Has anyone had Paget's disease of the vulva?

Hello. I read your message and would like to know how the surgery went?
I am a 37-year-old woman who underwent surgery for extramammary Paget's disease twice in the last four years. I wanted to get more information about the countries that perform specialized surgery and also the medicinal methods.

Hello @amapola1987 and welcome to Mayo Connect. It sounds as if you have been dealing with extramammary Paget's for some time now and I can understand that you are looking for some other treatment options.

You do not say where you reside, so I don't know what country (or countries) might be near you. However, please know that Mayo Clinic does see international patients. Here is a link to appointment information, http://mayocl.in/1mtmR63.

Here is some information from Cleveland Clinic in the U.S. about this disorder and what treatments are offered at Cleveland Clinic,
https://my.clevelandclinic.org/health/diseases/24266-extramammary-pagets-disease
From reading the article from Cleveland Clinic, I see that this can be primary or secondary Paget's Disease. Do you know if yours is primary or secondary (from another type of cancer)?

Thank you for your reply.
I am in Iran. The medical services here are more than in the entire region, but I can travel for medical treatment and go to another country that has more expertise in Paget disease. I want to prevent the disease from returning as soon as possible.

@amapola1987, if you would like to seek a second opinion at Mayo Clinic, you can submit a request here: http://mayocl.in/1mtmR63

I'm tagging @chaka67 @ameliae @juju67 @lrcg @ima1survivor @janeellenmc @victoria15 @biancasmythe @lydiamae @bijou68 @joyceinil to bring them back into the discussion. I'm sure you've read their stories in the previous comments and the treatment options they chose.

@amapola1987, I can understand your concern about recurrence after already having had surgery for extramammary Paget's disease twice in the last four years. Has it returned? What treatment options are you exploring?

Thanks, Colleen: I am hoping Amapola can be seen at the Mayo Clinic. 37 is much too young to go through this disease. i will respond to her shortly.

Hello: May I suggest that you reach out to the Mayo Clinic in the US. I read that there are three locations. Perhaps Colleen can stir you in the right direction. Or the Cleveland Clinic as one of us suggested. I find you much too young to be dealing with this strange disease!!!! I am curious to find out from you and from all of you if any of you had Papilloma Virus? About 25 years ago or some three quarter of my cervix was contaminated by PV. The gynecologist had burnt the affected area and after numerous Pap Smears i was fine. Until manifestations on my vulva 3 years ago and that is when i receive the diagnosis of Paget's Disease of the Vulva. I am treated solely with Imiquimod which has also another name which escapes me at the moment: Aldara??? It is a cream. It has discomfort but it is getting easier... I was recommended to have the clitoris removed and i had scheduled the surgery when my oncologist informed that Imiquimod showed successes. So i tried. I was 65 when diagnosed. Even though no one seems to know exactly about the proper protocol (as not enough studies have been done so far), because the growing number of people affected, research will pick up some speed. As far as I know it is my only foyer of pre cancer or cancer manifestation. Cross fingers. Please do keep us updated. Prayers and happy thoughts

I am 2 1/2 weeks out of surgery. It is typical for 3 or 4 weeks of healing. Mainly I find having any clothing on the area is irritating so I'm home only getting dressed if absolutely necessary for appointments. Make sure you have a sitz bath. Nobody told me to do that after surgery and it caused problems. I don't know how anyone could do this 6 times once was enough for me

Thank you for your reply. I first noticed slight changes in the vulvar area when I was 28 years old. It took four and a half years for the correct and original diagnosis about the disease. Using topical medication did not work. At the age of thirty-three, the first two-centimeter deep surgery was performed to completely drain the edges. At the age of thirty-five, the surgery was light and only on the skin. From two years ago until now, there has been a slight discoloration in the same area, I had a biopsy last week and I am waiting for the results and I have not made a decision yet. Given that I am younger, the progression of the disease is worrying. In Iran, there was almost no one except me, or I did not find that he had such a disease, or even that doctors had performed surgery. For this reason, I underwent surgery by the medical team in a private hospital. But I want to stop the progress process and go to a country that is familiar with this surgery as soon as possible, because the disease process in me is faster than two or three years.
Pleae help me about it

Thank you for your guidance. I will definitely search for Mayo branches and contact them. I had all the internal tests done and there was no evidence of internal problems in the bowels or uterus.
I need to find the right clinic before my test results are ready in two weeks. Considering the rapid progress of the disease, I welcome any suggestions for help.

I hadn't heard of secondary Paget's til reading above. I wonder if that is what I have, as the gyno-oncologist said it seems to be related to having had breast cancer. And now metastatic breast cancer after 20 years. Secondary is non-invasive?? At any rate, he says mine isn't invasive or aggressive. So, no surgery or imiquimod. Thank God, as I have enough dealing with the cancer again.