Matt’s Testicular Cancer Journey

When I learned I had testicular cancer in October 2020 at the age of 31, I was anxious.

I wouldn’t say I was scared to die – I had reason to believe the cancer wasn’t very far advanced, and I knew testicular cancer had an extremely positive outlook in general.

But I was definitely anxious.

I’m a planner by nature, so most of this anxiety stemmed from ambiguity. Would I have a short easy journey in front of me, or a long difficult one? What would the surgery entail? Would I need chemotherapy? Would my treatment plan impact my long-term health?

No matter how scary the answers to those questions were, I just wanted to know. We hate ambiguity, don’t we, folks?

I spent hours researching everything I could. The history of testicular cancer, treatment options, possible prognoses, long-term outlooks – and so on. I never contributed to any forums, but read about dozens of other guys’ experiences with cancer and treatment.

From all this research and discovery, I found two things that were very helpful for me: (1) calibrating my expectations for the road ahead, and (2) reading the encouragement of others who had been through testicular cancer. I found that each person’s experience was unique, and every single voice was helpful to me in some way or another.

My hope here is simply to add one more voice from experience – what happened, what I learned, and how it’s affected my outlook on what’s important in life – in hopes that it will help someone else simply calibrate their own expectations, or offer some level of personal encouragement in a difficult process.

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Discovery

My journey started with an annual physical. My family and I had just moved from the Bay Area to Austin in May 2020, and I was looking to establish primary care in our new home city. For reasons I can’t explain, I scheduled my physical in October 2020 – three months before my birthday, when I would have normally scheduled it.

During this serendipitously early appointment, my doctor did a testicular examination (which is something that not every doctor does, by the way) and discovered a lump I was unaware of. He immediately referred me to diagnostic imaging to get an ultrasound.

The results of the ultrasound were concerning enough that I was referred to a urologist, who after one look at the results of the scan, immediately confirmed that this problematic lump was “cancer until proven otherwise.” Unfortunately, the only way to “prove” cancer at this point is to surgically remove the testicle – there are no lower-commitment options available. Again based on the ultrasound, my urologist suspected that this was early-stage cancer. “This will not kill you,” he told me as definitively as a doctor responsibly can. However, things can move pretty fast at any stage, so we needed to do the surgery as soon as possible.

Kicking myself for not having done a self exam in months (or years, even), I scheduled the surgery. Of course I had a laundry list of questions for my urologist:

• What would recovery look like? (1-2 weeks.)
• Should I get a prosthetic replacement? (In his opinion, no.)
• Do most guys “miss” it? (Not really.)
• If there were a pithy euphemism for guys who undergo this procedure, what would it be? (Single Jingle Club.)

Testicular cancer isn’t incredibly common, but its audience skews decidedly younger (teens, twenties, thirties) than many other cancers. It used to be a brutal killer – especially if it had metastasized at all – until the 1970s, when chemotherapy breakthroughs began drastically improving the survival rate. Today, especially if caught early, testicular cancer is one of the most predictable, treatable, curable cancers. Early staged testicular cancer has a 5-year survival rate well into the 90s.

Surgery and Recovery

I had my surgery (left radical orchiectomy) in November. The surgery itself was more “routine” and less invasive than I expected – they made a single small incision in my lower abdomen and extracted everything through there. My urologist performed the surgery and told me afterwards that it was a seminoma (there are two types of testicular cancer – “seminoma” and “non-seminoma”). Of the two, I was encouraged to hear, “this is the one you want to get.”

Recovery wasn’t super fun, but it wasn’t completely miserable either. I stayed in bed for about three days post-surgery, then was gradually able to increase my walking load each day. We actually flew to Colorado for Thanksgiving about a week after the surgery, although the amount of walking on our travel days was too much. I wouldn’t recommend something this strenuous until 10-14 days post-surgery, just from my experience. Plus, I was under strict orders not to lift anything above ~10 pounds, which made traveling with a toddler and all her paraphernalia extremely stressful!

By the time we returned from Colorado two weeks post-surgery, I was feeling much better. I still had a good amount of swelling (the swelling actually took about a month to diminish), but my ability to perform standard tasks and go about my day as normal had completely returned.

Oncology

From here, I was referred to an oncologist to discuss an action plan moving forward.

My blood work showed that the tumor markers (Beta-hCG) in my blood had decreased post surgery, which meant one of two things: either (1) the cancer had not metastasized beyond the testicle (which of course had been removed surgically), meaning I was completely cancer-free; or (2) the cancer had metastasized to other parts of my body, but was not far enough advanced to detect via Beta-hCG levels in my blood.

