Stephen Schroeder figured he had little to lose, his growing sense of desperation fueled by the loneliness of his unusual diagnosis.
For more than two years, Schroeder had been coping with an extremely rare, invasive cancer called extramammary Paget’s disease (EMPD), which had invaded his scrotum, requiring multiple surgeries. Women account for roughly half of EMPD cases; the cancer, often misdiagnosed as eczema or contact dermatitis, attacks the sweat-producing apocrine glands, including those in the genital and anal areas.
The slow-growing cancer, which in men is frequently misdiagnosed as “jock itch” — slang for a fungal infection — can be fatal. And while treatment is often grueling, for Schroeder the worst part was his sense of isolation: He had never spoken to anyone who shared his diagnosis.
But in time Schroeder would engineer a solution to his isolation, reaping its benefits by connecting with others in similar circumstances. The richness of that experience, he said, has exceeded anything he could have imagined.