Am I Doing OK – Research Insights on Pursuing Goals and Quality of Life After Testicular Cancer

Michael A. Hoyt, PhD, is a professor of population health and disease prevention at the University of California - Irvine, Joe C. Wen School of Population and Public Health. He is an expert in biobehavioral cancer survivorship research and a leader in behavioral medicine and clinical health psychology.

Dr. Hoyt discusses how the biological side of a disease or chronic disease intersects with the behavioral side of our body. He started his dissertation research to understand how men regulate their emotions when they have cancer. He expanded his research to study where biology fits into the psychological interactions men experience with cancer.

In this podcast episode of Don't Give Up on Testicular Cancer, Dr. Hoyt shares his research outcomes on life after testicular cancer.  His research discussions with young men who survived testicular cancer found one question posed most often by them, "Am I doing okay?"  Learn more about his research on that question in the podcast from the Max Mallory Foundation.

Learn more about Dr. Hoyt's testicular cancer research and call for participants on his lab's website at bmed.publichealth.uci.edu

Transcript

Am I Doing OK – Research Insights on Pursuing Goals and Quality of Life After Testicular Cancer

[00:00:00] Intro: Welcome to Don't Give Up On Testicular Cancer, a podcast where testicular cancer survivors, caregivers, and others who have navigated the cancer journey share their stories. The podcast comes to you from the Max Mallory Foundation, a nonprofit family foundation focused on educating about testicular cancer in honor and in memory of Max Mallory, who died in 2016 at the young age of 22 from testicular cancer.

[00:00:40] Had he survived, Max wanted to help young adults with cancer. This podcast helps meet that goal. Here now is your host, Joyce Lofstrom, Max's mom, and a young adult cancer survivor.

[00:01:06] Joyce Lofstrom: Michael A. Hoyt, PhD, is a professor of population health and disease prevention at UC Irvine Joe C. Wen School of Population and Public Health. He is an expert in biobehavioral cancer survivorship research and a leader in behavioral medicine and clinical health psychology.

[00:01:24] For all of us interested in testicular cancer, Dr. Hoyt will tell us more about how the biological side of a disease or chronic disease intersects with the behavioral side of our body. So, I'm honored to welcome you here, Dr. Hoyt. Thank you. 

[00:01:38] Michael Hoyt, PhD: Thank you. So nice to be here.

[00:01:41] Joyce Lofstrom: Tell us a little about yourself, what you do as a researcher, your focus, and how it relates to cancer survivorship.

[00:01:50] Michael Hoyt, PhD: I started my career not as a psychologist at all. After graduating college, I went to work in health communications. So, I started my first position at Harvard University. That was a great place to get started, but I was doing health promotion work.

[00:02:11] Michael Hoyt, PhD: I was hired initially to focus on student health issues, like drinking behaviors and safe sex and all the things that you might think of at a college. But it wasn't hard to see what students were struggling with the most was stress and mental health issues and how that affected their lives and how that affected their health in some ways.

[00:02:37] Michael Hoyt, PhD: And so, at the time, I hooked up with the Mind Body Medical Institute at Harvard Medical School. Herb Benson, who is the pioneer In relaxation response, was the guy who defined what it means for the body to not just be in a neutral state, but to be in a relaxed state. And so, he had a whole program, a research program, a clinic.

[00:03:04] Michael Hoyt, PhD: I started working with individuals with chronic illness to help them change how stress was affecting their lives, how it was affecting their bodies, how it was affecting their outcomes. And so that's where my journey into this field began. I became interested and am convinced that the mind and the body were interrelated, having an impact on each other, and that there was a point of intervention there to improve people's lives.

[00:03:32] Michael Hoyt, PhD: I went on, began my doctoral studies out in Arizona, and it wasn't until I was doing my clinical rotations in a cancer hospital that I started to focus on what I was interested in… on individuals who are experiencing cancer, and I was in an inpatient setting and instantly getting all the referrals.

[00:03:53] Michael Hoyt, PhD: Every time a male shed a tear, the medical staff would call in psychology. They were uncomfortable with the idea that men were emoting around their cancer experience. And you know, as a good graduate student, I went to the research literature and said, OK, what do we know about how men should cope with cancer and what should we do with men?

[00:04:13] Michael Hoyt, PhD: And it was, maybe not surprising, but at the time, upsetting to see that all the research at that time was focused on women, primarily women with breast cancer. It's where all the funding was. It's where the research started. And all of that was terrific work. It just didn't have the male perspective.

