Rare Cancer: Gynecologic Extramammary Paget's Disease

Hi! Are you sure your diagnosis is EMPD? I was not offered chemo or radiation! All I had was MOH’s surgery in January, 2024. At every check, so far, I remain EMPD free.

Victoria

@joyceinil I'm happy to know that you feel welcome and love this website. We do our best to be welcoming and supportive of one another. 😌

THANK YOU, HELEN. I am new to this site and I already love it and everyone.

@joyceinil Oh, dear, you have certainly been through it in hte last few months. How frightening to suddenly lose vision in one eye. It's good to know that your doctor was right there and you went to the wonderful hospital in St. Louis. While no one wants to be in the hospital it sounds like you had good care there although you were exposed to COVID? I do hope you are feeling better today, can wean off the steroids and start the treatment again for EMPD.

I would very much like to talk to you about minimizing the side effects. However, my treatment for EMPD has been put on hold for probably five weeks. On Aug 23 I suddenly lost the sight in my right eye. It was feared I had Giant Cell Arteritis in the back of my eye which could wipe out the other eye as well. To prevent this I was put in a very large wonderful hospital in St Louis, Mo and given massive doses of steroids. In 3 days they decided it was PROBABLY not that but they continued the treatment. Luckily, I still have the sight in my left eye. After I returned home, it seems like I brought covid home with me and just got out of the hospital after another 10 day stay. I can't seem to get a break. Now I have to get weaned off the steroids before I can start the imiquimod. I am 84 and this has taken a toll on my old body. I will contact you when I am finally ready for that treatment, Thank you so much

Joyce: Hi: originally Imiquimod was used for something else but has been proven good for treating the manifestations of Paget on the vulva. So far, I am proof of it. I think it costs $0 if you have Medicare supplement, like i have with Kaiser. Side effects of using the cream can be minimized.. I will be glad to go into the details if you need me to. Healing thoughts to all!

Has your doctor talked to you about a chemo type ointment called imiquimod? I has been used with good results in the past 3 years or so and is preferable to surgery in many doctor's opinion. My SURGEON, has stopped most surgeries and is using imiquimod as a first defense. If you seem to need more surgery, I certainly would seek out a doctor who would be willing to try that method. The medication is not expensive. Only $30 if you used GoodRX. It is not a new drug.

@sonyac518 I did not have Paget's disease of the Vulva so I cannot offer you any ideas of how best to handle the ongoing pain and burning. I do know what burning in the genital area feels like from many infections over the years and that is horrible so I can only imagine.

This is an active and ongoing discussion. A few other members who have experienced the same diagnosis and surgery as you will pop in here to give you their thoughts and suggestions.

When is your next appointment scheduled with your surgeon? Do you have a phone number you can call and talk with the doctor or the nurse before your next appointment? Do you know if you will have any other treatments?

and is anyone else annoyed that our cancer does not have a cancer ribbon color, it's never on any of the cancer sites - it's bad enough to have cancer but it's worst to have such a rare one that doesn't have an awareness month or anything - or is it just me? lol

I have Paget's Disease of the Vulva. I had surgery September 6 and am still recovering. I had no idea what I was in for the doctor gave no inclination of the pain and recovery burning. The sample came back and the margins are not clear, so I don't know where I am going from here. I do not want to have any more surgeries I do not think I can take it. I retired less than a month prior to my diagnosis and am not mentally handling this well. I'm sure to caring for other people, not being down. I hope your doctor actually explains things better. I still don't know what is going on.