Extramammary Paget’s disease (EMPD) is a very rare form of cancer that is often misdiagnosed as a jock itch, a fungal infection in the skin of the genitals, inner thighs and buttock. EMPD usually invades the scrotum and requires multiple operations and skin grafts. The cancer is so rare that patients suffering from this cancer may feel extremely isolated. A year ago, Sandra G. Boodman published an article in her “Medical Myststeries” column about Stephen Schroeder, a patient whose doctors failed to diagnose EMPD. Schroeder wanted to speak publicly about his cancer because he wanted other men to be aware of the common misdiagnosis and also because he felt isolated and he was trying to connect with other patients who were suffering from the same rare disease.
After the article was published in October 2016, he received hundreds of emails and connected with 80 people who were suffering from the same rare form of cancer. He created an online support group where patients and doctors treating them can share information about the disease. Schroeder’s website contains so much information about Extramammary Paget’s disease that scientists used his data for a study recently published in Urology.
The article was also read by patients who had been mistakenly diagnosed with jock itch. A 50 year old engineer read the article on the plane on his way back from China. He was diagnosed with a fungal infection but Shoeder’s story felt so similar to his own experience that he went back to his dermatologist and asked for a biopsy. He also used Shroeder’s website to figure out which questions to ask doctors. The biopsy results confirmed the man was misdiagnosed and he had cancer. He had surgery and he is now in remission. He developed a friendship with Shroeder and the two men met twice in person.