Has anyone had Paget's disease of the vulva?

Posted by chaka67 @chaka67, Apr 18 1:11pm

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!!

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Colleen Young, Connect Director | @colleenyoung | Apr 30 2:48pm

@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?

chaka67 | @chaka67 | Apr 30 10:05pm

In reply to @colleenyoung "@chaka67, being diagnosed with a rare cancer can be very lonely. @catlazz and @moffitt both have..." + (show)

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.