Matthew’s Stage 3C Non-Seminoma Testicular Cancer Story

Matthew shares his stage 3C non-seminoma testicular cancer story and undergoing treatment, starting with BEP chemotherapy and ending with a rare situation: multiple surgeries.

He shares about the complications to highlight how he grew resilience from his difficult cancer experience, as well as topics like navigating hair loss, fertility preservation, the support that meant the most, and finding a new purpose in life. Thanks for sharing your story, Matthew!

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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Cancer can go one of two ways. You can let it define you or you can grow through it and learn through it, become a better version of yourself.

There were a lot of ups and downs, resilience and perseverance. At the end of the day, I’m very grateful for the experiences that I learned. I decided to share my story, but more importantly, the lessons I learned along the way to your audience today.

Matthew Ode

Video: Matthew on Getting Diagnosed

Path to Diagnosis

Tell us about yourself

I was a personal trainer, very healthy at the time, working out six or seven days a week, eating almost to a T, counting my calories and my macronutrients. At the time, I was a personal trainer and wellness director.

My life was dedicated to my health.

I did have anxiety. I was 24 years old, I had just gotten done with college, and had no idea what I wanted to do with my life. I think that brought a lot of anxiety to my life.

When I say anxiety, I would have panic attacks and things like that. I was able to overcome that just before I was diagnosed with cancer. My life was predicated on health. 

Also, it was a few months before I was diagnosed when I met my girlfriend, Lauren, who’ll be a vital part of this story. 

They thought it was an ulcer when they went into the emergency surgery and performed some blood tests. I wasn’t just puking out blood but it was also coming out in bowel movements. 

When I woke up the next day after surgery, I thought I was okay. They had given me six bags of blood which really reenergized me. When I had gotten to the hospital, I could barely walk. I was so dizzy and tired, I could barely even see. 

Your hemoglobin should be around 15 for a male and I was at 4.5 to 5.0. They said anything under 5.0, you shouldn’t even be awake, and I was right there.

Testicular Cancer Diagnosis

When did you get the initial cancer diagnosis

The next morning when I woke up, I’m thinking it’s all over. My doctor walks in, sits down with me, and as soon as I saw him with that blank stare in his eyes, I knew something was completely wrong.

He sits down, grabs my hand, and says, “Matt, we found an 11-centimeter tumor in your small intestine. We don’t know which cancer it is yet but we do believe it is cancer. We have to rush you to the main campus of the Cleveland Clinic immediately.”

I live in Cleveland. Thank goodness I have one of the best hospitals in the world right at my doorstep. Within a day or two, they were doing anything they could to get me to that hospital. That’s where they did a ton of tests to figure out what type of cancer I had. 

They did an ultrasound, blood work, and I couldn’t tell you everything because I was out of it, in so much shock. I didn’t really know what was going on.

When did you find out what stage of cancer you had

After a day or so, they came to me and told me that I had the highest stage of testicular cancer, which is stage 3C.

A lot of people say they have stage 4 cancer, but I asked my oncologist multiple times and he said there’s actually no stage 4, it’s stage 3C. 

Usually they track your blood marker, so they have what’s called your AFP marker. It’s a blood tumor marker. You want it to be under 5, I believe, to be considered okay and healthy. Mine was over 65,000. It was so high, it was off the charts. 

How did you process the testicular cancer diagnosis

There is a lot of story of resilience in there. When I was first diagnosed, it was just my parents who were there at the appointment at the time. Lauren didn’t know, nobody knew, it was just me and my parents in that room.

I remember looking at my parents and they’re crying. I’m very faith-based, so I’ll share my story this way, to each their own on their faith. But I really think God put this strength in me, the second I heard that news. For some reason I told myself, I’m going to be strong for my parents, for Lauren when she gets the news, for my friends and family.

I started looking at life as everything is happening for me, not to me.

What I mean by that is if you start looking at life as everything is happening to me, you start making excuses. You start blaming other people. You start letting cancer define you.

