← Return to Rare Cancer: Gynecologic Extramammary Paget's Disease

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@colleenyoung

@catlazz, it's high time I check in with you. How did surgery go? I'm hoping the scoping of the bladder and anus didn't reveal any unwanted surprises. How is the recovery?

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Replies to "@catlazz, it's high time I check in with you. How did surgery go? I'm hoping the..."

Thanks so much for the check in! It’s been 2 weeks since surgery and all is ok. There’s been very little pain which is saying a lot for 30+ stitches in my vulva:) Doc just messaged me yesterday to say there was no underlying cancer according to pathology but that there are multiple places where the margins aren’t clean. No cancer anywhere else so far!! This is a really frustrating cancer because the only treatment is more surgeries. Doc said even if it spread and the new spread was treated with radiation/chemo, the Paget’s of the vulva would not respond. So it seems I’ll always have an active cancer of the vulva and I’ll be checked every 3 months for the next few years. But, as I’ll tell anyone who’ll listen, I am actually lucky because I know I have cancer, vs so many who have it and don’t know. 🙂