Don’t Give Up on Testicular Cancer

A Conversation with a Testicular Cancer Survivor and Entrepreneur - Episode #2

October 08, 2020 The Max Mallory Foundation - Joyce Lofstrom host Season 1 Episode 2
Don’t Give Up on Testicular Cancer
A Conversation with a Testicular Cancer Survivor and Entrepreneur - Episode #2
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Don’t Give Up on Testicular Cancer
A Conversation with a Testicular Cancer Survivor and Entrepreneur - Episode #2
Oct 08, 2020 Season 1 Episode 2
The Max Mallory Foundation - Joyce Lofstrom host

Jonny Imerman, a testicular cancer survivor, talks about his cancer journey and Imerman Angels, which he established after his cancer journey to provide one-on-one support for cancer patients, survivors, and caregivers.  

Show Notes Transcript

Jonny Imerman, a testicular cancer survivor, talks about his cancer journey and Imerman Angels, which he established after his cancer journey to provide one-on-one support for cancer patients, survivors, and caregivers.  

Joyce Lofstrom 0:11  

Welcome to Don't Give Up on Testicular Cancer, a weekly podcast where I talk with testicular cancer survivors, caregivers, or others touched by cancer. 

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

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

We begin each episode with a fact to know about testicular cancer. And today's fact comes from the American Cancer Society's website with the title of Key Statistics on Testicular Cancer. And that fact is that testicular cancer is not common. About one out of every 250 males will develop testicular cancer at some point during their lifetime. 

Let's move on to our guest today, who is Johnny Imerman, and I'm sure many of our listeners know of Jonny and the work he's done. He's the founder of Imerman Angels. And while he was fighting cancer at 26 years old, Johnny had loving support from family and friends, but he never met anyone with his cancer.  He wanted to talk to someone just like him, someone who truly had faced the same type of cancer. That philosophy was the beginning of Imerman Angels, which he founded in 2006. Imerman Angels and Jonny himself have been honored with numerous awards, too many here for me to go into the list, but many, and in 2017, Johnny and his brother, Jeff Imerman, co-founded CLOZTALK® to raise awareness and funds for nonprofits. So, Johnny, I'm so glad you could join us today.


Jonny Imerman 2:15  

Sure, it's so nice to talk with you. Thank you so much for having me. And thanks for the kind words. We've just been blessed to be on some great teams and a lot of positive people who want to make a difference and help others with cancer. And yeah, it's just a great group. That's why the idea works.

 

Joyce Lofstrom 2:32  

Well, why don't we start in just tell us a little about your, you know, your own journey with testicular cancer? And what happened with treatment? Anything that you want to share with us,

 

Jonny Imerman 2:43  

Yes, thank you, Joyce. 

 

You know, I was 26 years old, a couple of years out of college at the University of Michigan, and diagnosed with testicular cancer. I hadn't been to a doctor in five months, I'm sorry, five years. Five months would have been fine. Yeah, but five years. 

I was just really one of those sort of ignorant guys that didn't know about it. Again, it was 2001; there was much less talk about testicular cancer, a lot of people didn't know what it was including myself. 

 

And I just didn't go to the doctor because I felt fine. I went to the gym and so forth. I didn't think I had to and that's a good lesson for everybody to make sure we go in and get tested and find these things early. 

 

But when I did finally have pain in my left testicle, excruciating pain that flipped on like a light switch, I went to the doctor, and it turned out it was testicular cancer. 

 

It spread from the left testicle up into the pelvis, lower abdomen, behind my kidneys almost to my lungs. So, immediately I went into surgery and removed the left testicle. I had to bank sperm. I had a port inserted into my left arm. 

 

And then chemo of Bleomycin, Etoposide, and Cisplatin, the BEP regimen of chemo. And after all the chemo, I had to do one more surgery called RPLND, a retroperitoneal lymph node dissection. I still had, which turned out to be, four tumors behind my kidneys. And since then, in 2003, I was 28, I've been cancer-free. 

 

But why we created Imerman Angels was that so many of us felt like we didn't know survivors like us during treatment. And I'm so glad that Max when he was going through treatment, that he just like myself, what a benefit to reach someone like him. And he did. Fortunately, he reached out to Imerman Angels to find another person who's been through it, to learn what's coming ahead, sort of a big brother, if you will. 

