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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
Very typical. In fact, depending on infections, slow wound healing, how extensive the surgery, could be longer than a month. So sorry to hear about your diagnosis, but happy to communicate with another person with this diagnosis. As you are learning, no one out there who understands.
I just completed my sixth surgery May 2. Unfortunately, no clear margins, so my journey continues until/unless becomes invasive which would put me on a worse path. Sadly, no cure, no hope for research because so rare.
Good news is that some surgeries' healing time better than others, and I have returned to normal activities each time. Return to wearing skirts again while healing & carrying pillows with me everywhere.
Good luck. May I ask your geographic location? No need to be specific: North, South, Europe, etc. Thanks.
Replies to "Very typical. In fact, depending on infections, slow wound healing, how extensive the surgery, could be..."
I am soo saddened to learn of your plight!! I have had surgery for ca of the vulva but never had any problems with Padgets (?I only had to have one surgery and the cancer was eliminated. Very specific margins and a very renowned doc who did surgery. I did have to have 7 inguinal lymph nodes removed which showed no involvement!
I certainly hope that there is some help for you and that this whole nightmare will end for you.
At MD Anderson they told me they don't recommend surgery because it keeps coming back. I have used Imiquimode cream and it has not contained it. I just had 5 biopsies which were deep and waiting for the results. I just read the horrible results from radiation. I don't see much through here that gives any hope. I am added to a group of rare cancers at MD Anderson but it is just collection.
I just read that someone said that this is conected to HPV? I have never read it. I was tested and negative despite clean history and have had CATS, etc. for discovery of mets.
No story here is hopeful. You seem very positive. I live in the North midwest. I am not sure how much of this I am anxious to try when nothing is working.
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North. I wish we could communicate directly. I feel lost. Need more info. Need to talk to someone who gets it from the point of view of being diagnosed with it. Not comfortable putting too much online in this format.