Genomic Health Literacy in Treatment Decision-Making for Prostate Cancer - Elisabeth Heath

February 6, 2023

Elisabeth Heath joins Alicia Morgans in a discussion on a patient-centered approach to discussing genetic and genomic testing for prostate cancer. Both Drs. Heath and Morgans recommend breaking down the information given to our patients into multiple visits and more easily digestible segments rather than sharing everything in one office visit. They speak to the importance of supporting our patients and their family members in understanding germline testing, why it's important, and how to interpret the data. Dr. Heath emphasizes the role genetic counselors play in these discussions. If we position genomic information or information on somatic alterations reports as part of our workflow and communicate them in a way that is neither positive nor negative but simply informative of our decision-making, then there is no judgment or bias. Helping patients understand this is important.


Elisabeth Heath, MD, FACP, Associate Center Director of Translational Sciences, Leader of the Genitourinary Oncology Multidisciplinary Team, Karmanos Cancer Institute, Detroit, MI

Alicia Morgans, MD, MPH, Genitourinary Medical Oncologist, Medical Director of Survivorship Program at Dana-Farber Cancer Institute, Boston, Massachusetts

Read the Full Video Transcript

Alicia Morgans: Hi. I'm so excited to be here with Dr. Elisabeth Heath to talk about genetic and genomic health literacy and how we as clinicians can best communicate with patients and how patients can really take in that information and use it in their treatment decision-making. Thank you so much for being here with me today, Elisabeth.

Elisabeth Heath: Oh gosh, thanks for having me.

Alicia Morgans: Well, wonderful. So, I wanted to talk to you first about what you think about genetic and genomic data. Is this something we really have to consider when we're thinking about prostate cancer health?

Elisabeth Heath: I think we do. Alicia, we think we're getting the messaging out. Right? We talk about it. We're talking about it at meetings, on social media, but I think the word is still not a hundred percent out. For those of us who do a lot of prostate cancer, treat a lot of prostate cancer patients, then yes, I think we're all aware, but there's so many more people involved in our community. We're not there yet. And I think that's why doing conversations like this, it's just a gentle reminder that this part of the patient's care is still so important.

Alicia Morgans: Absolutely. I completely agree. And I think this is something that has really transformed over the last few years. I remember when a colleague who does more kidney cancer asked me what we were doing in prostate cancer. And at that time, of course, kidney cancer, they were thinking about VHL and other alterations that could be heritable diseases. And I said, "Well, we're not really doing anything in prostate," at that time. And maybe that was around 2015 and that's really before the area exploded. And now germline genetics, somatic genomic data, this is all something that we actually are using in clinical practice to counsel patients, to counsel families, to think about therapies.

So, it is something that's ready for prime time, and it is something that is important that we have to work into our workflows. So, as you're thinking about this, and you're thinking about, let's say, germline genetic data, let's start there, how do you communicate with patients about that? How do you support them in thinking through what is germline testing? Why is it important? And how do I interpret that data?

Elisabeth Heath: I tell you; this is such a critical topic because in a lot of ways we tend to forget about it. It's not so critical when you have other options for treatment, and luckily you and I have a lot of different options to consider for treatment for the cancer for our patients. But when you're thinking about this from a family level, from a, "Oh no, is this going to hit another generation?" That's a whole nother level of discussion that I sometimes underestimate the time that it takes to explain. And a lot of it is people are kind of ready to talk about what's happening to them, but the minute you shift and you say, "Hey, germline testing is really important. We're worried about what this means for the next generation, and then their next generation," usually I'm faced with blank looks like, "I don't understand. What do you mean? I'm going to give prostate cancer to my son?" Or they say, "Oh good news. I only have daughters, so I don't have to worry about it."

And then next thing you know, what you're hoping for, which is a quick, "Sure, no problem. I'm going to let you take the test and you tell me the results," is another 20 minutes in addition to what you started with and you go, "Oh gosh, they really don't know what I'm talking about." And then they walk out thinking, "Oh my gosh, I'm going to get breast cancer." So, you went through that whole rigamarole, and then you go, "What?" And I know they think this because I've gotten calls from primary care doctors who then have to sort of reexplain what we just talked about and sort of reinforce the messaging. And then they go, "Oh, that makes sense." And this just happened to a patient of mine where his wife, they came back in, they're like, "I told you she said you're not going to get breast cancer. I told you." And he was having a hard time digesting this info. So, I know that we all as a community have to do a little bit better in explaining that, but it's usually the time allocation in my practice that's a challenge.

