Don’t Give Up on Testicular Cancer

Why We Never Gave Up on Testicular Cancer - Episode #1

September 24, 2020 The Max Mallory Foundation - Joyce Lofstrom host Season 1 Episode 1
Don’t Give Up on Testicular Cancer
Why We Never Gave Up on Testicular Cancer - Episode #1
Chapters
Don’t Give Up on Testicular Cancer
Why We Never Gave Up on Testicular Cancer - Episode #1
Sep 24, 2020 Season 1 Episode 1
The Max Mallory Foundation - Joyce Lofstrom host

In this first episode of Don’t Give Up on Testicular  Cancer, learn more about Max Mallory who died at age 22 from testicular cancer. His dad, Chuck Mallory, shares Max’s story and the work of the Max Mallory Foundation, established to honor Max and build awareness about testicular cancer.

Show Notes Transcript

In this first episode of Don’t Give Up on Testicular  Cancer, learn more about Max Mallory who died at age 22 from testicular cancer. His dad, Chuck Mallory, shares Max’s story and the work of the Max Mallory Foundation, established to honor Max and build awareness about testicular cancer.

Don't Give Up on Testicular Cancer
Why We Never Gave Up on Testicular Cancer - Max's Dad - Episode 1

Joyce Lofstrom    00:11
Welcome to don't give up on testicular cancer, a weekly podcast where I talk with a testicular cancer survivor, caregiver, or others touched by cancer.

This podcast is produced by the Max Mallory Foundation, a nonprofit family foundation focused on education about testicular cancer in honor and memory of Max Mallory, who died in 2016 at age 22 from testicular cancer.

I am your host, Joyce Lofstrom, Max's mom, who is also a young adult and adult cancer survivor. Had he survived; Max wanted to help young adults with cancer. With that in mind, I started this podcast through the Max Mallory Foundation to share his story as well as insights from others who have survived and navigated the testicular cancer journey.

Each episode begins with a fact to know about testicular cancer, and today in our first episode, the fact comes from the MD Anderson website and provides information on risk factors for testicular cancer.

Here it is; this is on age. And it says most cases of testicular cancer occur between the ages of 15 and 40. And testicular cancer is the type of cancer found most often in men, ages 20 to 34.

So, today's guest is Chuck Mallory, who is Max's dad and the treasurer of the Max Mallory Foundation. Chuck is a writer of both fiction and nonfiction articles and books. He also manages the social media accounts for the Foundation, and he's with us to talk about Max's journey with testicular cancer.

So, Chuck, thanks so much for being the guest today on our first episode of Don't Give Up on Testicular Cancer. Welcome.

Chuck Mallory 1:59

Oh, well, thank you. I'm glad to be here.

Joyce Lofstrom 2:02
So, let's just start with Max's story. And why don't you tell us a little bit about Max Mallory, our son, and his journey with testicular cancer?

Chuck Mallory   2:12
Well, it was a strange journey, I've got to say, once Max was diagnosed with cancer, because, as you know, we were always aware of cancer and cancer affecting people all through Max's childhood, and more so, I think, than other people, because you had dealt with it in your 20s. And I had heard something you know about even testicular cancer when I was in my 20s.

But I believe what surprised both of us most in this case was how it came about that he had it because when this began, I would say the period when he didn't feel well, it was the summer really of 2015. And he had just graduated from college, in media arts and game development from the University of Wisconsin Whitewater. and got a job within the industry and was able to stay right in Whitewater.

It was the last time I visited him in Wisconsin, before he came to get medical treatment, he was really having some problems was in mid- September, I believe, maybe September 16.

Now before then, we had talked on the phone, and he had told me he thought he had maybe a urinary tract infection; at one time, he went to an urgent care clinic. They gave him some, I think, maybe antibiotics.

There was another time. He had that and maybe it was some stomach upset, went to a different urgent care center. And they said something like we think it's this. And it seemed like, you know he was taking care of it. Why wouldn't we all think that.

But I do remember the time in mid-September that we ate lunch at a good place, and we'd been there before, and he didn't finish his lunch. And I said, you know, what's the deal because you know, I still have my stomach trouble. And we talked a little about it and some of the things he could do.

So, I bring all of that up in detail, because when he came to Chicago, he'd been starting to have real bad cramping, strong pain, And stomach. And he finally I had encouraged him to come, he finally came in October, and stayed with me the night before.

And the next day I was at work, and it hit him so severely, he had to call 911. And he had an appointment, of course, that day to kind of check it out. And that was the beginning of knowing what this was.