When you start saying, “How is this happening for me?” Then you can learn and grow from it. It’s unfair and unexpected, but guess what, I am dictating my happiness throughout this journey or my mental and emotional strength. 

I said I would use this as a lesson and grow through this experience. Yes, I’d have ups and downs, but I had that mindset.

»MORE: Patients share how they processed a cancer diagnosis

I want to talk, especially to the men out there, it is okay to express what you’re going through, to share your vulnerability and your emotions. That is what allows us to relieve the anxiety, relieve the depression. Relieve the stress in our lives, by expressing our emotions to those we know, like, love, and trust in our lives. 

That’s what I needed to do. It was a big push and it really made a difference moving forward. 

How did you break the news to loved ones

My parents had gotten in contact with Lauren, so she knew about the cancer by the time she saw me. For me, the only person I called was my best friend, Anthony. That was really tough. Hearing him cry, I was still in shock so I wasn’t exactly crying. 

It was really phone-tagging people left and right. There were no rooms at the Cleveland Clinic at the time, so they brought me into an ICU room. You’re only allowed to have two or three visitors in the ICU, but at the time they knew what I was going through and they had curtains around, so we had 15 people come in.

It was all my friends and family, people just flooding in, back and forth, once I got to the clinic. It really helped having such incredible people in my life.

Any guidance on how to break the news to others

I need the support. When it comes down to going through challenging moments in my life, the one thing I realized is I cannot fight these battles alone. That’s me.

I understand some people don’t want to overwhelm other people in their lives, but in my opinion, by not telling them and having them figure it out later is going to make it even worse for them.

My thought is you don’t have to tell the world, just first tell the people you really love and care about. When you feel more comfortable opening up about it, go for it. 

Between my parents, Lauren, and my best friends and family, I needed that in my life. I think it’s so important because at the end of the day, these battles fought alone is not only lonely, but it’s almost impossible to get through.

»MORE: Breaking the news of a diagnosis to loved ones

Sperm banking before treatment

As soon as they found out I had testicular cancer, they said that with surgeries and treatment, there was more than a 50-percent chance that once I went through it all, I might not have kids. At least not in the natural way.

How did you find where to go for sperm banking

Cleveland Clinic did it for me, they have everything set. They do everything. So the medical team said they had me there, they’d get me in the right place. We haven’t talked to the fertility specialist yet, but we will soon, most likely within the next couple of years. 

I’m not sure of all hospitals, but I think most big hospitals will at least point you in the right direction or they have the facilities there.

Any guidance on paying for the procedure

I was very lucky because my parents basically said they’d take care of this for me. I don’t know the exact cost but I know it’s about a couple-hundred a month to store it.

Video: Matthew on Chemo & Surgeries

Describe the overall BEP chemo treatment plan

I ended up going through five rounds of BEP. Since my testicular cancer was so aggressive, they had to add an extra round. They usually do four rounds of BEP chemo.

There were five days, Monday through Friday, of etoposide and cisplatin. Then I had just one Monday of bleomycin because it’s a very strong drug. It really hits your lungs hard in your body. 

Then you get a week off, and then repeat it all over again. So it was a two-week process, five rounds, lasting two-and-a-half to three months.

When were the chemo side effects the worst

They told me Day 7 would be my worst day of side effects because what happens is all of the drugs are trying to get out of the system within a day or two, and your body is fighting everything it can.

BEP is one of the most intense chemotherapies. The reason they did it with me is because I was so young and could handle it. Day 7 comes along and I remember waking up and like, whoa, I cannot even move.

I felt like total death. At that point, they had released me on Saturday after the Monday through Friday of chemo. Sunday is when I felt so terrible and it was rough. 

Guidance on getting through the near week-long hospital stays

You have to look at the bigger picture. I know it’s tough in the moment. A lot of times we get so caught up in the moment thinking about three-day hospital stays, ten-day hospital stays, when will I ever get out of this?

Think of it this way: it’s setting you up for something bigger in your life.

Yes, it’s tough in the moment, but I was relying on my faith and support system, focusing every single day on one little thing that could help move me forward to getting out of the hospital or getting me to where I needed to be. 

