Men under 40 are most at risk for testicular cancer. Few know it

Many people don't know it, but men under age 40 are the most likely age group to develop testicular cancer.

Just ask Jay Riepenhoff of Upper Arlington, Ohio, who was 29 and still adjusting to life as a new father when he discovered a suspicious lump.

He wasn't thinking cancer. In fact, Riepenhoff got up for work the next morning and forgot all about it.

He felt the lump again that night, and thought he'd maybe set an alarm to remind himself to call the doctor the next day.

Riepenhoff didn't feel the first twinge of worry until his doctor told him to come in immediately. And then sent him the same day for an ultrasound.

"Still, I even thought in my head, 'I'll go check it out. It's not like it's cancer,'" he said.

Soon, Riepenhoff discovered what many don't realize: Of the approximately 10,000 cases of testicular cancer diagnosed annually, 51% are diagnosed in young men between the ages of 20 to 34, according to the National Cancer Institute, part of the NIH.

Yet a recent survey from The Ohio State University Comprehensive Cancer Center shows that few Americans — just 13% — associate the disease with young men.

"When you're young, in your 20s or your 30s, you certainly do think your health is just something you might take for granted," said Shawn Dason, a urologic oncologist at OSU's cancer center and an associate clinical professor of urology at The Ohio State College of Medicine. "You're more focused on other parts of life: your career, your family, your education."

While 6% of testicular cancer cases are diagnosed in children and teens and another 8% affect those older than age 55, the vast majority of cases affect men aged 20 to 50. The average age of diagnosis is 33, according to the American Cancer Society.

It is the most common form of cancer among men 20 to 40 and the second most common cancer (trailing leukemia) in ages 15 to 19, but it can happen at any time, according to John Hopkins Medicine.

The Ohio State survey questioned 1,008 respondents about their knowledge of testicular cancer and found general awareness lacking in many areas.

While most — 63% — knew that testicular cancer is often curable if caught early, just over half correctly said that self-checks should be conducted every month. Additionally, two-thirds of respondents thought that medical evaluations should be conducted during annual exams after age 40.

But waiting until 40 would miss the men most at risk — young men like Riepenhoff.

Self-exams are most relevant between the ages of 20 and 40 and are especially important for anyone with a family history of testicular cancer or who has had an undescended testicle at any time during their life, Dason said.

A painless lump is the most common first sign that testicular cancer may be present, Dason said. Often, that lump will continue to grow and possibly harden.

Few men report that pain is associated with lumps, he said, adding that many incorrectly assume that the absence of pain means the lumps are harmless.

If the cancer has spread — becoming metastatic — other symptoms could develop, like abdominal and back pain, or a cough and shortness of breath if it has spread to the lungs.

Still, testicular cancer is among the rarer cancers compared to, for instance, prostate cancer, the second most common cancer in men after skin cancer. There are approximately 313,000 new cases of prostate cancer diagnosed annually and nearly 36,000 deaths from it every year, according to the American Cancer Society.

While not as prevalent as other cancers, testicular cancer is a fast-growing one, Dason said, and one that will spread to other parts of the body if left untreated.

The majority of testicular cancer cases are curable, however, especially when they're caught early.

"Now that might beg the question, 'Well, if it's mostly curable, what would be the harm in just finding it later?' And the harm is really that he might need more treatment to ultimately cure it. And these treatments, they can be pretty serious."

When testicular cancer metastasizes, it often requires a far more invasive surgery — one with a longer, more challenging recovery, Dason said.

Chemotherapy, too, is generally necessary when the cancer spreads. It is a life-saving measure and "a critical instrument in achieving a cure in many patients," but it can have a variety of both short- and long-term side effects, many of them unpleasant.

"We really do have evidence that some men will pass away from testicular cancer. And so could those men, if they had presented earlier, have been saved? Very, very possibly," Dason said.

In Riepenhoff's case, testing following his radical orchiectomy — the surgery to remove his cancerous testicle — revealed that the cancer had begun to spread, and he underwent three weeks of chemotherapy. All of his treatment took place at the OSU cancer center, although he was not treated by Dason.

Fertility especially becomes a concern when chemotherapy is necessary, Dason said.

Riepenhoff and his wife, Rana, had welcomed their first child, John Patrick Riepenhoff V, just five months before he discovered the cancerous lump. They had long hoped for three children, so before surgery, Riepenhoff chose to freeze sperm in case treatment affected his ability to have more children.

His fertility was not affected, and they expect to welcome their second son in August.

While testicular cancer is highly curable — the 5-year survival rate is 95%, per the National Cancer Institute — dismissing the early symptoms such as a newly discovered lump can make it much more challenging to treat.

Dason pointed out that younger men — and, often, men in general — have acquired a reputation for putting off medical care until absolutely necessary.

In his experience as a physician, Dason said, younger men tend to eschew annual physicals. "When you're in your 20s and your 30s, there aren't a lot of chronic health conditions that these young men have, and a lot of them are not regularly visiting their primary care provider."

Plenty of patients put off seeking care "because they were embarrassed about it, or they were busy or they were hoping it would go away." Often, a partner is the one who insists they finally see a doctor, he said.

"It's normal to have a male sexual health complaint. It's normal to feel something abnormal and go get it checked out. And that's what our medical practitioners are there for: to help out with all of these concerns, not just a flu or an ankle injury."

And like Riepenhoff once did, many young men see cancer as a far-off threat. And it's just not discussed much, Riepenhoff said.

Riepenhoff pointed out that breast cancer awareness is everywhere. "You hear it from parents, schools and physicians," he said. "But with testicular cancer, I don't really recall. I'm sure in school we talked about it one time or something, but I don't ever recall that being hammered into your brain the way that breast cancer is."

He understands well the reasons men might wait to reach out to a physician.

"I'm sure there are a lot of men out there that got testicular cancer that waited to go to the doctor because they just thought it was an abscess or something. Nothing to be worried about. Had they known that this could be testicular cancer, they may have gone to the doctor earlier, and that can change your diagnosis pretty dramatically."

Riepenhoff said he asked his doctor what would have happened if he had waited to come in or if he skipped the chemotherapy.

"He said within a year or two, I would have been dead."

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