1. < Gynecologic Cancers
Profile picture for chaka67

Has anyone had Paget's disease of the vulva?

Posted by chaka67 @chaka67, Apr 18, 2023

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.

Profile picture for mrsterry0821
mrsterry0821 | @mrsterry0821 | Apr 13 6:46am

@chaka67 My mother was diagnosed with perianal pagets in 2008. Absolutely no information or support on pagets. It's craziness. They were able to remove hers with a fairly minor wound and cream as well. They said that it wouldn't be if it returned, but when and where. She stumped the doctors 10 years later with a very strange cancer presentation that they couldn't quite figure out. Ultimately, when she passed away, she had breast cancer(wasn't even in her breast, lung cancer, and what somewhat presented as lymphoma or myeloma

REPLY
1 reply
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | 6 days ago
In reply to @mrsterry0821 "@chaka67 My mother was diagnosed with perianal pagets in 2008. Absolutely no information or support on..." + (show)
Profile picture for mrsterry0821 @mrsterry0821

@chaka67 My mother was diagnosed with perianal pagets in 2008. Absolutely no information or support on pagets. It's craziness. They were able to remove hers with a fairly minor wound and cream as well. They said that it wouldn't be if it returned, but when and where. She stumped the doctors 10 years later with a very strange cancer presentation that they couldn't quite figure out. Ultimately, when she passed away, she had breast cancer(wasn't even in her breast, lung cancer, and what somewhat presented as lymphoma or myeloma

Jump to this post

@mrsterry0821, I'm sorry for your loss. Paget's work in mysterious ways. Am I understanding that pathology showed that her cancer's origin was breast cancer cells and first noticed only when metasticized to the anal region?

While the exact causes of Mammary Paget's Disease are not fully understood, it is primarily driven by specific genetic alterations and inherited risk factors. Have you had genetic testing?

REPLY
View MoreView Less
Please sign in or register to post a reply.