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SARA: Okay, welcome back to the Positive Gene podcast where we empower and inform individuals navigating hereditary cancer risk. Today, I am joined by Dr. Marleah Dean Kruzel, an accomplished scholar, advocate, and communicator dedicated to bridging the gap between complex medical information and personal empowerment. It's a great fit for our show. Dr. Dean Kruzel is a professor of health communication, and her work has been featured in numerous academic journals, podcasts, and media outlets.
Her personal previvor story was highlighted as part of the CDC's “Bring Your Brave” Breast Cancer Campaign, which focuses on raising awareness about breast cancer risk in young women. She's also made a tremendous impact by creating materials and storytelling resources that empower individuals to advocate for their health. We're gonna explore her expertise, her journey as a previvor, and how she's helping others turn health risks into a path of resilience and informed decision making. Let's dive in.
Welcome to the show, Marleah.
MARLEAH: Thank you so much. I'm excited to be here.
SARA: Yes, I'm excited to have you here as well. So let's jump right in. We have a lot of information to cover in today's episode. We're gonna be focusing on communication, bridging the gap in health communication, and that is your area of expertise. And so I am so glad that we connected and that we have an opportunity for you to share how folks that listen to the show and their family members and those that are impacted by hereditary cancer risk can have some tools in their toolbox to be able to effectively manage their risk in terms of communication. So let's jump right in. Could you start by sharing a bit about your journey and what led you to this field?
MARLEAH: Yes, absolutely. So when I was eight years old, my mother found a lump and it was a tiny lump. It was barely even noticeable, but that started her diagnosis with breast cancer. And I watched her undergo breast surgery and then chemotherapy, radiation, and then later a prophylactic mastectomy on the other side and reconstruction. So this was 1997, so a little while ago. But after that, she was 38 years old at the time. And then two years later, my mom's younger sister was diagnosed with breast cancer as well. And it was at that point that we started to look in our family tree and we learned that my great grandmother died of breast cancer, probably around in her early 30s. So this led my mom to undergo genetic testing a little bit later.
And then when I was 25 years old, so over a decade ago now, I tested positive for an inherited mutation in the BRCA2 gene, just like my mother, just like my aunt. And so those early childhood experiences, they really propelled my desire to give back to the medical community who saved my mom's life. And so when I tested positive, it was around the time I was completing my PhD. And so I decided I really wanted to do research focused on not just understanding, but also improving communication of genetic risk information between healthcare providers, clinicians, patients, and their families.
SARA: Wow, so as I mentioned in the introduction, communication can be very personal. And in the case of hereditary cancer risk, and really the general topic of cancer can be a difficult topic. It can be very complex. There's a lot of nuance, emotion. And so, and when we're talking about managing our health risks, my question to you then would be, why do you think, I mean, we'll just dig right into the communication element here. But why do you think effective communication is so crucial for individuals with hereditary cancer risk?
MARLEAH: Yeah, absolutely. I think communication is kind of the most important thing in so many ways. I mean, I'll start from a research perspective. So we know from research that open, effective communication can impact patients' health outcomes. It can decrease individual stress levels. It can help them manage an uncertain future, very relevant for hereditary cancer risks. And it can even promote psychosocial well-being. But apart from that, in terms of a more personal perspective, I think communication is important because it's the mechanism. It's the way in which we not only learn and understand about our own inherited cancer risks, but it also helps us cope. It helps us cope with living with these risks, right? Talking to our family members, talking to our healthcare providers, building a social support network, right? And then I think, too, communication is also important because by sharing that genetic risk information with our family members, or maybe even on a broader scale like you do with this wonderful podcast, right? We can really save people's lives, and that's a beautiful thing.
SARA: Yeah, absolutely. Okay, so for today's episode then, you touched on a few of those key stakeholders, I guess you might say, in the communication aspects of living with hereditary cancer risk. You talked about healthcare providers. You talked about your family. We talk about communicating outside our broader community, our friends or our circle.