And I mean, it was so stunning, because all the years sort of rolled back that night hearing the diagnosis, when they said he's got cancer; it has spread a spread in several locations and his body. And at that point, I think we didn't understand how could this happen?

But to find out later on that it was because of testicular cancer. And the story of him, like we thought we prevented it and how that whole journey happened, was just startling.

He was born with only one testicle. And he, you know, we didn't think as much about it, the doctor said, hey, this does happen. Let's just see if it descends these first few months. If not, we might have to do surgery and pull that down.

And I was terrified about the surgery of unavailable like 9-month to a year-old baby. But when he had the surgery, they said, there was nothing to pull down. He simply doesn't have the other testicle; he was only born with the one. In most people's mind, that would not make them think there was a possibility of testicular cancer.

And then it happened.

And that's just a big level of awareness that, of course, we want to work on, because he did go through so many stages of surgeries and treatments, chemotherapy, really fighting testicular cancer, when it was a surprise that he had to fight it at all. We never even thought about it being a possibility.

Joyce Lofstrom      7:12
I know you're right, Chuck, because, as you said, we had been told there was no testicle. And so, I didn't think about it. I didn't worry about it. And you know, as we reflect on what happened, neither did any of the pediatricians he saw over all those years, because he did go on a regular basis, and nobody questioned him having one testicle or what happened to the other one or any of that.

And, you know, based on what we know now and talking with other young men who have had a similar situation and diagnosis, it seems like that's a big piece of information to share for any young man that has only one testicle, just to make sure that you know what happened to the other and as you get older.

Chuck Mallory     7:58
Yes, and this is a focus of what I want, you know, some of the awareness I want to bring about that part of it.

Joyce Lofstrom     8:05
Well, I think that's good, because, you know, over all these years, because, he went to the doctor, and so forth. And I think it's interesting to me to think about why nobody asked him, and then, what do you as a parent, ask a doctor, what do you say to them? Because I think that's just something, as I just said, but to really be aware of that. And I think you have a really good personal insight on that too, because you had to deal with some of that as a teenager. And as you got older, can talk about that a little bit.

Chuck Mallory     8:38
Yeah, it's an interesting sort of two-generation story, I guess you could say, except that I didn't have testicular cancer. But what happened gave me some information, and maybe, not enough information or the right information.

So, when I was about 13, or 14, I began to be aware, maybe you know, a year or two earlier, that I had one testicle. And I think it was because entering puberty and starting to have gym class where you take showers and things like that, as opposed to just elementary school recess.

You know, it maybe just became noticeable. And I remember just thinking, Oh, this is something's not right here. I didn't grow up like our family, like saw each other. Some people see their brothers or sisters in the nude or whatever. But that didn't really happen to my family. And so, one thing about it was I knew that only having one testicle was not normal.

Although I didn't have anybody to talk to about it, back in the day, you know, as the late 60s, I didn't in my family. We didn't talk to our parents about anything and boys wouldn't talk to your mom probably about your health things. So, I thought maybe it will just come down; maybe, the other testicle will just magically appear. Which you know, it was a more innocent time more ignorant time to, you know.

Then, one day, it appeared. There was a mass there, and it was not really like a testicle, it was softer but not quite. So, I just thought, well, that's weird but now I have two.

And it was when I was about 17, I had a sort of a pain in my side, I guess I would say my abdomen. I truly thought was appendicitis, but wasn't sure; and on my own, I was 17 went to a doctor. And he was examining me, and he found out that I did have a hernia.

But he was poking around, and he said, “Do you also have a hydrocele”?

And I said, “What's that”?

And we talked about it. And I was more comfortable talking to a doctor than my own parents believe it or not, but it was a soft mass a watery mass, it was not a testicle. And he said that it has to be removed. And you know, he explained I just had one testicle, I'd function just fine, etc.

So that night I went home and actually told my parents, "Guess what; I need surgery."

Very strange. But see, I had that experience. What's odd about that is it was four years later when I was 21. And I went to see a doctor in Columbia, Missouri, where I was going to college. And you know, of course you know me then, and he said to me, it was like an overall exam and he said, “You know, here's something here.” 

And he was poking around. It was, you know, no young guy likes that. But it happened. And he said, “You have something here that's the size of kind of like a shriveled pea.”

And this was in my groin area. And he told me he thought it was an undescended testicle, and I said, “Oh no; I had this mass removed. And here's what it was.”

And he said, “Well, no, I don't think that the doctor removed the testicle.”

I said, “Well, I'd never had one. It was just this other thing.”

