Don’t Give Up on Testicular Cancer

The Power of Positive in a Testicular Cancer Journey - Episode #17

March 11, 2021 The Max Mallory Foundation - Joyce Lofstrom host Season 1 Episode 17
Don’t Give Up on Testicular Cancer
The Power of Positive in a Testicular Cancer Journey - Episode #17
Show Notes Transcript

Anthony Mastrogiulio found his cancer family when diagnosed with testicular cancer. He used the power of positive throughout his journey of surgeries, chemotherapy, and testicular cancer advocacy.  Discover who belongs to this important group, why they matter,  and how Anthony helps others find support in their testicular cancer journey.  

Support the show (https://www.patreon.com/bePatron?u=60247613)

The Power of Positive in a Testicular Cancer Journey - Episode #17
56:03

SUMMARY KEYWORDS

testicular cancer, urologist, young adults with cancer, Max Mallory Foundation, 

 

00:12 Joyce Lofstrom

Welcome to Don't Give Up on Testicular Cancer where cancer survivors, caregivers, and others touched by cancer share their stories. The Max Mallory Foundation presents this podcast in honor and memory 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 a testicular cancer survivor, Anthony Mastro julio, and he's with us to tell his story and share some of the things that he's doing to help raise awareness about testicular cancer. 

So Anthony, thanks so much for joining me today.

 

00:55 Anthony Mastrogiulio

Thank you for having me.

 

00:58 Joyce Lofstrom 

I always like to start out the podcast by just asking our guest to just tell a little bit about his story, what happened with your cancer, and your journey. And so, I will turn it over to you. 

 

01:11 Anthony Mastrogiulio

Sure. Sounds good. And thank you again, for having me. I'm really excited to be on the podcast. And to be a small part of what you're doing here. I think it's really exciting. 

 

01:19 Joyce Lofstrom

Well, thank you, of course.

 

01:21 Anthony Mastrogiulio

So, my diagnosis started in February 2019. I was diagnosed around probably the third or fourth week of February,

I went to go for a visit to my urologist because I noticed a lump on my right testicle, probably around January. And the whole severity of the situation was overwhelming. So, it prompted me to kind of put it to the side, and I think like a lot of people would do, is just to say, "It's nothing, it'll go away and everything's going to be fine."

And then, you know, as days and weeks passed it, it grew exponentially. And that's really, you know, pushed me to say, "Okay, I need to get this checked out."

Because at the time, when it was getting pretty bad, I was a senior in college. I went to Pace University in lower Manhattan, and I was in my spring semester. 

I remember taking graduation photos and just walking through the school, and then, my graduation photo.  My face just looked really emaciated then,  kind of sunken in. And I was like, that looks really weird. I have really dark circles under my eyes. And I look drawn.

And I was like, "Okay, we'll put it aside."

Then, I walk into my next class, and I hit the stairs; I could not climb more than five to 10 steps. And I was like, "I need to go home and figure something out here."

Joyce Lofstrom
Wow.

Anthony Mastrogiulio
Yeah, like I need to get this address because at this point, it was, you know, traveling, the pain was traveling up my back and down my legs. And for me to not be able to do the stairs, I would say I am a normally active person, was really the most alarming part.

 

03:05 Joyce Lofstrom 

I can imagine that that would be. So, what happened next when you went to the urologist?

 

03:10 Anthony Mastrogiulio

So I, you know, I went home, and I spoke about it with my brother and my girlfriend. And he kind of directed towards ZocDoc, and we found a urologist there.

And it's funny because I never had a urologist before, which I think is a huge drawback for most young men and adults because a urologist is something that I personally feel that you should have a urologist and be visiting at least every six months if not more frequently. 

So for me to find this urologist was a godsend because the person that I found, and I went to go and visit, he ultimately led me to Memorial Sloan Kettering, which would later be my surgeon, maybe two to three days prior, following my urologist appointment. So, if I saw the urologist on Thursday, I was in the surgery room on Monday.

 

04:05 Joyce Lofstrom

That's amazing. And I also want to just comment on how you found your physician. Because that's, I've done a lot of work in health IT over my careers, or my career, and electronic health records. And I think being able to use that system and find somebody right away. I think that's just outstanding that you could do that. 

 

04:28 Anthony Mastrogiulio

So, yeah, it's really spectacular. You can type in a symptom that you're feeling, and they direct you to the doctor, because a lot of times when sharing my stories, a lot of the questions I have is, you know, how do you know who to go speak to if you have like an issue with your testicle or you're feeling this type of pain? And a lot of people wouldn't know that. That's a urologist situation that they deal with.

 

04:52 Joyce Lofstrom

Well, no, and they wouldn't, and I also like what you said about having a urologist as a member of your medical team. I think that's important for young men. So go ahead; you're at the surgery.

 

05:04 Anthony Mastrogiulio

So now after my urologist appointment, I basically showed up there, and anybody that knows me, I'm not early to anything. But this was the one appointment that I was pretty prompt to.

And when I got there, he took me right in. And it was, it's uncomfortable when, you know, the physical examination is just "Okay, drop your pants, or we're just gonna take care of this."

All right, you do that, but it all, you know swarms into a deep severity when, you know, he examines you, and then he immediately knows, and you can tell, like his emotions kind of flesh from his face, too. And, you know, I'll just never forget, after that examination, he just looked at me, he said that he's 99% sure this is testicular cancer.

All I could think of in my head is like, "Oh, geez, I have school in like a couple hours."

