Keeping Moving – Advice from a Board-Certified Oncology Physical Therapist and Testicular Cancer Survivor

Scott Capozza, PT, MSPT, is a board-certified physical therapist who specializes in oncology at Yale Cancer Center.

More than 20 years ago, he was diagnosed with testicular cancer while in graduate school at age 22. As he explained in an article about his cancer journey, “Suddenly I had to schedule an orchiectomy, a retroperitoneal lymph node dissection, and two cycles of chemotherapy around lectures, laboratory work, and practical exams.”

Scott shares his experiences with testicular cancer then and now, along with what he's doing to support cancer patients and survivors through physical therapy.  

Patient advocacy: Recently, as a patient advocate and testicular cancer survivor, Scott has spoken at conferences to share his lived experiences. He explains this role in the podcast.

"It almost is our responsibility or our obligation to get in front of these medical providers to say, you have to listen to your patients. You have to make these shared decisions with your patient. You can't blindly take the shotgun approach, give the treatment, and be done with it. You have to factor in quality of life. You have to factor in who that person is..."

Hear more from Scott Capozza about his work as an oncology-focused physical therapist, father, patient advocate, and testicular cancer survivor in this episode of Don't Give Up on Testicular Cancer from the Max Mallory Foundation. 

Transcript

Keeping Moving – Advice from a Board-Certified Oncology Physical Therapist and Testicular Cancer Survivor 

Introduction: [00:00:00] 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. 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 [00:01:00] survivor.

Joyce Lofstrom: Hi, this is Joyce, and with me today is Scott Capozza, PT, MSPT. He's a board-certified physical therapist who specializes in oncology at Yale Cancer Center.

He was diagnosed with testicular cancer while in graduate school at age 22, which is more than 20 years ago. In an article I read about him, he wrote, “Suddenly, I had to schedule an orchiectomy, a retroperitoneal lymph node dissection, and two cycles of chemotherapy around lectures, laboratory work, and practical exams.”

Scott shares his experiences with testicular cancer then and now, along with what he's doing to support cancer patients and survivors through physical therapy. So thanks for joining me, Scott. 

Scott Capozza: Thank you for having me, Joyce. 

Joyce Lofstrom: So let's start, and just before we get into your testicular cancer story, tell us a little bit [00:02:00] about what you do as a physical therapist who specializes in oncology.

I really think that's interesting and relevant to all of our listeners. 

Scott Capozza: It's interesting because when I graduated from Ithaca College with my physical therapy degree over 25 years ago, oncology, physical therapy wasn't really a thing. Even if I wanted to go into that profession, that branch of physical therapy, it really wasn't a thing because 25, 30 years ago, oncologists were telling their patients, don't move.

Don't exercise. Exercise was actually contraindicated back then. And now thankfully, we've had years of research that has shown the benefits of exercise first in the survivorship phase to help people recover from their treatments and also to live healthy lifestyles to prevent secondary cancers and to mitigate cancer- [00:03:00] related fatigue and all of those types of things.

The research has continued to move upstream and so then there was a lot of work done with individuals who were in the middle of active treatment, understanding that patients can exercise and should exercise when they're getting chemotherapy, when they're getting radiation therapy, because again, they can mitigate cancer related fatigue, helps them maintain their function, and really their independence, while they're in the middle of treatment.

Now, we're even seeing on what I would call the prehab side of things, that first stage when individuals are first diagnosed with cancer. If you have an opportunity to work with them before surgery, and you have an opportunity to get them stronger, that's going to help improve their post-surgical outcomes and their outcomes as they move forward. But that wasn't a thing, 25, 30 years ago. 

So, honestly, when I graduated from physical therapy school, [00:04:00] I went into pediatric oncology, or pediatrics rather. My last clinical rotation was a school system outside of Washington, D.C., and when I was done, I said, Well, you got to pay me to play with kids.

Sure, I'll do that. And again, the board certification in oncology wasn't even developed yet. I mean, it was being worked on, but it wasn't developed. Board certification in physical therapy through the American Physical Therapy Association didn't come about until 2019.

It took years to develop it. And so I realized that in my work in the adult cancer survivorship clinic that I work with here at Yale Cancer, I would see these patients in survivorship, I would assess them: your range of motion is still a little affected by radiation, or you still have neuropathy in your feet, so you probably need physical therapy.

