Rare Cancer: Gynecologic Extramammary Paget's Disease

Posted by moffitt @moffitt, Sep 15 8:52pm

Extra Mammary Paget’s Disease – invasive cancer.
No know treatment or clinical trials.
Very rare and rarely studied.
Anyone else have it?

Interested in more discussions like this? Go to the Gynecologic Cancers group.

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?

REPLY
@colleenyoung

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?

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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.

REPLY
@moffitt

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.

Jump to this post

Thanks for sharing more of your diagnosis story. I'm not surprised that this is a cancer that often goes unrecognized. To find out more about your elibility and enrollment in the study, please contact Mayo Clinic Clinical Cancer Trials. Here's the info:

CANCER-RELATED CLINICAL STUDIES QUESTIONS
https://www.mayo.edu/research/clinical-trials
Phone: 855-776-0015 (toll-free)
Contact form https://www.mayo.edu/research/forms/cancer-clinical-trials

REPLY
@colleenyoung

Thanks for sharing more of your diagnosis story. I'm not surprised that this is a cancer that often goes unrecognized. To find out more about your elibility and enrollment in the study, please contact Mayo Clinic Clinical Cancer Trials. Here's the info:

CANCER-RELATED CLINICAL STUDIES QUESTIONS
https://www.mayo.edu/research/clinical-trials
Phone: 855-776-0015 (toll-free)
Contact form https://www.mayo.edu/research/forms/cancer-clinical-trials

Jump to this post

Thank you for the information. I filled out the information for a EMPD clinical trial.
My history and experience will be helpful to early diagnosis.
Nancy Gilligan

REPLY
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