Kind of a rough one. And so, you know, he, he sent me for some scans that I had to do. So they were, you know, your CAT scans, your sonograms and your ultrasounds, a blood test.

And he said, "We'll wait for the results of those. And you know, I'll give you a call back next week."

So after that, I just met up with my brother and my girlfriend. We hopped in an Uber and went home. And that was the longest Uber I had in my life. And we went through with all those scans.

And by the time Monday came around, he had the results already. And he called at like 7 a.m.  And he said, "Listen, I'm just calling to confirm that what I told you in the office was true. It proves to be testicular cancer. So we need to have this removed yesterday."

Oh, wow, literally, is what he said, "We have to have this removed yesterday. And let's just go forward with the process. And, you know, just get ready to go forward."

And that was, you know, at that point, it really still didn't sink in yet, for some odd reason. Because everything just happened so fast. And so by the next day, I was treated at Memorial Sloan Kettering.

So I went there, and I met my surgeon. And he was fantastic. He was just very clear with what the plan was and how quick it was going to be. That was a really emphatic point because he said, "This is a 15-minute thing. You'll be in and out. And hopefully, this will be you know, the last bit."

And he was very well experienced in this procedure. So that brought comfort.

Joyce Lofstrom
Right.

Anthony Mastrogiulio
But then, he hit with the sentence of, "So we could do this tomorrow morning."
 
And I was like, "Oh, my, I don't know about that."
 
We ultimately ended up doing it the next day. If it was up to me, I would have said, "We could wait; I've already waited a few weeks, it'll be fine."
 
But my parents and my oldest brother came with me, and he was like, "Let's just get it done. Let's get it out of the way."
 
I'm like, "This isn't like, you know, we're planning dinner tonight. This is a big deal."

07:59 Anthony Mastrogiulio

And so, but it ultimately ended up being the best decision to do as quick as possible. Because as I would later learn in the process, the faster you hop on this disease, the better your outcome is because it moves so rapidly. It's truly incredible how aggressive the specific tumor could be.

So in doing so, with that surgery, I had the right orchiectomy done. And I went home that day. And it was great because I thought you know, everything was finished as to how quick it started. And I was able to go back to school the next following weeks and just kind of pick up where I left off.

And it's funny how when things happen that quick. You're in shock at everything, but you immediately want to jump into, "Okay, well I have this experience now maybe I can help other people, or maybe I can show you change your lifestyle habits. You start eating healthy, you start drinking healthier."

And then I'm going through school. and everything seems normal again. We go for the follow-up, and my doctor told me from the surgery that he noticed that there were lymph nodes that were inflamed from the sight of the incision going upwards.

Joyce Lofstrom
Oh, yeah.

Anthony Mastrogiulio
And that's when he said, "You know,  we'll go and do some, we'll do the CAT scans."
 
And my blood test showed that my tumor markers at the time, I'm in no way shape or form able to read what they meant, but from what he told me, the numbers were very elevated. And he was anticipated after that first surgery for the numbers to, I guess, flatline. And they didn't do that after the first surgery. 

So that was his major inclination that the tumor was still there somewhere, but he was just searching around for it. And then the CAT scan revealed that I had a few, well actually, several lymph nodes that were between my pelvic area and my chest that were kind of washing up, and you're..."Okay."
 
And at that point, I'll never forget that appointment going back was me, my mom, and my dad; we went back. And we weren't anticipating to hear this information yet, because we just came off the good news of the first surgery. 

So, we told my dad, we're like, "Listen, just wait outside in the car. We'll be right out; it'll be fine. There's like, there's like a little bakery next door to the hospital."  So we're like, "Go get, you know, go get some pastries. And we'll be right back out. And you know, give me a chocolate chip cookie, that sounds great."
 
And then, my mom and I go in there. And the doctor who is like, the most Cool-Hand-Luke person I ever met in my life, he comes in and he looks flustered. And I literally just looked at my mom, I said, "Gosh, geez."

10:50 Anthony Mastrogiulio

He basically just explained that you know, from his surgery, what he saw there, and what the CAT scan shows, and my tumor markers. That it looks like it spread to other areas.

And I was just really confused, because I thought, and this, this is the time where I really felt like maybe I did this to myself because I noticed this in January, I didn't speak up until February. And in discussing this with him, he said, he explained to me how aggressive this tumor grows and spreads and how waiting even a short period of time can make it spread rapidly. And the fact that it goes to your lymph nodes and your lymph nodes are everywhere, it can be pretty critical.

So just following that, he said, "Your options here are to do the RPLND. And it's just, you know, the incision between your pelvic and your chest area."

And it's, he explained it as an explorative surgery, where they're basically just going in and picking everywhere to see, you know, what they can take, and what they can leave, and what has the tumor cells on it.

That was like, you know, way out of left field I didn't. I've heard of this tremendous monstrous surgery before, but I never wanted to Google things. So I never googled anything during the whole process.

But when he told me that this was the next step, I was like, "Oh, my God." It's, it was just like, you know, hearing about something horrible that other people have gone through, and then he's telling you that this is the next step. But you really have no choice, you kind of just have to, like, you know, put your helmet on and keep going forward.

Joyce Lofstrom

That's true.

Anthony Mastrogiulio

And so we scheduled that surgery for a couple of weeks from that point. So at least, I was fortunate I had some time to prepare.

 

12:43 Joyce Lofstrom 

That's good. A couple of weeks.