Scott Capozza: And I was referring out because we didn't [00:05:00] have a dedicated physical therapist in our network to refer these patients to. We had a great lymphedema therapist, but that's only a subset of oncology rehab. That's not the neuropathy, and that's not the deconditioning and all the other adverse effects that we see from treatment.

I kind of started down this path of, well, I'm a physical therapist, and I'm also a survivor, and I can actually maybe combine these two things and make that into my profession. When that certification was first offered to us as physical therapists in 2019, I was part of that first cohort that sat for it and took the exam.

 I was among 68 newly minted PTs in the whole country and the only one in the state of Connecticut. There were only three in New England who took that exam and passed it. So then, I used that when I jumped from [00:06:00] working in pediatrics to working in oncology full time, when I went to the providers at Smilow Cancer Hospital, and I said, I'm board certified in oncology.

 I want you to start sending me your patients. And because of the board certification, they recognized that as an extra step. I had done extensive studying and training to increase my knowledge base of working with individuals with cancer. And so, that's where I am now. I was Smilow Cancer Hospital's first dedicated physical therapist just for oncology rehab.

Scott Capozza: I've continued to work in a multidisciplinary survivorship clinic. And now, because of the caseload that I've developed and the relationships that I've created with these providers over the years, we were able to hire a second board-certified physical therapist this past summer.

And so we're really hoping to continue to expand that because [00:07:00] there's such a need for physical therapy and rehab for these patients. 

Joyce Lofstrom: You know, I think that's just fascinating to think about how your profession changed over those, what, 20 years with the need for the specialty that you have now.

It's also really positive that the medical profession has recognized that, or your profession. So, that's great. 

Well, tell us about your testicular cancer story. And you, you were stage two when you were diagnosed, you were in grad school, so tell us about it. 

Scott Capozza: And, and like many other young men who are diagnosed with testicular cancer, I didn't really fit the bill, so to speak.

I was 22, and I was a runner. I ran competitively at the high school level and at the collegiate level. So I ran cross country in the fall. I ran indoor track in the winter. I ran outdoor track in the spring. I had just run my first marathon one month before being diagnosed with testicular cancer.

Scott Capozza: [00:08:00] And I didn't drink, and I didn't smoke, and I didn't do drugs. I also didn't have a family history of cancer, specifically testicular cancer, but cancer in general. So I didn't, I didn't check any of those boxes, so I never would've thought that I would be the one who would get diagnosed with testicular cancer.

But that's what happened. I noticed a lump in my scrotum, and again, like many men, wrote it off and put it off, especially because I was in grad school. 

Joyce Lofstrom: Yeah. 

Scott Capozza: I didn't have time to go to the doctor. I was also like many young adults. I was away at school. I was six hours from home.

Joyce Lofstrom: Okay. 

Scott Capozza: I wasn't near my primary care physician. I wasn't near my parents. And so it had to have been on me to figure that out on my own as a 22-year-old in a city that's six hours from home. But the symptoms got [00:09:00] so to the point where I had to walk to the health center at the university.

And I reluctantly told the nurse there, because I had never mentioned any of this, not even to my roommate at that point. And she said, "You're going to the hospital right now." So I went to the hospital, and they did a biopsy, they did the blood work, they did a chest x-ray, and the ultrasound.

 And, you know, lo and behold, I am diagnosed with testicular cancer. And, Joyce, I distinctly remember that it was a Friday night. The urologist came in, and he gave me the diagnosis. My first response to him, again, classic young adult response. I can't deal with this right now because I have finals on Monday and Tuesday

Joyce Lofstrom: Yeah, right. I get that. Yeah. 

Scott Capozza: And then, after that, I am doing an internship as part of my program, one of the best sports medicine clinics here [00:10:00] in the city. So, I don't have time to deal with this right now. How about I deal with this over winter break?

Joyce Lofstrom: Oh, okay. And what did he say? 

Scott Capozza: "Well, he said, if you don't deal with this, it will kill you."

Joyce Lofstrom: Oh, wow. Okay. 

Scott Capozza: And so, all of a sudden, at 22, I'm, you know, facing my own mortality there. You hear this so often with other young men with testicular cancer, the juggling of school, and now all of a sudden, all of these medical appointments.

