extra mammary Paget’s disease of the Vulva

I was dx w EMPD 8/24 had 3 serial vulvectomies with positive margins. Then reconstruction w failed Singapore flaps 11/4. Several more surgeries for debridement of infection. I am still healing and out of work to this day wearing a Foley catheter since 10/24. I also have breast cancer and pending bilateral mastectomy 3/13. I’m scared it will come back since it was always positive pathology. At a loss in Texas.

Hi! I'm 56 but was diagnosed 11 years ago. Since I posted on here I have had another operation in October with positive margins.  I'm so sorry that you are going through so much at the moment xx

I am so sorry that you are going through so much with this disease. I am older so feel that it is slightly easier for me. So far I have used imiquimod cream to contain it but know that at some point I may need surgery.

Also there are a couple of really supportive groups on FB with hundreds of members who have EMPD and have been through every treatment possible.

I am so sorry that you are suffering like this. The nature of EMPD is that is very hard to get clear margins. But thankfully it is very slow growing. I have sent a friend request. Happy to answer any questions, been a long time warrior with EMPD. Sending love and best wishes and healing. X

Hi, could you point me in the right direction for the support groups if possible please?

Hi Bella2010 

The best place to discuss groups unconnected with the forum here is by private message between you and the other member. Links to groups online are not allowed on the forum unless they are linked to a charity so they would be removed. 

I notice that you’re not a member of any groups yet, so you may want to join the vulva cancer forum group first. You can reply to posts in a thread when you are not a member, but you would not be able to make a new post of your own. 

This is a link to the help pages in case you are not sure how to go about managing your account, friends and messaging.

Help Pages

Sarah xx