At first, it was just an itch. Annoying. Persistent. Unrelenting. It was the kind of itch that keeps you awake at night, demanding to be scratched. I chalked it up to jock itch, grabbed an over-the-counter cream, and expected relief.
Weeks turned into months. The itch became a slow burn, then a raw, searing irritation spreading across my groin. The more I scratched, the worse it got — red, inflamed, impossible to ignore. Something was wrong.
During my annual checkup, I hesitated before mentioning it, uneasy about discussing something so personal. My doctor took a quick, gloved look.
“It’s probably just a fungal infection,” she said. “Keep using the over-the-counter treatments.”
Moments later, a second physician examined the irritated, red area that had taken over parts of my groin and scrotum. After a quick discussion, both doctors agreed it was probably nothing serious but suggested I see a dermatologist just in case.
I wasn’t worried. I had dealt with malignant melanoma over 30 years earlier and beaten it. I saw a dermatologist regularly, so this felt like just another routine check.
At my dermatologist appointment, the doctor wasn’t so sure it was jock itch. He prescribed new treatments and told me to follow up in a few weeks. I left feeling confident I’d finally kick this stubborn itch.
Weeks later, I was back, and the symptoms were worse. A small, pimple-like lesion that had appeared on my scrotum wouldn’t go away. My dermatologist reconsidered. Eczema? Contact dermatitis? A different fungal infection?I tried a new treatment for a month or more before switching to a different one. Each time, nothing changed.
As the months dragged on, it became clear something was seriously wrong. By then, over a year-and-a-half had passed. I had tried everything, and nothing worked. Finally, nine months into these fruitless dermatologist visits, I asked, “Would a biopsy help?”
The punch biopsy was swift and sharp — a brief sting as a small piece of skin was taken for testing. After 1 1/2 years of uncertainty, I felt a flicker of hope — maybe this would finally bring the answers I needed.
A few days later, the dermatologist called. I could hear the hesitation in his voice.
“I’m sorry to tell you this, but the biopsy results came back positive for invasive Extramammary Paget’s disease (EMPD). It’s cancer.”
I was stunned. My heart pounded, and a cold sweat spread over me. Cancer? I had never even heard of Extramammary Paget’s disease before. My mind struggled to process the words as I asked him to repeat them — again and again — while I fumbled to scribble them down on a scrap of paper as my hands shook. And then there was the word “invasive” — what exactly did that mean?
In the weeks that followed, I began to grasp just how rare and serious EMPD can be. It affects between one in a million and one in nine million people, depending on the population studied. While it most often appears on the vulva in women and the genitals in men, it can also develop in the perianal region, perineum and armpits.
EMPD shares cellular traits with Paget’s disease of the breast, but because it occurs elsewhere, it is classified as “extramammary,” meaning outside the breast. Its rarity makes diagnosis even more challenging as many doctors never encounter a single case during their careers.
EMPD can develop on its own or as a sign of cancer spreading from another organ. Either way, early detection is critical.
This rare and complex skin cancer also varies by geography. It is more commonly diagnosed in women in Western countries, while in many Asian countries, it is more prevalent in men. EMPD primarily affects individuals over 40, with most cases appearing around age 65, though it has been diagnosed in patients as young as 17.
When I heard “invasive,” I had only one question: Am I going to die? The answer wasn’t clear. EMPD can spread, but it’s often slow-growing. Still, my mind leapt to the worst-case scenario.
By the time I was diagnosed, the cancer had already advanced beyond my groin. My dermatologist stressed the urgency of finding a surgeon, but locating one with EMPD experience proved exhausting. After weeks of searching, I finally found a reconstructive urologist who provided the strongest path toward long-term recovery.
The first surgery was performed under general anesthesia at a teaching hospital. It lasted all day. Throughout the procedure, medical residents shuttled tissue samples from the operating room to a pathology lab down the block and across the street, where pathologists examined frozen sections for any remaining Paget cancer cells. Meanwhile, my reconstructive urologist painstakingly rebuilt my scrotum, penis, perineum, and surrounding areas using skin grafts from my leg. Each time they believed they had removed it all, they learned the cancer was still present, forcing them to repeat the
Content adapted by the team from the original source: https://www.huffpost.com/entry/itch-extramammary-pagets-disease-cancer_n_68360c7fe4b0a70b65d5c519
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