Psychosocial Impact of Colorectal Cancer and Other Colon Disorders

Podcast Transcript

Scott Steele:  Butts and Guts, a Cleveland Clinic podcast, exploring your digestive and surgical health from end to end.

Welcome to another episode of Butts and Guts, everyone. I'm your host, Scott Steele, the Chairman of Colorectal Surgery here at the Cleveland Clinic in beautiful Cleveland, Ohio. And today, we're going to talk about something that maybe doesn't get as much press as it should, and we're very pleased to have Dr. Karen Hurley here with us today. She's with the Center for Behavioral Health here at the Cleveland Clinic. She's a clinical psychologist who specializes in hereditary cancer risk. Karen, welcome to Butts and Guts.

Karen Hurley:  Oh, thank you so much for having me.

Scott Steele:  So, we like to start out every one of our podcasts and kind of just get a little bit of a background about yourself. I know you came here to the clinic, I believe, in 2016.

Karen Hurley:  That's right. So, I've been here for two years. I was in New York for 20 years. I worked at Mount Sinai, Memorial Sloan Kettering Cancer Center, and then I was in private practice for a while, but all focusing on hereditary cancer risk and also cancer survivors, helping people get through the experience of having a severe disease.

Scott Steele:  Karen, where'd you grow up?

Karen Hurley:  So I grew up in central New Jersey, near Princeton, but I do have an Ohio connection because my grandmother, on my father's side, lived in the Youngstown area.

Scott Steele:  That's fantastic. And we're glad to have you here. So, today our topic is psychosocial impact of colorectal cancer and other colon disorders.

As a little bit of a background on that, first tell people a little bit more about a clinical psychologist. Where does your role fit into the overall healthcare team? How does that deal, and I know you work very closely with our Weiss Center colleagues for colorectal cancer hereditary syndromes. But let's talk first about a clinical psychologist. What's the difference between that and a psychiatrist and other things?

Karen Hurley:  So, as a psychologist, I have a training in emotional adjustment and emotional disorders. But, unlike a psychiatrist, I do not prescribe medications. So, the interventions that a psychologist would do would be more coping techniques, listening and asking questions to help someone go a little deeper in understanding the impact of a stressful experiences such as an illness. That's probably how I would describe my main role is to help someone have the best adjustment possible and to activate their natural resilience so that they can have a good quality of life.

Scott Steele:  I talk to most patients, and having done this for a long time, I would say that when you give someone a cancer diagnosis, it's a lot of different emotions that go through people's heads, all of which I try to let them know are perfectly normal. But what types of psychosocial issues kind of impact patients? Let's first start out on the diagnosis side and then talk me a little bit through how that may or may not change through the treatment and then after.

Karen Hurley:  So, in terms of diagnosis, probably one of the biggest things is the extent to which it's a shock, right? Sometimes what I'll say to patients is that a diagnosis can be like the earthquake that shakes the building. First, there's how strong that earthquake is. A life threatening illness obviously would be a strong shock, and then anything that is strong will stay standing. But if there's any hidden weakness in the wall, it might come down suddenly. So, sometimes people will be going through the shock of an illness, but they find other memories or other stressful times in their life coming back to them, adding to that sense of shock. And that's not exactly predictable how someone's going to react.

Scott Steele:  When they go through the treatment phase and kind of you walk them through and say a lot of these things are normal, I have many patients that the first thought that they have is am I going to die? Then they get through that and say, you know, kind of I can do this, and they find the strength, but how do you find that that kind of issue or the psychosocial aspect of that throughout the treatment and then beyond fits in?

Karen Hurley:  So, there are multiple layers of that, which is why adjustment is going to look slightly different from person to person. What I start with is the message that is overall we are resilient and that people do get their feet under them in the experience, but we can't tell exactly how or when. Just that that's pretty much our natural inheritance. Much like you cut a finger, there are processes that kick in almost right away. First the bleeding stops. The skin heals over. Then pretty soon you can't tell that it happened. And we have things like that within us psychologically that also kick in.