 

And that's why we created Imerman Angels, you know. We created it because we know so many people fight cancer alone. They're scared, they're nervous, they don't know what's coming. It's the first time they've ever done it. It's very isolating, none of your friends have ever done it. 

 

We created this organization that has over 11,000 volunteer cancer centers, survivors, and family members. It could be a sister or a brother, a parent, or a child of someone related to someone else going through cancer. And they all serve as a mentor. 

 

They're big brothers big sisters, and are screened, trained, ready to go for somebody else to find them in Imerman Angels, and is fighting the exact same cancer or situation. We buddy you up one-to-one with someone like you, but just maybe four or five years ahead of you, who is doing well, one who understands the road and wants to help you in the fight.

 

Joyce Lofstrom 5:35  

You know, I know Max really enjoyed and benefited from the young man that he connected with. And they talked a lot and his Imerman Angel shared a lot with him and helped him through different phases of what he was going through. It's a definite testament to the value of it. And you know what that one-on-one can do when you find someone that has, you know, been through a similar path that you're navigating. 

And I guess one question I have based on just what you were talking about with Imerman Angels is, I guess people come to you, did you have trouble finding people that were ready to partner up and help other people with cancer? Or how did you find them, I guess,

 

Jonny Imerman 6:15  

I'm so glad number one, that it was helpful to Max and made a difference, you know, in his life and gave him a friendship. 

 

And it's all about people, right? It's all about relationships. It's all about human connection. 

 

When you have a connection based on the shared experience, so Max at 22, almost 23, meeting another guy maybe who I don't know if he was 25, or 26, but similar in age, similar and experience. It's just an immediate connection because there's so few people who understand that journey. 

 

That really is the core of the mission of Imerman Angels: to find those right people. That's where the magic happens to put them in the same room. And yes, in the beginning, a great question. 

 

We had a big marketing problem. Nobody knew who we were. We were brand new; we had a dozen or two survivors ready to go. But how do we recruit more survivors?

 

We came up with the idea to make t-shirts that were actually logo nonprofit t-shirts for Imerman Angels that were cooler. We felt that a lot of nonprofits, it's not their fault, but they struggle to make high- quality t-shirts, and ones that people want to wear and that look neat. 

 

They're going to be an ambassador for you. So, we said we're going to do that. We're going to make ambassadors. We're going to make our logo cooler, and we're going to get our friends to wear them talk about it to spread the word. 

 

That's how we're going to get the word out to reach more survivors to join us. 

 

But yes, we definitely need the survivors first, because we couldn't help somebody like Max unless we had a big roster of awesome survivors who we knew ready to go. So that was really the first step and actually led us into our latest startup, which is called CLOZTALK.

 

We realized that once we made the t-shirts, which we make black and white, grand whites, simple, clean, no logo, no mission statement, no one-on-one cancer support. Can't feel like an advertisement. No company sponsors, just the logo. 

 

We use the Next Level brand out of LA for a really high-quality t-shirt. And again, black and white, simple, less is more, our friends…sorry to say okay, that's a quality shirt now, like, I'll wear that at the gym. We are aware that we work while I'm working; I'll wear this riding my bike or walking my dog on Sunday. And our friends started building awareness, and the word got out, and survivors started to hear about it to join us to give back. 

 

We started to reach more people that were sick. And we just simply made the one-on-one connections to help more people. That really is what led us into CLOZTALK, which now helps over 230 nonprofits, all 501(c)(3)s, all great missions. We vet them all; we know them all. And we design apparel for all these nonprofits just like Feeding America, or Muscular Dystrophy Association, or a group like Bright Pink in the cancer space. 

 

For any nonprofit, we design their apparel, we build them a free Shopify store, we never charge the nonprofits one dollar. We don't ask them to do anything. They don't have to move a finger, they don’t have to promote anything. We design it all for them. 

 

And then we think of creative ways to drive people to our online directory at CLOZTALK, where they can learn about these causes. If you get inspired, you want to buy a single app, or a single t-shirt, or a tank top or yoga pants for any of your favorite causes. You can buy one; we make it on demand and then drop ship it to you. So, this we believe is the marketing piece of Imerman Angels. How we got the word out was so scalable. We could use that same marketing through cooler apparel that is quality and wearable to help every nonprofit brand itself in the same way without ever taking $1 or a minute from any of these causes.

