@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?

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.

Sonya,,,
I could have written this myself. I have cancer of the Vulva (never had heard
of this) and have had similar situation. I had surgery and after two years, it
is back and they are now having me use the Imiquimod cream. It burns and
hurts. I do not know what to expect from here. There is not a day that goes
by that I do not burn and itch. But, some days are better than others. I
pray that this does not move into a primary organ. I think I am going to ask
my doctor to do a scan to make sure that the cancer has not spread. I, too,
would like to know the mortality rate of this disease. Please let me know how you are doing.