So, some of the things that we might look at are what are some of the demands that are being placed on patients? Is it a lot of hassles? Getting to frequent appointments, having to change their routines? What's the impact on the family of changing routines? Sometimes you get role reversals. Someone who is the breadwinner, is suddenly having to pick up more of the childcare duties, right? Things like that. So, there are those impacts that will vary from person to person.

And then there's also a sense of does this impact someone's sense of competency? Do they feel like their choices in life are being taken away or important goals are being interrupted by treatment. So the extent to which someone can be flexible about releasing goals, at least temporarily, they might really treasure. And then figuring out what's going to make their life meaningful based on what's possible. And that's kind of an uncertain time, especially when someone's in the middle of a treatment, especially an extended one, there's a time at which you don't know what's going to be possible. And that's one time when people get really anxious.

Scott Steele:  Karen, one of the things that you specialize in is hereditary cancers, and can you talk a little bit about that? How did you get involved in that and is that any different than somebody who doesn't have hereditary aspect to it or just has, if you will, spontaneous malignancies that they might have out there?

Karen Hurley:  Sure, and that's a good question. So, I got into it pretty much by accident. I was training as a clinical psychologist. I had a strong interest in health, and then I happened to be sitting in a research meeting with doctors who were working on identifying what became known as the BRCA genes. And I was listening to them talking about women who had to decide whether or not to have their ovaries removed. And this is in advance of testing because the clinical testing wasn't available yet. And I thought to myself, "How in the world do you make a decision like that, to have healthy organs removed when you've lost a relative to a disease?" And that just grabbed my attention, and it has never let go in 20 years.

So, going from there, I'd say that the hereditary component to cancer adds a couple of dimensions. First, you have these families that get very hard hit by cancer where grandparent, parent, siblings, children. Sometimes you'll have several family members who are either in treatment at the same time or one is in treatment and the other one has just learned that they might be at risk as well and are trying to decide about getting tested while they're trying to support each other. So, it adds a layer of complexity to the family adjustment.

The other thing, of course, is people worry very much about passing a mutation onto their children, and that's probably one of the most frequent consults I get is how do I tell my children that they're going to need to be tested as well.

Scott Steele:  So on that same line, what percentage of the time, if at all, do you actually have the kids come in and speak with the kids, and is there a difference between the person who has the genetic defect that you find, kind of emotionally, with the people who, during that testing process or even one of the common things that comes up is, should I get them tested? Should I get this tested for hereditary type problems if there's something that runs in the family because that's got maybe some insurance issues with it, or it's got some emotional things to it as you talk about. Can you tell our listeners a little bit about that?

Karen Hurley:  Sure. And you just asked about five questions, which is great, but that's the kind of tumult that goes through a parent's mind as they're starting to realize the implications. So, all of those are there.

So, most of what I do is, rather than bring the kids in, is that I support the parents in figuring out how they're going to tell the children. So, there's two components to that question. They usually come in looking for what are the right words to use to make this come out okay for my kids so that they don't worry or that they're not devastated. But the other part of that question is how did they go through the emotional experience of handling their own feelings about the risk to themselves and the children and to tolerate those emotions and then turn the focus around and being a good parent. So, it's almost supporting the parent in a brand new set of parenting skills that they have to acquire an on the fly.

Scott Steele:  I'm a parent that comes into you, and there's a question of whether or not there's a hereditary disorder, hereditary cancer that's in the family. And I say, "Should I get tested? I mean I'm a little hesitant to get tested." Have you been faced with that situation before, and how do you counsel them in terms of that aspect to them? Because I can know from personal experience, I have some patients that want to get tested and others like, you know what? I want to hold off. I don't really want to know at this stage.