So no, that's not typical. So, you know, he did talk about it a little bit. And then I chose to have surgery on that, because he told me, and this is what was key.

I said, “Well, what difference does it make to take it out?”

He goes, “You have to,” because he goes, “having that undescended testicle there increases your testicular cancer chances times 40.”

I remember that specific term. Maybe that's what was believed at the time. So, I had that removed. And then I just thought, “Well, good. I can't get cancer now.”

Really nobody in my family had had it. So, I hadn't thought about it, even getting it, but I was falsely believing  I was not at any higher risk for testicular cancer, not to his credit. That may have been the thinking at the time.

It wasn't until Max was sick, and we were talking about testicular cancer. And he was talking about the chances of cancer with having an undescended testicle. I said to him, I said, “Well, you know, my chances are just like the normal public because I had my undescended testicle removed.”

And he said, “Well you know, you still have a higher chance of testicular cancer. And I said, "What"?  I didn't even know it till then. Which was when he was already sick, just in 2000, late 2015.

So, I had gone to doctors, and even in later years, and I had doctors asked me about it. I even had a doctor in the Chicago area. And this was post-2010, who used to always have a student come in when I had my checkup, because, and I'd given her permission. She wanted to show some of the students that she worked with someone who did actually have one testicle and what that was like.

But nobody said, “You do you know you have an increased chance of testicular cancer.” And I think it's something that people should know. There are tests you could take perhaps in a checkup that's a little bit above and beyond a regular blood profile checkup.

I mean, I didn't even know it; Max certainly didn't. That's the thing that people need to be aware of. If a boy has an undescended testicle, and then he is examined later, then it maybe it has to be brought down surgically. Maybe it was never there, but they had to do surgery to find that out. No matter what like that you would hear about a boy, I think always be aware that testicular cancer is at increased risk.

And this is not something that you can find by examining for a lump. There's a lot of great promotion from groups about here's how to check your testicles to look for a lump. And that word still needs to get out there too.

But there's this other awareness that a lot of people don't know about, which is if you ever had an undescended testicle removed, even if you had an artificial one put in. Even if you were just born with one, you still have that increased risk. And that's something you need to talk to your doctor about.

And pediatricians across the US and other places need to make sure they address this with their parents, maybe not the child himself, if he's pretty young, but always let the parents know this, let them know what kinds of tests could be done early to see if there's any kind of early detection.

Because if you get testicular cancer from an undescended testicle, you will probably never feel a lump in your other testicle, because that's not the source. So that's a big area of awareness that I believe the Max Mallory Foundation is going to get out there even more and more.

Granted, it's not a big audience. But it's a very crucial audience because these people have never heard this.

Joyce Lofstrom     16:35

And you're right, Chuck. And I know, in a future episode, we'll talk more in detail about the type of cancer Max had, which is choriocarcinoma, and it was very aggressive in him. And I think by nature it is,

But you're right in terms of that undescended testicle. In a lot of the literature, and I guess awareness-building always says, look for a lump. And there isn't one. And I think Max's symptom of the lower back pain and, you know, the stomach ailments and so forth, contributed to what happened.

But it's also symptoms that men young boys should pay attention to. Because, as we talked about at the beginning, this is cancer that's most commonly found, you know, at a young age, and, you know, one that men just need to be aware of, and that sounds like as well, as we know, there is a way to pay attention and hopefully find out what you can do about it if you only have that one testicle.

And I know. It's just something that, I guess, just thinking about what happened to Max, questions that we could have asked earlier. But that perhaps, just to make sure you have all the information, I guess, is probably the piece of advice that I want to say as well.

Chuck Mallory     17:56
Right. And I think advice that I would have for parents that had a child that had an undescended testicle, whether it was brought down, whether an artificial and had to be put there as simply to, I believe, say to your son at, they may if they ask before 11 or 12, fine.

But bring, just bring it up and say,

"Hey, here's something well we know, because we've had you since you were a baby, and, do you understand this and what this is about..."  just to also give them that psychological side of it. "You know, you can talk about that to me..."

Because at some point, a boy is going to be in PE class and take a shower or be in sports, or something, or be at camp and undress in front of somebody else. And if they're comfortable just talking about the fact that they have one testicle, or you know, just talking about the whole area, I think it's going to make it much more open for people to say, you know, that, if anything is going wrong, like one of them doesn't feel right, or that sort of thing.

Just open that subject up so that they can talk about it. And if it's a young man, he may be married or not. And you're the spouse, it's okay to ask like, “Hey, I remember you telling me about that. Did you ever look into whether you, you know what the situation was with testicular cancer and possibly getting checked for that”?