[00:04:31] Michael Hoyt, PhD: And so I started my dissertation research in that direction to understand how coping, particularly coping around regulating our emotions when we experience cancer in men and spent a lot of time sitting in chemotherapy suites at the Phoenix VA trying to understand how these things play out in men.

[00:04:54] Michael Hoyt, PhD: It's a little bit later on in my training where I was doing my postdoc at UCLA, [00:05:00] where I was starting now not just to study the psychological sort of interactions that I'm talking about, but where does biology fit into this? And so it was at UCLA where I gained the perspective of, wait a minute, when we change our psychology, we change our biology, and when we change our biology, we change our psychology. A whole interaction is happening.

[00:05:21] Michael Hoyt, PhD: Then, when you add in something like a cancer tumor, what happens? How does the change in biology change the biology around a tumor? And that just fascinated me in different ways. I'll get to where we're getting to the topic of testicular cancer.

[00:05:40] Michael Hoyt, PhD: That's OK. 

[00:05:41] Joyce Lofstrom (2): I know it's interesting. 

[00:05:43] Michael Hoyt, PhD: And that is one of the first sort of major research grants that I got was a Young Investigator Award from what was called then the Lance Armstrong Foundation and started my work focusing on young adult men who've had testicular cancer. The beginning project set me off on a trajectory to take all those interests and start to think about them in the context of young adulthood and testicular cancer.

[00:06:10] Joyce Lofstrom (2): Wow, I mean, to make that connection, I think it is fascinating too. And it's too bad; no, it's not too bad. It's sad that the men who had emotional reactions to having cancer or any disease were uncomfortable. I mean, that's another topic. , so you talked about having the graph for testicular cancer.

[00:06:33] Joyce Lofstrom (2): So, can you just kind of link it then to more about testicular cancer survivorship, anything that you've learned or can share with us? 

[00:06:41] Michael Hoyt, PhD: When I started to begin the work, the real difference was because up to that point, I was putting a lot of my attention on men with prostate cancer, which, as you probably would guess, the psychology around that is just, it's just,  different. And so, for me, turning my attention to testicular cancer wasn't so much About the [00:07:00] difference in cancer, though there are huge differences between prostate and testicular cancer.

[00:07:05] Michael Hoyt, PhD: It was largely about who experiences those cancers. 

[00:07:10] Joyce Lofstrom (2): Wow. Yeah. And that is a big age gap. I'm just thinking about Max, my son, but what you just said, there's so much in that that does change when you find out you have cancer.

[00:07:19] You touched on this, but I'm a cancer survivor too, and the question I have is, how does cancer survivorship, any cancer, affect your mental health over time? I mean, you hinted at that. There's when you get the diagnosis, and you go through all the treatment, and you survive, and then what, for me, I always think, oh, any mammogram, it's going to come back or any weird lump. What are your thoughts on that?

[00:07:44] Michael Hoyt, PhD: I think people have different feelings about the term cancer survivor in general. And the reason why I. continue to use it if it's OK with the person that I'm interacting with because I do think there are lifelong impacts for a lot of cancer [00:08:00] survivors.

[00:08:01] Michael Hoyt, PhD: Some, you just mentioned, right, in the research world, we'd call that fear of recurrence, right? But it's that, That sort of feeling that comes with uncertainty about the future, and I think that is part of the experience for a lot of cancer survivors. But honestly, when I talk to different groups about the work that I do, the most common question I get from either cancer survivors or people who love them is, am I doing OK?

[00:08:33] Michael Hoyt, PhD: Am I doing OK after all this, right? You have to ask yourself, as a researcher, what does it mean to be doing OK or be doing well, psychologically, anyway, after cancer? And, again, when I look at, well, how do we study these questions? What is it that we say when we do clinical trials or we do, you know, different studies to learn about that?

[00:08:57] Michael Hoyt, PhD: There are a few things we do point to in research. For better, for worse. One of those is, something you kind of already mentioned, is the absence of mental health or mental health problems, I should say. If you don't have depressive symptoms, or you don't feel anxiety, or you don't feel excessive amounts of persistent fear, right, then that's been an indicator of you're adjusting well, right?

[00:09:24] Michael Hoyt, PhD: Another way we tend to look at it is if you experience more positive emotions and effects on a regular basis and less negative emotions and effects on a regular basis, probably, most importantly, we look at functioning across like different life domains, right? 