 

12:44 Anthony Mastrogiulio

Yeah. So, I was able to go back to school. And, you know, just wrap up some of my classes. And the hardest part there was telling my friends and you know, my teachers, that I was going to be out for a little while. And at this point, it was already March, if my timeline is correct, and so there are only three or four months left of school. And this is like my semester I was supposed to be graduating, and I had a job lined up that I was supposed to start in August.

 

13:13 Joyce Lofstrom 

Okay, wow.

 

13:15 Anthony Mastrogiulio

Oh, it was fun. It wouldn't be this exciting if I didn't have all those little variables to it. But I had to tell my job. I tell my recruiter, my teachers, and my classmates. 

And what I found was that the support that people poured through was just overwhelming. It was truly incredible. I had my teachers were giving me assignments and homework to do at home, that I can do you know without being in the classroom, and they were really bending their capabilities for me, and I really appreciate that and my friends too. 

I  had friends that were doing all my classwork just because, oh, my surgery and recovery. I really didn't have much on me. And I can't even like begin to explain how amazing that was people, that like I would be hello and goodbye with or some of my best friends. They'd be like, "What's your homework for the week? Just give it to me and I'll get it done." I had one friend that we were friends but we didn't really know each other so well but literally did my entire class project for the semester.

 

14:23 Joyce Lofstrom 

Oh my.

 

14:25 Anthony Mastrogiulio

Yeah, I'm so grateful for that. And by the time I was ready to go into the surgery, most of my classwork was done, and I spoke to my job, and they delayed me for the year. So they said that I can take the year and go back later on. So I was extremely fortunate in that sense that I didn't have to worry about external factors, and I was able to just isolate my focus on this.

 So then, the day of the surgery, we kind of just went into the hospital, and I spoke to my doctor beforehand. And he just quickly explained to me that "It's gonna be, you know, about four to five hours on the table. And you're probably eight hours between like door-to-door, meaning, you know, you come in and then before you'll be in the REC,"  I think they call it, or like the recovery room.

And I was like, I always tried to keep things light, because at this point, I just, I really discovered more of the testicular cancer foundations, and one of them was Justin, he would notice. And he really shed the light on bringing humor to the situation.

So, I carry that with me; there is a lot of my journey. And so when the doctor told me that it's going to be, you know, four to five hours, but eight hours, and for the record.

And I remember, I was like, "Well, that doesn't really affect me, right?" I'm going to be asleep. So I'll see you when I see you. But my mom, on the other
hand, you need to have her on speed dial."

So, by the time that everything was finished, you know, I had my whole family. And I'm really fortunate that this wasn't during the time of COVID, where you can't have anybody in the hospital, I had my entire like, like troop over there, my entire family was waiting for me.

And when I came out of the surgery room, when I went to the REC room, I had like 30 of my family and friends and cousins or whatnot, just there waiting for me. And that was really nice. Because the first thing you want to do is, you want to see your family, and especially my mom is just like, let her know that you're okay.

Joyce Lofstrom
You're alive.

Anthony Mastrogiulio
Yes. I remember after my first surgery, when I woke up, they said, "Do you need anything?"
 
I was like, "No, but you need to, you need to get my mom there." 
"Are you okay?"
"No, I'm okay. But you need to tell me she's okay. I need to know she's okay."


16:48 Anthony Mastrogiulio
And after that, you know, the surgery was finished.

And then the real fun began where I had, I think, an eight- or nine-day stint in the hospital where that recovery was just tremendous. It was no eating, no drinking for the entire time. And I've never felt like your organs are just squishy inside for you.

But they, you know, really prompt you to get up and start walking right away. And you know, you're getting up and you're moving, but you have this major incision on your torso. So to move around, and everything has been shifted inside of you. It's just the weirdest feeling in the world. And it's very easy to get caught up and all of that.

I have to say, I had the best nursing staff and my personal support group, you know, consists of my family, especially, like my mom, my siblings, and my girlfriend, they were all, you know, really incredible and helping me push forward and we kept everything very positive and light. We must have played Uno about 15 times a day. By the time I left that hospital, I was so sick of it.

I even shared a room with a guy that had a different type of surgery, but also in the same area.  And he was just such a beacon of light. He started every day by saying,  "You know, let's make today a great day. And let's get up and do laps." And he, no exaggeration, did probably 17 laps a day.

Oh, every time, every time he was getting up, he would come around to my side and drag me out. And we would just do laps the whole day. And he was so so supportive. And it's incredible because, in an environment where the setting would just you know, naturally or maybe even typically, you would think that this would be very morbid and sad because of the nature of what you're dealing with.

But the amount of positivity that radiates through the hallways is incredible because people are given this new perspective and clarity. And I always kind of looked at it as like a cancer clarity where, you know, you're looking at this, and this is a real issue. This isn't, you know, something that bothers you; this is something that is life or death.

So you have to make the best of whatever situation you're in and, and I tell you, everybody in that hallway, did it every second of the day in the halls. You see another patient walking or you see another patient, you know, talking to the doctors, and you just smile and wave and you say hello and you just let them know that you're thinking of them. And it was just so so incredible.

And although the reason I was there was kind of sucky, I was very happy that I got to experience that because meeting those people was, it was, you know, an experience that I'll never forget. And I try to keep that positivity with me really with whatever I do.

And then, you know, I finally got to be released. from the hospital, and the recovery was kind of just moving forward from there. Now I had my, I had staples taken out; I was able to eat more solid foods. So they put me on a five-grams of fat diet for the next couple of weeks. That was nice because it's a big transition from ice chips.

Joyce Lofstrom
So, yes.