Given this situation, I had two options:

1. Do a precautionary chemo treatment in case there was any hidden metastasis
2. Leave things alone but actively monitor the situation via ongoing CT scans and blood work

My oncologist strongly recommended the second option, given the toll chemotherapy can take on the body. So, we proceeded with an active monitoring plan, but I felt fairly positive that I was cancer-free.

In the meantime, I was receiving an immense amount of empathy and compassion from family, friends, and coworkers. While I’m so thankful for all the thoughts, prayers, and kind words I received, I was actually feeling some guilt about everything during this time. The surgery wasn’t a huge deal; I wasn’t especially “missing” my removed body part, and I felt normal. Sure, as my urologist said, this experience was a good “mortality check,” but I really was fine! As much as I appreciated the thoughts, prayers, and well-wishes of those around me, I really didn’t want them to feel bad for me. I suppose it was for this reason that I tried to downplay and minimize my situation as much as possible.

Metastasis

Well, it turns out this was a short-lived stage.

My first abdominal CT scan (a couple months after my surgery) revealed an enlarged lymph node. Alongside a blood draw that showed elevated Beta-hCG again, revealing the presence of a tumor, it was clear that the cancer had metastasized prior to the surgery, and was now growing elsewhere.

I had just begun paternity leave from work in preparation for the upcoming birth of my second child, and on the day my son was born, I got a call from my oncologist telling me all of this. Yes, the cancer had spread. Yes, I would need to begin a chemo treatment as soon as possible.

For obvious reasons, this was an extraordinarily emotional day.

Chemotherapy

I was prescribed 3 rounds of bleomycin/etoposide/cisplatin (“BEP”) chemotherapy. Each round would be 3 weeks, so the entire regimen would be 9 consecutive weeks in total. Before beginning, I was scheduled for an hour-long “chemo teach” session to learn about what to expect and how to prepare.

For each 3-week round, my days would look like the following (specific drugs per day in parentheses):

• Week 1: 6-hour days Monday (EP), Tuesday (BEP), Wednesday (EP), Thursday (EP), Friday (EP)
• Week 2: 1-hour day Tuesday only (B)
• Week 3: 1-hour day Tuesday only (B)

From my understanding, there are a few ways to structure a BEP regimen, but the above is the most common template in the US.

The three drugs work in combination with one another to destroy quickly dividing cells, including (but unfortunately not limited to) cancer cells. That’s why many chemo patients lose their hair.

The drugs are more powerful in combination than any one drug would be on its own. The reason they can be used together without additive harm to your body is that each drug has a different toxicity – meaning each drug has the potential to inflict negative side effects on a different part of the body. Bleomycin, for example, has the potential to affect the lungs. Etoposide has the potential to affect the nerves. Cisplatin, among other things, can affect your hearing.

Of course, none of these side effects are desired, so my team monitored me regularly throughout the process via bloodwork and regular discussion to ensure none of these toxicities were occurring. Before starting the chemo regimen, I had to go in for pulmonary and auditory function tests so if we suspected an impact to my lungs or hearing at any point in time during the chemo, we would have a baseline against which to measure.

In addition to these tests, prior to starting chemo I had to get a “port-a-cath” surgically implanted into my chest, allowing the drugs to be easily injected without having to insert a new IV every time. This surgery was quick and routine. It was also the 2^nd cancer-related surgery after which I couldn’t lift anything for a week and got to feel completely useless at home (you’ll remember we had a newborn at the time, as well as an almost-2-year-old with a recently broken ankle).

On my first day of chemo, I brought some reading material and packed a lunch and snacks. The day was long but I was in a comfy chair (in a big infusion room with about 20-30 other patients at any one time). We kicked things off with a blood draw through the port-a-cath, lab results, and a series of sequential infusions (also through the port-a-cath): saline solution, etoposide, steroids to prevent nausea, cisplatin. I had a “tree” that the infusion bags hung from so I could get up and go to the bathroom or get a drink whenever I needed to. I felt fine at the end of the day and honestly thought that chemo would be a breeze. Big comfy chair and unlimited reading time? Yes please!

Well, chemotherapy – especially the BEP regimen – has a reputation for a reason. By the end of my second day (Tuesday), I was starting to feel pretty crappy. By Wednesday, I felt awful. Thursday and Friday I was so exhausted I could hardly complete a sentence out loud, let alone read or watch anything. Then, by the time I was starting to feel better on Tuesday of Week 2, I would get my bleomycin infusion (which can give you flu-like symptoms) and feel crappy all over again. Overall, I felt more-or-less awful for about 50% of each cycle, and more-or-less OK for the other 50%. That said, each cycle was additive, so the first cycle was the most manageable and the third was the worst.

One of the most common questions I would get during chemo was what it felt like. When I said that I felt awful, what exactly did I mean? (And I’ll caveat this with the fact that this was my experience, and everyone’s experience is different. My nurse told me there was a patient undergoing the exact same regimen who had zero side effects and felt completely fine the whole time. On the other hand, there were patients who felt significantly worse than me.) For me, the answer to this question was primarily (1) fatigue, (2) nausea (or nausea-like feelings), and (3) steroid cravings.

