Rare Cancer: Gynecologic Extramammary Paget's Disease

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.

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!

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 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?

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.

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?

I am very new here and just learning the ropes. Just diagnosed. I thought surgery was the preferred treatment. May I ask what "treatment" is keeping things in check for you? I am 84 and probably can't stand surgery. Wondering if and what any other options are. From what I have read I get the idea that EMPD recurs a lot. Guess that's just the nature of the beast. My dermatologist has been treating me for lichen sclerosis for nearly three years before taking a biopsy last week.

I have doctor prescribed medical cannabis (THC) to put on it whenever needed - especially after urinating. Also a special water squirt bottle that dilutes urine so it burns less. There's a name for the bottle which I'll look up if you don't know what I mean. peri-something... I think. Anxiety is high - sometimes more than others. So far, it has been non-invasive and it's been there at least ten year - undiagnosed until April 2023. When I go out of Canada (where cannabis is legal) I had to do something else. Used a white cream Zincofax from the baby diaper rash section of the pharmacy --- seeing doctor in cannais clinic tomorrow. Will find out if there was a better option. He also prescribed cannabis liquid under tongue morning and night.

Thank you for all that helpful info. I don't think I can use cannabis because I take a blood thinner, Eliquis. I am interested in the squirt bottle thing. And thanks also for the Zincofax hint. I use Desitin, also a diaper rash treatment, for other issues down there. But it did nothing for my lesion, which I now know is EMPD.

Hello Worried. Thank you for sharing your story. Can you let us know what kind of Immunotherapy you are trying? How has it been so far? Thank you and wishing you a speedy and full recovery!