20:18 Anthony Mastrogiulio
And then, you know, I recovered and went about with everything as normal again. And, yeah, that was a lot more severe than the first surgery, you know, everything entailing it. 

But I was excited that I was finished with it, and thought that everything was behind me. I definitely felt like this was the worst of it. So, I remember, like, telling my mom and telling my girlfriend that, you know, "I'm done. Like, I'm good. This is finished, this is over. I don't want it anymore."

You hear the stories of like, people say, my family's very religious. So we always say like, "God only gives you what you can handle." And I was at that point where like, I'm good handling it now. Like, I've had enough stuff. But I'm good now. 

And so I went back to school, and I was finishing out. At this point, I literally had like four weeks left, and it was just coming up on graduation. And I was really fortunate, you know, to my roommate, especially, because when I left the hospital from the RPLND, I had about a week or two until my graduation ceremony. 

And I was so nervous that I either failed the class because I didn't do the work. Or I wouldn't be able to walk because I physically couldn't walk. But the amount of walking that my roommate and I did every day, it allowed me to build up the strength to actually go to Radio City and walk across the stage. And I couldn't, you know, help it.  

But I was like walking across in tears dripping on my robe. Oh, my Dean looked at me, and I don't think he really knew what was going on. But he just saw was a sobbing mess. He probably thought like, "Wow, this guy's really excited to graduate. And I'm really excited to give you a diploma."

But that was really awesome. I was so happy that I got to do that because I was very nervous I wouldn't be able to. But to be able to say that I went from that surgery to not being able to stand and walk, and then, being able to walk across the stage for my graduation was a really triumphant moment for me.  

I thank my cancer family because, without them, I wouldn't have been able to muster up the strength, or really like, the courage to do it. Part of it is not being physically able. The other part of it is like, I don't want to see people after, you know, I just went through all that because I don't feel great. And I don't want to have to explain everything. So I kind of just had to put that all aside, and you just go and do it because it's something that you want to do. And you don't want to say you didn't do it.

 

22:58 Joyce Lofstrom 

Right. Right. And you make a good point about walking after that surgery. Because as hard as it is, it helps I mean, oh, yeah, I just, you know, I've had abdominal surgery,  C-section, but it's the same thing...if you lie in bed and just think you can't do it. 

Yeah, finally try it. It's terrible. So I admire you for doing that. You and your roommate.

 

23:20 Anthony Mastrogiulio

Thank you. That's a great point. That's the thing they emphasize the most was walking, right? So every, every day, the nurses would come into the room, and they'd be like, "Hey, you gotta walk today." And I'm just like, "Hey, do I have to? Because it's very painful." 

And my doctor was very emphatic on no epidural. And I was, because the guy, the person I shared the room with had the epidural. So, he was like up and moving, ready to do jumping jacks.

So, he'd come around and be like, "Hey, let's go do this. Let's go climb the stairs. And I'm like, "It hurts when I breathe, man, like we just."

But like you said, it truly helps; that definitely expedited my recovery. Because if you don't walk, they say that fluid can build up, and maybe things don't heal the proper way.

So, we did a lot of laps and a lot of the nights where I couldn't sleep, you know, it's like, one or two o'clock in the morning. And you know, they're giving you medication to help the pain or to help you go to the bathroom and you're not, you're not falling asleep. You're wide awake and your mind is racing.

And I would literally just like peek over to my roommate, and he's up too.  "Hey, I can't sleep."  He goes. "Alright, let's go walk."

"Oh, no, that's not what I meant."

I remember one night, I couldn't sleep, and my nurse came in, and she gave me some pretty scary news that basically resulted in me to say like, "You need to walk. Otherwise, we need to take you back in and open you up again."

And I was like,  "Oh, my goodness gracious, I don't like that. Wow."

So, my roommate came back around because she was afraid of a bowel obstruction. Yeah, that I wasn't able to use the bathroom. And I really came around after she left the room.

 He goes, "Get up walking."

And we walked from like there at midnight or one o'clock in the morning, and we walked from 1 a.m. till about 4 a.m.  And I guarantee you, the medicine worked. But if it wasn't for him, I don't, I wouldn't have had the, you know, the inner strength to say to myself to get up and do that.

Joyce Lofstrom
Right.

Anthony Mastrogiulio
And that's my point of encouragement that the people around you give you there is just, you know, I've never felt that on the sidewalks in any street anywhere in the world. But in that little hallway, on that one floor, it's everywhere. It's just palpable, and I'm really grateful for that. 

I don't know if you have any questions right now. I don't want to monopolize. 

 

26:02  Joyce Lofstrom 

Oh, no, this is your story. I want you to talk. No, I, this is I mean, the one thing I remember from the blog post you wrote on Justin's page was about they took out six, was it 64 lymph nodes?

 

26:16 Anthony Mastrogiulio
Yeah, yeah, they took out the, they took out basically every lymph node that he could find, between my pelvis and, like, the lower part of my chest. And it resulted in being a 64. And luckily, only a few of them came back positive.

Joyce Lofstrom

Right, okay.

Anthony Mastrogiulio

But, and to give credit to my doctor and his surgical team, he, you know, that's a long time to be standing there. And just ever so carefully, just picking and picking, I don't know how he was able to do that. But it was incredible. And to pull out 64 of them, I was extremely grateful, because if he pulled out any less, maybe the one that he left behind could have been positive, and that would have been a big issue. 

So after he gave me those results, you know, we went home and he said, "We're just gonna wait for the biopsy to come back."
 
Because at this point, I didn't know the ones that came back positive; he had just told me he pulled out 64. So, I go home. 