Or one element that we're gonna speak to today that's a little bit deeper into the relationship side of things is in romantic relationships for people that are considering starting a family, for instance. So we will touch on those three areas for today, but I do foresee us having future conversations down the line, because this is a big topic. And I'm sure we'll get some questions and really interesting feedback on this, because I do think this is really an important topic. And I hope folks walk away today after listening to this with a new perspective on how they will approach conversations with their healthcare providers. Maybe if they were reluctant or hesitant to share with their family, you can give them a few things that they can talk through with that. I have, for instance, that I will share. And then in addition to that, again, on the romantic relationships of navigating genetic risk with your partner.
So we'll do the deep dive into these three and anticipate more in the future. So let's go ahead and get started by talking about our healthcare providers. So advocating for yourself in a medical setting, it can be really overwhelming for some folks. I talk about this actually on a recent episode. And I think either if you can't have somebody there with you, sometimes it can be difficult to ask for additional testing, or boy, I'm not comfortable with that screening or the frequency of that screening, whatever it may be.
So maybe you can talk through what are some challenges that you're aware of, have experienced with people you interact with, and what are some practical ways that we can prepare better for our appointments and feel more confident asking the right questions?
MARLEAH: Yeah, I personally experience this when I go in for my own increased surveillance appointments. And I have a PhD and I still get overwhelmed, right? So I think this is really important. So I think the crux of it is being an empowered patient, right? So what does that mean? And part of that is asking questions. But I think it's a broader perspective in terms of actively participating in our interactions, right?
And we know from research that when we engage in specific, what I call proactive communication behaviors, research indicates that we have better health outcomes and we have more satisfactory experiences.
So in terms of challenges, I think it's first important to acknowledge that we can be overwhelmed in the situation, right? So being aware of what happens when we get overwhelmed and everybody's a little bit different. Is it emotional distress? Is it physical shaking or sweating, right? So what are things that we can do to kind of offset that? Maybe it's also from an emotional perspective. You know that when you go see a clinician, when I sit there, I remember sitting there with my mother, right? And so that brings up emotions too. So I think number one is writing down questions before and bringing them to the appointment. Now, that could be a hard copy. I oftentimes keep like a little patient journal and encourage my students to do the same thing so that when they're on their everyday life, they can jot a few notes down. We can do that now with our phones, which is great and probably a little bit easier.
But then I think when we're in the clinical encounter, it's not just asking those questions, but it is confirming that we understand what's going on. And healthcare providers are taught to engage in what's called the teachback method, so they'll ask patients to repeat back to them what they understand. And that's a great strategy on the physician side.
But one helpful technique that we can do on the patient side is, it's called the Ask Me 3 model. And it basically provides some structure for how you might collect information and process it in a consultation. So in every visit, it teaches you to ask three questions. What's my main problem? What do I need to do now? And so that's so that we can enact it when we leave the consultation. And then why is it important for me to do? And I think that “why” is really important too, because then it kind of starts to sink in in terms of connecting what the physician is saying with what's my next behavior.
And then I think another technique that's really helpful is agenda setting. And this is something that a healthcare provider and a patient can do together. But basically it means you come into the consultation, maybe you have some really important questions that you want to ask. And you basically tell the provider, I know you're busy, but there are two things that I really want to talk about before we leave. I don't care when it is, but these are the two questions. And so then it's kind of agreeing before the consultation begins, so that the physician knows you really want to answer these questions, but they can also then manage their time, which of course we know is a difficult aspect of any consultation as well.
SARA: Indeed. Yes. Wow, those are great tips. I was writing them down because I'm definitely going to want to refer back to this. And I think this will be a great graphic to share with my audience. So thank you for that. I heard:
writing down questions ahead of time,
confirming we understand and using the Ask Me Three, which is your main problem, what to do now and why important. I think that's awesome.
And then agenda setting. So agreeing before the appointment starts when you will talk about the two or three things that you have to make sure you cover in that appointment.
Awesome. Thank you for that. That's great.
MARLEAH: You’re welcome.
SARA: So you've done a lot of research on patient provider communication, and I'd love to hear some evidence-based tips on building a supportive and collaborative relationship with health care teams. I know for me personally, I am learning and I am building, you know, after I had been in this journey for a couple of years, you start to know how your health care providers, sort of what their approach is and their style of communication and what office you're going to get to maybe the nurse before you're going to get a chance to have a connection with the doc. There's so much at play here.