It might be getting up and walking on a day I feel a little better, or eating something and getting some calories in my body, whatever it was.

That really helped me to relieve a lot of emotional stress of being in the hospital all the time. I was keeping myself busy and trying not to constantly focus on the negative parts of this journey.

»MORE: Mental and emotional support when leaving the hospital 

What was the hardest part of the chemo

It was a tough first week mentally because I was still wrapping my head around a lot of the things going on. As I was doing it, I had Lauren and my parents with me. That really helped me a lot. It was a lot to go through.

I have red hair so losing that hair was really challenging. I ended up losing the hair around the second round.

In the middle of my third round was my biggest mental hurdle for sure.

I ended up losing my three-year-old puppy because he had cancer. I took him to medical appointments before I was even diagnosed. He and I were fighting this battle together. 

That was my first bout of saying everything was happening to me, not for me. I started to blame God and not want to go to chemo. I was so upset for four to five days because I thought the universe hated me. I thought everything was going wrong. 

That was a big turning point in my life because I remember the day I was lying in bed, looking up, and thinking if this is what Duke, my puppy, my parents or Lauren would want me to do? Give up on myself? 

The answer was absolutely not.

That day I got up and just did something small. One little thing every single day just to get me to eventually get out of chemotherapy. It was a big mental shift for me.

Describe managing the hair loss

Eventually the hair started coming out in clumps. I started looking like Gollum from Lord of the Rings! It was really bad but I kept some humor in it.

I had this crazy dirty mustache with a little bit of hair and said I was going to keep it while I shave my head, for however long I possibly can. I didn’t know how long it’d be but I’d do it for as long as I could.

All my friends noticed and said they wouldn’t let me do that alone. They all grew mustaches, all my guy friends and dads, throughout my chemotherapy. It was really cool and so powerful.

It was amazing to see that. Yes, it was really challenging because I was afraid of showing my bald head in public, I was wearing hats for two weeks at least.

»MORE: Patients describe dealing with hair loss during cancer treatment

The hair loss was really challenging. I know for women it may be even more challenging. I’m very empathetic to that. Cheers to you. I understand why there are so many people going different directions with the hair loss. 

Any last guidance on recovering from chemo at home

If you have somebody who’s there for you, make sure they help you stay on top of things. My dad was like a second nurse to me. He knew everything. As crazy as this is, throughout my journey, nurses would come in and ask if my dad was also a doctor.

He’s one of those people who needs to know all the information. When he does, he’s very smart and intelligent, and always stays on top of things. He would make sure I took all my nausea medication.

You don’t have to have someone like that, but have someone in your life who will help you because there will be days where you easily forget things.

It’s such a challenge because you just want to be able to get up and do things. On the days I started feeling good it sucked because I’d have to go right back to chemotherapy. The next Saturday and Sunday I’d feel much better.

For me, some days I’d even go to work. For some, you can go to work. Go out and do things, live your life. If you’re feeling good that day, don’t sit around. Go out and go for a walk, go to work, just be present. 

I know COVID-19 has been challenging for a lot of people right now. You can’t go places because of your compromised immune system and you have to be careful, but just get outside the house and walk outside. Fresh air is the best medicine there is.

For me, it was going to work or being around other people and making sure that I wasn’t just sitting around and moping all day. 

You realize all the people who truly are important in your life, you realize the events that are really important in your life, and you realize that it’s not as many things as you think.

When you narrow it down, it’s very simple but we overcomplicate things in life.

I’m more or less sharing this for the message of resilience, and giving you hope and positivity for whatever you’re going through. This is not to say this will happen to you.

Falling into two comas

A week goes by after I left the hospital, and throughout that week, when I was home, I never felt right. I felt something was totally off. I knew it had been a big surgery, but there was something not right. 

As the draining was coming out of my stomach, all of a sudden, it just stopped. Immediately, I was in so much pain that they had to rush me back to Cleveland Clinic.

