Most men have heard of testicular cancer, but penile cancer... not so much.

It’s rare. Only about 2,300 cases occur each year in the United States. However, according to a new study presented at the annual European Association of Urology (EAU) conference this month, a significant number of patients don’t receive adequate treatment.

The study examined adherence rates to EAU guidelines — the “gold standard” — for penile cancer treatment. Researchers found that 25 percent of patients didn’t receive recommended treatment.

Furthermore, patients who weren’t treated according to EAU guidelines had half the survival rate of those that were.

“This is one of the first reports concerning the EAU guidelines, enrolling patients from several continents, in a real-life perspective,” Dr. Luca Cindolo, the study’s lead author and a urologist based in Italy, told Healthline.

“So, this is something like a snapshot of the real practice in standard centers facing this cancer,” he said.

Treating penile cancer isn’t usually difficult if it’s detected early. However, there are several factors that can complicate it.

The first, as Cindolo and his colleagues address in their research, is simply that some primary care providers may not be familiar with cancer of the penis because of its rarity.

“In around half of those patients not treated according to guidelines, the decision was made by the doctor, and we suspect that this is because many doctors are unfamiliar with treating this rare but devastating cancer,” said Cindolo.

Symptoms and treatment

The early forms of penile cancer typically have symptoms that include a rash or infection on either the head of the penis (glans) or the foreskin (prepuce).

It can be itchy, sore, painful, and may bleed.

After this phase, it will begin to look more like a growth or wart.

Because the cancer is located on the genitalia, some people may not seek medical attention immediately, instead hoping the ailment will go away on its own, said Dr. Harcharan Gill, professor of urology at Stanford University in California.

However, it’s in this early, superficial stage that penile cancer is easiest to cure. In fact, it can typically be treated with creams, ointments, or surgery.

Once the cancer begins to spread to the body of the penis, the area known as the corpora cavernosa, treatment becomes serious.

In fact, treating penile cancer that has spread throughout the penis, may, for some men, be worse than the disease itself.

Partial penectomy, a partial amputation of the penis, isn’t uncommon. For more serious cases, a total amputation may be required.

If untreated, penile cancer will eventually spread to the lymph nodes in the groin.

In this later stage, lymph node excision — actually cutting out the lymph nodes — may be necessary to prevent the cancer from metastasizing, or spreading.

“Once this cancer becomes invasive, then the survival numbers start dropping rapidly depending on the stage,” said Gill.

Facing the facts

The statistics don’t lie.

According to the American Cancer Society, the five-year survival rate for superficial penile cancer is about 85 percent.

Once it spreads to the deeper surrounding tissue of the penis or to the lymph nodes, that number drops to 59 percent.

Once it metastasizes, spreading to other parts of the body, survival over five years sits at 11 percent.

Because of the severity of this cancer, the best option is to always pursue treatment early.

There are a number of risk factors that men should be aware of regarding penile cancer.

First, it occurs predominantly in men who are uncircumcised.

Smokers, people with HPV, HIV, or genital warts are also at an increased risk.

A man’s number of sexual partners is significant for many of these risk factors, so practicing safe sex that includes condom usage is actually also helpful in mitigating penile cancer risk.

“Patients who come late are usually obese patients who don’t get a good chance to look at their genitalia adequately. They’re usually diabetics who have poor overall health and are prone to infection, and they think it is just another infection on the penis. Also, patients of low socioeconomic status, low education status,” said Gill.

Additionally, general cleanliness of the genitals is also important. Uncircumcised men should always make sure to clean the head of their penis, in particular, making sure to pull back the foreskin all the way.

Smegma, a buildup of dead skin cells, oils, and other matter, often forms beneath the foreskin and is associated with greater risk of penile cancer.

“If you have any ulcer or lesion on the penis that does not heal with the traditional treatment for possible infection, then you should immediately seek referral to a dermatologist or a urologist,” said Gill.