Ask Questions and Advocate for You: A 3x Testicular Cancer Survivor’s Advice

Mason Moore survived testicular cancer three times, with his first diagnosis in 2003, just two weeks before his wedding. He made the wedding as planned and became a vocal advocate for men's health and men taking responsibility for their health. The cancer returned in 2018 with a nodule in his right lung.

And again, in 2019, in the same lung, Mason will share the details of these diagnoses, which were testicular cancer. He continues to give back to the cancer community as a testicular cancer survivor and is now seven years cancer-free. 

Transcript

Ask Questions and Advocate for You: A 3x Testicular Cancer Survivor's Advice

Intro:

[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 non-profit 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

Mason Moore survived testicular cancer three times with his first diagnosis in 2003, just two weeks before his wedding, he made the wedding as planned and became a vocal advocate for men's health and men taking responsibility for their health. The cancer returned in 2018 with a nodule in his right lung.

And again, in 2019, in the same lung, Mason will share the details of these diagnoses, which were testicular cancer. He continues to give back to the cancer community as a testicular cancer survivor and is now seven years cancer-free. So, Mason, thanks so much for being with me. 

Mason Moore: Thank you so much for having me. I really appreciate.

Joyce Lofstrom: So, let's just start. Tell us your story, your testicular cancer story. 

Mason Moore: Yeah, I'm going to date myself a little bit here, but I'm going to take you all the way back to December of 2002. At the time, I was 28 years old, about to turn 29 [00:02:00], in great shape, busy with my career, and as most 28-year-old guys think, I thought I was indestructible.

Mason Moore: The main news there was that I was just a little over a month away from getting married to my beautiful wife, Carmen. So, with work holidays and planning for a wedding, I had a lot going on, needless to say. As the month went on, I started to feel less than 100%. I was tired.

Mason Moore: My, my workouts weren't going all that great. Something definitely felt off, and I just wrote it off to stress with everything going on. There was a lot going on, so I figured it was nothing to worry about. Then one day, when I was showering, I felt something strange. I found a lump about the size of a BB on my left testicle.

Mason Moore: Again, I figured it was nothing. Maybe it had always been there. I honestly didn't know what it was. Moving on, as the month went on, I started to feel worse and worse, and I also started to notice that the lump was growing. So finally, on January 7th of oh three, I visited my primary care physician.

Mason Moore: Really just hoping to find out, oh, it's nothing to worry about. Yeah, go on with all your plans, et cetera. That's where the whirlwind really began. Um, he immediately sent me off for an [00:03:00] ultrasound that was closely followed by a trip to, uh, a urologist. And within a matter of days, I was being told I had testicular cancer.

Mason Moore: Interestingly enough, on January 14th, I had surgery to remove my left testicle, and January 18th I got married. 

Joyce Lofstrom: Oh, Mason. 

Mason Moore: Definitely a whirlwind of, of, of course, after the wedding and an abbreviated honeymoon, um, I immediately came back and began three rounds of the BEP protocol that, I'm sure.

Mason Moore: You and all your listeners and viewers are familiar with. When all of this happened to me, I knew nothing about testicular cancer. I did not know the importance of men, uh, taking ownership of their health, doing regular self-examinations, and so on. So, um, it became a fast track for me to learn with what I was dealing with. The good news is that I went through the three rounds of BEP. Everything turned out great. Uh, went on surveillance for five years with regular CT scans and blood work, and all was good. So, after year five, I was told I was cancer-free at that point and allowed to move on with my life.

Joyce Lofstrom: Well, I know once you got through the orchiectomy [00:04:00] in the BEP, you really started to give back. I wanted to talk about that, just how you've helped since your diagnosis, help other men understand what to do if they, fill up or something unusual. Would you talk about that?

Mason Moore: Yeah, it immediately became a mission of mine to advocate for awareness of not only testicular cancer, but of men needing to take ownership of their health in general. It's not something that we're taught, especially my generation, um, I'm Gen X, we were taught as young men that it was almost a badge of honor to not take care of yourself.

Mason Moore: You know, if you fell down and you heard something, rub some dirt on it, right? Or, it was, you were almost shunned from going to the doctor. So, I wanted to. Change that narrative. In the years that followed, I would speak at schools, colleges, and other organizations that focused on young people.

Mason Moore: And I would share my stories, the backdrop for not only raising awareness for testicular cancer, but that broader story of the need for men to take ownership of their health. 

Joyce Lofstrom: And I think that's so important because a lot of men don't, or they, as you said, I'd never heard of testicular cancer with Max, my son, and a lot of [00:05:00] men never had.

