What to Know about Testicular Cancer and Men's Wellness - Episode #20

Michael J. Rovito, Ph.D., focuses on testicular cancer research after his own cancer scare as a teenager. He discusses men’s wellness, testicular cancer, and testicular self-examination, emphasizing men's quality of life, especially after surviving testicular cancer. He is an assistant professor at the University of Central Florida. 

Transcript

What to Know about Testicular Cancer and Men's Wellness - Episode #20

Joyce Lofstrom

Welcome to Don't Give Up on Testicular Cancer during this month of April, which is Testicular Cancer Awareness Month. Our podcast from the Max Mallory Foundation offers insights from testicular cancer survivors, their caregivers, and others touched by cancer. We do this in memory and honor of Max Mallory, who died at age 22 from testicular cancer. I'm your host, Joyce Lofstrom, a young adult and adult cancer survivor, and Max's mom.

Hi, this is Joyce. And with me today is Michael Rovito. And Michael is an associate professor at the University of Central Florida And he has done research and really done a lot to help build awareness about men's health and testicular cancer. So Michael, I'm so glad that you could join me today.

Michael Rovito

Thank you. I appreciate the invite.

Joyce Lofstrom

So I always like to start with how people become interested in what they're doing or what, you know, if you have testicular cancer, that story, but I just want to know how you became interested in men's health and testicular cancer.

Michael Rovito

When I was 16, I felt a lump in my testicle and this is going back to the mid nineties. And so, uh, this is like [the] pre-Google pre-WebMD kind of period. And I lived in the middle of nowhere. So there really wasn't any kind of like, really easy access to go to local like your general practitioner. But there was no like, a lot of easy information to access, particularly for men's health type stuff. So, you know, I'm an adolescent, you know, male, mid 90s. This is before even the whole Lance Armstrong exposure. you know, idea, it was really preliminary. And so when I felt that I was kind of like, Oh, my God, what is this? You know, I knew it wasn't normal. And, you know, for a while there, I was pretty distraught. I didn't talk to my parents about it, you know, because I was embarrassed. And then I don't have to say and then I really couldn't go to the doctor, there was like no free clinics at all. And so I was kind of like, I had to go to my doctor to get or my parents get to the doctors, I didn't want to do that. And so I kind of lived with it for like two months and three months. And you know, and it ended up not being cancer.

 It was a varicocele. And people are kind of like, Well, okay, well, like, no, like, for a while there, I thought I had cancer, I thought, you know, this is before anything like I was like, there's something wrong. And that was pretty distressing for me. And it was impactful, because if it wasn't for that experience, I wouldn't be doing what I'm doing now. So it was my experience with a varicocele in the mid 90s to kind of spur me to encourage me to get on the path to help other guys that are having similar issues today. There are still guys out there that don't know. There are still some guys out there that don't have access. There are still guys out there that are not empowered to go seek. So that's why I do what I do. It was my experience then that kind of got me into my field now.

Joyce Lofstrom

So if you don't mind, could you define, is it varicocele? Obviously, I don't know what that is that you had.

Michael Rovito

Yeah, so varicocele. So think of varicose veins, like people get them on their legs and whatever. So it's kind of like that. Okay, the valves that some of the blood vessels are going down to my testicle. I'm trying to speak plainly that they're not functioning properly. And so it ends up like there's blood vessels on the back of the, you know, you know, the epithelium is on the back of the testicle, just like a growth of vein-like blood vessels. So it feels like a bag of spaghetti.

A lot of people, a lot of guys get this. The main issue is with fertility issues.

 But back then I had no idea what I'm feeling. A lot of guys now when they feel bad, I've had the prevalence, maybe 30, 20% of guys get it, maybe less. But it feels like a big lump on your testicle. You think, oh my God, cancer. But it's called varicocele.

Joyce Lofstrom

Yeah, yeah. Okay, well, thank you. That helped me to know what it is too. So I know in reading some of your background and all, yeah, all the work you've done in men's health, and we'll get into that, but you make a distinction between men's health and men's wellness. And you had, I think it was seven points to consider with that. Can you talk about that, the distinction between health and wellness for men?

Michael Rovito

Sure. My other hat that I wear is, I think we'll talk about it later, is that I run a nonprofit. My wife runs it. She's the brains and, you know, the beauty behind it all.

 I just kind of like help with it. But it's called the Male Wellness Collective.

