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Rare Cancer: Gynecologic Extramammary Paget's Disease

Gynecologic Cancers | Last Active: Oct 24 10:43am | Replies (76)
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@worried123

Thanks for the reference to myEmpd.com. I've read everything I found on googlescholar. I was diagnosed in Sept 23, had surgery Oct (one lymph node involved), did radiation with chemo (cisplatin) Dec-Jan 24. Having PET/CT tomorrow. One oncologist is suggesting additional chemo and one is suggesting immunotherapy. Surgeon said no to more chemo. First radiologist said yes to chemo. Second radiologist says no evidence more chemo will help and if i do anything, it should be immunotherapy. Docs are from excellent hospitals - Cedars Sinai and UCLA - just too little research. Anyone doing immunotherapy?

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Replies to "Thanks for the reference to myEmpd.com. I've read everything I found on googlescholar. I was diagnosed..."
Colleen Young, Connect Director | @colleenyoung | Mar 10 8:39pm

Hi @worried123, that is so confusing when you get differing opinions from experts. I'm tagging @victoria15 @ameliae @chaka67 @pugpeople @catlazz @blueeyedkygirl50 @moffitt to make sure they saw your post and can share the treatments they had.

Worried123, have you decided to go ahead with chemo or immunotherapy? If yes, what regimen are you getting? How are you doing?

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nomikins | @nomikins | Jun 2 2:12am

Hello Worried. Thank you for sharing your story. Can you let us know what kind of Immunotherapy you are trying? How has it been so far? Thank you and wishing you a speedy and full recovery!

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