The fatigue became all-encompassing each cycle. Typically by the end of day 2, I would come straight home and sleep, wake up briefly for dinner / to see my wife and kids, and go right back to sleep before doing it all over again the next day. As I mentioned earlier, this wasn’t just a flu-like fatigue where you lie in bed and read or watch a show. All I could do was close my eyes and let time pass, drifting in and out of sleep as I could manage.

On top of this was the “nausea.” I put this in quotes because it wasn’t a conventional “nauseous” feeling – it was unlike anything I had ever experienced. I think a lot of this was because of the steroid medication I was on, which was supposed to prevent the worst of the nausea and throwing up. (Fortunately, I only threw up once during the whole nine weeks, but it probably had more to do with the COVID vaccine I received that week than anything else.) That said, I experienced a unique internal discomfort that I could only describe as “being poisoned.” My body felt like it was weighed down with toxic chemicals – which, of course, is exactly what was happening.

I’m certainly thankful for the preventative effects of the steroids I was on, but they did come with their share of negative side effects. Although I never got angry or hulked out on anyone (maybe because I didn’t have the energy), I would experience insatiable cravings for about a week out of every cycle, focused around the peak of my steroid intake (usually around Wednesday of week 1 to Wednesday of week 2). A typical example of this experience (on a non-infusion day) would be waking up at 4 AM, unable to sleep because I was so hungry; being only able to think about Whataburger; ordering Whataburger on Doordash because I was in no shape to drive; waiting an hour for Whataburger to arrive; downing 2000 calories worth of Whataburger; crashing for a couple hours; waking up at 7:30 and eating 5 bowls of cereal; crashing again; having lunch; napping; waking up craving fish burritos and ONLY fish burritos; hijacking family dinner plans to get fish burritos; feeling awful because of the fish burritos; crashing for the night; repeating the next day. Whether because of this pattern or the chemo drugs themselves (or probably some combination of the two), I put on 15 pounds of extra weight during chemo. Dear reader, many months later, some of these pounds are still very much with me.

I also developed strong situational nausea and taste or smell aversions throughout the treatment cycles. Though I’m told this nausea was entirely psychological, it felt extremely real. For example – any food I was bringing into the infusion room for lunch in the early days became repulsive to me in future cycles. I actually learned that I couldn’t bring food into the infusion room after a few days because it would immediately become unappetizing (and I wouldn’t want to eat while I was there anyway). Other aversions like the smell of the infusion room (mint) stuck with me for weeks after treatment ended – I couldn’t brush my teeth with mint toothpaste without feeling instantly nauseous. Fortunately, these aversions have faded with time.

Where I Am Today

I’m currently sitting about 7 months after the end of treatment. I’ve had three follow-up scans that have all looked great. Since seminoma testicular cancer is so predictably responsive to chemotherapy, even my first scan indicating that my problematic lymph nodes had returned to normal size was enough for my oncologist to say we could most likely “declare victory” – and I could even get my port-a-cath removed. I’m extremely optimistic that I’m in the clear, but will need scans for the next 5 years before I can officially be declared cancer free. I did get my port-a-cath surgically removed, an even easier procedure than when it was put in; they didn’t even put me under this time (just used local anesthetic).

In addition to the scans, my tumor marker levels (Beta-hCG) have told a pretty clear story:

• Pre-orchiectomy: 7 mIU/mL (I’ve been told that levels above 2 are concerning / likely to indicate the presence of a tumor)
• 1 month post-orchiectomy: <2
• 3 months post-orchiectomy (pre-chemo): 6
• 4.5 months post-orchiectomy (after first round of chemo): <2
• Every subsequent blood draw since then: <2

It’s amazing to me that the chemo was effective enough to obliterate the marker levels even after one round.

Onward With Purpose

Look, if you’re a male and don’t have testicular cancer, the lessons learned are pretty simple: check yourself regularly, and don’t think you’re immune just because you’re young.

If you do have testicular cancer and are wondering what will happen, the odds are remarkably high that it won’t be the thing that kills you. If you need to go through BEP chemotherapy, it’s probably going to suck, but it will not last forever and the odds are remarkably high that it will be the thing that cures you.

I really hope this has been a helpful recounting of my experience – a single data point that helps arm you with information and gives you confidence for the road ahead.

There’s really nothing brave or remarkable about what I went through. I had a very curable form of cancer, so of course I did what I needed to do to cure it and extend my life expectancy. And yes, the two-month period that comprised my chemotherapy treatment was probably the most miserable two-month stretch of my entire life. But what can you do? You simply have to endure. Every second that passes is a productive second, because once it has passed it no longer needs to be endured ever again.

