Rare Cancer: Gynecologic Extramammary Paget's Disease

thank you so much for commenting. It's good to hear from others who have gone through this. Are you doing any kind of treatment? I have intense itching and soreness at the site. Are you able to be comfortable?

Yes. Everyone is different. I am in a minority - but at 77 have decided against surgery - at least for now. It also depends if it is invasive or not now. You will find lots of support here and in another private group that has folks from around the world. myEMPD. The exact link is in the comments here somehere. I'm sorry not to be good at finding things.

I was just diagnosed with extramammary Paget's Disease. Have not talked to my doc yet. Just know what I read online. Pretty scary. I am 84 years old and not in the best of health. Anyone else have this awful rare disease? What was your treatment?

Good idea: I had a colonoscopy 5 years and my next one is in 5 years. I do mammogram every year. Pap smear ... last one was at 65 and that is when the gynecologist saw the spots on the vulva.... I will ask my gynecologist august 1 this year... I will let you know.

I see. So you have not had other tests done, mammogram, colonoscopy, Pap smear, to make sure it isn’t lurking anywhere else?
Where are you located again?
Wishing you wellness!

Hello, Naomi: I had several spots all around the vulva area the last three years since the discovery, so my oncologist said surgery is not an option right now. Yes the treatment seems to keep things in check, but I am wondering about why the "manifestations" are coming so often. She has told me several times when I start to worry that, as long as I treat the new spots, I should be fine. Since EMPD can be found in the breast, I asked her if my disease could be spreading to the breast and she did not think so, but then again there seems to be not enough evidence or research.

Thank you. Yes it does answer my questions.

Thank you. This is helpful. Although scary. Does it look like you are able to keep things in check with the cream? No one is pushing for surgery?

Good morning, Naomi: By surveillance I meant: once a year I go to my OB/GYN for her to look at the vulva area; I would go twice a year if I could, but I think that is what I am allowed on my Medicare plan. She has spotted manifestations of EMPD every time. This is what I meant by visuals. Of course she uses a very strong light to observe. Then either she does the biopsies or has my oncologist perform them. Every time I have a biopsy, it is positive. Then, I start Imiquimod like same day or day after for about 8 weeks. After the treatment I go see my oncologist. Imiquimod treatment was suggested by another gynecologist skin specialist who knows both my Ob/GYN and my oncologist. I am being told EMPD is slow at developing but then I read a comment on this site from a lady who said, her EMPD was very aggressive and now the cancer has spread. I was told Imiquimod was originally used for other skin related treatments. I would not have known I had EMPD of the vulva if I did not go to my last Pap Smear at 65. Both my OB/GYN and my oncologist encourage me to tell all my friends and others to keep going once a year for the visual. My OB/GYN thinks that Papilloma virus might be causing EMPD but there is no supporting evidence yet. However, my oncologist says that she does not think so. In any event: I had Papilloma virus about 20 or 22 years ago and went through burning of the tissues affected around the cervix. My OB/GYN is guessing that then the doctor may have not gotten every cell affected by Papilloma Virus. Now children (boys and girls) are getting the vaccination.

@nomikins I can answer your questions. "Surveillance" in cancer care means that you are being carefully monitored for any new signs of cancer. You are scheduled for appointments according to your Cancer Survivorship Plan (I had endometrial cancer and so I go for appointments every 6 months for the next 2 years, then after that I will go annually). The "visual" I think refers to a physical exam. I have a physical exam (a pelvic exam) by my nurse practitioner as part of my surveillance. If she sees something suspicious then she removes the tissue (if possible) for a biopsy and sends it to pathology for a diagnosis. That is how my recurrence was found in 2021.

Your surgeon sent your biopsies to the lab to be examined by pathology. Have you heard back yet from your surgeon or seen your pathology report?

When you see your surgeon again she will tell you often you should return for those "active surveillance" appointments so that either she can examine you (the visual) for any changes that she will biopsy and perhaps treat again. If she does not tell you how often you should return then please ask her.

Does this answer your questions?