Nine Years Out: A Snapshot of Long-Term Testicular Cancer Survival

"I never had a people until
I was a survivor.
Those who didn’t make the trip call us
the strongest people they know, but
really, we’ve just learned to float
outside our bodies, dreaming we are
eagles chasing the river better than
others.
When you learn to do that, the nurse’s
voice, the needle in your arm, the tubes
in your chest, all fade away, light
appears from another room, and then
it’s over, and everything after like
children playing in the street below,
who might really be angels.”

- from the “Dead Have It Easy” in Hanging the Angels (available for pre-order Jan to March 2025)

A few months ago, I started keeping a health narrative. Every time I visit the doctor or interact with a medical professional, I describe it in the document. This gives me a record of what has gone on with my health, which can prove especially helpful whenever I’m asked about my medical history. And at 40, I have quite the medical history.

When asked to describe my medical health, I often tell medical providers that I am the result of three “perfect” storms.

First, there’s running. Before I was diagnosed with metastatic testicular cancer at 30 and a bit after, I was a serious long-distance runner. Starting in my teens, I ran cross-country and indoor track. Once I reached my 20s and early 30s, I switched to running marathons including New York and Pittsburgh. Running that intensely will destroy your cartilage, among other things.

Second, there’s my identity as a metastatic late-stage testicular cancer survivor. Both Cisplatin and Etoposide are known to cause myelosuppression as well as other conditions resulting in chronic pain. I received what’s qualified as high-dose BEP (the “TC standard”) during my treatment. As a result, I’ve been left to weather this issue as well.

Third, I have some type of undiagnosed autoimmune / rheumatoid conditions. Since 2019, the pain in my knees has gotten terribly bad. I have various test results suggesting that I either have an undiagnosed autoimmune or rheumatoid condition, but I have yet to receive a diagnosis that really makes sense.

I was lucky enough to have several tremendous doctors when I went through treatment in Pittsburgh. However, on moving to where my wife lives in Virginia, I’ve had horrendously bad experiences with medical providers. With the help of a compassionate and clever PT center, I have been left to work through the various chronic pain issues I’ve been left to face. I don’t blame doctors in Virginia for not knowing how to help me navigate my situation, though. Beneath everything, I try to remember that doctors only about 1 in 250 males gets testicular cancer, which given my other issues, means I’m probably the only person of my kind that the doctors have ever seen.

Despite feeling at times like I’ve been discarded by medical practitioners, and despite being left to navigate that which at times feels bewildering, I remain optimistic. In 1973, the survival rate from metastatic testicular cancer was less than 5 percent. Today, testicular cancer has a very high survival rate and a much more positive outcome in many cases. Most of this is due, of course, to Dr. Lawrence Einhorn at Indiana University for creating a chemo regimen that has high success rates combating TC. In the 40s since 1973, the outcome for testicular cancer patients has thankfully changed. What this means, though, is that there are many more of us, long-term late-stage testicular cancer survivors who have been left to face side effects with little to no medical help. There’s not been much research into our side effects and there aren’t really any “cancer survivorship” doctors given that even palliative care is often focused and designed around patients with active cancer. I expect we’ll see the creation of these types of doctors sometime in the next few decades.

Beneath everything, I’m deeply thankful. I walk (sometimes stumble) through this world with my eyes open, recording as much as I can for the posterity of others. I’m part of a very strange group. If I’d been born at any other time in history, I’d be dead right now. It’s a strange and sobering fact to consider. This is the only version of the world through which myself at this age would be alive to see it.

Despite everything, I’m lucky.

Photo courtesy of Unsplash.