Are you able to maintain relationships?

Are you satisfied and productive? 

Are you able to go to work and be productive in the way that you want to be? 

In all of the different parts of our lives, can we function? And then, probably less often, we tend to look at more positive outcomes. How satisfied are you with your life?

[00:10:06] Michael Hoyt, PhD: Are you flourishing in the way that you want to? In my work, I've been more focused, particularly with young adults, on the ability and not success, but the ability and engagement in pursuing the goals that are most valuable to you. And so I've been thinking about the sort of, am I doing OK in life by helping young folks bolster their ability to pursue the things, identify and pursue the things that are most important to them after a cancer experience.

[00:10:38] Joyce Lofstrom (2): Well, I think that's important because, well, I can remember, this was more diabetes, but you feel like, well, what am I going to do now? You might have a job but think you can't do it. Or, you have a new direction, and that's important to help people understand how to pursue what they want to do because that's so important for all of us, you know?

[00:10:59] Michael Hoyt, PhD: Yeah, you know, [00:11:00] I go ahead. 

[00:11:01] Joyce Lofstrom (2): No, that's all; I was going to say cancer or not cancer, but yeah. 

[00:11:05] Michael Hoyt, PhD: Absolutely. Absolutely. I've been doing a lot of work around an intervention. Sort of therapy, if you will, or a program for young adults with testicular cancer. And we call it goal-related emotion regulation therapy, right?

[00:11:20] Michael Hoyt, PhD: where did that come from? And what does that mean? It is what you're talking about. When I started this work, I wasn't doing interventions or anything. I was just sitting down and talking to young guys who've had testicular cancer, just to hear about their lives, hear about what happened to them, learn about.

[00:11:38] Michael Hoyt, PhD: them from their voice and from their perspective. And I kept hearing versions of the same sentiment, and that was best said by one of the guys I talked to who said, you know, now that I've had this and on the other side of this, Everything feels so important, and at the same time, nothing feels that [00:12:00] important.

[00:12:01] Michael Hoyt, PhD: And that carrying those two things at the same time, for some folks, for some young guys, it was a little bit deer in the headlights moment, right? It was like, I can't move because of that. And that's where this work, for me, came from, from hearing about that. Experience.

[00:12:22] Michael Hoyt, PhD: Another person said, after I got out of the medical part of all of this, I felt this rush of agency, right? This rush of, like, I have to and can do anything, but now I don't know what to do because I can do anything. 

So the therapy—I use that word lightly—that we are doing in our study is trying to speak to what it is focused on. Hey, let's take a look at how things changed for you in this cancer experience. Let's talk about what you value, and that might have shifted over time. Can you separate, like, values, what you hold most important in your life? And goals. How do you pursue things related to those values?

[00:13:07] Michael Hoyt, PhD: How do you want to get there? And how do you navigate the barriers that might be in the way? And how do you maintain progress? And how do you pull back from something that feels like a goal that either isn't connected to anything important to you or it's just not achievable right?

[00:13:25] Michael Hoyt, PhD: I think young men in particular get told, never give up, never give up, never give up. And that's good when a goal is achievable and out there for you. But psychologically, the research tells us that that's actually damaging if it's something you're never going to reach because it's an obtainable goal, right?

[00:13:44] Michael Hoyt, PhD: So, we do a little bit of helping and then overlay that with just basic skills and around, how do you deal with emotions related to all this, and I think we do a poor job helping young people deal [00:14:00] with emotions, particularly young men were doing one version of our study right now with Hispanic men who are just talking about a lot in our studies about how emotion sits at the intersection of gender and family and culture and trying to navigate a little bit of that in a way that's right for the person, right?

[00:14:20] Michael Hoyt, PhD: How do you process what is already there? And so we do just six sessions. You work with a counselor, which in the therapy world is considered very, very brief, very, very short-term.

[00:14:38] Michael Hoyt, PhD: But it's a boost of skills to get you thinking, set you back on a course that hopefully proves beneficial over time. And what we're finding is that there does seem to be some benefits of doing this. We'll see what the big clinical trial results look like. But in our pilot work, we found improvements in functioning and [00:15:00] psychological stuff and all the stuff I mentioned before.

[00:15:02] Michael Hoyt, PhD: But we also found that we changed stress hormones by going through this program. The guys, I mean, it's early results, right? We're waiting for the real big study results. But in our pilot work, we found the guys who did our sessions lowered their overall output of stress hormones.