 I had to have the orchiectomy when finals were done. I was able to do my clinical, but I had to tell my instructor. All I told him was that I had a surgery, and I couldn't do any heavy lifting. I didn't want to, again, I didn't want to go into the details. I was still struggling with the diagnosis.

I didn't want to tell anybody that I didn't need to tell. 

Joyce Lofstrom: Right, right. 

Scott Capozza: And because I had waited so long, my tumor markers didn't come down, which necessitated the second surgery, the retroperitoneal lymph node dissection. [00:11:00] And I had a lot of complications from that surgery. And so instead of that being a five-to-seven-day stay in the hospital, I was in the hospital for a month.

Speaker: Oh my gosh, Scott. Really? Oh boy. 

Scott Capozza: I lost over 20 pounds. I was on complete bed rest for two weeks. So again, as a runner, as a former athlete, I lost all that muscle mass. Again, at that time, I'm still struggling. I'm in the last year of my program. I'm so close to getting my master's and being done. 

Scott Capozza: I am calling the dean of my school, and I'm apologizing for missing class. I finally had to tell him. He said, "Don't you apologize. We will figure this out." 

But, you know, there was never a time that I wanted to be in lab or to take an exam than when I was on bedrest for all that time. So, I get out of the [00:12:00] hospital, and I came to an agreement with my doctor. I said, I need to catch up on work. It's really important to me that I've tried to finish as much of my didactic as I can. So, I was able to postpone chemotherapy for a couple of months until I was able to finish the academic aspect of my program. 

Then, when my classmates all went off on their last clinical rotation, that's when I came home, finally, and I got my chemotherapy at my hometown hospital. So that way, I was, was living with my parents. My grandparents were there. My hometown friends were there.

Scott Capozza: And so that's where I got my chemotherapy. Ithaca was great in that they just pushed my clinical back three months so that I could finish chemo and be done with that. This last year of my program, I had the diagnosis and the treatment all woven into that as well.

So in that 12-month [00:13:00] span, I did my master's program, and I did. treatment for testicular cancer. 

Joyce Lofstrom: So I was going to ask you, and you kind of hinted at it, who was your support group through all of this, because that's a lot back and forth with school and cancer and treatment.

Scott Capozza: My parents came up when I had surgery. Thankfully, there was a Ronald McDonald House that was associated with the hospital up in Rochester, New York. And even though I wasn't technically in pediatrics anymore, they allowed my parents to stay there. So, that was great.

Scott Capozza: Oh, again, my classmates were great. I tell this story all the time, Joyce, again, to talk about the difference where we were back then with rehab and where we are now. In those four weeks that I was in the hospital, for that one month that I was in the hospital, never once did they put a PT referral in for me.

Not once. 

So it was my [00:14:00] friends, it was my classmates when they came to visit me. They're the ones that got me up out of bed. They said, "We need to get you walking." 

Joyce Lofstrom: That is so interesting. 

Scott Capozza: I distinctly remember my friend Marissa came one day, and she was appalled that none of my doctors had put in a PT referral. She went right into the hall. She was looking for a walker. She couldn't find a walker, and she said, "Forget it. I'm just going to take you for a walk." We grabbed my IV pole, and I held onto the IV pole with one hand. I held onto her arm, the other side, and we just went for a walk down the hall.

And that was my physical therapy. It was my friend and classmate who did that. So, yes, my classmates. Stood by me. They supported me. My buddies from school stayed with me. They were great in the sense that they treated me normally. 

Joyce Lofstrom: Right. 

Scott Capozza: You know, again, this whole idea of being normal.

Scott Capozza: And not wanting to be treated like a cancer patient when my immune system allowed. [00:15:00] We would still go out to bars, and we went out to ball games. We did all the things that 23-year-old guys are supposed to do. And they didn't care that I was bald and had to wear a hat everywhere I went.

They just said, you know, let's go, let's go do it. And so, that was my support group. My friends would come down and visit me on the weekends when I was getting chemotherapy from school. So I really was fortunate in some ways that I was still in school at that time, because I had my close-knit community. We've been together for four-and-a-half, five years, so that was very fortunate that I had my friends from school.

Joyce Lofstrom: Yeah, it is, I mean, my friends have always been a huge support for me throughout my life, you know, good times and challenging times. I wanted you to talk a little bit about fertility issues and what you experienced and any advice that you might have for other survivors who might face similar challenges with fertility, [00:16:00] anything you're comfortable sharing.