Karen Hurley:  And I think, given that our context is colorectal disorders, that two of the main colorectal syndromes, Lynch syndrome and FAP, have very different contours to them in terms of that decision. So for Lynch, which is 100% adult onset, right? So for an adult deciding whether to get tested, we have pretty good screening available. So, that means that a parent might choose to get tested in order to do as much as possible to stay healthy and be around for their children. When you're talking about FAP, the effects emerge much earlier, in the early teen to late teen phase. So, testing the children becomes something that benefits their health directly. So, in that sense, preparing the parents to have that conversation with their children and supporting them through the process.

Scott Steele:  So, when should a patient come in and seek assistance for some emotional distress following treatment? Is it, so when you're feeling down or should everybody come in and do that? I mean, is there some people that don't need this at all, or is there others that are just partitioning this a lot better that they ... It's there but they just don't want to acknowledge it, or they don't acknowledge it?

Karen Hurley:  It's a good question. And so, most people who have pretty good support systems and have a good deal of psychological resilience, they're using healthy coping techniques and minimizing use of unhealthy coping such as avoidance. They don't need come see a psychologist. They might choose to, to either get some reassurance or some additional coping tools. They might want information about a specific issue like help with making a decision or help with trying to figure out how to talk to the children.

Some of the warning flags would be emotions that don't seem to resolve pretty easy. So, it would be normal to cry when you get a cancer diagnosis. If they can't stop crying after a while, that would be a sign. Numbness or indifference can be a sign. Just feeling in shock or like it's not real, that might be a sign that somebody is having trouble processing. Someone who is socially isolated or has a lot of social supports around them, but they're not using them. Sometimes we'll see people say things like, "Oh, I haven't really told anyone because I don't want to worry them or I don't want the attention." And that breeds isolation within a crowd, so to speak. And then we know from psychological research that isolation predisposes people to having anxiety and depression down the line. So, that's one thing I really look for.

Scott Steele:  How do you deal with the fact that in some of these cases that you're bringing up, it seems like the person may not have some insight. Are you ever approached by a family member saying, "My brother or my sister was just diagnosed with a cancer, and I'd really like to get him to see you, but they're unwilling." How do you deal with that situation where the family gets involved? How do you go about that?

Karen Hurley:  So, I have to feel out a little more, especially if it's a relative where they're coming from. So, if it's someone who's very worried about their adult child, for example, and saying, "Oh, I really wish he'd get tested and whatnot," is that we have to start with that person's level of worry, his or her worry belongs to them. So, in that sense, helping them process what their worries are, talking about their relationship because people who are very worried about someone else will start to try to constrain that other person's autonomy. And so what happens is then you get into a push me, pull you, and that person who you're trying to get tested might harden their position and become more resistant. So, it's important to look at the family as a system.

Now, when someone is in denial, for example, someone say with FAP and they've got a lot of polyps and they're really ... It's time to think about surgery, and they're not there. First, we have to have empathy with the fact that denial is a defense like any other. It means that someone's having feelings that are too big for them. So, I wouldn't get into a power struggle about, Oh you need to have your feelings. It's more like, okay, you're saying that you're going to get rid of your polyposis with healthy eating. I see it differently, and these are my concerns for you. Sort of opening up that conversation rather than banging on the wall.

Scott Steele:  So, I can only imagine there's a lot of people listening that may have certain pre-dispositions about what it would be like to come to a clinical psychologist and stigmata. So, what can a patient expect in a visit with you and one of your colleagues?

Karen Hurley:  And I know I've seen that a lot. They don't want to go see the shrink. And the word shrink is a very interesting choice because people feel like they're going to be shrunken by the act of coming into see a psychologist. So, really what we're offering is building up a person's natural strengths and resources, whatever they're going to be. And those are going to vary from person to person.

So, it's more like a conversation. I call it looking for what we're going to put in the plus column. And then once people are in, sometimes just the relief of being listened to without being judged. In some ways that's the main thing that we offer. And because, in the context of a serious illness, family members are going to have strong feelings about what's going on. So, they may not be able to create that space of listening without judgment.

So, this is a way to ... It almost takes a little pressure off of the family system and give someone a quiet place apart from what's going on with the illness to hear their own thoughts.