They ended up having to drain seven liters of fluid out of my stomach, caused me to go into a complete kidney and liver failure, I had a cone drilled inside my head to relieve potential brain swelling, i had a catheter in my chest and in my neck, because they thought I’d be on dialysis for the rest of my life.

I ended up falling into a two-week, non-induced coma. I won’t go into crazy detail, but long story short, I ended up being in the ICU for more than 40 days. I ended up being in the hospital for 53 days total. A week out of my coma, they went to go take out the catheter in my neck after taking out my breathing tube. 

I end up having an arrhythmic heartbeat as they’re taking out the catheter, and am going into cardiac arrest.  They had to do eight minutes of CPR on me and I had to go into another one-week coma. 

How did you learn you had no evidence of disease (NED)

My urologist told me about the no evidence of disease, as he was the one who performed all five surgeries on me.

Significance of day you were discharged from hospital

When I was released from the hospital after 53 days, it was March 17, 2017. The coolest part about it is I had met Lauren on March 17, 2016, exactly one year from when I was released from the hospital.

I know it’s not a coincidence. I think that was God putting an angel in my life. Sometimes we need to recognize who that person is in our life. When we do, sometimes we take them for granted.

We can’t take that person for granted too much. We have to really appreciate them being in our lives.

What was the follow-up protocol 

It was every three months to start for the first two to three years. Then it got to six months. Now, it’s more like eight months.

The cool part about it is since I am four years officially cancer-free, with testicular cancer, unless they see something weird, I don’t have to do another CT scan again. It’s only blood work moving forward, which is awesome so I don’t have to go through the radiation part of it.

Video: Matthew’s Reflections

I probably cried a good hour-and-a-half that night. I let all my emotions out.

The next day, I got into my little weight room at my house and picked up a five-pound dumbbell, and started doing bicep curls. The next day, I did the same thing, walked a little farther, and every day it was just compounding and compounding.

Eventually, I started gaining some weight. Then my mental attitude started to get stronger. I started to look at life as a lesson and as a growth opportunity. 

After one year, my wound finally healed. My skin grew over it. After two years, my strength started to come back. I told myself that I would not let myself down. I would work my butt off every single day. I focused on consistency and using my dedication to never giving up on myself. 

After about two-and-a-half to three years, I was able to take care of my mental, emotional, and physical health.  I wondered what was next for me.

I had to stop listening to people who really loved and cared for me and thought  I was crazy for not going back to my nine-to-five job, and for wanting to do something bigger with my life. 

What I got around was entrepreneurs because they all had this growth mindset of having a vision and wanting to get there. If you have a big dream in your life, the only person who’s going to believe in you at first, is you. 

You need to be the one to have the courage to go forward. That’s where faith comes in and where you believe in yourself, having the courage to push yourself forward.

You turned this new purpose it into your work

As I started sharing my cancer story like I am now, people were like okay, you need to get that story out to the world and become a motivational speaker. So I started my own LLC and I became a keynote, motivational speaker. 

True happiness comes from giving back to other people in a way that you’ve learned from an experience you went through, a challenging experience.

One of my favorite acronyms is “H.O.P.E.” It stands for “help one person everyday.” It doesn’t have to be anything massive, it’s just doing something to make an impact in this world. You’ll bring a lot more joy and happiness to your life. 

It just goes to show the power of having people in your life and having that support.

That picture was the third time we did the 5K. Every time, we’ve had hundreds of people show up and wear the shirts. It was special because I had to learn how to walk again and to live my life again.

That one was my very first time running the 5K after cancer. To do it holding Lauren’s hand was just too powerful and very emotional. It was an amazing day.

I was about to host my own Mustaches for Matt race and bring money to charities, but unfortunately COVID-19 hit and we couldn’t do it. Hopefully one of these next years, we’ll be able to get it back up and running. 

What’s your last message to other cancer patients and caregivers

You have so many opportunities in your life to do great things for yourself. Don’t be afraid to go after them.

It’s scary at first but just take that leap of faith and you’ll be amazed at what it can do for you.

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Non-Seminoma Testicular Cancer Stories