So I think this is a great opportunity for people, not just in terms of like preparing for our appointments and self-advocating, but really more information on digging deeper in our relationship with our health care teams. What are some insights that you can share there?
MARLEAH: Yeah, I think that's a really great question and particularly important for the hereditary cancer space, right? Because like you're saying, we're oftentimes navigating and managing a bunch of appointments, whether that's related to cancer risk management or, you know, maybe a cancer diagnosis too. And what I hear in your experience is this idea of continuity of care, right? So the longer we're with a health care provider, you're absolutely right. It's like being in a relationship with a partner, right? Or a family member. You get to know them, what their natural communication style is. And so that can be really helpful to find someone who you jive with, who fits the level of information you want and the type of information you want. A lot of providers are using electronic health records and different types of communication mediums. And so, you know, if that's not kind of your thing, maybe trying to find another doctor that might fit that better.
But I think, you know, in terms of strategies for building that supportive collaborative relationship, I think we can't forget that - we, the patient - we are the link, right, for these team members. So our health care providers, you know, we might be able to ask them questions. We might be able to probe. We might learn the system at large. But ultimately, you're your best advocate, right? And of course, this can be overwhelming. And I'm conscious of that. But physicians, they might be the expert in medicine, but we know our bodies best, right? And so I think two things that I have found helpful in my research, but also as a patient, too, is to negotiate decisions, right? So sharing your preferences for decision making with your health care providers. Do you want them to make the decision stating why that's important? Do you want to make the decision stating why that's important? Do you need your plus one, your partner to be there in that conversation, too? So knowing that you have some autonomy there.
And then I think, too, when we're trying to build relationships, it's not just all about why you're there in the encounter. It's trying to learn about the health care providers, too, right? Over time, they have families, they have lives, they're oftentimes constrained by the health care system. And so keeping that in mind, too, can kind of help build relationships. So those are a few things I'm happy to follow up.
SARA: Yeah, I think those are great elements to be aware of. And you're right, their style of communication, whether it be through electronic means or they're great face to face. And I know, hey, bedside manner is really important, but it's not perfect, right. And so, yeah, there's other ways that you can connect with that position. I did find oftentimes even through my GP, it's sometimes connecting with them by the app. They get back to me a lot faster than they do via phone call.
MARLEAH: Exactly, exactly. So it's kind of like learning the system and what works best for them. And, you know, there's usually someone within the office. It might not be the physician, but it might be a nurse. It could be a nurse navigator, right? There's there's usually someone who is very proactive and on top of things and they can kind of become your your go-to person, which can also be helpful in terms of supporting you outside the clinical encounter, which is where we live our lives.
SARA: Yeah, absolutely. They take the whole person into context.
MARLEAH: Exactly.
SARA: So now oftentimes people may have difficult encounters with their physicians. Maybe they're feeling dismissed, misunderstood. There's some confusion, whatever it may be. So what advice do you have for individuals who may have those encounters and maybe what specific ways they can address this while still being their own advocate?
MARLEAH: Yeah, absolutely. And I think that's very common, right. Is is we're in a clinical encounter and either because the physician doesn't have the time to talk to us and we feel misunderstood or a question that we really a burning question that we had gets dismissed. Right. Because because of constraints. I think one maybe specific example that is helpful with in terms of your question is if we think about online health information or finding information on social media, it we know that physicians are often a little bit resistant to talking about information we find online, which is understandable, right? Because they want to make sure it's tailored and it's not misinformation, right?
However, from a patient perspective, we live our lives outside that clinical encounter. And so finding people with similar who are in similar situations who can understand us from an emotional perspective is really important, too, as well as it connects us in so many ways. And so we learn a lot of new information that we wouldn't have had access to 10, 20, many years ago.
So all of this to say, what are some helpful tips here to help facilitate maybe when you're feeling dismissed or misunderstood? Again, I think being prepared is really important, but it's not just, you know, being prepared. It's being able to tell the physician or the health care provider why it's important to talk about, for example, online health information. Why, you know, acknowledging that time may be constrained in that medical consultation, but that it's really important to talk about this information for this type of a reason.
