Has anyone had Paget's disease of the vulva?

I was diagnosed with invasive Paget’s disease of the vulva about a month ago. I had a radical vulvectomy and sentinel lymph nodes removed from both the right and left sides one week ago. I’ve had a very rough week.
I came to this forum to see if anyone else has had this and am glad I did as I see several posters.
I am seeing a gynecologic oncologist who has been practicing for 20 years and feel comfortable with him.
It does me good to know there are other women out there with the same disease.
Chaka67 thank you for your openness and honesty.

As I have been sharing info about Paget's of vulva in private messaging with another member, I have realized that there is so much I have learned over nearly 10 years and 6 vulva surgeries that I would like to share with anyone with a gynecological cancer. So here goes:
1. Do not be timid or ashamed. I would gladly share everything I know with anyone who would listen. If people are unaware, especially medical folks, you have to educate them, & be your own advocate. Always take someone with you to appointments if you can & take notes & ask questions! And do your own research! We are blessed to be living in the age of the internet. Use it.
2. There is a medication called imiquimod cream to use in lieu of vulva surgery for Paget's, for those who opt to not have surgery. Some folks have had good luck with that. I tried it for awhile & found it to be difficult to tolerate: burning & itching. But I might consider it again when I'm told I need another surgery.
3. Paget's vulva surgery is not a "once & done" surgery like appendix removal. For no rhyme or reason, it continues to return. So consider carefully the big picture of how your choices effect the quality of your remaining years. The profile for getting Paget's cancer is white, 65-75 yr, female. Always exceptions, of course.
For example, a male oncologist wanted to perform a "radical" vulvectomy, which included removing my clitoris, & he could "reconstruct" that for me if I wanted. I sought a 2nd opinion. I know it is just a body part, and if I thought it would save my life, I suppose I would consent, but this surgery is already mutilating, & so I prefer to keep as much of my body in tact while I can. And there are no studies I a have found that support any more success in eliminating Paget's with a radical rather than a partial or even a simple vulvectomy. I don't regret that decision.
Thanks for listening. Hope some of this is relevant to someone.

I will message you tomorrow morning. I did not realize that you were unable to initiate a pm.
I know your anxiety is sky high, but hopefully you will benefit from knowing I have recovered 6 times & continue to live a busy life, fairly normally enjoying friends & family & happy times.

Thank you. My surgery is next week. I hope it won't be too long before I can do pm's. I will also share online in general, but I really need to just talk to someone outside this. So I hope chaka67 will message me.

Hi Ameliae,
There is a brief period where new members cannot initiate a private message conversation. We do this to deter spammers and keep the community safe. You will be able to send a private message in a few days. You can however receive and reply to private messages sent to you by established members like @chaka67

Naturally the value in an online community are the open discussions because they not only help the people actively participating in them, but also the people reading them and learning from them. I hope you'll both continue to share your journey here.

There is no word compose. I'm so frustrated

Click on the little envelope & then look for word "compose". It has a little pen on it, but just use the word compose.
I understand your frustration. When is your surgery scheduled? I am online now so I can answer your questions.

No pen that I can see.
Frustrating as I haven't found anyone or anywhere else that this is discussed and that someone understands.

I wish I had a five year old grandchild. I got the first part of the instructions for PM's you … but couldn't find a 'pen' an place to go for the second step. Nor (given my anxiety level) am I remembering how to get to the help center. I think I even put my reply in the wrong place. Sorry.

I wish I had a five year old grandchild. I got the first part of the instructions for PM's you ... but couldn't find a 'pen' an place to go for the second step. Nor (given my anxiety level) am I remembering how to get to the help center.