Scott Capozza: I will say that I am very fortunate that my surgeon, the one who performed the retroperitoneal lymph node dissection. He was an oncology surgeon, and so he had done this procedure before. He knew the risks to fertility going into it. 

And so he did tell me, he said, there is a chance the nerve that controls ejaculation could be sacrificed or damaged in this surgery. So if you ever wanna potentially have a family, you need to do sperm banking before. And he said, I'm gonna give you three or four weeks. And you know, I'm 22. I did not have a girlfriend. Having a family was the last thing on my radar at this point, again, with trying to juggle school and the cancer diagnosis.

 But because he brought it up, and he recommended it to me. I was able to do that. I was able to do the sperm banking for three weeks leading up to the surgery, which I'm grateful I did because there was [00:17:00] damage to the nerves, and then I had chemotherapy after that, and that affected the sperm count as well.

So, it was kind of a double whammy when my wife and I got married, and we decided it was time to start family planning. We did try to use that. We had several unsuccessful attempts, unfortunately.

We went through everything that had been banked to get our son, our older son. But we knew that we wanted to have more children. The fertility clinic that I worked with at Yale was great. We worked with this one doctor who said, "Well, you know, there's another way that we can try to get sperm out of you."

Scott Capozza: And so they were able to collect it from a different method. So it gave me hope that we would still have a possibility to increase the size of our family. 

And it worked. We ended up with twins.

Joyce Lofstrom: Oh, okay. Good. 

Scott Capozza: But my advice would be for any young adult, but obviously, especially for your audience.[00:18:00] So for anybody who's newly diagnosed to have that conversation, especially if chemotherapy or, you know, more extensive surgeries are on the horizon.

If the young man has an orchiectomy and that's the end of treatment, they don't have any other treatment, we know that the other testicle is viable and can still produce sperm. That's fine. It's the chemotherapy, it's the other surgeries where you run that risk, right?

Everybody has a different risk stratification that they have to talk through with their doctor. And then I would say on the survivorship side of things, like if somebody did not have that opportunity to sperm bank ahead of time. You know, maybe their treatment plan changed in the middle (of it), to work with your fertility clinic. We went to two different fertility clinics here in the state of Connecticut. We interviewed, essentially, the program at Yale and also the program at UConn because we wanted to see what our options were.

 At that time, Yale offered us more [00:19:00] opportunities. They were also in our insurance network. So that's another thing right there. There are different options and possibilities

Scott Capozza: Do your due diligence and interview different fertility clinics, a hospital-based fertility clinic, maybe a private practice fertility clinic, just to get a sense of what your options are before you make that decision. Because it's a major decision. 

Joyce Lofstrom: It is. And I think what you said at the beginning - that your surgeon gave you three or four weeks to bank sperm - not every young man has that timeframe. You know what I mean? Max, my son, had a couple of hours. It's nice to have that amount of time. But I also think it's good to know there are other options, 

Scott Capozza: Mm-hmm. 

Joyce Lofstrom: That's great. I wanted to go back to your running because you mentioned that you were a runner. So when you got through all of this, could you, or do you, run or exercise?  How did that turn out?

Scott Capozza: So I had to basically train [00:20:00] myself because again, I had no guidance. So yeah, having been a runner and being a physical therapist, I figured out, especially in chemo, I figured out the days that I would feel good after chemo. So I would go for a run, and I figured out really quickly after that first cycle of chemo, the days that I was not going to feel good.

Those are the days that I would not go for a run. But I needed it just as much mentally as I did physically. That's how I identified myself. That was my release. That was an opportunity for me to feel like I was me, right, and for me to feel that I was beating the cancer. So just as much as I needed to go for a run, physically for all the cardiovascular benefits, I needed it mentally and emotionally to get through that.

And so that's why, again, what I do professionally, now, it is so important that I try to emphasize that with my patients. It's not just the [00:21:00] physical, like building your muscle or keeping your heart strong. It's the emotional aspect of it. It's the mental aspect. It's that ability to have some autonomy back.

Joyce Lofstrom: Right, right. That's so important. Yep. 

Scott Capozza: I ran whenever I could for treatment. And then I was able to kind of rebuild myself after treatment, and I was able to get back into marathoning. I was able to run a few marathons, actually, and half marathons after that. I had a period where I was doing pretty well, and then kind of the late effects started to kick in. 