And then another another strategy is when you are in the consultation, like as an example, script, maybe if it's helpful for some people, right? So saying, saying like at some point during our interaction, kind of going back to that agenda setting. Right. I'd really like to talk about some information I found online about meditation. And I think meditation might help me cope with my recent cancer diagnosis or something like that and then explaining why that's important. So then the physician can kind of connect why that is important for them.
Another thing that maybe a last strategy here, so I don't keep going on and on is there's some research about when we talk to health care providers, particularly, for example, about online health information, we want to do it in what we call a face saving way. So this means appealing to the doctor as an expert.
So if you approach your physician saying, you know, I understand I found this online. Here's what I did. These are the kind of websites where I went. But I want your expertise in terms of is this relevant for me? Then they're more willing to talk to us about it and consider it. So that can be a useful strategy, right. And actually, research has found that when as patients we appeal to doctors in a face saving way, there's actually higher satisfaction, not just for us as the patient, but also for the doctor, too. So that might be a helpful strategy for someone as well.
SARA: Yeah, I mean, honestly, I think that's a great strategy with really any expert, right?
MARLEAH: Yeah, absolutely.
SARA: You know, in terms of communication, you wouldn't be coming to them if you didn't trust, maybe, that they had the information that you need for whatever decision that is that is that you're trying to make. So I love that. That's a great tip.
OK, let's switch gears a bit here from the health care provider to family and really opening up about genetic risk, maybe sharing our genetic risk information with loved ones. We know that it can be an emotional and maybe sometimes, challenging. So share with me in your experience. You know, and I've heard instances from people that I know and people that follow the show and even in my own personal experience. But I would love to hear what are some of the biggest obstacles that people face when discussing hereditary cancer within their families?
MARLEAH: Yeah, so this is something that's been studied quite a bit since cascade testing in terms of sharing genetic test results. And in terms of challenges, I mean, there is one challenge is simply - how am I going to share it, right?
Another challenge is, you know, I'm not very close to my family members, so am I the right person to share it? Another challenge is, you know, I'm going to assess if it's relevant for the family member and maybe I might be wrong. So that's another thing.
But I think one of the biggest obstacles to sharing is worrying about family members reactions. And this is completely understandable because I think sharing genetic test results can be a hard decision, right? Because you don't know how your family members might react, particularly if you're not close to them, right. They they might react positively, but they could also react negatively and completely push back or shut down. And then sometimes maybe they're just unsure or they don't show any interest at all. So if you choose to share and one of your family members gets angry, that might just be because they feel like you're stepping on their toes. But you also might save their life.
So I would encourage people, you know, when you're approaching sharing genetic test results with family members, that maybe a family member might react negatively, but over time they might appreciate the information. And then, too, if if you decide that it's not your place to share, you don't feel comfortable, you don't have the relationship, you don't have the communication medium to do so, then find someone in the family, find somebody else who could maybe take on that responsibility or who would be better poised to share with their family member.
SARA: Yeah, yeah, that's a big help. I think if you have somebody who could maybe who's somebody who has a particular role in the family, that the people are all we always listen to that particular person, because it could be cultural, it could be knowledge base. There's there's lots of reasons. So I guess then I would ask - you gave a few tips there in terms of how you could manage those conversations. But in the instance that they do have that fear, disbelief or resistance, which are all three very different emotions in handling this, I know there's a degree of the relationship, I think is at play here. But what are some practical ways that folks could manage those conversations when they do have that resistance and pushback?
MARLEAH: Yeah, I think anticipating that it could be a possibility is the first thing. Right. So if you are if you know that maybe a cousin or an aunt or something like that, you know, maybe they had a family member pass away from cancer, right? So, you know, kind of anticipating. And if if we anticipate ourselves, it helps us better manage in the moment. I don't want to say detach ourselves, but prepare us for the conversation at hand, right.
