Has anyone had Paget's disease of the vulva?

Thank you. Yes, they sent me a new link and I got in.

I went to myempd.com. Then I found the support group and answered their questions there. I had no issues getting in. If the link is broken, let the one who gave it to you know.
It continues to be a great place, and I continue to do well.
Blessings!

Any advice about how to access the empd Facebook page? I contacted the hosts and the link they sent me doesn’t work.

So Glad you are doing well!

I’m very interested to hear how you make out with Aldara. I have been hearing that surgery is the best option, especially for those that are relatively young and healthy, because it has the best efficacy when it comes to recurrence. (The Pagets doesn’t come back as easily, supposedly.) but who knows? So you are on Aldara because no one where you are does Mohs for vulva? If you want to come to Bay Area, I can link you up with a great Mohs team!

Thank you for asking. I will be on Aldara for 16 weeks and then will ask for biopsies to be done. After that, I may hit a roadblock because no one in Australia has expertise in doing Moh's surgery for pagets (vulva). I am looking in to possibly coming to the states for surgical treatment,

@biancasmythe, how are you doing? How did the consultation go? Do you have a treatment plan?

Welcome, @biancasmythe. It is confusing dermatological vs gynecological. It is my understanding that Paget's disease of the vulva (also called extramammary Paget's disease) is a rare skin cancer that affects the top layers of skin - therefore dermatological. Naturally, the area of the body is gynecological.

I wish you the best for your appointment tomorrow. I'm sure many thoughts are whirling through your mind. Write them down. Start to make a list of questions. Maybe this will help get you started:
What treatment is recommended?
Am I a candidate for surgery? If yes, what type of surgery?
What does it involve?
What is recovery like?
Will I need additional treatment(s)?
What else do I need to know but didn't think to ask?
What is the next step?

After your appointment, let me know if you wish to pursue a second opinion. I can share more about seeking a second opinion at Mayo Clinic if you're interested.

But first things first. Thinking of you for tomorrow. You got this.

Hi @lydiamae, welcome. Glad to hear your surgery was a success with clear margins. Do you have Paget's disease? Will you need any further treatment?

I was diagnosed with primary Pagets on 10 April this year and will meet the gynae oncology team on 29 April. Don't know what to expect from the first consultation, hoping for some real empathy and understanding of this disease as not much seems to have changed in the 100 years since it was first coined. I am also confused as to whether this is a dermatological or gynecological area of concern. Is there such a thing as a second opinion re treatment?

Not sure if this is helpful but I just had Mohs a week ago by Dr Mohammed Dany Virginia, Richmond. Commonwealth University. Noninvasive and 5 rounds to clear margins. Great team!