And, you know, I do the graduation walk, and I'm just now recovering, and it's warmer out. So I'm able to walk around the block, and my girlfriend and I would try to walk as much as possible. 

And it was, she was really amazing in this whole process. We'd been dating at that point, for say about four or five years. And same age as me, I was 23 at the time; we were 22. And just stood by me every step of the way. 

She would always emphasize the point that everything is going to be great. If they tell you that you have to go through another surgery, fine; it's going to be great because you have a step, you have a next process that's going to help you. 

And if they tell you that, you know, you're done, and you don't have anything else to do, great, you're finished, you can, you can go on with it. 

That positivity is really paramount in helping you go forward. And that's just how I needed to hear, the support I needed to hear to cope, you know, to kind of hear that everything's going to be okay because reality already is heavy enough. So to have that positivity is, was really helpful.  

And he, you know, he told me that a few of the lymph nodes had come back positive. And his result was that we're gonna just wait because there were only a few of the lymph nodes. It wasn't a lot. And they were really far. I think he said, they were like, closer to my back. And so he really couldn't reach to get those because there's more towards my spine. 

I remember him telling me, he goes, "The next step would be chemo." But because there are not that many lymph nodes affected, and he says, "I haven't seen it growing," because this was one of the ones that were there from the very beginning from the CAT scan. 

And he said, "You know, it hasn't changed so much."
 
So we said, let's just leave it and we'll monitor it. He said at this point, "Zero rounds of chemo were better than two, and two rounds of chemo were better than four."
 
And I'll never forget that sentence because it's like, you know when somebody tells you something that this is so significant, you like take it, and you hold on to it for dear life. 

You're like, okay, zero is better than two, and two is better than four. Got it. I want to take that and I want to go to the bank with that. 

And you know, we went home, and everything was okay for a few months. Then my scans go back, and I have to do blood tests again and my blood test number went from zero to 0.2 

And I was like, "Okay, well, what does this mean?"
 
The nurse tells me she was, "You know, what sometimes is the mistake, the machine can sometimes be wrong. The doctor wants to do one more blood test next week, and then, we'll wait."
 
And I was like, "If this machine isn't wrong, I swear to geez, I'm gonna be so mad."
 
And I got that point. I started googling. I'm like, how frequently can a machine be wrong?

30:28 Joyce Lofstrom
Yes, your blood.

Anthony Mastrogiulio
And we go out the next week. 0.2 0.1. All right, great. We're going down, we're going in the right direction. And now, I think my doctor had become a little alarmed to it.

So we're repeating these blood tests pretty frequently, like every other day, or if not every week, and it was 0.2 0.1. And then the next one went 0.5 0.7 0.8. And we just watched it steadily grow. And this was all in a matter of like, two weeks.

And I literally just remember saying to myself, like, "I cannot believe this. It just does not go away, and it doesn't quit."

It was in August, the first day of August, actually, it was my mom's birthday. And my doctor called me and he said, "Hey, listen, you know, we looked at your, your results, and your scans and your blood tests are showing that you had another recurrence."

And now technically, this would be my second or third recurrence.

He said, "I know, I told you that we didn't want to do any treatment. And that zero was better than two, but it looks like you're gonna have to do four rounds of chemo."

And I was just so, you know, drawn at that point. And then to say, we were going to do four rounds; it is going to be Monday through Friday, every day. And then you'll do one week on, two weeks off. When we've done two weeks off, we'll do that for about four months. And what are you supposed to say at that point?

It's like, "Hey, thanks. Have a good day."

Yeah, that was, that was probably the worst of it that I heard because when I heard the RPLND, it was like, you know, I only had that one surgery at that point. So I was kinda like, okay, yeah, I don't want anything else. 

But I feel like, after the RPLND and the orchiectomy, I was like, "Alright, I've seen the worst of it, I've done, I don't want anymore."

And then to be told that you could have had zero rounds of treatment, or you could have had two, but now you have to do four is just, I remember telling my girlfriend and my girlfriend and my mom and the rest of my family that I don't, I really don't want to do this treatment, because my body was just spent an emotionally I was spent. 

And that's where you know, the mental part of it really starts to kick in, because you're just exhausted, right? Because there's so much that goes into, you know, putting your head down and just going forward and not thinking about it, that you're just becoming numb to everything. So you just have to do what's in front of you and get it over with. 

But the thought of doing the chemotherapy was, there was a lot to wrap my head around. But, you know, it was one of those things, again, where you don't have the choice, you know, you just buckle up and you go through it, and you make the best of it. 

That's just how I cope with everything as I tried to make light of the situation and just, you know, make the best of it. It's not the best situation that you want to be in, but there's something positive that you can pull out of anything. Then, that was it. 

After that, I went on that the next weekend, I was sitting with my girlfriend, and I was like I need to just get out of here; I need to go somewhere and just get away from my house for a little bit. 

And that Thursday, we booked a bus ticket the next day to go to DC. And we took a bus down to DC, and it was the best trip ever because it was spontaneous. And it was such a nice release from everything.

 

34:09 Anthony Mastrogiulio                                                                                                 And I saw a lot of really fantastic monuments and these, these pillars of our country that kind of lead by example. And to think of a time period there where it's kind of different, where there were wars going around and people fighting true violence was happening.

And to think about that and to say like, "Okay, you're not the only person that has to go through something so traumatic; there's always somebody that's going through something worse or somebody that that has to go through something as well."

So, and I remember a point where I was doing a scan, and I saw a little kid that was also doing the scan similar to mine, but his was the MRI where they have to do your whole body and I think like a PET scan. And he must have been like under 10.

