might be the best screening routine for you.

Host: So, talk to me a little bit about the WISDOM Trial. Is trial the right word for that?

Risty: Yeah, so another part of my position at Sanford is actually project manager for the Athena WISDOM Program. And the Athena program is actually a clinical program that’s trying to identify women who might be at increased risk for breast cancer.

So, on that side of the program, women actually as they are scheduled for their screening mammograms at Sanford are invited to fill out a breast health questionnaire. And that’s electronic through their email. So, they can do it on their own time, on their own device. And the answers to those questions then kind of help us to identify some of those women who might benefit from genetic counseling.

Host: What are some of those questions that are on there?

Risty: A lot of the hormone history for the woman. So when did you start your menstrual periods, have you had children, what age where you when you had your children, have you gone through menopause, have you been on hormones? So, those types of thing because we know our hormone levels can have an impact on breast cancer risk.

Family history. So, how many women are there on each side of your family and which of those women have had breast cancer if any, what age were they? And then also your own breast health history. So, have you had breast biopsies for any reason? What were the results of those breast biopsies? And collecting information in kind of those three general areas can help us to identify those women who might be at increased risk.

Host: And then once you go through that and you join the trial or become part of the trial? I don’t know what the right word is for that. Then what happens?

Risty: Yeah, so on the Athena, on the clinical side, what happens is actually your answers will trigger — we have kind of risk thresholds built into the system and will trigger if you kind of meet any of our thresholds for somebody who may be at higher risk for breast cancer.

And if you are, then what will happen is you will actually receive a letter in the mail from our Athena staff outlining that we’ve identified that there may be some risk factors for breast cancer there. And then one of our staff members, one of our nurses will actually call you and have a conversation with you over the phone just about what some of those risk factors were that were identified and offer you clinical resources like genetic counseling or that Breast Specialty Clinic we were talking about earlier.

So, that’s the — kind of the clinical side of what I do. And then WISDOM that was mentioned a little bit earlier is part of some of the research that we are doing in breast cancer. So, it’s kind of a cool trial because instead of being a treatment trial, it’s actually a trial to kind of look at that big question that everybody has, how should we screen for breast cancer. So, there are kind of conflicting recommendations out there.

Host: I feel like they are changing all the time. I never know what’s what.

Risty: Yup for when women should start with breast cancer surveillance and how often they should have breast cancer screening. And so WISDOM is trying to look at that question and the way that they are doing it is women 40-74 are eligible for the trial as long as they haven’t had a personal history of breast cancer and they are doing screening for breast cancer.

And what ends up happening is you fill out kind of some different questionnaires that have to do again with your hormone history, family history, kind of the same type of risk assessment type questionnaires. And then there’s also some other information that’s used to try to help to give you a risk assessment for breast cancer within the trials.

So, some of those things are actually your breast density. So, there’s a lot of talk recently about fatty versus dense breasts, how easy they are to image and if that means any higher risk for breast cancer. So, breast density is part of the clinical trial.

Host: And is that one of the things that WISDOM is trying to determine is if that matters?

Risty: Yeah, I think it’s kind of not the main goal of the study but I think this study is really cool because what’s going to end up happening is we are collecting a lot of information on a lot of women and I think there are going to be a lot of additional questions, research questions like breast density and how that might impact breast cancer risk that can come out of this trial, even though it isn’t in the original hypothesis, right?

Host: So, it’s really more of an informational and screening trial than a treatment trial. I think that when the public hears clinical trial, they picture a mouse on a treadmill kind of thing.

Risty: Exactly, yeah. And so what happens is with WISDOM, then the subset of women that are actually in the personalized arm, which means you will get a personalized risk assessment for breast cancer, will actually also do genetic testing.

So, they do that through a saliva sample at home. They don’t even have to come into the clinic for that. And that genetic test result in addition to the clinical information that we were just talking about is used to kind of give them an overall risk assessment for breast cancer.

And once we have that risk assessment, then they are actually assigned to what we call in the study of screening bin. And the screening bins could be screening every other year; so that would be a little bit less screening than a lot of women in our area are doing. But about on par with what a lot of women in our area are doing as well. There are a lot of women out there who kind of come in every other year so, that would feel very normal to them.

Another bin would be annual screening which is again, kind of what’s recommended in general from primary care. So, a lot of women are used to hearing that type of recommendation. And then also, you could be kind of identified as maybe one of our higher risk women within the WISDOM trial and could be asked to be coming in every six months for screening. And that would alternate between a mammogram and a breast MRI. And then the premise of this study is we would follow those women for approximately five years and see: Are they sticking to that screening plan and are there any results?

Host: And was that the right path for them?

Risty: Exactly.

Host: So, we don’t have a ton of time left but I just want to make sure that we are able to tell our listeners that you can change your mind at any point about being involved in a clinical trial and there’s no cost to you as a participant.

Risty: Correct. We are currently enrolling and actually with the WISDOM clinical trial as well it’s kind of a cool study because it’s flexible in a lot of ways. So, if a woman comes into the study and is told to come in every other year because she doesn’t have a ton of risk factors for breast cancer but she’s kind of uncomfortable with that.

If she is still planning to have that annual screening mammogram, she doesn’t get booted from the study. We are still collecting data on her. She’s screening a little bit more frequently than the study had recommended for her, but her data is still being collected and she’s still contributing to that research study.

Host: Absolutely. And I just want — I always want our folks to know that they have — there’s a huge set of patient rights and that we are always happy to talk to them about whatever those are and that anyone who enters into a clinical trial doesn’t receive less than the standard of care.

They still get whatever the recommendations are but sometimes, something else in addition to that. That can help define what we do in the future. So, if anybody wants to find out a little bit more about the WISDOM trial, instead of maybe giving out your personal number, where should we send them to?

Risty: Actually, the Edith Sanford website has right on the website an area where you can click if you are interested in the WISDOM study. You can read a little bit about the study and then there’s a button to click to enroll.

Host: Absolutely. Thank you so much for coming on today to talk with us.

Risty: Absolutely. Thank you.

Posted In Cancer, Genetics, Imaging, Innovations, Research, Specialty Care