 

Joyce Lofstrom 9:55  

Well, I think it's interesting what you just described because of a couple of points. Imerman Angels is for all types of cancer. It's not just testicular cancer. I think that's important to know. And also, that you have caregivers or you have the people with cancer, but then you might have a parent or a friend or someone who's caring for that person that also needs someone to guide them as in our case. I know, Max's dad worked with Imerman Angels when Max died and to help, you know, go through that process of grief and losing a son, and so forth. I think that's important. 

 

Jonny Imerman 10:35  

You're exactly right. I mean, you are spot on. We learn this by the journey. First, we help people like Max because we knew, hey, we've been there. Max needs help. Let's hook him up with someone who has been through the same thing. 

 

But then a father just like Chuck, or a mother, like yourself, would call us and say, “Thanks for helping my kid. But I am struggling, I'm in a depression. I am scared that maybe this is my only child.” Whatever it is, the parents, of course, are in a horrible position. And they are isolated. 

 

So, then we said, “Okay, well, how do we help these people”? Let's hook them up with maybe another dad or the mom or with another mom, or a brother or sister up who's struggling with another brother or sister. And there's always a caregiver out there, who's been through it from the same standpoint, and wants to help. 

 

And so yes, we recruit family members as well, over 11,000 mentors, about one third, about one third are caregivers and two-thirds are actually survivors. And it's just a great, it's great, you know, family, that takes a great family that really is open to say, “Hey, you know, we've been through this. We know what our loved one went through. We know it from the standpoint of the caregiver. And we want to help another family and person get through it. Because we know it is brand new to them. And it's hard. And we know we can help, because we've been through it before, and we know a lot more than they do.”

 

Joyce Lofstrom 12:00  

Right. And that's it right there. And I think your last statement, we know a lot more than they do. Once you've been through it, then you can help guide others. And I think as well, your new business, relatively new business, CLOZTALK makes a lot of sense to when you talk about nonprofits in branding or just building awareness. And I think your own story about the t-shirt that you and others wore to get the name out about what you were doing is a really good example of that. Do you have any others? I think on your website, it says 250? Is that the right number of organizations you're working with right now?

 

Jonny Imerman 12:38  

Yeah, organizations, you got it. I think we're about 235. 

 

At the moment, nonprofits all over the US we cover, I'd say about half the states. So far, we want to get probably somewhere between 500 to 1,000 nonprofits that cover every state. 

 

It's a directory where people can learn about great missions. You don't have to buy a thing; you can just use it to get educated. I mean, we're all about marketing for causes and getting the word out. 

 

Just like with Imerman Angels, we felt that if people knew us when someone was sick in their family, they were able to take advantage of the free service. But if they didn't know us, or we couldn't get the word out, then it doesn't matter how great the service is, no one's using it. You know, it's not worth anything. 

 

People can go to the site just to read about it. Maybe they want their kids to pick a cause and volunteer. They can go to the site, the directory at CLOZTALK, calm, get inspired, find a cause that speaks to you read all about it. We have videos on there if you want to really get a feel for it. 

 

But also, we believe some people will take the next step and want to be a brand ambassador, which really means, you know, for $20 or so you can buy a t-shirt or a hat or a track jacket or a hoodie, any of our items. And we'll make it for you. And you can rock the logo, spread the word, have people ask about it, make new friends, but also, tell people what the mission is, why it's important. And maybe that person will get involved in the cause.

 

 

 

Joyce Lofstrom 14:07  

Well, I think as well, the whole word of mouth form of marketing, which is, it’s word of t-shirt, I guess, but it's important. But it's you know, that's why a lot of businesses and organizations do build brand awareness to let people know about them. 

 

And I mean, I wear lots of t-shirts, you know, a lot of them from maybe some meeting I went to or like a University of Missouri. That's where I went to school. So, you know, I have many t-shirts. I think it's such a good way to just tell a little bit about who you are, but also, what's important to you. 

 

And I think that's a really good angle on what you're doing with CLOZTALK, because so many of us, especially now or at home more, can relax, well, maybe we can relax, but we can be more casual, I guess is what I'm trying to say. And I think that's important. 

 

Take a look at it. I had never thought of a business approaching it quite that way, Johnny. But that makes a lot of sense that you make the t-shirts. And there it is. 

 

Jonny Imerman 15:10  

Yes, we want to really take the take it off the plate of the nonprofit.

 

If you think about a nonprofit, we learned with Imerman Angels, you're so busy, there's so much coming at you. They have a tiny little team of passionate people who are probably willing to work seven days a week, because they love and they care. 