In my head, I'm nervous and feeling bad for myself. But can you imagine how he feels right now, and so to keep that in mind and to just go forward, but like, I'm gonna go through this and get this over with, but when I'm done, I'm going to use this to help somebody else because I can't just, I can't just go through this entire experience and feel like this was all for nothing.

Because it wouldn't be worth it for me that I have to at least feel like, okay, I went through this to be able to share my story with other people and help them and that's what makes me feel good about, you know what I had to do.

And that was it. Before I knew it. I came back and then the next. I think the next day or two, I was back at the hospital and doing treatment. I did treatment from I want to say, like August to about November.

Joyce Lofstrom
Okay. 

35:52 Anthony Mastrogiulio
Yep. And thankfully, that was the last step. Yeah.

Joyce Lofstrom
That's the many steps though, Anthony. So, wow, you're a very giving person. I can tell your positivity had to make a big, big difference on just getting through it. 

36:03  Anthony Mastrogiulio                                                                                                  Yeah, it was definitely instrumental. But it wasn't something that, you know, I could have done on my own. Like, it's not like, you can sit by yourself and be like, I'm gonna be uber positive today. It's just not gonna happen. 

 

36:19 Joyce Lofstrom                                                                                                                    No, it's not. It's okay.

 

36:21 Anthony Mastrogiulio                                                                                                     Yeah, no, absolutely. But it comes from other people. And it comes from people that have been in those shoes before you who could say like, "Listen, I've been through this, it's gonna suck, but it's okay. And you're gonna get through it. And this is how I got through it."

And having those experiences and those conversations with people, some with the same diagnosis, and some with other diagnoses, was just, you know, really powerful. And that's what, what helped me move forward.

 

36:48 Joyce Lofstrom                                                                                                               What was your biggest challenge? In all of this, you know, your journey of treatments? Do you have something that stands out? You know, that was made it just a challenge for you?


36:58 Anthony Mastrogiulio                                                                                                      The biggest challenge during everything was, I would probably say, aside from the timing of it, all right, it's just, it happens. And I always felt like, this could have been the worst timing, but I don't think there's ever a good time to be told that you have cancer.

But just the fact, you know, you're, you're going through those formative years where, you know, you're looking to get a job, and you're looking to establish yourself, you know, professionally and personally and, and then it kind of throws everything for a loop.

Then when you're done, you have to reassess and rebuild and start basically, from scratch. I found that to be pretty challenging, but more challenging during was just the, you know, looking at your image of yourself and how everything can change so quickly. That was very tough, especially after, the RPLND, and things change.

But it felt really different after the RPLND. because your body is just, I always felt like it was hard to look in the mirror for a little while. But as time passes, and you speak to more people who had it too, and you come to grips with the fact like, "Hey, you know, I didn't wake up one day and be like, you know, it'd be a really good idea today. And our RPLND sounds great. And then we'll get sandwiches after."

It's just not the case.

Joyce Lofstrom

No, it's not. It's not something that you chose. So, you know, don't give it so much power over you to say like, Oh, my God, look what my body looks like, look at what happened is just, you can't go into that, that mindset, although it's, it's easy to do that. And sometimes your mind wants to do that. You just have to remember, like, this isn't what I chose. So I'm not going to give it that much power, to control my mind and my day.  And that definitely takes time. That's not something that I was able to kind of come to grips with, right after this surgery.


38:52 Joyce Lofstrom
I also think, I wanted to comment on your location, because as you mentioned earlier about using, you know, the ZocDoc platform, but also your Memorial Sloan Kettering, which is you know, one of the best in the country. So, I know a lot of people travel to go there for testicular cancer, so I just think that's a nice advantage.

 

39:16 Anthony Mastrogiulio

Yeah, yeah, it was. And to emphasize the point before, with my doctor that I found on ZocDoc, I didn't have like a connection into Memorial Sloan Kettering. It was my doctor that I found randomly on ZocDoc, that was like, "Hey, I know this doctor. He does these surgeries more than anybody in the world. He's a good friend of mine. That's where you're gonna go."

Joyce Lofstrom     
                                                                                                                         Okay.


Anthony Mastrogiulio         
                                                                                                         And if I didn't choose this one doctor out of the list of 700 of them, I might not have been able to get into Sloan. Not saying that I would have had a different result anywhere else. But I was extremely happy and fortunate that I got into Sloan because like you said, people travel everywhere to get to this place, and It is true, right? I remember being in the lobby and people with luggage and suitcases just waited there. They're like, wow, this is, this is not why you want to take your suitcase out.

 

40:10 Joyce Lofstrom                                                                                                               That's true. That's true. Well, now, tell me about your, your life now. And I know you do a lot to raise awareness and give back, especially during Movember. So tell me about that.


40:25 Anthony Mastrogiulio                                                                                                    I was really fortunate that by the time, November came around this past year, I was pretty removed from everything, so I had time to heal. And I really wanted to find more ways to give back and to share my story. And that's always a process because the first time you share your story, it's extremely tough. But the more you do it, the easier it becomes. 

Movember was a really fantastic platform for me to be able to share my story and to share it not only to, you know, help me become more comfortable with it, and what has happened, but also to share it and help other people and actually raise money to, you know, create research and funding for this disease. 

And throughout the month of November, I was volunteering through them. And I, you know, I was just trying to think of ways to raise money to donate to the platform for the month. And a friend of mine gave me this idea as well, "Why don't you leave jars on the counters of the local businesses, since you know, COVID was pretty hot at that point, you could, you know, go about and do volunteer events. This is an easy way for people who go in and out, you just leave some change, and, and you can collect money that way." 