A partner, anybody. Because some people, even as adults, may be in this situation, even their partner, spouse, etc., knows it. But they've never done anything about it or talk to a doctor about it. So, it's just the level of awareness that can start out with boys being able to talk about it, and then others being able to ask about it. You know when they're adults.

Joyce Lofstrom     20:02
And that's a good point in terms of comfort in talking about it to your family or friends or to the doctor. And that's a good segue to my next question, which is about the Max Mallory Foundation. And I just want to add that I know on the Foundation website, you've posted many articles about survivors or young men dealing with testicular cancer. So why don't you go ahead and tell us more about the Foundation and what's going on with it?

Chuck Mallory    20:32

Well, the Max Mallory Foundation was formed in 2016, after Max passed away. And we've had some good partners helping us. Ironistic designed a really nice website. Everything was done professionally. And we were fortunate to have a law firm donate their time and to set the Foundation up as a 501 c three, organization.

So, any donations which can be made online at the website are tax-deductible, and the whole point is two-fold. And my focus has been on talking about the type of awareness. There are other organizations that do testicular cancer awareness in general. And the Max Mallory Foundation does it too.

But this Foundation has a special focus on men born with one testicle, or anyone who had an undescended testicle and had to have it surgically changed or maybe hasn't done anything about it… Just to bring about the awareness that that is still a risk factor.

There won't be a lump in almost any cases when it's related to the undescended testicle. But it's still something that needs to be talked about with pediatricians, doctors; if you're an adult, spouses, partners, and some parents of boys in that situation need to be aware of and be able to talk about. That's a big area focus.

And then in general, and I know that this will be in another podcast, but there's also a focus on cancer of all types in young adults, which is not really a talked-about area. It's also something that's been sort of undeveloped and not had a broad base in the past.

And interestingly about the Foundation, it came about for a good reason. I like to say Max founded it himself. After he passed away, he'd been saving money for a few months while he was sick, because he wasn’t having to pay rent. His whole situation, his employer was very generous to continue to pay him even though he was too sick to work.

He'd been saving money assuming he'd get well. So, when I began doing, you know, dealing with his money, after the whole, the whole loss and the intense grief, I realized he's got $2,000. And I know he was saving it to spend not a fortune, but I thought what can be done with this, and that money became the basis for the start of the Max Mallory Foundation.

So, it was Max's own money. He actually started the Foundation, I think that's something really, that's very important because everyone connected with the relationship has been very good stewards of the funds.

We've had more donations. We've had organizations donate to help and will continue doing the good work, because through social media and the website, and other things that will come up in the future.

This is another type of awareness that can really help a lot of people. The people that it helps, you know, this is the kind of help where you can save somebody's life. It would be worth it if it was one person.

So that's how the Foundation is going to keep striving and moving forward and doing everything we can to get another level of awareness out about testicular cancer.

Joyce Lofstrom      24:15
You make a great point too, as we near the end of our podcast, in terms of collaboration and working with other organizations who are also focused on testicular cancer. And we will talk about that in future podcasts, but it does make a difference, just in terms of effect, I would say,

So, can you give us the link or the URL to the Foundation, so our listeners can go to it if they would like?

Chuck Mallory     24:42
Oh, certainly, it's simply Max Mallory Foundation.org. And Mallory's spelled just like you would see it in a female typically first name, m-a-l-l-o-r-y, so it's all one-word Max Mallory Foundation.org.

And that's where – on the website is background on Max, the intent of the organization, links to the Twitter page for the Max Mallory Foundation, and the Facebook page for the Max Mallory Foundation, as well as there is a LinkedIn page for the Max Mallory Foundation. So, it's all there at the website, and there is some advice there.

But we also point people to resources that are out there and help people organize the different associations and what's out there.  There isn't a core organization in the area of testicular cancer; there seem to be about three or four major ones that all collaborate. So, some of that is there as well. But that's where the website is.

Joyce Lofstrom    25:54

Okay, so I appreciate that you could share that with us. 

And we'll close out on this edition of Don't Give up on Testicular Cancer, which is a podcast for anyone who's interested in learning more from testicular cancer survivors, caregivers, and others who are touched by cancer. 

You can find this podcast on your favorite podcast location and on the Max Mallory Foundation website. 

So please join me again next week for the next episode of Don't Give Up on Testicular Cancer. Thank you. 

Adapted from transcription by otter.ai 
Episode 1 – Why We Never Gave Up on Testicular Cancer – Max’ Dad