Joyce Lofstrom: So, I think that's wonderful that you could do that. Um, now we're going to go onto the next phase of this, but I really want to let our listeners know that your cancer came back after 15 years, and that's very unusual. It also returned to your lungs. So, can you tell us that saga that part of your story and what you did?

Mason Moore: Yeah, that's where the journey really got. Interesting. So, you mentioned the 15-year gap, which isn't typical at all. In February 2018, I was here in the Orlando area attending a local business networking event. something that I did comment for my profession.

Mason Moore: Um, and about midway through that luncheon, um, I was hit with a sharp, almost excruciating pain in my lower chest, upper abdomen, um, to the point where it had me doubled over in pain in the luncheon. I knew this wasn't my typical ache and pain. I knew it wasn't, you know, a pulled muscle, something like that.

Mason Moore: So, I had to think back to myself and say, okay, Mason, what have you been talking about for the last 15 years in these speaking engagements that you've been doing and all your advocacy work? [00:06:00] You need to take ownership of this situation. As you know, something's not. Not right. I was about 45 minutes away from home, so I, I kind of had a judgment call to make at that point.

Mason Moore: Um, and so I did something that I've never done in my life. Got on my trusted iPhone and found the nearest emergency room. 

Joyce Lofstrom: Hmm, wow. 

Mason Moore: Took my, took myself to, uh, an emergency room affiliated with a large health system here in the Orlando area. And they tested me for everything. I mean, was it a gallbladder issue?

Mason Moore: Was I having a cardiac issue? Uh, urinalysis, x-ray, et cetera? Nothing was, was showing up. Uh, you know, abnormal from that perspective. Luckily, the ER doctor, though, made a call that probably saved my life. He came to me and said, Mason, look, we, we know you have a history of testicular cancer.

Mason Moore: It's been 15 years, so the likelihood that this is a recurrence of that is, is minimal. But let's go ahead and do a CT scan of the chest, abdomen, and pelvis to see if there's anything there. So, they did that and uh, when they did the CT scan, they discovered a 1.6 centimeter [00:07:00] nodule on my right lung.

Mason Moore: So, from there, they said, "kay, Mason, we need to keep you overnight. We want to biopsy this and see what we have going on here. And so, they did just that. They kept me overnight. The next morning, they biopsied it, they sent me on my way, and said, ""ay, wewe'lle back in touch with you with what this is.

Mason Moore: Hopefully itit'sothing. The diagnosis that they came back with was that it was squamous cell carcinoma of the lung, which was very confusing because if you know anything about that disease, itit'slmost always associated with lifestyle smoking, things like that. I'I'veever smoked a day in my life.

Mason Moore: And so, I was at age 44 at that point. Faced with the situation of, okay, I'I'mow 44, and I'I'veow had two different types of cancers. What luck, right? 

Joyce Lofstrom: Yeah. Yeah, I know. 

Mason Moore: Thank goodness that the doctor did do that, because if it had been squamous cell carcinoma, which wewe'llalk more about in just a second, that is something that typically remains symptomless until itit'soo late.

Mason Moore: And so, for whatever reason, I had that pain, which we still dodon'tnow if it was related to what I was dealing with or not, got me to that er, and [00:08:00] it got me to that doctor who had the foresight to do a CT scan. The great news is that we caught it early. Uh, the bad news was, they said, okay, Mr.Moore, ththere'so adjuvant care that yoyou'reoing to have to do no chemo, no radiation, but we are going to have to remove the middle lobe of your right lung. 

Joyce Lofstrom: Oh wow. So 

Mason Moore: We did a robotic surgery where they removed the entire middle lobe of my right lung, and from there, I went on surveillance. 

Joyce Lofstrom: Wow. 

Joyce Lofstrom: So, you did that. I am just kind of shocked that all this happened.  And that it could come back as squamous cell lung cancer. Tell us what it really was or what happened next. 

Mason Moore: Yeah, and I will say, there at that point, there were two mistakes made, one by me and one by the health system.

Mason Moore: At that point, because I was ingrained in this health system and thought I was dealing with a different type of cancer, I did not involve my original oncologist. Oh. From my first cancer in oh three, um. The health sysystem'sistake was that they [00:09:00] thought we were dealing with a separate cancer, so they never ran my tumor markers.