Alicia Morgans: I agree with that. And I think that can be one of the hardest things for us to give up, to give time to our patients when we have such structured and very clear limitations to the time that we have with them in clinic. Do you have any advice about how to approach that conversation when you know that time is limited? And health literacy can really restrict or even science literacy can restrict the knowledge base that the patient's coming into the clinic with. Maybe they don't know what DNA is, maybe they don't know about heritable alterations. How do you approach those conversations in a timely way?

Elisabeth Heath: So, what I've decided in my own practice is that you can do this over multiple visits. I think the number one thing that happens to patients, especially if they're newly diagnosed with metastatic disease, whether it's the first time they've heard the word prostate cancer, or, "Oh no, this is 10 years later," everyone is overwhelmed. So, I always save the first visit for what are we going to do? Reassure them that there's a plan, that we know that there's a path forward. And then at the next visit, which could be a week or two later, we get into the weeds a little bit more. And I think at that point they're more receptive to listen because we love to educate patients, but sometimes it feels like a Biology 101 lecture.

And you are done at the hour and they're looking at you going, "I think you lost me about 15 minutes ago, 30 minutes ago at the beginning," and they don't even know what questions to ask. So, I always stage it. So, I always say, "We're going to talk about just the approach for treatment, so you know we have a plan. And then for the next two to three visits, we're going to figure out what else we need to do. And then for that visit, I just concentrate on what's it going to mean for you to talk about genetics, genomics, what's the difference? Ask away." And then that 20-minute visit is just for that discussion.

Alicia Morgans: I think that's great advice. I do the same and I didn't even realize we had the same approach, but I definitely do the same, especially in those newly diagnosed metastatic patients. And then bone health, other things, other supportive care things, cardiovascular health, those are also things that I kind of put in little tidbits along the way because it can be so much all at once. And so, I think that's a great way to sort of meet the patient where he is and the family where they are as you're having those conversations. When you get back genomic information or information on somatic alterations in the tumor, those can also be really complicated discussions. And the reports themselves can often be really complicated, sometimes 20-plus pages in length. How do you think through those and how do you try to explain the differences to patients when they see these mutations that are pathogenic, that might be targetable, but may or may not actually affect their family members?

Elisabeth Heath: Yeah. I think the first thing I do is I don't put a good or bad designation on the test results. I think we love to do the like, "Great news. You have a BRCA mutation." And then they're like, "That's good news?" So, I don't say anything about that. I just say, "Here are the results which show this, this and this," which most of them don't know what that means, "and I'm now going to ask for help from an expert in our genetic counseling world to really explain what this means for you and your family." And then I leave it. I don't go into some major discussion because sometimes when the genetic counselors get into it, they're like, "Well, that's not what she said." So, I just say, "They're going to be the expert in talking about these germline findings, and so you'll have a great visit with these folks and ask away."

I think the other part, then it's, "Okay, here are the results. And this is really important information. We can use this as part of treatment options for your journey. You don't need it right now, but boy or boy, is this super helpful." And then when I kind of explain it in those terms, they just see it as, "Oh, this opens up a treatment possibility." Not, "Oh, it's great. It's bad. It's good." Because people start to put a weight to that that doesn't really deserve to be there. My only other tip is because this is now sort of ingrained in so many of our patients care, try to remember to put the results in your notes. So, I created in our H&P or even in the progress note, a molecular section that says, "When you got the test, what was the platform? And what are the results?"

I tend only to put the pathogenic or likely pathogenic variants down because otherwise, the whole list is huge. Or if there's maybe one or two genes that are VUSs, I put down. And then every single time that note gets replicated, it gets put down because most of our access is not in our EMR, I have to go use a portal system. And then if you're not that person in clinic, patients are a little bit shortchanged.

