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.
The result of the biopsy was Paget’s Disease of the Vulva, or Extramammary Paget’s Disease (EMPD), an extremely rare type of adenocarcinoma.
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.
EMPD is hard to discuss with other individuals due to the personal nature of its location. Many people have no idea what a vulva is much less where it’s located on the body.
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.
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EMPD Extramammary Paget's Disease Paget's Disease patient stories
Last modified: February 7, 2025