I don't have the same capacity to run that I used to. I've switched over to cycling because it's not as much of a stress on the cardiovascular system. When I was in treatment, I definitely went for a run whenever I could because it was just part of who I was.

Joyce Lofstrom: You know, I think you bring up a really interesting point too, about our emotional, our mental health, how important that is, as well as all the physical [00:22:00] stuff, you know?

Scott Capozza: Yeah. And I think that is, especially for young men, I think that that is glossed over. There's the stigma that we're guys, and we're supposed to be tough and all that.

Cancer is cancer. Cancer is tough for everybody, regardless of age and regardless of gender. Joyce, you probably have heard this before. I was in the chemo room. The social worker came over with all good intentions and said, "We have this support group. It'd be great if you could join it."

I looked around the chemo room, and I'm the youngest one in the chemo room by 30 years. 

Joyce Lofstrom: Yeah, yeah, I know. 

Scott Capozza: These folks have already had their kids, they have mortgages, like they're probably closer to retirement than they are to starting their careers. I'm trying to start my career. 

Joyce Lofstrom: Yeah. 

Scott Capozza: I don't have anything in common with them, so I didn't have that emotional support. I had to have some sort of emotional release. That was running, that was also [00:23:00] my friends, my non-cancer friends, because again, they treated me normally. 

They didn't see me as Scott, the cancer patient. They saw me just as Scott. And so that's what I needed mentally was to not be treated like a porcelain doll, like something fragile, that something's gonna break. I just needed to be treated like you would normally treat me. 

Joyce Lofstrom: That's great. Just again, thinking of friends and how important role that they play in keeping us going throughout our lives.

It's so important. You mentioned earlier, too, and I don't know if this is something you want or can talk about, but the genetics of cancer, and that you didn't fit the bill on that. And I'll just make a quick personal comment. I'm adopted, and my birth family, I've learned. My birth mother and all her sisters except one had cancer. So I do fit the bill, but what can you talk about with genetics and cancer, and just that topic? 

Scott Capozza: It's interesting, you should ask me that because, as I [00:24:00] said, I was really the first in my immediate family to get diagnosed with cancer.

I honestly feel like I was the first domino to fall. 

 Almost five years to the day that I was diagnosed, my younger brother was also diagnosed with testicular cancer. 

Joyce Lofstrom: Oh, oh really? Oh, Scott. Oh my. Okay. 

Scott Capozza:  I'll come back to that in a second. But then after that, our paternal uncle was diagnosed with prostate cancer, and then a few years after that, our father was diagnosed with prostate cancer.

Speaker: Okay. Oh my. All right. 

Scott Capozza: My brother and I were siblings now, and we're both testicular cancer survivors years ago. The NIH, the National Institutes of Health, was actually running a study to see if there was a genetic link to testicular cancer. 

They found the BRCA genes for breast cancer.

There was a researcher down there. I think I found it through Livestrong, that this researcher was trying [00:25:00] to see if there was a genetic link. And so you needed to be either brothers or like first male cousins to qualify. So not a big sample size, but still very important.

I have to say, like, it was very impressive going to NIH and just seeing the research that's being done there, walking through that facility, saying, wow, there's some, some really amazing things that are going on here. But unfortunately, the study closed before their grant ended, or the grant ended before they could finish it, because they just couldn't get enough of the numbers.

But the way that one of the researchers explained genetics to me while we were there. If you can see my cup. 

Joyce Lofstrom: Yeah. Yeah, I do.  

Scott Capozza: Everybody is born with some level of risk. [00:26:00] And so some people are born with a little bit of risk, and so they might be exposed to some environmental toxins.

 Their diet may not be great, maybe they experiment with smoking when they're in college or whatever. But because their risk, their genetics, they started with a low risk. Their cup never overflows, and they never get cancer. Some of us, based on our genetics, were already born with a high risk.

Joyce Lofstrom: Yeah. 

Scott Capozza: And so it didn't take much for us to be exposed to environmental toxins. Maybe be exposed to some secondhand smoke, maybe like my brother and I did. Swim in water that was around the corner from the nuclear power plant. 

Joyce Lofstrom: Oh, Scott, really? Oh, my oh gosh. 