It can be helpful to in these challenging conversations to not just decide to share maybe via phone or text message or I know some patients and research participants who's shared via email even right or or Facebook messenger. But you can also practice what you say, too, because when we practice, it gives us confidence, right. So talking through exactly what you want to share and how you might tailor it to that situation that you might be expecting. And then I would also say give yourself some space after the conversation to kind of sit in the emotions or have someone you can go to in the family or maybe a friend and say, hey, I'm having this conversation with somebody. I anticipate that they might be resistant or they might react in anger or disbelief. Can you check up on me after this conversation? So then you have kind of this support prepared for you and maybe not do anything else for a little bit so you can kind of process your own emotions in that in that experience.
SARA; Yeah, I would imagine and one of the things that I'm hearing from you is a bit of empathy going into that conversation, right? So what would be some reasons why people would be so resistant or fearful? I mean, based on your research, what are some of those instances that you can share?
MARLEAH: Yeah. So I think, you know, one thing that I've found in the hereditary cancer space is oftentimes information like you have, you know, in my case, BRCA2. It's scary and it changes everything, right.
So I have a brother. He's given me permission to share this information, but he's four years younger than me and he has not undergone genetic testing. And and that is because he doesn't want to know, doesn't want to know yet. And that's it. That's a coping mechanism. Information avoidance is a coping mechanism. I think oftentimes we assume everybody wants more information and more information makes them feel empowered, which is true, I think. You know, and research backs that up, too.
But there's also people, you know, when you avoid information, that's a coping mechanism, too. So not not dismissing that. And I think, you know, when that happens, that kind of leads to another communication style or approach that can help with these conversations. And that's following up with family members.
So in the case of my brother, right, he knows my inherited gene mutation and my mom's for over a decade now. But every so often I follow up with him, you know, I might put it in my calendar to follow up or at Thanksgiving, I might, you know, say, hey, I found this information or I just gave a talk about men and breast cancer. Do you want to talk? So this idea of following up in ways that fit your relationship, I think can be helpful.
SARA: Yeah, that's very helpful. I think if we all come into this scenario of learning our risk with all sorts of perspectives and I think knowing that what possibilities may lie in those relationships and those interactions with people is helpful. But you may not have had that perspective or that experience. So I think hearing from you what potential responses might be is going to be really helpful for our listeners.
So now say we don't have the family support and we may be encountering this journey on our own. What advice do you give for people who might feel isolated, maybe due to lack of family support? What are what are some ways that they can manage that?
MARLEAH: Yeah, absolutely. I'm so glad you asked that question because you're right, not everybody has, you know, support network. I think, you know, maybe a thread that in our conversation here is number one - just acknowledging that because of that, you know, emotions are going to be a part of the journey, right. Our emotions kind of ebb and flow based on our situation. But if you don't have family members or maybe friends that you feel comfortable confiding in, one suggestion is to seek the assistance of mental health professionals or counselors or medical family therapists. Right. Having someone who can have that conversation in a safe space. So that could be one suggestion.
And then another suggestion, as I know you've talked about on your show before, the organization FORCE, you know, they offer different types of support networks. But there's another one for cancer more generally, and that is called Imerman Angels. And this provides free, personalized one-on-one support, not just for previrors like myself, but also survivors, also caregivers, also cancer fighters, as they say. So those can be, you know, a possible couple suggestions.
SARA: Yeah, that's great. I'm aware of Imerman's Angels, but I will make sure that I share that information in the show notes. I think that would be a great resource for folks that may be going through this journey alone.
I love the suggestions…I think, again, you're giving us tips on things that we really could be incorporating into our daily lives.
MARLEAH: Yeah. Yes, yes. Yeah, communication is the way in which we, you know, function, right? That's the way in which we live.
SARA: Yeah, absolutely. So some good nuggets here in terms of just navigating life as human beings. So appreciate that.
Okay, well, let's switch to navigating genetic risk with our partners. For those that are still dating, how would you recommend bringing up genetic risk and the possibility of hereditary cancer in a new relationship? Like, what tips would you have to help make these conversations more manageable?