[00:15:21] Michael Hoyt, PhD: They lowered their levels of inflammation cells going through their body, which is a good thing. So, we were encouraged to continue this particular path. We'll stay tuned. We'll see what the what the study results say. We won't have those results for a few years.

[00:15:38] Joyce Lofstrom (2): When I read more about you, you have a survivorship study. That's what you're talking about. So are you still recruiting for that, or do you have everybody? 

[00:15:46] Michael Hoyt, PhD: We absolutely are. We're recruiting for that. If anyone listening wants to get involved, they can contact our behavioral medicine research lab here at UC Irvine.

[00:15:57] Michael Hoyt, PhD: You can contact me directly. It's [00:16:00] not hard to find contact information for us on the web. My research team and the lab will screen you to make sure you're appropriate for the study. And that's not the only study we have. We have a large study that's focused on young adults, 18- to 39-year-olds, who've had testicular cancer.

[00:16:17] Michael Hoyt, PhD: But we're now starting to broaden that out a little bit. We have side-related studies for other types of cancer for young adult guys. As I mentioned, we have a study specifically for Hispanic and Latino-identifying men across cancer types. So there are lots of opportunities if anyone's interested or just interested in learning more.

[00:16:38] Michael Hoyt, PhD: We'd love to hear from people who want to find out about it, even if they're not going to participate. 

[00:16:42] Joyce Lofstrom (2): That's great. I also read about the All of Us data you might use to broaden your studies to different populations.

[00:16:49] Joyce Lofstrom (2): You want to talk about that too? I think it's fascinating that you are doing that and helping other people. 

[00:16:56] Michael Hoyt, PhD: Yeah, the, the All of Us project is a great big project that is [00:17:00] much bigger than anything I'm doing with it, but it's an attempt to collect data that represents all of us.

[00:17:08] Michael Hoyt, PhD: All of us in the, in the U. S. And so, unfortunately, across research, we don't see a lot of representation and diversity, and a lot of people of different identities aren't well represented in research. And so this was an attempt to improve that. What I did was use the large national data that was collected as part of that initiative to take a look at gay and lesbian cancer survivors and ask a basic question: How are they doing compared to their heterosexual counterparts?

[00:17:41] Michael Hoyt, PhD: And so because the data set is so large and so many people took part, we were able to create a matched comparison, right? So you can take the data and look at, say, hey, let's look at cancer survivors who are of the same age, the same cancer type, who meet all the same profile, match [00:18:00] them sort of one for one with the gay and lesbian cancer survivors and bisexual cancer survivors in the data set.

[00:18:07] Michael Hoyt, PhD: Unfortunately, there weren't yet, that data set's still being built, there weren't yet Many transgender cancer survivors to do any statistics with, but hopefully in the future. But basically, what we found were some real disadvantages in some of these things that we look at that tell us how people are doing after cancer.

[00:18:29] Michael Hoyt, PhD: For the gay, lesbian, and bisexual survivors. - and so yes, this was a very basic analysis that highlighted that disparity, but it speaks to the idea that we need to turn our attention to the most vulnerable among us. Even in my work with testicular cancer, we certainly can see that life stress might be related to who we are; it might be related to how we are, how we live, and the other things going on in our lives.[00:19:00] 

[00:19:00] Michael Hoyt, PhD: Those things don't go away because we have cancer. And so, it makes sense that cancer survivors who experience more life stress are more at risk for cancer affecting them in a worse way. And sometimes, these are the same folks who don't get the same from their healthcare experience. 

[00:19:19] Joyce Lofstrom (2): Right, that's what I was going to say, access to care, and if you don't have access to quality care or any care, it makes a huge, huge difference, I know, in so many things.

[00:19:29] Joyce Lofstrom (2): Lot of the men I've talked to for this podcast know about, or they learn about, like, support groups, kind of like what you're doing with your six sessions. Do you have any thoughts on just the different ways men can, or anybody with cancer, connect with support groups I can't remember all the names of the different associations, but you know what I mean.

[00:19:48] Joyce Lofstrom (2): Guess what I'm saying is talk with other guys who've been through the same thing, you know 

[00:19:52] Michael Hoyt, PhD: Yeah, that's so powerful for a lot of people, right, not for everyone. But I think it can be so powerful , even if it's not a group, you know, if that's too, too out of your comfort zone, but if there's a way to get connected with someone who can just sort of, I want to use the word verify in some way.