 

They love the people just like you, the Mallory family that are great

people and you want to help. And the more you work, the more impact you can make. But at the same time, they have so little bandwidth. And if no extra time. 

 

If we feel we can take marketing, branding, and sort of bidding out of which brands they should be using for their t-shirts, looking at designers to design them, buying in bulk for the whole process, if we could take it off their plate for free, and solve it for the nonprofit's and make it cool, make their nonprofit’s logo cool and wearable, and inspire new people to wear it. We've essentially solved their marketing problem. And we've done it without taking anything. And then eventually, we're not profitable yet. But we have profits that we donate back to the causes. So, 20 percent of our net profits, we donate back to our nonprofits once we break even

 

Joyce Lofstrom 16:21  

Oh, that's wonderful to know. That's a good point. You're such a giving person. I just commend you for all that you've done and been through.

 

Jonny Imerman 16:30  

Well, thank you, I'm on a good team, Joyce. You know and I know Max obviously had a great team in you and in Chuck. And that's what it takes. It takes great families; it takes great people, and I think all of us think the same way. It’s why you do a podcast like this to educate others and teach people and they get checked more often and, and we save more lives. But we all are sort of in the same team together. And everybody cares. And everybody wants to make a difference. A lot of passionate people who are compassionate to help others. You know, that's how we make the cancer world a better place.

 

Joyce Lofstrom 17:04  

Yes, you're right, definitely. And that's a good segue to - can you share the two links to your websites for Imerman Angels, and then for CLOZTALK so people know where to find you?

 

Jonny Imerman 17:16  

Absolutely. For Imerman Angels, it is i-m-e-r-m-a-n angels dot o-r-g.

 

And if you forget that, don't worry, I realized Imerman’s a hard name. If you put.com, where you put in Imerman with an S, we have all those URLs, you will you'll find us. 

 

If you can't even remember, that don't worry, that's probably normal, it's a lot of letters. If you just type in one-on-one cancer support in Google, Google gives us a grant of $10,000 and free keywords every month based on our work that we do. And being a 501(c)(3). 

 

We're number one on Google for one-on-one cancer support. So that's all you need to remember if a friend goes through it, and you want to send them to our site, or our people and our team to help them. Please keep us in mind. 

 

We're here to help. Everything's free. We're blessed to be the largest group of mentoring survivors and caregivers out there. So, we feel we’ve got the world's best shot of finding the best match, mentor for anyone going through cancer. 

 

And the site for CLOZTALK is c-l-o-z talk dot com. 

 

And yes, you can find all the nonprofits on there for the 235ish causes on the site. And if anyone knows nonprofits out there that want free help and want marketing on our site, please send them to our site or have them reach out to us. We'll be happy to talk to any great group that's doing great work out there. And hopefully, we can help them and support them.

 

Joyce Lofstrom 18:47  

I'm sure you can. And I appreciate that you shared those two links with our listeners. And you've touched on this. And this is my last question. So, what advice do you have for anyone dealing with testicular cancer, be it, you know, a young man who might have it or thinks you might have it or a caregiver or anyone, just from your experience? And you know, what you've seen in working with so many people?

 

Jonny Imerman 19:12  

Yes, Joyce, a great question. Anyone that's not sure, thinks they might have it or something is unusual. Tell someone; the worst thing you can do is not do anything. And if you don't tell anyone, because if it is cancer, it may not be but if it is, it's only going to get bigger, and it's only going to get stronger, and your chances of survival are only going to go down. So, tell someone, talk about it. 

 

That’s the best thing to do really if you're not sure, and you're young. 15 to 35 are almost all the cases of this particular cancer, and it's the number one most common young men's cancer in America. I think we're around 10,000ish 10 to 12,000. I think young men get testicular cancer every year and to go in to go to a doctor, urologist, a specialist to take a look at it. They can do a blood test easily if they want to; they could do an ultrasound as well. But time matters, knowledge is power. And time is important. If you get that knowledge earlier, you're much more likely to live.

 

Joyce Lofstrom 20:17  

Perfect, great advice. Thank you. Thank you, Johnny, for being with us for our podcast on Don't Give Up on Testicular Cancer. It's a program for anyone interested in learning from testicular cancer survivors, caregivers, and others touched by cancer. You'll find our podcast on your favorite podcast locations and the Max Mallory Foundation website

 

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

 

Transcribed by https://otter.ai