Scott Capozza: And then our cups overflowed. 

And then we got cancer. That was how they explained [00:27:00] genetics to me in this sense of who gets it, who gets cancer, who doesn't get cancer. There are even more resources that have been done as far as, again, the role of diet, and again, environmental toxins, of maybe turning those genes on, or maybe it's more of turning genes off as far as telling the body to stop with cell proliferation or that sort of thing.

But I thought that was really interesting how he explained that to us. 

Joyce Lofstrom:  It's easy to understand, too, you know? 

Scott Capozza: Yeah. Well, and it's a great visualization, and I really think, Joyce, I really think that's going to be the future of oncology care is if they can actually really, truly get into our genes.

Joyce Lofstrom: Yeah. 

Scott Capozza: The perfect example that I see as a clinician is who develops chemotherapy-induced peripheral neuropathy. Women get Taxol, and that can cause [00:28:00] neuropathy. Individuals who have colorectal cancer get Oxaliplatin, and that can cause peripheral neuropathy in some people, but not in others. They get a very minor neuropathy. Just a little bit of numbness or tingling in their fingertips and toes. And other people, it is full-blown, their feet, their hands. And then, as a physical therapist, I'm worried about falls risk if they can't feel their feet.

Our occupational therapists are saying, if you can't button your shirt or tie a tie because you can't feel your fingertips. But is that based on genetics? How your body reacts to Taxol or how your body reacts to Oxaliplatin. And so, if your genetics, Joyce, if your genetics say, oh yeah, you're fine, it doesn’t, you can get Oxaliplatin, and it’s not going to affect you.

Great. Then you get Oxaliplatin, and you get that treatment for me. If I've got some genetic thing that [00:29:00] says, no, I'm going to have a really bad adverse reaction to Oxaliplatin, then it'll give me Oxaliplatin. You give me something else.

Joyce Lofstrom: Yep. 

Scott Capozza: That's personalized medicine, and that's looking into the genes. And I think that that's really where, you know, oncology treatment is going to go in the next five, 10 years. 

Joyce Lofstrom: Yeah, I agree with you. I've read about it in how you can target, like you just said, you can target the treatment to what you, Scott, or you, Joyce, need.

I think that's so it's cool. It's very nice that hopefully we'll get there. Well, I also wanted to ask you about one of the articles I read that you had written. It was about now, 20 years later, and living with cancer. 

 I'm going to read a quote from that article. I would just like your thoughts on it. And the quote is, "While we may be living clinically with no evidence of disease, we live with the evidence of the history of our disease every day. Like petrified trees or [00:30:00] fossilized shells, cancer treatments leave permanent, physical and psychological reminders of our cancer experience."

Joyce Lofstrom: And you've kind of talked about that already, but can you add to that perhaps? 

Scott Capozza: That was really the impetus for writing the article, because as young adults, we get misdiagnosed or we don't get diagnosed because we're young and we're otherwise healthy.

And so, a lot of times, by the time the diagnosis is made, it's a stage three or it's a stage four cancer. You don't assume to find testicular cancer or breast cancer or colorectal cancer in somebody who's in their twenties or thirties. And obviously, that's what we're seeing with trends now, and then, even after treatment.

Scott Capozza: Our hair grows back, and you can't see our scars, right? So on the outside we look fine, but inside we know that we have physiologically aged because of treatment. Our bodies have [00:31:00] had to work hard to rebuild themselves after surgery. Our bodies have had to continue to work hard to rebuild ourselves after chemotherapy and radiation therapy. Chemotherapy and radiation therapy can leave these permanent adverse effects on our bodies.

Scott Capozza: Issues with our cardiac system, damage to the heart, damage to the lungs, damage to the kidneys. It has been well documented in our pediatric population that chemotherapy at a young age can affect cognitive development.

Scott Capozza: So these things we live with for the rest of our lives, and especially as pediatric survivors and YA survivors. Hopefully, we'll have decades of life ahead of us, but that means we have decades of life to have to manage these late [00:32:00] effects. And you know, we talked about the fertility one. You can't tell from looking at me that I've had fertility issues.

Scott Capozza: You can't tell by looking at me from the outside that I now have pulmonary issues. Just like I can't tell with a lot of my patients that I see in survivorship, I don't know what's going on. With their heart. I don't know what's going on with their range of motion until I start diving into it.