[00:20:11] Michael Hoyt, PhD: I say that because so many of the young testicular cancer participants in my research are always asking, am I doing OK? Like, that same question, right? Like, they don't know. They come to my study, and I say, what makes you want to participate? And they say I've been through this.

[00:20:29] Michael Hoyt, PhD: And I'm not sure if I'm OK. Right? Like I, sometimes I think I am, but geez, this was heavy. It must've affected me somehow. And they're not sure. And they're interested to hear what other survivors, just like them, say. What we're doing right now, at least in the current version of our research, is a very one-on-one scenario, right? 

So they met with a counselor one-on-one, but early on, some of the initial feedback, though, guys liked that. [00:21:00] They also were curious, like, how are other guys doing? We give a patient a workbook, right? Because there are different exercises and handouts and stuff.

[00:21:08] Michael Hoyt, PhD: And we took quotes from our research interviews and just peppered them in a small way for our participants to hear the voices of other people. And they love that. 

It was just a simple little thing, but I've always thought about doing another study where we capitalize on sharing each other's experiences, even if it's in a way that they don't meet face-to-face but hear, "Oh yeah, it's a bit normal to feel that way."

[00:21:40] Joyce Lofstrom (2): That's great. Wow. I'm impressed. I mean, there's so much out there that you're doing to help people with this. Is there anything you want to add that's ahead or things that you want people to know before we close? 

[00:21:50] Michael Hoyt, PhD: Yeah, there's so much work to be done in this area, and I love doing what I do.

[00:21:55] Michael Hoyt, PhD: People sometimes say, isn't it difficult or isn't it taxing to focus on cancer all the time? I don't think so. I think it's incredibly gratifying, and if there are survivors of testicular cancer out there listening, I want to say I feel so much gratitude to that group of people. They take a leap of faith in my research. 

I sometimes put out simple little flyers, and they answer the call and say they want to participate, they want to do something, and they want to give it back. So I hope that speaks to their rush of agency in some way.

[00:22:29] Michael Hoyt, PhD: But I certainly am always so grateful that they take that leap on something unknown and uncertain. We have lots of work to do. We'll continue to do it. So, if anyone wants to keep up with what we're doing, we'll keep our website updated and try to communicate what we're doing.

[00:22:46] Joyce Lofstrom (2): Do you have a URL we should know,

[00:22:48] Michael Hoyt, PhD: My research lab website is where we keep most of our stuff up to date. And it's a little bit long, perhaps, but it's https://bmed.publichealth.uci.edu/

[00:23:01] Joyce Lofstrom (2): OK, perfect. So my last question is, what song do you just have to sing along when you hear it?

[00:23:09] Michael Hoyt, PhD: When you said you were going to ask me this, I've been trying to think about it, and the fact is, I love music. It's a million songs to answer that question, and I always try my best to match the mood. I tried to think of what song makes me feel connected to this work.

[00:23:25] Michael Hoyt, PhD: And the song that came to mind was a song called All I Know So Far by Pink. And there was a particular line in that song where she says, "Put your sword down and dive right into the pain. Stay unfiltered and loud. You'll be proud of that skin full of scars. And that's all I know so far". And so that's the song that I will share with you today.

[00:23:48] Joyce Lofstrom (2): That's perfect. I don't know that song, so I will go listen to it. Thank you. 

Well, I appreciate your time. And I hope you will come back in a year or so to tell us what you're doing and how the research is [00:24:00] going. I'd love to know. 

[00:24:01] Michael Hoyt, PhD: I would love that. I would love that. 

[00:24:03] Joyce Lofstrom (2): I will say thank you.

[00:24:05] Joyce Lofstrom (2): We'll stay in touch. And thanks, 

[00:24:10] Michael Hoyt, PhD: thanks. 

[00:24:11] Joyce Lofstrom (2): All right. Take care. 

[00:24:13] Michael Hoyt, PhD: Bye. Bye. 

[00:24:13] Closing: Thank you for listening to this episode of Don't Give Up on Testicular Cancer. If you enjoyed this podcast, please subscribe to our program on your favorite podcast directory. You can also visit the Max Mallory Foundation at www.maxmalloryfoundation.com/podcast to listen to previous podcast episodes or donate to the foundation.

[00:24:54] Closing: And join us again next time for another episode of Don't. On [00:25:00] testicular cancer.

[00:25:17]


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Tags: testicular canceryoung adults with cancer