MARLEAH: Maybe for people who are still dating or they haven't found a romantic partner yet, because I think that's important because we know from the research that, for example, with BRCA positive women, they report sometimes delaying or even avoiding disclosing their inherited cancer risk because they fear rejection. And I was on a panel with a colleague. Her name is Khaleesi Logan. She's a genetic counselor and clinical genomic educator. And we gave a talk for FORCE in 2022 when it was a virtual conference. And we talked about disclosing inherited cancer risks with partners. And she talked about her master's thesis. And what she did was really interesting. She surveyed potential partners about their attitudes towards dating BRCA pre-vibers. And she found that 80 percent of those participants shared that the best time to disclose their genetic, their positive genetic test results was when the relationship became serious. And so that maybe alleviates a little bit of concern or worry about having to disclose it right away. And then she also had participants rank the importance of information at the time of that disclosure. And the most important thing to potential partners was what are the specific cancer risks associated with the specific inherited gene mutation, in this case, BRCA. And then also possible side effects for risk-reducing surgeries. That was a little less important, but was there as well. So what we did in that talk for FORCE was we kind of shared some practical advice for dealing with dealing with this. If you're single or you're starting to be in a serious relationship. And the first thing we said was, you know, delaying that disclosure until the relationship is serious. That's completely acceptable and seems to be appropriate for partners. But we also know that there are a lot of emotional aspects around risk-reducing surgeries. Right.
So research has found that BRCA positive women who have had surgery, they have discussed feeling maybe unattractive or insecure due to their changes in appearance. And that can even affect their outlook on dating or even entering into a new relationship. But there's also a few studies that have found that current partners of these previvors, they have the same level of attraction to their partners after risk-reducing surgery. And so that can be positive and encouraging as well. So those are a few things that I just thought was really great in her thesis that I wanted to share with your listeners as well.
SARA: Yeah, yeah, absolutely. For many, introducing your risk, your mutations, it can be intimidating. I think it could be one of those, another difficult conversations potentially. Introducing this, especially new in your relationship, but even later as you're maybe talking through, you know, family planning and different things like that. So in your view, what are some ways that we can begin these conversations with partners?
MARLEAH: Yeah, this is, I'm so glad we're talking about this because I think this is oftentimes forgotten or not discussed as much. So my research and others have found that, particularly with Previvors, that oftentimes when we're talking about family planning in this context, right, that these conversations happen haphazardly. So you're randomly cooking dinner, right, with your partner and you start, you know, having a conversation or maybe you're driving in a car and you see an advertisement for something or a friend announces a pregnancy, right? So they kind of come up haphazardly.
So one specific strategy that I've utilized in my own personal journey, but also in an intervention I've developed for Previvors and their romantic partners, is to schedule a time to have this conversation. So to begin the conversation, you have to make dedicated time for it. And so without any distractions, so saying, you know, Thursday night at 8 p.m., we're gonna, you know, sit down with a cup of tea or a glass of wine or whatever it is. And, you know, we're gonna talk about, and I'm gonna listen to each other's perspectives or preferences or just desires about, you know, building our family now that we know about our hereditary cancer risks.
And then, you know, when you're in that conversation, as I said, I've created this intervention for couples. And we use this communication strategy called communicated perspective taking. So it's kind of similar to perspective taking, right? You're trying to walk in somebody's shoes. But it's this approach where you go a little bit farther and you actually try to convey to the other person verbally and non-verbally that you've understood their perspective when they share it.
So, for example, paraphrasing, right? Repeating back what they've said to understand, you know, I understand that the most important thing to you is that you don't want to pass on your inherited gene mutation to future children. Is that correct? Or confirming their identity. You know, what I hear here is that you really want to be a mother. That's really important to you. And you want to try and have children within the next five years. And then you can also do this non-verbally, too. You can nod. You can have eye contact. You can create shared space physically. But all these things kind of help demonstrate that you understand that you care about them. So that might be a helpful strategy when you're in that moment.
SARA: Wow. Those are great tips. All right. So communication, as we mentioned, is even more complex when it involves family planning and fertility. So you just talked about like kicking off that conversation. But then you get to the point where you need to start discussing the potential risks and decisions, knowing your predisposition, your hereditary cancer risk, family history, taking all of those things into consideration. You know, what are what some guidance that you can offer to couples that are facing these challenges?
