Cases double in two decades, HPV link, and the importance of early detection
When Wayne Earle was diagnosed with penile cancer, he had only one option for survival.
His doctor told him that he needed a penectomy, or surgery, to remove his penis.
“That’s all I heard,” the now 58-year-old recalled. “You don’t hear anything after that.”
Earle, who lives in the Blue Mountains, is among a small but growing number of Australian men diagnosed with penile cancer, a stigmatized and devastating disease.
The number of new cases in Australia has more than doubled in the last two decades; The number of cases, which was 73 in 2005, increased to 165 last year.
Human papillomavirus (HPV) is linked to about 60 percent of penile cancer cases, but other risk factors include being uncircumcised, smoking, older age, and skin conditions such as psoriasis or UV exposure.
While health experts don’t know exactly what’s causing the increase in cases, urological surgeon Associate Professor Dixon Woon suspects an aging population and fewer boys being circumcised may be factors.
But Woon, who holds a leadership position at the Urological Association of Australia and New Zealand, said the risks associated with circumcision did not outweigh the benefits.
“The HPV vaccine provides much better protection against penile cancer while also preventing cervical and oropharyngeal cancers,” he added.
The biggest obstacle remains the stigma surrounding the disease.
It’s common for men to delay seeking help out of embarrassment, Woon said. This can lead to fewer treatment options and worse outcomes for patients.
Treatment of early-stage penile cancer may include circumcision, removal of the lesion, or topical chemotherapy, while later-stage treatment involves partial or complete removal of the penis.
According to Woon, up to 80 percent of men who receive treatment before the cancer spreads to the lymph nodes are cured of the disease.
“Early diagnosis is crucial for survival,” he said.
To speed up the time between symptoms and diagnosis, Woon is working with a team of researchers to develop an artificial intelligence tool to help doctors identify suspicious lesions.
Earle noticed a small red spot on his penis 11 months before he was diagnosed.
His dermatologist initially thought the lesion was part of psoriasis, a skin condition he had suffered from since childhood.
When the lesion did not respond to steroid cream, his doctor recommended that he begin wart treatment. However, the stubborn spot did not respond to this either.
During his fourth visit to the dermatologist in 2014, a biopsy of his penis skin was taken and sent for testing. The results came back as invasive penile squamous cell carcinoma.
Unlike many men diagnosed with penile cancer, Earle’s case is not linked to HPV.
He believes his cancer was caused by the UV light therapy he received to treat his psoriasis.
Jonathan Hallett, associate professor of health promotion at Curtin University, expects cases of penile cancer to decline in the coming years as the HPV vaccine became available to high school girls in 2007 and to boys in 2013.
“We’ve seen really dramatic reductions in HPV prevalence and genital warts in young Australians since the program started,” he said.
“However, because these cancers take decades to develop after initial infection, we likely will not see significant declines in rates for some time as vaccinated groups reach the age at which these cancers typically appear.”
HPV is a common sexually transmitted infection, and most people clear it within a year or two, he said. But a persistent infection can shut down the body’s natural tumor suppression mechanisms and allow cells to grow uncontrollably.
Last week Belgian urologist and cancer researcher Professor Maarten Albersen spoke about the profound sexual and psychological effects of penile cancer at the Australian Urological Association and New Zealand conference in Melbourne.
“Unlike many other cancers, the disease and its treatment directly affect the part of the body that is essential for sexual function and self-perception,” Albersen wrote in a recent article.
He said patients often face significant functional and aesthetic challenges, such as urination difficulties, decreased mobility, persistent pain, sexual dysfunction and lymphedema (swelling in the body).
More than 60 percent of penile cancer patients need psychological care.
The mental toll of Earle’s treatment was profound.
“I didn’t see myself as a man anymore,” he said. “That’s what defines you in our society.”
Following the surgery, his marriage broke down and his self-esteem reached an all-time low.
Although Earle still suffers from painful lymphedema in his legs due to the removal of his lymph nodes, his outlook on life is much more positive these days.
He is seeing a psychologist and has set up a charity called Check Your Tackle, which raises awareness of penile cancer.
He also runs a global support network on Facebook for more than 800 men diagnosed with penile cancer. The men are in their 20s to 70s, and the group helps them overcome the trauma of surgery and the identity crisis that follows.
“I tell kids, ‘This is just part of who you are; it doesn’t make you a man,'” he said.
Earle also remarried and found ways to become close again.
“There’s kissing and hugging and real partnership,” he said.
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