 And we approach wellness instead of health because we see like health is a great word, but the way traditionally it's been practiced is like this whole like, Sickness perspective is more like a treatment perspective. It's it just it got a bad rap with like you go in with an issue and you're treated as a patient which is fine, but you come out with the script or whatever and that's a great model perhaps but we think nowadays it might be a bit outdated and we see health as wellness because wellness, it incorporates the whole spectrum of like a human from birth to death that includes a spectrum of not just, you know, the physical model, like where I have a headache, or I have cancer, it's more, it's also the mental component of it.

It's psychological component, there's also spiritual component of it, there's an economic component of it, there's an environmental component of it. For me, Michael, to function as a human and to be alive, well and happy—there's a lot more than, you know, the physical, there's the mental, there's a spiritual, there's the psychological, there's a social, there's a whole dimension of wellness that we kind of focus on, because we think all that creates our quality of life. So that's how we look at it from that perspective, because we're trying to treat the whole male, not just one component of him.

Joyce Lofstrom

I think that's so important because all of us, men and women, forget about those other components. You get focused on the physical aspect, but I think that's wonderful that you have that going, you and your wife. So now in your professor work, tell us a little bit about your work as a researcher. I know you're an associate professor now, and I'm going to read the different areas because you have so many areas of interest: Men's health, health behavioral sciences, public health, health education, and health communication. And they all kind of fit together and overlap.

 So tell us about some of your research and what you're doing.

Michael Rovito

So all that, like I apply that to testicular cancer. The crux of my work, besides my application of public health to my nonprofit, because I was always the academic where I always got so bored with being in school and training and becoming an academic, I get really bored with people just being like an armchair quarterback.

 They're like, this is the issue, but they don't do anything about it. So I'm not saying everyone's like that, but we try to implement public health in a nonprofit, but my research academic side, I focus on testicular cancer. What I gravitate towards are usually two different areas. One is towards testicular self-exam and how I like to promote that. The other end of it is the health related quality of life that survivors go through. So, a lot of my work deals with advocacy of testicular self exam, and with that discussion, it comes in the United States Preventive Services Task Force, the USPSTF recommendations. So that's that arm of my research. And the other arm, again, is looking at quality of life among those guys, and family members, too.

Now, what's the quality of life that you experience as you go through diagnosis, or symptoms, diagnosis, treatment, you know, and then after treatment, post, you know, treatment. So I look at that spectrum of quality of life. So that's what like my academic hat does. What I do in my academic [life].

Joyce Lofstrom

Okay. I'm interested in the recommendation that you mentioned, and I had just learned about this actually from another person I interviewed about this, and I wasn't familiar with it, but that whole recommendation about, here it is, the U.S.

 Preventive Services Task Force, and they recommend not to do monthly self-exams for men because of the low prevalence of testicular cancer. At least that was the verbiage in 2011. And I just find that appalling. I mean, I just think that, you know, that's how so many people have been saved, is finding that lump and doing an exam and not doing an exam. So can you just talk about that from your perspective and research and experience?

Michael Rovito

Yes. So testicular cancer is found from either a guy, mostly a guy himself or partner because there actually is some, uh, it's very preliminary studies, but like partners can also find lumps and you know, testicle and also breast cancer to partner, you know, partner discovery. But anyway, so it's, the cancer is usually found from a guy just taking a shower and feeling something weird. So anyway,  TSC for me, it was like, it helped me too. But yes, the task force gave it a D recommendation. And that was, that's been since 2010, 2011.

Before that, it was good. So there's A, B, C, D, and I. If they're like, we don't even know what's up. We don't even know what to say. There's such limited information that whatever, kind of. D is like, don't do it. C is kind of like, look, we kind of say do it, do it at your own risk. We're kind of like, not there yet. But trends are showing that it's okay. B is kind of like, you should do it. You know, there's some things but do it. A is like, definitely do it. That's how I envision this whole rating system, if that makes any sense. Because self exam was, let me get this right, self exams was a C, I believe. Then I think in the mid 90s, or maybe in the late 90s, early 2000s, I believe, I'm trying to remember all this stuff. They switched it from a C to an I, and then an I to a D. I think that's how it went. It might have been I to C, C to D, something like that. But it was a C at one point.

And then in 2010, there was this study done because the task force, they said, hey, look at, because every few years are like, hey, you should reassess, you know, either testing or self-exam or PSA or self-exam or whatever. They're like, hey, researchers, we want you to assess the evidence. Tell us what the evidence suggests. And then from that, what you tell us, we'll make recommendations.

