Has anyone had Paget's disease of the vulva?

@bouf1948
No was only in the hospital about 5 hrs start to finish. That include the 2 hrs to get signed in and having an iv put in. Since it is hard to find veins in my arm they put it in my hand. Worked great! You can ask them to numb it with lidocaine and you barely feel it.

@foster14 thank you! That’s the best news I’ve heard all day! So, do you go in every so often to see if it’s come back? You’ve had how many surgeries? Did you have stitches - did you have trouble getting around?

@foster14 what about the lady that said she couldn’t walk, sit or drive for 4 weeks? That wasn’t true for you?

@naturegirl5 I’m having surgery Monday 3/2 at 7:30 am to remove the cancer to a margin where it comes back no cancer. I’m kind of scared because I don’t know how invasive it is and the doctors don’t either at this point. I’ll spend the night in the hospital and then decide if I want/need to spend some time at my cousin’s house. I don’t know what to expect after surgery. One lady on here said she couldn’t function well for four weeks. The doctor estimated I’d have 30 stitches. Can anyone tell me if they’ve had similar circumstances.

@janeellenmc I’m having surgery Monday for Extramammary Paget’s for the first time. How are you doing. Have you had to have more surgeries? How hard was the recovery period for you? How did you sit? Did you shower every day? I live alone and I don’t know how I will be able to function.

@bouf1948 I can imagine how frightening this is for you. You and your doctors cannot know the outcome of the surgery ahead of time. For any of us, that unknown is what drives the fear and anxiety. I've had so many times over the years that my anticipatory fear and anxiety has made it difficult for me to function. I'd like to say this has become a little better over time as I've learned some coping skills to get through these periods particularly as it concerns my health and cancer.

We have a tendency to leap to the worst conclusion for ourselves. For me, it was, what if my cancer comes back again? What if it's spread? What if I become frail and sick during treatment like happened with both of my parents? All of these "what ifs" get my fears to spiral out of control. So here is another "what if". What if none of these things happen? What if I continue to live my life day to day and do the things that are meaningful for me? What if your surgery goes smoothly and your surgeon tells you that the margins look very good? What if your recovery is smooth, and you take that time for yourself to practice the care that your doctors recommend?

Can you challenge your own thoughts on this? One of my favorite sayings is "Don't believe everything I think". If there is no factual evidence for my thoughts perhaps these are my thoughts and not the reality.

Your plans to spend some time with your cousin at their house sounds good. Since you live on your own perhaps the company of your cousin while you recover from surgery will be something to look forward to.

I will be thinking of you on Monday, 3/2 during your surgery and your recovery. I wish for you compassionate care from your surgical and recovery team.

I have had 2 surgeries for Paget’s of the vulva. After the first one I found that I could sit comfortably on a larger throw pillow that was about 2-3 inches thick on top of my recliner seat. I could walk without issues. The second surgery was in an area that I don’t sit upon normally so sitting was no problem. Just 10 days ago I was diagnosed again with 2 new areas of Paget’s, one at the top of the area perviously opérated on that the other at the bottom of the area previously operated on.

My Dr spoke of a new/off label use for Paget’s that has been recently shown promise. Have any of you used it and how did it help you?

@foster14 this was a very painful surgery - not like yours. I was operated on Monday at 7:30 am, and I spent two nights in the hospital. I came home today. I don’t feel I was ready to come home. I am having trouble sitting and getting up. I had a left side vulvectomy with laser back to the anus. I need a shower, but I don’t dare attempt that alone. Home health care is coming tomorrow. If it comes back, I’m wondering if it will be as painful next time.

@boomerotr cream? My doctor said we may have to use cream in the future

@bouf1948 What supplies and information were sent home with you so that you can recover more comfortably from the surgery? Perhaps the home health nurse will have suggestions for you?