I was not alone, but there was a sense of secrecy that others had kept about their condition
Testicular cancer awareness
One of the leading cancers
By the end of 2023, the American Cancer Society estimates that over 9,000 American men will be diagnosed with testicular cancer, with nearly 500 of those dying from the disease.
It’s easy to think of these numbers as just statistics that will never have a personal impact on you or a loved one. To be honest, that’s what I thought, and I’m a doctor. But then I became part of the statistic, and my view changed considerably.
In June 2023, I was diagnosed with testicular cancer. While we are taught the "ins and outs" of the science and art of medicine in medical school and throughout residency training, we never are able to truly appreciate what it’s like actually being the patient with cancer.
I felt like I was on an island by myself without answers to the questions that mattered most to me. (iStock)
Shocked, scared, confused, angry. I recall a rollercoaster of emotions when faced with the uncertainty and unknown related to my new diagnosis.
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Why me? What happens next? What is my prognosis? Will I ever be able to have sex again? Can my wife and I still have kids? I had transitioned from a healthy 32-year-old orthopaedic surgeon-in-training to a cancer patient in a split second, and I felt like I was on an island by myself without answers to the questions that mattered most to me.
As I started to meet the relevant medical experts, get my questions answered, and plan out my treatment steps, I realized something else – I knew a lot of people who had been diagnosed with cancer but not a single one with testicular cancer. As word of my diagnosis spread, however, many men in my personal and professional circles reached out to share their testicular cancer stories.
I was not alone, but there was a sense of secrecy that others had kept about their condition.
For those who are diagnosed with testicular cancer, there may be a feeling of shame and sense of embarrassment. I suspect this is likely related to where the cancer has struck – a private, sensual region of the body that many men correlate to their manhood. It makes sense. I get it.
Yet, without talking about testicular cancer, we allow fear and loneliness to creep into the minds of those newly diagnosed and myths to prevail over facts. This is why I decided to speak up.
Overall, testicular cancer is rare (1 in 250 men), but when it does occur, it is not a disease of elderly men. In fact, it is most common in men 20 to 34 years of age. While symptoms can be heaviness in the scrotum, swelling, or pain, in many cases, there are no symptoms or just a pea-sized, painless, firm lump on a testicle only appreciated when touching it. This makes self-exam critically important, and while there remains some debate, many physicians do suggest monthly testicular self-exams for men. All men should speak to their doctor about performing testicular self-exams.
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At 32, I was the "classic" patient from an age perspective, and sure enough, I caught my cancer on a self-exam in the shower. While not painful, the small, firm lump "just didn’t feel right" and caused a pit in my stomach every time I touched it. I knew something was wrong.
The most well-established risk factor for developing testicular cancer is having an undescended testicle at birth. Family history is also associated with testicular cancer but to a much lesser extent. To this day, we still don’t know exactly what causes testicular cancer. Despite having no specific risk factor, I had "won" this negative lottery.
Broadly speaking, there are two types of testicular cancer, which are based on the cell types that mutate to create the tumor. The two types are seminomas or non-seminomas. Similar to other cancers, either type can spread throughout your body, or metastasize, and cause significant issues.
There are medical nuances to each type, but the most important thing to remember is that both are treatable, or even curable in many cases, if caught early. In fact, across all patients, up to 95% are treated successfully, and even in more severe or advanced disease, the cure rate can still be up to 50%. I was diagnosed with a seminoma, the typically less aggressive of the two types.
Treatment depends a lot on cancer type and how advanced it is when first found. Surgery to remove the rogue family jewel is a cornerstone of treatment, but frequent imaging and blood work surveillance and/or chemotherapy may also be recommended. Each of us have different risk tolerances and having a discussion with your own doctor about treatment options is crucial.
Fortunately, not only was my cancer seminoma, I caught it early before it invaded the rest of my body. In the end, I had surgery and will get frequent imaging studies and labs.
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While quantity of life matters to me, quality of life was also very important following my diagnosis. In fact, this was echoed by those who reached out privately to share their testicular cancer journeys.
Fortunately, many men with testicular cancer return to healthy lifestyles with unaffected sexual function and the ability to have kids. This isn’t guaranteed for all who get diagnosed with testicular cancer, however, and it can differ based on the necessary treatment or mental impact of the disease.
We must normalize discussions about men’s health. To my fellow men, it’s OK to talk to your doctor if something feels wrong or "off" with a testicle. In fact, you really should and simply hoping it will "go away" is dangerous and could even lead to death.
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Also, your masculinity is not threatened if you get diagnosed with testicular cancer and need a testicle removed. It’s simply bad luck, and taking control of your health is the only thing you can do in response, so do it. Ultimately, what’s the worst that can happen?
For me, my wife now tells others "he’s nut" instead of "he’s nuts" when I act up. It always makes me laugh - I’m lucky for her and the life I have yet to live!
David N. Bernstein, MD, MBA, MEI is a resident physician at the Harvard Combined Orthopaedic Residency Program at Massachusetts General Hospital, Brigham and Women’s Hospital, Beth Israel Deaconess Medical Center, and Boston Children’s Hospital and a senior researcher in health care transformation at Harvard Business School. Follow him at @DNBernsteinMD.
