Rare Cancer: Gynecologic Extramammary Paget's Disease

So glad your treatment is working for you. Did you have any surgery before chemo? Was the chemo difficult to go through? What about the lesion? Did the chemo cause it to go away? As you can see I am full of questions. Just diagnosed and seeing an oncologist on June 19. Where did you go for treatment? What kind of oncologist are you seeing?
I appreciate any insight you can give me.

Good morning! Oh dear: you are suffering. Too bad you are not in California because cannabis save is legal.... never put it there though but at every manifestation i am told to use Imiquimod. It treats the EMPD of the vulva manifestations. The itching and burning i have is from the Imiquimod that i take topically for like 8 weeks. My oncologist and I have found my tolerance level of side effects. i don't before itch and burn before treatment but a visual from my ob/gyn reveals skin manifestation. i have been told repeatedly that i need to look there every so often because one can see like an aging spot.... I was also told repeatedly that it is a slow growing pre cancer type of cancer. I am 68 and went to what I thought was my last pap smear at 65. There is no pap smear after 65 but it is recommended to get the visual exam once a year. I would be more comfortable if I could get the visual every 6 months. Cold pad wrapped in a towel, and alternatively hot pad wrapped also off and on when itchy and burning. sit bath also (seat bath?)... lidocaine to numb... other meds to help with itching burning... I am all for it since I don't tolerate this kind of pain... let me know how it goes for you over time. Blessings

There are tests to determine whether immunotherapy will work - mine showed it would not, so i did not have immunotherapy after all. Instead I had a round of Chemo. Doing fine.

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!

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.

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.

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.

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?