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!

• Name: Matthew O.
• Diagnosis(DX):
  • Testicular cancer
  • Non-seminoma
  • Stage 3C (highest possible)
• Age at DX: 24
• 1st Symptoms:
  • Back pain
  • Blood in vomit and bowel movements
• Treatment
  • BEP Chemotherapy
    • 5 rounds (typically 4)
  • Surgery
  • Rare complication: 4 additional surgeries

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.

Matthew O.

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

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. 

How did you learn something was wrong

I had just started dating Lauren, my girlfriend. It was around May or June. We started doing all these summer activities together. We’d go hiking, kayaking, pretty much everything, especially as a brand new couple.

All of a sudden, I started to notice these minor back pains. I was in the best shape of my life, lifting a lot, working out a lot, so I thought it had to be the workouts. As the weeks went by, as the months went by, it got worse and worse.

Of course, at 24 years old, you think you’re invincible. You’re stubborn, you don’t want to go to the doctor.

Lauren was saying I wasn’t the same person I was before. She wanted me to go to a doctor to get checked out. I didn’t want to so I scheduled an appointment with a chiropractor. They tried to adjust me but still the pain got worse. 

It got to the point where it was extremely hard for me to even get up and walk. This was early August now, and I was still crazy stubborn. Every time I went places, I’d just complain about my back over and over again.

What got you to finally go to the hospital

One night I was over at Lauren’s house and I ended up puking up blood that night. Right away, that was the signal to go to the hospital.

I got rushed to the emergency room. They did a blood test on me and found I had lost two-thirds of the blood circulating in my body, which is equivalent to a gunshot wound.

They gave me six bags of blood and then rushed me into an emergency surgery to figure out what was causing the bleeding.

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

Guidance: embrace and process your emotions (especially men)

All my emotions came out when I saw Lauren. Be willing to express what you’re going through. I said I was going to be strong for my parents, Lauren, my family, and I was. 

But at a point, once I got to the Cleveland Clinic is when I saw all my friends and family. Once I saw Lauren, I was so nervous because I didn’t know if she still wanted to be with me. We’d only been dating for about three months at that point. To put that burden on her, I understood if she didn’t want to be around. 

Not only did she say she’d be around, she would be there every step of the way. I remember hugging her and then letting all my emotions out. It was like all this baggage that’d been on my shoulders was released.

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

Before Treatment

Describe the ultrasound scan 

The ultrasound is no different than getting one during pregnancy. They put gel on you and go across your stomach. Mine lasted a good hour. They needed to check several different areas.

I know it had to do with figuring out where certain things were forming and how they were forming, so they performed the ultrasound on my stomach and my testicles to make sure they knew where the cancer was and to spot any irregularities happening in my body.

Describe the blood work done

That had a lot to do with making sure it was not a blood-related cancer. Also, my AFP (alpha-fetoprotein) markers were detected through blood work.

They found out my AFP was crazy high, which is related to testicular cancer, so more testing gave them the avenue of figuring out that testicular cancer was what we were dealing with.

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.

So I went through two rounds of sperm banking. It’s awkward but you get it done. I think it’s so important. It can get expensive, but you have to look at it this way.

If you’re looking at kids and you want to have a future with your own gene and genetics, do it. 

It’s a tough decision. It was weird. I had only been dating Lauren for three months. They wanted us to have this conversation with each other.

I was like okay, I guess we’re going to have this conversation then. She and I talked and figured we absolutely needed to do this. We hadn’t been talking about kids before that time. 

»MORE: Fertility preservation and cancer treatment

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

Chemotherapy & Side Effects

How did doctors describe the treatment plan

With the clinic, they’re so incredible they have a couple specific testicular cancer oncologists. They linked me up with the best one they could get, Timothy Gilligan. He’s a great guy and very personable. 

I was immediately put on what’s called BEP chemotherapy, which is bleomycin, etoposide, and cisplatin. They did not hesitate. When they found out I had testicular cancer, I was on the chemo that day. 

They said they needed to get me into the chemo room and kept me in the hospital room for six days to make sure there was no complication. 

They didn’t want to see anything go wrong with the chemo and wanted to make sure it was doing its job, as well.

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.

What were the side effects you experienced

Monday through Friday the first round, toward Friday I could feel it for sure. I started feeling tired and a little week. On Day 6, I was like okay, I’m not feeling great but I can walk a little bit.

Then Day 7, I was a total train wreck. When I say fatigue, I mean not getting out of bed.

Number two, they constantly put me on nausea medication so I was really lucky because I’ve heard crazy stories of nausea and having those symptoms.  I made sure I took my nausea medicine. 

Because of my anxiety, I also started to get some rashes on my stomach and my chest when I would get the chemo. This was closer to the third and fourth round.

I would remember freaking out and getting these rashes. The doctors would come in and say they looked like stress rashes, but assured me they’d pay attention to them. They’d give me ice to put on my neck and I’d calm down, then the rashes would go away.

I was also neutropenic. I couldn’t eat pure fruits or vegetables because they carried bacteria, so I could avoid getting sick. 

Chemo was not easy, don’t get me wrong, I lost my hair within Round 2, but I didn’t have anything that was absolutely detrimental during chemo. I was lucky in that aspect.

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. 

Describe getting chemo infusions through IV

They didn’t want to do the port in the beginning. They thought I could get through all my chemo without it. I had really good veins because of how much I lifted weights. 

The first four rounds of chemo I went through was infusion by IV. They would find good veins in my arm and make sure I have good blood return, then they could put saline back into the system. Once that was all good, they would give me the chemotherapy.

The cisplatin and etoposide infusions lasted about three to four hours altogether. I’d just sit there and get pretty tired. I was extremely nervous the first day I went in but I knew that this is what I had to get done, what I needed to do.

Bleomycin was really short, maybe 15 minutes. It was not long but bleomycin is a very powerful drug. The chemo destroys everything in your body, good and bad cells.

Getting a port for last chemo round

Bleomycin is on Monday, Day 8 of my chemo, when I feel absolutely trashed. Day 7 is the worst and Day 8 is second to that. 

That was the day this happened. I am in a wheelchair, I cannot walk, and am so exhausted. They go in to prick me, and they missed. They do it again and miss five times. They said they couldn’t do any more. 

I was on the verge of passing out. With chemo, my veins just got shot. There was no blood return, nothing. That’s what chemo will do to you, especially ones like bleomycin that are so powerful. They destroyed my veins.

The next day my oncologist told me I needed to get a port and then they’d get me onto chemotherapy. I went in for the port surgery, got it done, and it was the best thing I ever did.

For a lot of us, it’s challenging, but it was definitely the best thing I ever did. 

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

Shifting your perspective on not having hair

Eventually, I realized there was nothing to be ashamed of. I think so many of us, and this can go in any direction in life, not just cancer, we’re afraid of what other people think of us that we literally dictate our lives around other people’s opinions, actions, and thoughts.

I thought look, I’m going through cancer. I’m going to express this, I don’t care if people come up to me or look at me weird. I don’t care. I’m going to do it for me, that’s it. 

I stopped wearing hats and it was a big opening for me to relieve that pain that I’d been going through for a lot of years in my life before cancer, needing constantly to fit into certain groups or being around certain people.

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.