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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
Was it non-invasive (did you know about it?) for a long time? I couldn't even remember the term for skin grafts as it is so awful - so huge - if I were to go that route. Also --- so wherever you are, the surgeon knows about it and is even a specialist! I'm envious 😉 Though my surgeons are good, I don't think they have experience with it.. .
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I started having symptoms in late April of this year. My GP thought it might be a bacterial infection and treated with a 10 day course of antibiotics. When that didn’t help she referred me to a gynecologist. It took 9 weeks to get an appointment! He did a biopsy and it cam back invasive Pagets. He then referred me to a gynecologic oncologist and I saw him within a week. I then had 2 more biopsies from different areas and all showed invasive Pagets. I was scheduled for surgery 3 weeks later. A long way of saying I have had it for approximately 6 months total.
It hasn’t spread, that they can see, to the bladder, colon or kidneys. I will need to have a colonoscopy and other tests to see if it is inside any of those organs. I have had regular colonoscopies for years and nothing has ever shown up. I’m 67.