Mason Moore: Oh, okay. So, we thought at that point this was a completely different cancer. They did not run my beta-HCG or alpha-fetoprotein. And so I went on a, a regular surveillance, uh, of every four months where I went in for CT scan and chest x-ray notice, no blood work or tumor markers checked. And so, I was actually in my second set of surveillance about eight months later.

WeWe'ret this point, December of 2018. And unfortunately, we discovered that the cancer was back. It was actually near the surgical line, right along the line of my middle and upper lobes. Interestingly enough, though, this nodule was much larger, and that really confused everyone because, if it were squamous cell carcinoma, excuse me, ththat'sypically a slow-growing cancer.

Mason Moore: This one grew over the course of eight months to a size almost four times as large as the original one. So, wewe'ret that point trying to figure out what to do. They biopsied this nodule again. They tested it and then sent it to three leading [00:10:00] cancer research systems across the country.

Mason Moore: And this time, they all came back, undeniably, that this was actually a germ cell tumor. Mm. Um. This was a recurrence of my original cancer 15 years later. 

Joyce Lofstrom: Yeah. 

Mason Moore: And so, at that point, when we got the biopsy results back, uh, we ran my tumor markers at that point, and of course, my beta HCG was elevated.

Mason Moore: It was 1700. 

Joyce Lofstrom: Okay. Wow. Yeah. 

Mason Moore: So, at that point, I got my original oncologist involved again, because, you know, we had been so successful in treating my first TC recurrence. Or my first case of TC, I should say. At that point, I was told I was stage four because I was now in my second recurrence, and I would have, you know, a 40 to 50% chance of surviving five years.

Mason Moore: So, at that point I was, I was faced with my mortality. The treatment from there began in February of 2019. I did end up doing three cycles of chemotherapy. I was originally prescribed four. I'I'llell a little bit more about that story in just a second, but [00:11:00] my local oncologist here in the Orlando area started things off with a cycle of VIP.

Mason Moore: Chemo regimen. And then, as he continued to do research and looked to try to find cases that were like mine, which was very difficult to do, he made the decision then to send me to a research system here in Florida. ItIt'slFlorida'snly NCI-certified system and 

Mason Moore: went there for inpatient chemo and started the TIP regimen. 

Joyce Lofstrom: Okay. 

Mason Moore: So, I was their inpatient. And the great news was that the TIP started working almost immediately. My tumor markers began to go down the mass immediately began to shrink. Where things got interesting and where I had another take ownership of your health moment was after the third cycle, um, my tumor markers are normal.

Mason Moore: They were almost non-existent, but the mass had stopped shrinking. And there was simply a mass still visible on the CT scans. And at that point, the, uh, the health system that I was at, uh, in Tampa, which is the system I was with, recommended that I come in for a fourth cycle of chemo, and that if the mass [00:12:00] dodoesn'thrink after the fourth cycle, the recommendation was to remove what was left of my right lung.

And so ththat'syeah. ThThat'shere I faced my next moment of ownership. I had been doing research throughout this 20-plus-year journey. And so, I wanted to ask some questions. So, I went back to that health system, and I said, look, I'I'veead instances where a mass will stop shrinking if itit'sll necrotic tissue, so basically scar tissue or dead tissue.

I said, "I"there any possibility thathat'se case here?" A"d they said that, thathat'sways a possibility. So, I then said, "Ok"y, well, if thathat'se case, if thathat'sen possible, could we switch or toggle from doing a CT scan to doing a PET scan, because it'it's understanding that in a PET scan, if thethere'sncer present, it will light up, it'it'llow as hot, and that would be a good indicator of what we have going on here."

Mason Moore: So, at that point, they prescribed a PET scan, and the PET scan came, the mask came back cold. Oh, wow. So, from a PET scan perspective, it was not showing live cancer. Their recommendation was still to do the fourth [00:13:00] cycle and see where we stood. So thathat'sen I asked another question.

 I said, time out. I want to ask some additional questions about this with some other folks. So, I went back to the surgeon who did my robotic lung surgery for the first recurrence. And I said, "He"Here'sat we have going on. Robotically, can you get to this mass and pull it out with enough margins, so that we could then biopsy this mass and get a definitive word on what it was?" 

"nd he said, absolutely. So, at that point, I then forced three different health systems, my original oncologist, the inpatient system that I was doing my chemo with, and now this surgeon, and in some cases, they compete with one another.

I had now forced all three of these systems to work together. And so, we had the surgery in May of 2019, and they were immediately able to take the mass and have it biopsied; the sursurgeon'sstem biopsied it. My local oncologist biopsied it, the system where I was doing chemo biopsied it, and then they sent it back to those three national systems that [00:14:00] had done the biopsy earlier, all came back definitively as being necrotic or dead tissue.

