Virginia’s Rare Cancer Journey: Extramammary Paget’s Disease

Even though I was not a stranger to chronic illness, cancer was a whole different ballgame.

It all started with some itching. I thought I had a rash that was transient, and I couldn’t make an appointment quick enough to catch it because it would be gone in a day or two. My 2023 well-woman visit finally lined up to a day I had the issue occurring. I mentioned to my gynecologist that I had felt some itching off and on for a few months, and that I was itching that day. She completed a thorough examination and felt it could be Lichen Sclerosis. We began treatment immediately and 6 weeks later with no improvement she recommended a biopsy.

A week later, I saw a Gynecologist-Oncologist (GYN-ONC). My GYN-ONC recommended a partial vulvectomy which was completed in February of 2024 with positive margins meaning there was still cancer present.

Cancer can feel like a big, bad gorilla waiting to pounce. My GYN-ONC recommended surveillance which increased the anxiety of waiting for the eventual return. I got connected with other people that also have EMPD and was recommended to get a second opinion. I found a dermatologist that had co-authored EMPD research in the last 5 years, which provided some reassurance. My dermatologist is also a Mohs surgeon, and he recommended we treat with Aldara.

This new treatment option has provided me the opportunity to be an active participant in my care. It also has changed my mindset from waiting to have more surgery to feeling like I am actually fighting cancer.

The biggest thing is if you notice a change, say something to your doctor as so as possible. This allowed us to identify the EMPD while it was still localized.