There was a call. These two researchers acted upon the call. And they said, hey, look at it, from what we're looking at, we don't think it's worth it. So the task force, they took the recommendation, or they took that information, recommended that it be a D. That was like in 2010, 2011. But us, on the men's health, public health side of things, we're like, whoa, wait up, why is this going on? If you actually read the study and really understood the study that said 'it's not worth it.'

The one that was made in 2010, 2011, they even said themselves in the article, there's not enough evidence for us to really make a judgment here. We cherry-picked three studies that kind of fit the criteria because the task force, they'll give you a criteria. They're like, hey, look, we want randomized control trials that look at these outcomes, that look at, you know, find these, read them, assess them, and tell us. That study in 2010, they're like, well, we tried, we couldn't find them. So we picked three articles that kind of fit, but not exactly. And from these three things that kind of fit, but not exactly, we don't recommend it. And so the task force is like, we'll take it. And they gave it a D. And us again, we're kind of like, this makes no sense. You're not even following your own guidelines. You're not following your own methods. So anyway, I kind of found that I'm like, my jaw dropped. I'm like, this doesn't make any sense. You shouldn't be making these policies out there without sound science. There's no evidence you should follow your gut and give it an I, at least he shouldn't be giving it a D. So a lot of my work over the years and I published on this and I swear I scream from the hilltops.

Look over here. There's no evidence to suggest harm in doing it because that's what they're saying that it's more harmful than beneficial. I'm like, there's no evidence to suggest that it's harmful. If there is, please show us. But there's not. And we don't want to know, we want to know if it's harmful. But I also said this, to be fair, I was like, there's no evidence to suggest that it's beneficial either, according to what you're saying, decreasing mortality from it. Because how do you actually do that?

 That's going to be impossible to measure. So I went on a quest and I produced these papers. One, I thought was really good. You know, you think all your works are great, but I went through and I was like, here's what you said your methods are, for how to assess these things. I'm going to go by your language, the language that the task force uses is, if there's, again, I gotta go back, it's been so many years, and you know, you talked so many times about it, but like, they're like, there's fair evidence to suggest that harm is more so than benefit. And they define what fair evidence is. And the fair evidence is defined as something like, there's sufficient evidence to suggest, but they don't define what sufficient means. It's either vice versa.

But I'm like, you're just making up what sufficient means, like what my sufficient is different from what your sufficient is, there should be something objective there to measure this stuff. So that was like my first piece. And then I went into like how you could use self-exam for other things besides finding testicular cancer, like I use it for discovering I have varicocele. Some guys use it to discover hernias or hydrocele, or even they can use it for like scrotal examinations to discover STDs, certain STDs. There's other ways I call it the off label use of TSE. And I produce pieces like that. But you know, so that's the whole task force issue. So right now we're sitting at a D. We're trying to say, hey, it's been 10 years. It's due for a revamp. We need to kind of reassess this, but it's really falling on some deaf ears right now. What's interesting was I just produced an article or some evidence that we found according to what we think, because we don't know of anything else out there right now. But we found it was small. It's not causal. It's correlational. And I understand that. But we found some hint of evidence to suggest that TSC is beneficial in preventing late stage diagnoses of testicular cancer. We did a large nationwide study. And we found that there is a correlation. And again, it's not causal. And I get that. But there's a correlation between if a guy does regular TSC, 

 we surveyed all survivors, but if a guy does regular TSC, he is more like, or, you know, there's a correlation between him doing regular TSC and an earlier stage diagnosis, which is good, right? At a later stage diagnosis, the worse the outcomes.

And so this just got published in the Journal of Adolescent and Young Adult Oncology. It just got published, or it's about to get published in the next two weeks, I believe. And so that's coming out. And so I'm going to use that as a fulcrum piece for trying to court the task force to reassess this evidence, because TSC can be so beneficial. It's free. You guys are down there anyway, checking themselves out. So why not teach them how to do it properly? Sorry for the tangent, but like when I go on a task force soapbox, I go off and on and on and on.

Joyce Lofstrom

Yeah. Well, no, I wanted to hear about it. And my reaction is, and I am not a researcher, so you can tell me what you think, but three articles doesn't seem like a lot to me to make a decision, but okay and then how many people have you talked to and I know I've talked to that men find a lump and they don't know what to do, but if you have information out there that this is what to do if you do find I mean I just I like I said I find it appalling that, you know, that they would recommend this. And I know they say because it's, they call it a rare cancer. What is it, 10,000 men a year have testicular cancer? I don't buy that. I mean, any cancer is not good. So, you know, but, well, I commend you for doing all that because I think it's very much needed. And, you know, I hope they hear you. Oh, and this, the paper you just talked about, is that the one that you were telling me that you did with Mike Craycraft, who is a testicular cancer survivor? I know you had mentioned it.

