5 Things I Wish I Knew About Testicular Cancer—Before I Got It

In June 2019, four days after my 25th birthday, I was under the knife having my left testicle removed, a procedure called orchiectomy.

For the preceding two-and-a-half years, I had experienced an increasingly painful ache with even minor contact "downstairs." I also noticed the left testicle slowly getting bigger. I quietly attended appointments with "Dr. Google" that always ended immediately after the search results suggested "testicular cancer."

I didn't want to know the worst-case scenario, so I tried my best to avoid thinking it into reality.

The time I allowed to pass gave my cancer the opportunity to metastasize to a lymph node in my retroperitoneum—the anatomical space behind the abdominal cavity—which caused the discomfort that ultimately led me to my primary care doctor. For that reason, from July 15 to Oct. 4, I was treated with high-dose chemotherapy: four cycles of etoposide and cisplatin, more commonly known as EPx4.

My post-chemo CT scan revealed my lymph node had shrunk, but not enough to be considered "no evidence of disease" (NED). As a result, I traveled to Indiana University, where doctors performed a post-chemo retroperitoneal lymph node dissection (PC-RPLND). Removing my retroperitoneal lymph nodes, in conjunction with the subsequent pathology results, earned me NED status.

I've been considered a survivor since November 2019 and have taken the ball into my own court to raise as much awareness as I can. I am now on the board of the Testicular Cancer Awareness Foundation and I host a podcast called "It Takes Balls," where I talk with survivors and medical providers.

Even given my experience with the disease and my subsequent advocacy, I wish I had known a handful of details about testicular cancer before it happened to me.

I spent a lot of time running from seeing the actual words "testicular cancer," but had I known the five-year relative survival rate was so high, I may not have waited two-and-a-half years. My peripheral findings through Dr. Google always stopped when I saw the C-word because I thought it was usually a death sentence.

In large part thanks to Lawrence Einhorn, M.D., and the folks at Indiana University, the survival rate has gone from about 10 percent to more than 95 percent. Einhorn and his colleagues' research with platinum-based chemo completely turned the tide for patients with a testicular cancer diagnosis. One major caveat to the 95 percent survival rate is the importance of early detection.

Before I started chemo, I met with a physician's assistant to go over what to expect from the treatment. Seemingly every side effect I'd ever heard of was possible. Some of them were stranger than others.

During my first week of chemo, I got a terrible case of hiccups. I tried my nausea medicine and a grip of home remedies until I found one that worked: drinking from the opposite side of the cup. I also dealt with ringing in my ears, hip bone pain from the Neulasta (a drug to boost white blood cell count after chemo) and tingling fingers.

My orchiectomy still causes slight numbness around my incision even now, almost three years postsurgery, and my retroperitoneal lymph node dissection caused severe gas pain in my shoulder.

I think part of what made losing a nut a little more bearable was the support of my family, friends and co-workers. I always tell people that my mother was my "momager" and did all of the worrying for me; I just went for the ride.

Everyone rallied around me to help take away my worry. Friends made "Steven strong" bracelets and sold them to raise money for me. During chemo weeks, my parents alternated tasks, with one staying with me at my condo while the other was home with the dog. Every day I came home from chemo, one of my aunts or grandparents had decorated a wall in my living room with a countdown of the remaining days of treatment. When I got back home to Virginia after my RPLND in Indiana, a custom-made concrete coffee table was waiting for me; I always wanted one, so my brother made it for me. Co-workers sent gift cards for food. And so much more.

It was this support from people around me that carried me through. I spent more time laughing at myself and nut jokes than I did crying.

Not all cancer is pink. I absolutely mean no disrespect to breast cancer or any other cancer, but the signs, symptoms and existence of testicular cancer don't get the same recognition. This could be for myriad reasons, including its rarity, however, I feel another major factor is the taboo-like nature of testicular cancer. It is a "private part" after all.

Before my diagnosis and treatment, I think I said "testicle" fewer than 10 times in my life. Now, I think I've said it more than anyone around me could ever be comfortable with. The use of self-effacing humor and innuendo, I'm finding, helps break down the wall when talking about testicles and cancer with friends and co-workers. If we laugh about it—even if the other person feels slightly uncomfortable—it may stick in the back of their mind and they won't feel as strange performing their self-exam at home later or telling their spouse about the signs and symptoms.

One thing I struggle with having beaten the disease is "survivor's guilt." I am young and otherwise healthy, so maybe that's why I handled the chemo and surgeries better than I was told I might. I have friends who have had entirely different experiences with more metastasis causing a much more difficult bout with the disease.

In an interview on my "It Takes Balls" podcast, Phil Pierorazio, M.D., an assistant professor of urology and oncology in the Brady Urological Institute at Johns Hopkins University in Baltimore, talked about testicular cancer being a disease of survivors. What he meant was more than 95 percent of guys survive, and they all go through a traumatic experience at what is most commonly a young age (15 to 44). In almost every case, part of their "manhood" is taken from them.

Guys may feel embarrassed or ashamed to talk about what they've been through, which may cause depression or suicidal ideations. The important thing to remember is it is OK to talk to your friends, family, a therapist or all of the above. As a survivor, it's vital to not compare your journey with someone else's. We've all been dealt a different hand from the same deck of testicular cancer cards.

Testicular cancer is considered one of the rarer cancers with an estimated 9,910 new cases arising in 2022, compared with nearly 288,000 cases of female breast cancer and 151,000 colorectal cancer cases. The National Cancer Institute qualifies cancers as common if there are more than 40,000 cases annually.

While testicular cancer is rare by definition, my personal experience in survivorship has made it seem all too common. Every survivor I've talked to tells a story of friends coming out of the woodwork with their own stories of friends who have been through the same journey. The numbers qualifying testicular cancer as a rare cancer don't lie, however, the anecdotes paint a different picture for a patient or survivor who may feel alone.