Scott Steele:  Are the people actually laying down in a couch then Karen?

Karen Hurley:  No. No. So that's a bygone era. No, people are sitting up and talking, and you get to stay an adult.

Scott Steele:  So, one of the things that I hear you saying is that you don't make decisions for patients, but you help them come to their own decision making and conclusion about this.

Karen Hurley:  Absolutely. And that's really critical for getting through an illness experience. Sometimes patients will want to give the decision away. Oh, just tell me what to do. But that forecloses some of the processing of the decision that goes on. What I look for in a patient is if someone can tell me in a sentence what a decision is going to do for them, that's the time when we can have confidence that they're making a good decision. So, a lot of the work is getting someone to that place where they can say, "How is this decision meaningful for my life? How does it connect me to my goals? How does it connect me to the people that I love?" And that's going to be the foundation for carrying them through the health challenge, however long it goes.

Scott Steele:  So Karen, we are lucky enough here at the Cleveland Clinic to have you as a part of our Weiss Center team, which in and of itself is the absolute leader in the field in terms of hereditary colorectal cancer neoplasia. So, talk a little bit about your role within Weiss specifically, and then is there other people like you in other hereditary cancers?

Karen Hurley:  There are not a lot of psychologists who specialize in this area. It's starting to grow a little bit more. But I do feel very fortunate and the reason that I came here was the opportunity to work with physicians who are at the top of their field and to provide this kind of multidisciplinary care.

So, my role is when one of the team members identifies a patient who has some of those red flags, is that they'll make the referral or refers them for a one-time conversation about talking to children or how to make a decision.

So, one thing that I think is important is that my role is flexible. It doesn't automatically mean that if someone comes to see me, we're going to go straight into a longterm therapy. It might just take a session or maybe two to get someone to the place where they feel confident that they can take it from there.

Scott Steele:  So, a two part question for you. What types of resources or support services are available to patients following treatment? And then what would you say to patients who don't have essentially access to a clinical psychologist? Is there something else that you would have them do if they don't have specialists like yourself?

Karen Hurley:  So, there are a number of options, and it does depend in part on what exactly we're talking about in terms of conditions. There are lots of great patient advocacy organizations out there nationally that can provide ongoing support and information. Cancer Support Community, for example, is one that I think does a lot of good work. We, here at the clinic, offer telemedicine for people who can't come in. So, I actually do video consults for people who are too far away to come in.

Now for psychology, we have to be licensed in the state that the person lives in. So, I can see people who are in Ohio or New York remotely. And that option is growing. So that's another thing that people can do.

And then sometimes if someone has a therapist already back in their home community, I will talk to their therapist and give them some perspective on some of the specialized issues that might arise in the context of their ongoing work. So, it's more of a consultative role at that point.

Scott Steele:  Well this is all fantastic stuff. We'd like to end up with a few quick hitters with all of our guests here on Butts and Guts. So, what's your favorite food?

Karen Hurley:  My pasta recipes.

Scott Steele:  What's your favorite sport?

Karen Hurley:  Basketball.

Scott Steele:  And what's the last nonmedical book that you've read?

Karen Hurley:  The Manticore, which is a novel about a man going through therapy.

Scott Steele:  Fantastic. And then finally, tell us what is something that you like about Cleveland?

Karen Hurley:  I love the feeling of community here, and I love that the arts are so accessible.

Scott Steele:  Well, that's fantastic stuff, and we're obviously very happy to have you here within the Digestive Disease & Surgery Institute. So, for more information about Cleveland Clinics Digestive Disease and Surgery Institute, visit Clevelandclinic.org/digestive. That's Clevelandclinic.org/digestive. And to make an appointment with a Cleveland Clinic specialist, please call (216) 444-7000. That's (216) 444-7000.

Karen, thanks so much for joining us here on Butts and Guts.

Karen Hurley:  Thank you so much for having me.

Scott Steele:  That wraps things up here at Cleveland Clinic. Until next time, thanks for listening to Butts and Guts.