Michael Rovito

Yeah, yeah. Mike Craycraft is a great colleague, friend of mine.Yeah, but we did a study and we surveyed survivors.

Joyce Lofstrom

Okay.

Michael Rovito

This is our own homegrown data, and we just published on it.

Joyce Lofstrom

Yeah, that's wonderful. Any other research you want to highlight that you've done that people might be interested in?

Yeah, we're looking at data to showcase that, you know, the demographics for testicular cancer are changing. Traditionally, it's seen as affecting Caucasian males the most, and that was historically true. But we're seeing in Black/African-American males that mortality is like sky-high. It's like the worst. They have the worst outcomes in terms of mortality, Black/African-American males. But then also, interestingly, in the next maybe 10 to 20 years, Latinos or Hispanic males, they're actually going to be, they're going to probably outpace Caucasian males for incidence of testicular cancer.

And we're trying to figure out why. It might be a registration of race and ethnicity.

 Where historically they put white down, but now that there's more options to choose from, they're identifying as Hispanic. And so that could be a telltale reason why this is happening, but it could be other things. It could be environmental too, they're trying to showcase, but the demographics for who it's affecting and how it's affecting them are changing drastically. And that's very interesting. We're trying to figure out why, but I just want to throw that out there. We're doing some preliminary stuff with that.

Joyce Lofstrom

That's great. I think, that's just the access to health care and then the demographics of the population. I'm interested, so I'll be looking for the articles. So why do you think, in all your work, why don't men want to talk about their health? Why do you think that is?

Michael Rovito

Another good colleague of mine, his name is Jim Leone. He's from up in Boston.

 We did some other work on how we call normative contentment. And I was like, one of those jargony academic white ivory tower words, but just so normative contentment of right, all these words we use, we make up our own languages. So it's pretty much guys are men and boys are expected to live sicker and die younger. And we're kind of like, that's nonsense, it should not be expected to do that. You know, at about, even from birth, to death, guys are living sicker and dying younger, but it really spikes up around the 15 to 24 year olds. 15 to 24 adolescent males, they have like a threefold chance of dying overall mortality than a 15 to 24 year old female.

Joyce Lofstrom

Why is that happening? That's so weird. That shouldn't happen biologically.

Michael Rovito

Something socially is happening that's making these guys take more risks. Or do whatever. And so we call it a moment of contentment where it's like, ah, boys will be boys.They're just going to go jump off balconies when they're drunk and ha, ha, ha, that's funny. Or like, I love the movie 'Animal House.' But when we see a guy acting like Bluto, you kind of laugh because he's great Belushi's great. But if you saw a female doing that, you're like, oh my God, she can't be doing that. I think the same standard should be held accountable across all sexes, all genders, whatever. I think that we allow guys, men and boys to be a bit more radical with our decision making choice and kind of applaud them for it, too. Like if you look at sexual activity, if you had historically, a guy's like, oh, I slept with, you know, 20 different women They're all like, oh, you're such a playboy, you know. But if a girl said that or a female said that, [they're] like, oh, my God, you have the scarlet letter on your chest. So we allow these things, even subtly--these free passes for guys to kind of act, you know, it's just messy human behavior a lot of times. And we kind of give them free passes for acting like that. That's part of the equation.

 I'm not saying all of it. I'm not pinging males as a monolith either. But a lot of it is socially like we just kind of allow men to have these worse outcomes and just think it's normal because that whole boys be boys syndrome, I think that plays into it a lot. It's a social issue. We need to start reaffirming or reestablishing. We identify why this is going on, we just kind of reassess our value system for like what we should expect out of men and boys versus girls and women. I mean, it should all be the same kind of expectations, but we don't, you know, we don't have that.

 I think that's a huge factor in it all.

Joyce Lofstrom

You're right. Boy, that is such interesting research. But everything you said, I agree with. It's social. It's how boys and young men are, I guess, raised by many people: It's okay to do all those things. Well, I'm kind of speechless because I just, I really just am so interested in what you're saying and I hope that people hear you because it's so important.

Michael Rovito

Thank you.

Joyce Lofstrom

So my last question is just about you and what you see ahead for your work as a researcher and an advocate for testicular cancer? Anything down the road you want to share with us or about your organization that you and your wife run together, the Male Wellness Collective?

