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Has anyone had Paget's disease of the vulva?
Gynecologic Cancers | Last Active: Sep 27 8:18am | Replies (142)Comment receiving replies
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?
Replies to "I was diagnosed with primary Pagets on 10 April this year and will meet the gynae..."
@biancasmythe, how are you doing? How did the consultation go? Do you have a treatment plan?
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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.