Joyce Lofstrom: Wow, thathat'snderful.

Mason Moore: So, at that point, I saved myself from having to do another round of TIP, which, just trust me. It was debilitating, but more importantly, I saved what was left of my right lung. So now, rather than having no right lung, I have half of one. 

Joyce Lofstrom: Wow, you. This story says a lot of things for all of us to think about.

First, I want to say the NCI, the National Cancer Institute, those organizations, I think there are about 29 or 30 across the country. So thathat'sst something to know that definition. But you were educated and read about it, and as we said earlier, you advocated for yourself. And I think we all have to be ready to do that because.

You knew, and you saved yourself a lot of pain and suffering. The story is just so fascinating to me. It just, why it happened to begin with, but then how the three organizations work together.

Mason Moore: Yeah. I diddidn'te that I had any option. Right. At that point, I [00:15:00] had a family, a young daughter, and, it sounds cliché, but no, I was literally fighting for my life. Yeah, you were. I wanted to be here for things with, for myself, my daughter, and my wife. If I diddidn'tke some tough decisions, if I diddidn'tk a lot of questions, that I might not be here today, youyou'llmember I was told, I had less than 50% chance of being here five years later. Well, I celebrated my seven years just three weeks ago. And so, thathat'swin in and of itself. And I tell people all the time when I talk with others who are dealing with this or something else, is that dondon'ter worry about being a pest.

DonDon'ter worry about being an advocate for yourself. Ask as many questions as you possibly need to because, as much as I'vI'veen treated by a phenomenal group of clinicians who have treated my disease. You still have to own the system because, at the end of the day, it'it'sout you.

Joyce Lofstrom: Oh, yep. ThaThat'sue. ThaThat'sactly right. So, tell us about your support system during all these different cancers, surgeries, and all of it. You had to have a good one. 

Mason Moore: I was very fortunate to have a tremendous support system during all my phases of my [00:16:00] journey. Starts with my amazing wife, who I probably still owe a proper honeymoon at this point.

Both of my parents were right by my side, through all three journeys as well. I also had a strong network of friends and professional colleagues who supported me every step of the way. However, some people. Might not be as fortunate as me. They may not have that strong a network, and I think it'it'stal that the entire cancer community make these people aware of the many resources, support groups, and systems available to them.

So that they can help navigate their battle. The same way that I might, I was very fortunate there, there are others who, who dondon'tve that system, there are resources out there that they can help them. So, it'it'sncumbent upon all of us to make sure they know about that. 

Joyce Lofstrom: Yeah, I agree. YouYou'reght. YouYou'resolutely right. I know that youyou're alum at the University of Central Florida and a good friend of one of our previous podcast guests, Dr. Michael Rovito, Ph.D., whowho'sso at UCF. Talk about just how you are working together with him on some of his wellness programs for menmen'salth.

Mason Moore: Absolutely. Yeah. I'mI'mry active with my alma mater, [00:17:00] the University of Central Florida. Dr. Rovito and I were introduced more than a decade ago. I think it was actually during one of my speaking engagements at UCF that I spoke to one of his cohorts. We fast became colleagues and friends. The work he'he'sing at UCF, as well as through his male wellness collective, is so vital and important.

So, to help start the work that he is doing at the university, I actually started the Mason Moore Fund for Testicular Cancer Research and Awareness. That fund helps support the various programs he and his team run every day. Some great work and raising awareness, developing the next group of clinicians who are going to help treat this disease, et cetera. Then, I also recently joined the board of directors for his male wellness collective as well. So really excited about that. But I am fortunate enough to be in a position to do something like that, and I felt an incumbent upon myself to do so.

Joyce Lofstrom: ThaThat's wonderful. I think that you can do that and give back. because I know he'he'sarted programs with your funds, that whole testicular cancer program there. So, thank you for doing that. I want to read a quote. I read this on your 2024 Instagram [00:18:00] account, and I would like your thoughts about your perspective now.

And so, herhere'se quote. "Mi"estones, especially those related to trauma, are very much a double-edged sword. They serve as motivation and should certainly be celebrated. On the flip side, their presence can make it more difficult to move on from the trauma and can leave you asking yourself, well, whawhat'sxt?" S", tell us about that quote.

Mason Moore: Yeah, it was something that, that I wrote as I was approaching that magical five-year number that I was told I might not make. I had a sense of melancholy around it. You would think, okay, youyou'veached this important goal. 