Michael Rovito

Yeah, sure. I mean, with testicular cancer, I'm really focused on quality of life.

 And you know, survivorship is obviously a very important, almost the most important, outcome. But there's also other outcomes too, that need to be assessed. And just speaking with a lot of families and survivors and, and anyone that's listening, that's a survivor knows you're probably gonna be like, yeah, of course. But a lot of people don't understand this, that's outside of that circle, is that you're affected when you're young, testicular cancer, and the treatment that you get, yeah, you know, the chemo and, you know, radiotherapy and whatever is great, obviously. But there are some issues with that down the line. I'm not saying don't get it, of course, you got to get the treatment, but you got to be aware of the fact that I think they do count a lot of patients is like, you know, down the line, you know, there could be some concerns with like, there's auto toxicity, like with hearing, there's, you know, issues with blood vessels. And, you know, there's obviously, you know, the chemo brain and issues like with, you know, remembering, long-term memory, short-term memory stuff. And, but like, if you talk to these survivors, like down the line, there's like issues physiologically with them, even 20 years after treatment, 30 years after treatment, you know, with, you know, but not even just physically, the issue of losing a testicle could be monumental to a young guy, you lose a testicle, that could be part of your manhood, part of your identity. If you lost both, if it was bilateral, I mean, yo [might feel] 'castrated.' I mean, that's a huge issue. And if you're not counseled on  sperm banking and if a lot of guys I heard that they're, you know, young 20s, or I just cut off my testicle, and they don't really think about the sperm banking part of it, and they're not really counseled properly. 10 years later, they're kind of like, well, I want to have kids like, well, you can. And that's kind of like, oh, my God, like one of those OMG moments. And so there's these issues of quality of life post treatment that I'm really interested in bringing to the forefront. Because survivorship obviously is the most important thing. But there are things after that after treatment after survivorship that you need to be aware of that could come back to haunt you.

Even after your five-year scan, or you're cancer free. People are getting a recurrence after that. There's one guy I talked to about his third recurrence and he's 55. This is 20 years after his initial treatment. He got his third bout of it. It showed up in his lungs this time. And it's, he's like, Michael, this is 20 years after I first was diagnosed and treated, and I'm still dealing with it. He's like, every day I wake up, I think about it. Every day I go to bed, I think about it. I'm like, oh my God, man, that's 20 years of like a daily burden. He's like, yeah. Like that's got, I mean, you gotta factor that in. That's, yeah, he survived, but what's the quality of his life for 20 years, you know? So anyway, that's what I'm interested in going into next, bringing those issues to the forefront.

Joyce Lofstrom

Well, you know, I think that's so needed because it never goes away. I mean, I've had cancer six times and survived it. And every time I go for us, you know, it's I've been lucky with thyroid cancer and breast cancer. And but, you know, every time you go for a mammogram or you like right now, lymph node mapping for my thyroid. I mean, you think, I mean, I'm convinced they're going to find it, I'm going to die. And it's just, they're not. I mean, what I have is, at least so far, been very localized. But you're right, the quality of life afterwards, and I have a good quality of life. I'm not saying that, but it does, it affects people forever, and especially as you mentioned, losing a testicle is, you know, it is like losing part of your manhood. I'm speaking from a woman, I'm not, you know, a man, but it doesn't, and it's, you're right, people need to hear what you're doing and address the quality of life because it makes a big difference. And, again, I so believe in what you're doing and researching, so I appreciate that you would take the time to come and talk with me about it.

Michael Rovito

No, I appreciate the invite. Thank you so much. I really appreciate what you and your family and the Max Mallory Foundation is doing for everybody, so thank you for your time.

Joyce Lofstrom

We're all trying to work together, so I'll have you come back when some of your research is down the road and talk about it.

Michael Rovito

Anytime. Well, thank you again for the invite.

Joyce Lofstrom

OK, thanks.

Remember during Testicular Cancer Awareness Month to talk with your sons, brothers, husbands, partners, and others about this cancer that affects one in every 250 males during their lifetime. Teenage boys through men in their 50s can be diagnosed with testicular cancer. And in 2021, the American Cancer Society expects diagnosis of almost 9,500 men with this disease. And remember, about 440 of these men will die from testicular cancer. Be vigilant and speak up if you find a lump on your testicle. And join us next time for Don't Give Up on Testicular Cancer from the Max Mallory Foundation.

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