MARLEAH: Yeah. So one thing that I was surprised about in a recent study, which I think really speaks to this, is when we talk to couples, so Previvors and their romantic partners, about how they were communicating about family planning now that they knew their inherited cancer risk, they would say things like, oh, my partner and I are on the same page. Yeah, I know what my partner wants in terms of family planning. But when we really dove deeper in terms of probing a little bit more, in these interviews, couples, they said they were on the same page, but then there were vast differences in terms of how they wanted to build their family. Right? So were they interested or open to surrogacy or adoption or in vitro fertilization with PGT? And then when they wanted to build their families, right? When we're talking about inherited cancer risks, you also have to consider, you know, prophylactic surgeries, if that if that fits you, right?
So in terms of some guidance, one thing that my participants have talked about is listing out the desires and preferences individually. So separately. So, you know, this is what I want. Rank order it even if that's helpful and then coming together and talking about like, why do you want that? Why is that important to you? What are some potential risks if we choose that? Do we have the financial bandwidth for that? Are there different types of programs that we could apply for or, you know, support support systems that we can put into place to kind of help us?
And then the second strategy that came up in that study is what our participants called a plan A and a plan B. And so they said that what was helpful in kind of these challenging conversations is, you know, once you kind of shared the preferences and desires and kind of came up with a, “game plan”, so to speak. Kind of having a plan A, this is what we'd like to do together, but also having a plan B really helped to assist with some of the uncertainty and ambiguity that might happen in these conversations. Right. Like I said, maybe you don't have the financial resources to do in vitro fertilization and PGT, or maybe you do and then, you know, there are you don't get as many embryos as you wanted or or maybe adoption isn't possible because you travel a lot. Right. So I mean, there are just so many facets there. And so by having kind of a plan A and a plan B, that plan B kind of gave some comfort to the couple, which enabled them to kind of say, OK, well, if this doesn't work, we have a backup plan that we've agreed on. Does that make sense?
SARA: Yeah, 100%. It really does. And I think one thing that, you know, we... I want to figure out how I want to to to preface this next point... If people choose or if people are struggling with having their own biological children because of their risk. And I know you're not a genetic counselor, but you do work in a lot of this space and people having to navigate the decision of whether having their own biological children, I think assessing that risk. Say it is a BRCA or it may be less riskier genetic mutation, I guess.
MARLEAH: More of our low or moderate penetrant genes.
SARA: Yes. So it's I guess if I were in that position, so I have Lynch syndrome and I have checked to I just found out a few years ago and I have two kids that are six and eleven. I think about 15 years ago, if I had done this level of genetic testing and and found that out, would it have changed the course of my life? And I don't know because, you know, it's it is a very difficult decision for people. And I think having conversations with genetic counselors or whatever it may be, I mean, maybe that's what I'm trying to get out of this next question statement.
MARLEAH: I would probably agree that in this context, we should say, like, speak to a genetic counselor to help you assess your risks. I mean, you can definitely talk to your romantic partner to get a sense of what their preferences might be. But in terms of advising you on what might be appropriate, given your inherited cancer risks, I think talking to a genetic counselor is the best option.
SARA: Yeah, I would agree. I mean, I when I do think about, you know, those decisions for me personally, I don't know... I don't know...
MARLEAH: Well, and it wasn't relevant for you, right? I mean, I think about, you know, there's survivor's guilt, right? Or I think about many conversations I've had with my mother. She hates that she has passed on BRCA to me, right. That that wounds her. And the fact that her daughter has made her career about BRCA and communication, I think brings her a lot of joy. But I also think it brings her pain, too. I know it brings her pain. And so and that's OK. Right. We can sit in that together.
But what hasn't happened, you know, hasn't happened, right. You didn't know about your inherited mutation back then. And, you know, I'm sure glad that my mom had a child and she didn't know about it because I wouldn't be here and my children wouldn't be here, right? So I think there is something to do with legacy there as well.