I think that's a really great idea. And so, you know, me and my girlfriend and my siblings, we went out and got these jars, and we cut holes in the tops. And I created this like label that went on the front. And it had two QR codes. 

One QR code was a way you can donate online, and the other QR code was you scan it. And, you know, it loads up this page that has my story on it. And at the bottom of it, it had, you know, tips of how to check yourself and who to contact if you find something and what the symptoms are that you need to look for. And just, you know, key facts and statistics and things that basically like, I wish I knew before, I guess I noticed I had an issue. 

If you, if you know these, these details about how quick it can grow, or how easy it is to detect. And just the simple idea of just saying, you know, I need to go speak to somebody to check this out, your process could be just an orchiectomy and done if that is the case, right? 

Instead of going through the whole, you know, the whole nine rounds down the entire stretch, that's something that I really focused on during my outreach for that month was, you know, if you see something or you feel something, speak up, speak up right away, because it is a big difference that a week or two weeks can make and that's something that I really wish I did. Because who knows what that path, how could have been different. 

In doing so, I would give out these jars to these businesses. And I would speak to the, you know if the owners were there, or whoever was working there, and I'd share my story with them. And it was a really positive and uplifting experience to kind of reach out to your community to help a really, you know, I would say powerful cause.

I met so many fantastic people there. And one of my favorites was a diner that's in my local area here, and I used to go there after every week that I finished treatment. And I really enjoyed going there because their food was simple but it was so delicious. And it was a quiet environment where I wouldn't feel judged because I didn't have eyebrows

 

44:00 Anthony Mastrogiulio                                                                                                  When I went back there and I shared my story with him, and I told him what I was doing, the lady there she goes, "Oh I remember when you'd come here every time and you'd always order the same thing."  And she's like a really happy to see you're doing better. And it was just nice to get that family feel.

It just really brought out a feeling of connection, and it just grows your cancer family even more.

Joyce Lofstrom
Right.

Anthony Mastrogiulio                                                                                                                  It's not a matter of all you need to have cancer too.  It doesn't just affect people who are diagnosed; it affects your caregivers, the people who love you and support you, the people who just see you on the sidewalk. 

And that is really you know, an emphasis when you put that page up there, and you have people donating from everywhere.  Some you've met, and some you've never met before, but they just believe in that good cause, and that was the whole purpose of the MoJar initiative. 

And throughout that month, I posted on my social media page, just you know, quite like basically FAQs on testicular cancer and what to look out for. 

And you don't get a huge response back, because it's not like the sexiest topic. But I could definitely tell, or when people come back every once in a while, they say like, "You know, thank you for sharing that because I know I checked myself or you know, somebody I know was affected by this."

And that's what it's all about is just starting that conversation. It doesn't have to be for you in that particular time. It could be for somebody, you know, but just knowing that advice that helped is out there was really instrumental for me. So, I just wanted to pass that along.

 

45:39 Joyce Lofstrom

That's a wonderful way to do it. Because it's a local outreach, it makes a difference. Like you said, you don't know, until you hear from people. And sometimes you never hear but you know, somebody's been positively affected by that. So that's wonderful.

Anthony Mastrogiulio
Yeah, absolutely.

Joyce Lofstrom
So, you were working with some of the local journalists. I think I read that about just different people who were able to share your story. Is that right?

 

46:07 Anthony Mastrogiulio

Yeah, I was very fortunate, you know, in sharing my story, and the more you put yourself out there, the more people that come around, and they want to help, or they want to help you put your story out there.  

And it can get uncomfortable at times because you're talking about something extremely sensitive. But I always try to remember, like, when you're doing this, you're doing this, you know, to help somebody. And if somebody reads your story, and let's say they're affected by it, or somebody they know is affected by, they could say like, "Hey, you know, what, I know somebody that that had to go through this."

The whole point is to be able to reach back out and to help that person who's climbing up those steps that you were trying to climb up too. And that's, that's the main thing. And that's what really puts a blanket over that fear or that embarrassment, or, you know, like, oh, my God, look at what I look like now, or I can't forget to go through this, the idea of being able to help somebody who has to go through it, now.

It surpasses all those, you know, fearful emotions. 

So I was able to, to share my story with a few newspaper outlets, and they're all just extremely, you know, carrying it, and I would guess, emotional about it in the sense that everybody has been touched by this disease and in some way, shape or form. 

And to see the outreach that people are doing, like to give back or to help us to raise money, or just share your story to help somebody else. It's just really nice to see that, you know, people can come together for one effort, even though it's not like, it's not written on somebody's face that they've gone through something. 

But when you start talking to them about it, you're like, wow, you know, more people than you think are actually affected by this and going to connect like that and try to come together to help somebody is really, you know, incredible, just like what you're doing now. It's to come together and be able to work towards that one same goal of helping somebody else. There's nothing there's no better feeling than that.

 

48:16 Joyce Lofstrom 

No, you're right, Anthony, you really are. That's a very good point. And I like, I like doing this too. It's my way to give back because of Max. So, but tell me now, you're good, you're cancer-free. What are you doing now, your career, anything you want to share?

 

48:33 Anthony Mastrogiulio

Thankfully,  I'm cancer-free. Now. They actually, when I finished up my chemotherapy, told me that I was considered to be cured, because of my percentage of clearance, something like that. I am not medically knowledgeable at all. But he gave me a good percentage. He said like 97% of it is removed from it, something like that.

