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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.
I tried everything. Antifungal creams. Medicated soaps. Powders.
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.”
But as I was getting ready to leave, she hesitated.
“Do you mind if another doctor takes a look, just to be sure?”
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?”
It was a question that changed everything.
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.”
Courtesy of Stephen Schroeder
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 process again and again.
By evening, the surgical team believed they had successfully removed all traces of EMPD, and I was carefully sewn back together. The next day, my surgeon reassured me that everything had gone well, even joking, “The good news is, I believe we got it all. The bad news? Your stripper days might be over.”
Courtesy of Stephen Schroeder
I lay motionless in a hospital bed, my body fighting to accept the skin grafts. The pain was beyond anything I had ever known — a deep, searing agony that felt like my skin was being torn and burned from the inside out. Every slight movement sent shockwaves through my body, and even the strongest medication barely dulled the relentless sting. But after a few days, the pain began to ease.
Then something else gnawed at me: Where were the others?
Why had I never heard of EMPD? Why was there so little information? With nothing to do but stare at the ceiling, I had plenty of time to think.
That’s when I decided: I needed to change this.
I created an online resource and started an associated EMPD support group where people could find reliable information, connect with others, and know they weren’t alone. I couldn’t change my own diagnosis, but I could use my experience to help others navigate theirs.
Recovery was slow. It took a month before I could bring myself to face the surgeon’s work in the mirror. When I finally did, I was both stunned and impressed. The amount of tissue they had removed was staggering, yet the precision in reconstructing what remained left me in awe. The healing process was agonizing, and it took weeks before I could move with any sense of confidence.
But my relief was short-lived. Within a year, the redness and itching returned. By then, I had moved across the country, forcing me to start over with new doctors. Over the next four years, I endured multiple surgeries at university medical centers and specialized cancer hospitals, including another extensive skin graft. Each procedure was an attempt to eliminate the disease. With no standardized treatment for EMPD, every decision felt like a leap of faith.
Some days, it felt like I wasn’t just fighting cancer — I was battling the health care system. With minimal communication between hospitals, I was left to piece together my own medical history, repeating my story at every appointment. It was exhausting.
Although I had skilled and compassionate doctors, they were limited by a system that didn’t support seamless collaboration. While electronic medical records improved access, the lack of interoperability across different networks led to delays and inefficiencies. Even the best doctors can only do so much when critical information isn’t easily shared.
The isolation was one of the hardest parts. Few people had heard of EMPD, and even fewer understood what I was going through. I regretted not pushing harder for answers sooner, and not demanding a biopsy earlier. Could I have saved myself from extra surgeries? Maybe. But I can’t change the past.
My purpose became to raise EMPD awareness, and ensure no one faced this disease feeling lost and alone.
What began as a single-page website has grown into the largest online resource for EMPD, connecting over 900 patients and family members across 50 countries. What started as a search for a few others turned into a global community. Yet, as new members join, many others lose their battle — a sobering reminder of the urgent need for early diagnosis, better treatments and continued awareness.
This increased awareness is also fueling new research. Many members are now part of EMPD studies, offering hope for better understanding and treatment of this rare disease.
Courtesy of Stephen Schroeder
In 2023, news reports revealed that Barry Humphries, the actor and comedian best known as Dame Edna Everage, had secretly battled EMPD before his death. Like many, he kept his diagnosis private — a silence that too often follows this disease to the grave.
Today, I am grateful to be cancer-free for five years, but the experience changed me. It taught me to listen to my body, push for answers, and never take my health for granted. I often think about how easily I could have ignored that first itch — and what might have happened if I hadn’t advocated for myself by asking those four life-changing words: “Would a biopsy help?”
Would I still be here today?
That question fuels my determination to speak out. Raising awareness isn’t just about helping those diagnosed feel less alone — it’s also about ensuring doctors recognize EMPD early, and that more research is dedicated to understanding and treating this disease.
I refuse to let anyone with this disease go unheard.
Stephen Schroeder, a retired senior executive, has dedicated himself to advocacy and support after his battle with invasive Extramammary Paget’s disease (EMPD). He lives in Spokane, Washington, with his wife and two cats, finding joy in traveling, hiking and the outdoors. To raise awareness of EMPD, and connect those affected, he founded myEMPD.com and established an international EMPD support group. Learn more at myEMPD.com.
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