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Has anyone had Paget's disease of the vulva?
I am about to have my 6th vulva surgery for Paget's of the vulva in less than 10 years. That means for about a month after surgery I cannot drive, sit or walk, & I am the my husband's caregiver.
I also had a mastectomy 10 years ago, but was told they were unrelated. Also unrelated is any support for Paget's disease. They have marches for breast cancer. Yet I have never met someone with Paget's. Even this message box underlines the word Paget's as if I am misspelling the word!!
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@chaka67, being diagnosed with a rare cancer can be very lonely. @catlazz and @moffitt both have gynecologic extramammary Paget's disease and have shared here https://connect.mayoclinic.org/discussion/rare-cancer-1/
I can't imagine the challenges your face with the 6 th surgery and also caring for your husband. Am I understanding that you were diagnosed with both Paget's disease of the vulva and breast cancer 10 years ago? And at that time they determined that the breast cancer was not Paget's?
Yes. The breast cancer was NOT Paget's. And yes, breast cancer, with mastectomy was diagnosed in April 2013, & Paget's with "simple vulvectomy" was December 2013. Not a good year! Thankfully breast cancer not recurring; not so with Paget's.
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1 ReactionI am trying to find support having been recently diagnosed with Paget's Disease of the vulva. Upcoming surgery. Can't find anyone who has had it, who understands, and who can help. Seeing the above – unable to sit, drive, walk for a month! Is that typical?
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.
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4 ReactionsNorth. 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.
@ameliae I have a suggestion for communicating privately with another member of Mayo Clinic Connect.
At the top right of your screen you will see three icons. The icon in the middle is an envelope. Click on the envelope and you will be taken to the private messaging (PM) screen. There you can write to any member of Mayo Clinic Connect and your communication will be private between the two of you. If you eventually wish to communicate by sharing your personal information such as email or mobile phone this is the place to do it.
Does this help?
Oh gosh, yes! Thank you!
I clicked on the envelope and it comes up blank. How do I reach the person I wish to communicate with?
@ameliae when you open the PM page there should be a Compose button (with a pen icon) to the right of your screen. When you click on the Compose button you will get another screen where you can fill in the screen name of the person you want to write to. Just make sure before you send that you have typed the screen name correctly so your message goes to the person you intended.
If you continue to have difficulty with PM then please go to Help Center which is just below the icons on top right of your screen.
Sounds good to me. After we communicate a bit, we can share more info to communicate directly. I am outside of Atlanta.