Alicia Morgans: I completely agree with that. I actually have a genetic section that I have the germline genetics, I have the somatic NGS, and I take a screenshot of the report, especially if it's easy, and I plop it right in there. One of my fellows a few years ago taught me how to do that, and I find that's just a really easy way to just stick it right in there. And I don't have to try to copy anything with typing, which of course could lead to errors for me, of course. But I think that's great advice. And I wonder, and you may not do this because often this is more localized disease, do you ever use molecular testing on early-stage prostate cancer and those tests? Or have you seen patients for a second opinion where they have localized disease and sometimes they get either Decipher Biopsy or an Oncotype DX or something that they're getting on their primary prostate tissue, maybe before surgery, as they're considering active surveillance? Have you ever used genomic testing in that setting? And how do you work through those reports with patients and those results?

Elisabeth Heath: Yeah, that's a great question. I'm often asked to sort of play the middle person to weigh in whether it's surgery versus radiation. And as sort of a field where we don't really have any stake in either one, we tend to sit in the middle to weigh in on our experience. So, with that said, a lot of patients come with these tests as part of the package. And where they end up coming is like, "Wait a minute. This shows that I'm intermediate, but then this test tells me that I'm high-risk. Oh no, what does that mean?" So, we try to work through it, but it's usually in conjunction with what they're already leaning towards. So, I don't order anything extra. I don't say, again, whether this is good or bad, but if they were already on the fence and they see anything in high-risk, I say these, "Tests are approved for a particular reason. If it helps you make this decision, then use it."

A lot of the times the urologists have explained this is sort of what the story is and here's what we suggest. But a lot of people don't get the test, so then what I have is several patients that will say, "Well, so and so and my neighbor got some fancy testing and he was counseled on this, and I didn't get this testing." So, I think the thing to think about is that it's not a uniform use in local cancer. So, when they say, "Well, what do you want to do with this?" I say, "Listen, go back to your urologist and ask." So, I don't step into that field because I think there are clear experts that already are in that field that should weigh in.

Alicia Morgans: Well, and to that point, I think when urologists are ordering these tests, I'm sure that they know what they want to do with the results and how they're going to interpret them. And so, for any of us, whether you're a urologist, whether you're a medical oncologist, make sure you know what you're going to do with that result before the test is ordered. That's a tenant of even medical training that I think we all have taken home with us as a basic teaching. So, hopefully, we're all doing that when we're ordering these tests, because if you don't, certainly the results can be difficult to interpret after you have them in hand. You have to know what you want to do before you get the test. So, last piece of advice, any final word of wisdom in terms of really meeting the patient where he is or his family in communicating what can be really complicated genetic data.

Elisabeth Heath: Yeah, I think most of it is just setting your expectations. Just like we set expectations in our treatment discussion, setting expectations for genomic or genetic testing is critical. One, to offer it is one thing, but two, to know how to interpret it and not put a weight that's negative or positive so that there's a stigma to it. And I didn't really realize this until recently when a patient came in and said, "Oh no, now it seems like my family's all affected." And he really felt badly, somehow that was his fault. And maybe if I don't know, then I don't have to burden my family. And I switched it around to say, "Knowledge is power. In fact, what you know now is how to help your family."

But clearly there's still a lot of narrative that needs to be shared with all of us in the community where we really know how to articulate the results in a way that's helpful and not put a stigma, or this is sort of the new cancer, how we whisper it. It's not that. Or did you get testing? No, it's, "You're getting testing. It's going to empower you to know more, which may or may not help you, but it's still important information for you, potentially your family. And of course, your care."

Alicia Morgans: I could not agree more. This is so integral to what we do on a daily basis with the care of patients with prostate cancer, that we need to make sure it's part of our workflow and communicating it in a way that is neither positive, nor negative, but simply informative of our decision-making is so, so important. And there is no judgment or bias. Even a negative test or a positive test, it doesn't matter. This is all information important for us to know and to think about as we choose treatments with our patients. So, I sincerely appreciate your time, your expertise and your advice. We always appreciate hearing from you.

Elisabeth Heath: Thank you for having me.