SARA: You really do put that in a perspective because likewise, my journey has brought me to develop this podcast. And like you, look at the lives that you may be impacting each time you go out into the world and you share the hope and the optimism that knowledge is power, that you can find ways to navigate this process with some peace of mind.
MARLEAH: Absolutely. Yeah, I think there is some definitely level of it has helped me to to to turn, you know, testing positive for BRCA to into something that's bigger than me.
SARA: Yeah, yeah, absolutely. Well, we're certainly grateful for that.
MARLEAH: Well, thank you. And likewise for you, too, with this podcast.
SARA: Yeah, thank you. Well, I think that, you know, as we get to wrapping up here, I would like to know if there's any key takeaways or maybe final thoughts that you want to share with our listeners that are navigating these communication challenges. Is there anything additional that you'd like to share that we haven't discussed?
MARLEAH: Yes, and I want to share my life mantra. And this really comes from my mother, wise words from my mother.
So when I tested positive for BRCA2 she said, Marleah, you make the best decision you can with the information you have at that time. And I thought that was so helpful because we know we live in a world where information is changing. It's evolving, right? As we learn more information - NCCN guidelines have just been updated, which is wonderful. As more of us as patients participate in research and as researchers do more research, we learn more things and that's going to help us in terms of making good decisions. But it also can be overwhelming, too, right, because you don't necessarily know what's coming.
And so because we live in this uncertain world, that's unpredictable, it's complex, it's ambiguous. I think those words - I listen, I hear those words from my mother over and over in my head, right? You make the best decision you can with the information you have at that time. And I think that gives comfort. I think it gives space to have maybe some difficult emotions as well. And it's just very encouraging. So I hope it'll be encouraging for your listeners.
YEAh, absolutely, that’s very helpful. again, I think you’ve given us another life lesson element here because even back going back to our conversation around what I have made a different decision on having children. No, I made the decision that I had at the time, you know. So it's great advice. So thank you, Mom to Marleah.
MARLEAH: Yes, I thank her all the time.
SARA: All right. So where can our listeners find more information about you, your research, resources and ways to connect with you?
MARLEAH: Absolutely. So in terms of social media, I'm primarily on LinkedIn - https://www.linkedin.com/in/marleah-dean-kruzel-02062128/. So I'd love to have you join. I frequently post infographics about my research or different types of talks that I'm giving.
I also have a YouTube channel where I have a TEDx talk. It talks about my own patient story and my research. So that might be of interest to some of your viewers.
And the talk I mentioned earlier with Kalisi Logan, CGC, that's on there as well.
And then I also have a website. It's www.marleahdeankruzel.com. And there you can see content for patients, but also clinicians and other academics.
SARA: Well, I will have all of that information in the show notes to make it easy for people to find you. I thank you so much for sharing your story and these incredible insights today. I know I learned a lot.
You have some amazing resources for us to reach out to that you have developed over the last several years in your role. So we appreciate what you do. We appreciate your work and raising awareness and really helping to empower individuals facing hereditary cancer risk and really helping them find their voice and to navigate their health journeys with confidence.
So thank you so much for being here.
MARLEAH: Absolutely. Thank you so much for the opportunity. And I hope people reach out. I'd love to connect and continue to build support amongst us.
SARA: Thank you. All right. To our listeners, thank you so much for tuning in to the Positive Gene podcast. If you enjoyed today's episode, don't forget to subscribe, leave a review, share it with someone who might find it inspiring or find valuable information here. Together, we can continue to build a supportive community. So until next time, take care of yourselves and stay empowered.
Resources Mentioned in This Episode:
Dr. Marleah Dean-Kruzel’s TEDx Talk: How to Make Decisions Based on Uncertain Information
Health Literacy Workshop - Digital Health Information: Media Coverage and its Impact on Patients; University of Illinois Cancer
ICARE Presentation: Communicating about Inherited Cancer Risk, Uncertainty, and Decision Making
Selected Research Papers & Infographics can be found on the podcast episode transcript: www.sarakavanaugh.com/podcast
Disclaimer:
This podcast is for informational purposes only and is not a substitute for professional medical advice. Always consult your healthcare provider with any questions about your health.
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