And I was like, "I will take that, and I'll take that to the bank this time."

So when he told me that he said, "You can actually be considered to be cured instead of in remission." And I was extremely, extremely grateful for that news. And I would be lying if I'd said like, you know, after that you go home and you're like, Ah, you know, like, you just took a clean shower, like everything is gone. 

It's not, you know, everything is still there. You still feel the emotions, and you still feel it to this day; not every day is great. But as time goes by, and you start to move on with everything, it makes it better and you find ways to deal you know. 

Like I said, my way of dealing is helping other people. Other people's way of dealing is just being like listen, this happened. It's behind me now. I'm just gonna move forward with it, and that's how you get like that clean shower feeling worse, right? 

Thankfully, everything has moved on. So, I'm working towards that, and you allow me to share my story. Your podcast is definitely contributing to that. 

I really thank you for that by going further. it's just now I'm, you know, I'm able to work now thankfully. I started a new job that, you know, I'm working on my professional career where I get to stay in accounting and do what I'm passionate about, but also affords me the time and the ability to focus on my volunteer efforts. And to, you know, think of ways that I can help people there or find new ways to share my story. 

And I'm just really happy to be able to have that experience and say that I went through this. And now I can take that and help somebody else. Because if I didn't have that experience, let's say, if I was never diagnosed, or I never had to go through what I had to go through, who knows if I would have even known this disease existed, right? And that's why I don't want to just let it slide behind me because I have to feel like okay, this happened for a reason. 

Sorry, that's the reason I'm going to make of it, and just going forward and helping people as is that reason for me, but, and now we have April coming up for Testicular Cancer Awareness Month. So now I'm thinking of new ways that I can, you know, help out and raise money for that, too. That's a great tie. 

 

51:15 Joyce Lofstrom

So my last question is, what would you, what advice would you give to young men who think they have testicular cancer? Or maybe are going through treatment? Any advice you have for them? 

 

51:30 Anthony Mastrogiulio

Sure, I would, so breaking it out into two, right. 

So the advice I would give to somebody who thinks they have testicular cancer, the first thing I would say is, go and get it checked out immediately. Don't wait, the harm is in waiting. Because if you find something small, you know, if you find a tiny lump on your testicle, and it's in those early stages, getting it checked out right away and getting it removed right away. 

That is, you know, instrumental in the path of potentially having testicular cancer and being done with it just as quickly as you found it. Also, don't google anything, because you could just have back pain, and they will be like, you have the worst type of cancer. iI's like, just go to a doctor and let the doctor inform you.  

Don't let Google tell you. So that's the advice I would give to somebody who, let's say, has found a lump on their testicle, I would say go find a urologist and get it checked out immediately. Don't wait on that. 

The second part is for somebody who's going through treatment, I would say to, just you know, keep plowing forward. You're going through this process, but the physical pain, and even the mental pain, is all temporary. It doesn't last forever. 

So, whatever situation that you're in, it seems horrible right now, not for no reason, because it's not the best situation, but it doesn't last forever. At some point, it'll pass one way or another. 

You just have to keep moving forward and make the best of it. So making the best of it is by, you know, bringing your Nintendo Switch and just distracting yourself from the situation and just getting on with it. 

Do it if this is making the best of it is by, you know, talking to the nurses and just asking them the silliest questions like what's your favorite lunch? Or what's your favorite cereal. Do it; it's, however, you need to deal. So just be selfish in that moment when you're allowed to be selfish to get through the agenda, get through. Take advantage of that, because it definitely helps. 

And I can definitely attest that I drove the nurses crazy at my treatment center because I would just ask them the silliest questions. And by the time I finished, like, I knew their favorite lunch, I knew their favorite cereal, I knew where their brothers went to school. It was just, it was just how I dealt right? Just by talking and having conversations to distract myself. 

So, I would say people go through treatment, just find what you need to help distract yourself and stay positive, and be selfish and just get through it. Because it doesn't last forever. So, going through it and making the best of it. And just remembering that it's all temporary.

 

54:14 Joyce Lofstrom

You know, I like your advice on putting yourself first, being selfish, what do you need to get through it? And I think that's a really good piece of advice. And it's also a good way, I think, to kind of finalize end our podcast. 

So, I really appreciate all the time you spent, Anthony; it was quite interesting and very helpful. I think, at least to me, I learned a lot just listening to you. So thank you. Thanks for all you're doing.

 

54:41 Anthony Mastrogiulio

I appreciate you having me on your podcast, and I again, I cannot thank you for enough for what you're doing too and sharing your stories and bringing, a spotlight to these types of stories. It helps people who are going through it now, I would think and I really think you're doing a fantastic job. 

 

55:00 Joyce Lofstrom

Well, thank you. We're a team approach with all the people out there trying to help.

 

55:05 Anthony Mastrogiulio

Absolutely.

 

55:06 Joyce Lofstrom

Okay, well, I hope maybe down the road, you can come back and maybe there'll be another date or whatever. So, thanks. 

 

55:13 Anthony Mastrogiulio

That was great. Yeah, thank you.

 

55:15 Joyce Lofstrom

Thanks so much for joining me today on Don't Give Up on Testicular Cancer from the Max Mallory Foundation. We have a website and it's at  maxmalloryfoundation.com, where you can learn more about testicular cancer, donate, and also send your ideas for guests on the podcast. And for spelling Mallory is m-a-l-l -o- r-y. 

Please join me next time for Don't Give Up on Testicular Cancer.