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Rare Cancer: Gynecologic Extramammary Paget's Disease
Gynecologic Cancers | Last Active: Oct 24 10:43am | Replies (76)Comment receiving replies
Welcome, @moffitt. As you said, extramammary Paget's disease (EMPD) is very rare. I had not heard of it. But through my searching online I did find an open clinical trial at Mayo Clinic that may be of interest to you:
- Gynecologic Extramammary Paget's Disease https://www.mayo.edu/research/clinical-trials/cls-20387127
To help me better understand the condition, I also found this educational tutorial for clinicians to learn how to properly evaluate for extramammary Paget disease. It also highlights the role of the interprofessional team in caring for patients with this condition.:
- Extramammary Paget Disease https://www.ncbi.nlm.nih.gov/books/NBK493224/
Moffitt, is this a new diagnosis for you? Are you currently in treatment?
Replies to "Welcome, @moffitt. As you said, extramammary Paget's disease (EMPD) is very rare. I had not heard..."
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I have had EMPD since 2013 but did not know it. Every dermatologist or OBGYN told me I had Herpes or Ezcema or some kind of keritosis. I was prescribed steroid creams and herpes drugs. Finally, in 2021 I went to a new dermatologist for annual skin cancer screening. I asked if he was comfortable checking a condition in my gential area. Yes he was; and he did a biopsy. The biopsy came back EMPD. The dermatologist had previously worked at Moffitt Cancer center in Tampa; and was able to get me in for consult land surgery. One side of my labia was completely removed; and the other side was partially removed. They suspected that is was non-invasive.
Shortly after, they suspected it was invasive because my lymph node in my groin became enlarged.
Groin lymph node biopsy came back as having triple negative breast cancer. Subsequent 3-D mammogram and PET scan showed no breast cancer.
I was started on Taxotere chemo since they did not know what I really had or what to do with me. Tumor boards at both Moffitt and Florida Cancer Center in Tavares, FL were convened.
more.......if interested and/or important. I would like to enroll in the clinical observational study you mentioned in your previous response.