You should be super excited about it, and we certainly did celebrate it, but there was also almost a level of depression around it at the same time, because once you reach that milestone, thethere'sways the next milestone. And so, it makes it very hard for you to kind of move on. YouYou'llver forget that youyou'recancer survivor, nor should you, but thethere'spart of you emotionally that needs to be able to move past it, move past the worry that comes with it every [00:19:00] day. 

At least thathat'sat I think. And so, from that perspective, it makes it hard to do that. The other thing is that when you reach that milestone, and youyou'ved that level of, letlet'sy, success, whawhat'sxt? what becomes next? And I found myself in a spot where you hit this number that you thought you might not reach.

So, whawhat'sxt for you in life? WhaWhat'sxt for you as a cancer survivor? WhaWhat'sxt for you as a husband, a father, a son? All those things. And thathat'sally where the mental health side of being a cancer survivor comes into play. One thing I'vI'veid on many occasions is, again, I was treated by an amazing group of clinicians who treated me for the cure of the disease.

But one thing that was not spoken to me very much at all during my 20-plus-year journey as a cancer survivor has been the mental health side of this. Yeah. And thethere'sts of research out there that shows the connection between mental and physical health, you find yourself, as a cancer survivor at some point, almost feeling isolated. And so, I really found myself not equipped to know how to deal with that [00:20:00]. And so thathat'sy I said these milestones can be a double-edged sword because they can actually put you in a very strange place. 

Joyce Lofstrom: Yeah, I agree. Yep. So, what is next for you in life right now with your work, your family, whatever you want to talk about?

Mason Moore: WhaWhat'sminating our lives right now is our daughter, Marley, whowho's and graduating from high school in a couple of weeks. Everyone goes through that who is a parent. Marley is especially special to us, as all kids are to their parents.

But in our case, we werweren'ter supposed to be able to have her.  Of course, as part of the TC process, prior to my first go around with TC in oh three, we banked sperm because we wanted to start a family at some point. After I had recovered, we felt we were ready to start a family. We tried artificially to conceive, and we'we'reable to. And so, after that, my wife Carmen and I came to grips with the idea that we will never be parents. And we were okay with that. We resolved ourselves to that. And then, probably six months after we had that very tough [00:21:00] discussion, we found out we were pregnant. 

Joyce Lofstrom: Oh, wow. 

Mason Moore: Yes. And we had this little miracle baby that was never supposed to happen. And sheshe'sry special to us for that reason. But sheshe'saduating from high school, and she is actually going to the old manman'sma mater. SheShe'sing to attend the University of Central Florida and will be in the same college as Dr. Rovito. So, we'we'rery proud parents at this point. So thathat'sminating a lot of what we have going on right now. 

Joyce Lofstrom: Oh, thathat'sbig deal. I know. Wow. ThaThat'seat to hear all of it. Yeah. So, congrats.

Mason Moore: Thank you. 

Joyce Lofstrom: So, my last question, Mason, is what song, when you hear it, do you have to sing along 

Mason Moore: Lively Up Yourself by Bob Marley. 

Joyce Lofstrom: Okay. Oh, all right. Reggae. 

Mason Moore: My daudaughter'sme is Marley. Funny joke, I'lI'llll people that sheshe'smed after Bob Marley, and they go, "Oh"her namename'sley."

"ason Moore: And I go, "No,"it'sit's." An" then they look at me. Strange, but no, her name is Marley. And Bob Marley has a big role in our lives. And so, yeah. Lively Up Yourself by Bob Marley. 

Joyce Lofstrom: Okay. Yeah. ThatThat'sat music. It really is. Well, thanks for taking the time to [00:22:00] share everything with me, and I really applaud what you'you'reng to give back, and I'm I'md you'you'ree and made it through all of it.

 So, I'd I'de you to come back in a year or so and let us know what you'you'reng with everything. 

Mason Moore: Absolutely. Anytime. I would love to. 

Joyce Lofstrom: Okay. Alright, well, thank you, Mason. 

Mason Moore: Thanks, Joyce. 

Joyce Lofstrom: Okay, bye.

Outro: Thank you for watching this episode of Don'Don'te Up on Testicular Cancer. If you enjoyed this podcast, please subscribe to our program on your favorite podcast directory. You can also visit the Max Mallory Foundation at www.maxmalloryfoundation.com/podcast to listen to previous podcast episodes or donate to the foundation.

Join us again next time for another episode of Don'Don'te Up on Testicular [00:23:00] Cancer.