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The phrase my urologist used after my orchiectomy – “mortality check” – has really stuck with me. He’s completely right! Cancer has been an amazing, loud reminder that my time on earth is limited, my body is failing, and one day I will die. That day could be in 65 years, or it could be tomorrow.

Keeping this in mind, since my initial diagnosis, I’ve been forced to think a lot about my answer to these two questions:

1. Do I have a specific purpose in this life?
2. Am I living according to that purpose?

These questions are fundamental to the human experience, no? They drive everything we say and do!

Bear with me – I know this is taking on a tonal shift here, but none of this cancer stuff really matters if I haven’t learned something bigger from it. Otherwise, my cancer will just be a random thing that happened once and then was over and had no meaning. That would be terrible! Why would I even be writing about it?

Let me start by addressing the first question inductively.

The First Question

I am a follower of Jesus. I know that Jesus was a real person who lived, worked, and taught in present-day Israel/Palestine, and I believe the things he said about how people should live.

I also believe there is a God who created the universe, because it is 100% physically impossible for “something” (all life and matter in the universe) to emerge from “nothing” – absent an infinite, divine Creator.

Jesus talked a lot about God, unequivocally claiming to be His son and the only way to a relationship with Him. For this claim, Israel’s religious leaders had him executed.

Jesus taught that every single person who has ever lived is imperfect. He died to bear the penalty for every imperfection of every person in history, so that we could have relationship with a perfect God who is unable to be in the presence of any imperfection, no matter how small.

I believe the claims Jesus made leave me with three possible options about who he was:

1. Jesus knew he was not God, and was therefore a liar who intentionally deceived people
2. Jesus was not God but genuinely believed himself to be so, and was therefore delusional
3. Jesus is God

Based on the available evidence, I have chosen Option 3. To me, Options 1 and 2 are inconsistent with Jesus’ extraordinary wisdom, goodness, and impact on the planet.

If Option 3 is true, then the following things recorded as said/done by Jesus are also true: he lived the perfect life I am unable to live; he died the horrible death I deserved to die, and experienced the separation from God I deserved to experience; he defeated death itself by raising back to life, proving his authority to reconcile me into relationship with God through my acceptance of this act of sacrificial love; this life is an infinitely tiny sliver of our eternal existence. All of this comes directly from Jesus’ words!

If Jesus is God and these things are true, then there is no higher authority than Jesus and I must as a matter of course follow his teachings and purpose for my life.

All this is a long (but hopefully linear) way of saying that my life’s purpose is to follow Jesus’ teachings about loving God and loving others. For example, as God has forgiven my every imperfection, I am to forgive others. I am to invest my resources (time, skills, finances) in eternally meaningful ways. I am to value my relationship with God and others above the things I want for myself.

Before Jesus died, he left his followers with two things: (1) Love God and love people; and (2) share this love with everyone on earth so they would have the opportunity to know Him. That’s my life purpose!

The Second Question

Am I living it? The answer varies a lot more than I would like. While I believe in Jesus’ words and have committed to following his teachings with my life, I am still imperfect and get this wrong daily. I think I’m in a better place than I was last year, or two years ago, or ten years ago – and hopefully I will be following Jesus even closer in (God willing) a year, two years, ten years. But I’m human, and thanks to Jesus’ sacrifice, my standing with God is not dependent on my ability to be perfect.

Based on this life purpose – which, even if you disagree, I hope you can understand how I got there – I would be a terrific hypocrite if I never shared this information with others. If I were to die of cancer before I had the opportunity to share what I believe with you, I would regret it deeply. I have to share this part. It is impossible for me to share my cancer journey without sharing my interpretation of it in the light of what I believe. I hope you will consider it.

By God’s grace, I am trying as hard as I can to fulfill my life’s purpose every day: in how I work at my job; in how I love my wife and my kids; in how I treat the people around me; in how I serve the church’s purpose of spreading the news and love of Jesus to all nations. I hope you’ll view this as an essential part of my story and my cancer journey. To me, it’s the only part that will matter in the end.

What’s Next?

Thank you, sincerely, for making it this far. It means a lot to me!

Like I said up front, I wrote this post to add one more perspective about The Testicular Cancer Experience (which is a bad disease, but an even worse band name).

For whatever reason you’re reading this, I hope even one tiny part of it was helpful to you. Cancer is a terrible thing. Please email me if you have questions or want to talk more. Nothing is off limits.

And for what it’s worth, I found this link to be the singular most helpful informative resource I found during my cancer journey.

Whether I know you or not, whether you have cancer or not, whether your worst days are behind you or are yet to come – I love you, I care for you, I want to help you however I can. Please don’t hesitate to reach out.

Matt