Joyce Lofstrom: Right, right. 

Scott Capozza: That stays with us for the balance of our lives. And obviously, we're grateful to be alive. It's just that I think the medical community generally, as well as society, but I was really writing this from the perspective of increased awareness for healthcare providers. When you see cancer in somebody's chart, you have to be able to ask those pointed questions. You can't just gloss over that and say, they were diagnosed with cancer 20 years ago. And now they're standing here in front of me, and they look fine. So, I'm not [00:33:00] going to ask them any questions about that. 

Joyce Lofstrom: You're absolutely right. Gosh, it just makes me think about some of my history, too. But so what's next in life for you in your career or. Personal life or anything you wanna talk about with us? What's next? 

Scott Capozza: This year has been an incredible year of growth for me, Joyce. I've been very fortunate that I have been able to advocate for rehab, for our cancer patients, and our cancer survivors. I've been able to present at conferences to talk about the needs of physical therapy, which is great. This year, I had the added honor, which was pretty humbling, but also really necessary. I gave a couple of talks as the patient advocate. 

Joyce Lofstrom: Okay, that's great. 

Scott Capozza: Speaking at medical conferences as the patient and not as the provider. 

It's taken me, you know, over 20 years to find that voice. I found the voice of the professional, you know, beating the drum of oncology rehab and how important that is. I found that voice first. I've always been an advocate for survivorship, but now to do it on that level has been really eye-opening and really makes me understand that, for those of us who do have a lived experience, it almost is our responsibility or our obligation to get in front of these medical providers to say, you have to listen to your patients. You have to make these shared decisions with your patient. You can't just blindly do the shotgun approach, give the treatment, and then be done with it. Like you have to factor in quality of life. You have to factor in who that person is.

Scott Capozza: Does that person have little kids at home? Is that person still in school? You know, what [00:35:00] does that person do for work? All that needs to be factored into that. And so I think, you know, I think professionally where I want to continue to grow is to obviously continue to advocate for oncology rehab.

Scott Capozza: You know, within my own profession and then within the oncology profession, to make sure that oncologists, surgeons, and radiologists are sending these patients to rehab, but also continuing to work as a patient advocate. Yeah. To use my lived experience as proof that, you know, we're not necessarily otherwise healthy.

Joyce Lofstrom: Yeah. That's great. There's a place for that. I know, as you mentioned, the conferences you've been to in my career, a big part of it was in health it, PR and communications, and adoption of electronic health records. But patient advocacy became a big part of the [00:36:00] conference that we hosted. 

Just the discussion of what, as you said, the medical profession needs to hear from patients and what's going on with them. So I applaud you for doing that. That's wonderful. So my last question is, what song, when you hear it, do you have to sing along?

Scott Capozza: Oh, there are a lot, and I can embarrass my kids with a bunch of them. I am a child of the eighties. So, Pour Some Sugar on Me, by Def Leppard, is always a good one. Living on a Prayer, by Bon Jovi, is always a good one. 

If you reframed the question a little bit, as far as like, what is your walk-up song?

The baseball season just ended, so anytime everybody, somebody goes up to bat, they're playing a little clip of music. I think my walk-up song would be LL Cool J's, Mama Said Knock You Out. 

Joyce Lofstrom: I like that. Oh, that's great. Mine would be Twist and Shout by the Beatles.

Joyce Lofstrom: So that's my era, 

Joyce Lofstrom: This has been great, Scott. I think you've [00:37:00] opened up a whole area of discussion, at least for me, with testicular cancer, and I think our listeners, about the importance of physical therapy and that that should be part of your treatment and care. I'm just glad that we had a chance to talk, and you could share all that with us.

Scott Capozza: Yeah. Well, thank you. Thank you for having me, and thank you for doing this podcast, again, to elevate the importance of testicular cancer and how important it is through treatment, through survivorship, and all of it. 

Joyce Lofstrom:  It takes all of us to get it going and raise awareness.

 But I hope down the road, you'll come back and tell us more about what you're doing and what's going on with physical therapy. It's just fascinating. I think so. So thank you. 

Scott Capozza: Yeah, that'd be great. Thank you. 

Closing: Thank you for watching 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 [00:38:00] www.maxmalloryfoundation.com/podcast to listen to previous podcast episodes or donate to the foundation.

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