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Has anyone had Paget's disease of the vulva?

Gynecologic Cancers | Last Active: Sep 27 8:18am | Replies (142)
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@lrcg

I need to find a Dr. that I trust that does MOH's. I didnt get this the first time. I have also never been offered a CT Scan to look for more. My Gyn/Onc at UW in Washington told me that was all that could be done. It is so sad for me and others. I did find this website just last week and thank you. I have some calls into different Drs. Nothing back yet. Thank you, Thank you, for your information and kind words. Healing takes a while hope your doing okay. The group is on FB? I dont have FB but would be willing to get it to be included in the group. Thank you Victoria! I hope you are clear as well and if you are the praying type I will pray for you. LRCG

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Replies to "I need to find a Dr. that I trust that does MOH's. I didnt get this..."
victoria15 | @victoria15 | Jan 23 4:02pm

First, let me say that YES, I am the praying type just as I know that God directed my every move on this, so your prayers are welcomed!

It is a secret facebook group. If you scroll to the bottom of myempd.com, it will help you get in. Of course, you first need a fb account, but it doesn’t mean you have to use it for more than the board. Way more help there than here!
Are you in Washington? I am in Virginia. Try this: look at medifind.com
Put in Extramammary pagets disease under condition you are looking for and your location. That is how I found the doctor who did my moh’s. Otherwise, I would have had a partial vulvectomy without scouting biopsies, etc. and no CT scan to check for malignancies. See if you can find a doctor with experience in this. I am healing well! Seeing the doctor tomorrow.
Saying a prayer for you now, friend!
Victoria

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