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.

foster14 | @foster14 | Oct 20 6:39pm

pagets of the vulva is so rare that not even my primary care dr knew what it was. Its frustrating because there isn't anyone you can really talk to about it. My Dr is the only Dr in Portland Or and is great but he is retiring in January. So I just don't know what will happen now.

foster14 | @foster14 | Oct 18 9:48am

In reply to @andwho "Is pagets disease the same as lichen sclerosis? What’s the difference? Thanks!" + (show)

I don't think it is the same...Pagets is a chronic diease,and is pretty much pre cancer.

andwho | @andwho | Oct 17 9:38pm

Is pagets disease the same as lichen sclerosis? What’s the difference?
Thanks!

andwho | @andwho | Oct 17 9:35pm

In reply to @foster14 "Yes I have had it for 6 years. Surgery, all went well then it returned a..." + (show)

@foster14

foster14 | @foster14 | Oct 16 10:07am

Yes I have had it for 6 years. Surgery, all went well then it returned a about 2 years ago. Since then it just won't stop growing...Had 3 more surgeries and the pagets is coming from behold the clitoris. The surgery is in November and my Dr wants to remove the clitoris and get it all. I'm considering this because I'm tired of being in pain all the time. And unfortunately I am also incontinent so the urine irritates it all the time. I'm trying to find an OAB medication to help with that but since I'm 71 some medications can cause memory loss and I don't need any help with memory loss. Has anyone had their clitoris removed and was it very painful?

ichinnaya | @ichinnaya | Oct 4 12:09pm

In reply to @leg51 "Good questions! I use the imiquimod at night. My doctor suggested applying lidocaine to the Paget’s..." + (show)

@leg51
Thank you so much for sharing. My doctor did not suggest that but I will try your suggestion for sure.

I am so sorry that all of us have to go through this with not much support or guidance from the medical community. Most doctors haven’t even heard of or have patients with our condition.
Good luck to all of us!
Thanks again for sharing your suggestions.

leg51 | @leg51 | Oct 1 6:38am

Good questions! I use the imiquimod at night. My doctor suggested applying lidocaine to the Paget’s areas 30 minutes before applying the imiquimod to numb the area. I then apply the imiquimod sparingly with a Q-Tip. I use Aquafore or Vaseline to protect the healthy tissue. Wash it all off in the morning.

ichinnaya | @ichinnaya | Sep 30 3:27pm

Thanks for the reply. How did you protect the non paget areas? Did you use anything for the pain or irritation? Sorry to ask so many questions. There is limited info for vaginal application. Thanks again

leg51 | @leg51 | Sep 30 6:23am

In reply to @ichinnaya "@susanpagets Hi I posted in the forum about getting some info on Imiquimod cream. I also..." + (show)

@ichinnaya
It’s definitely worth trying imiquimod. I have used it twice. The first time I had to discontinue the 12-week treatment at 6 weeks due to the severe irritation it caused, but it did reduce the Paget’s. The second time I tolerated it far better, and the Paget’s was not detectable. I know it will recur, but I hope I can keep it controlled with the cream. Good luck!

ameliae | @ameliae | Sep 30 5:37am

In reply to @chaka67 "Just an update on my Paget's journey: have had 7 surgeries since 2013, last being December..." + (show)

@chaka67
I find a small amount of THC 125.125 mg transdermal cannabis cream (1.1) helps a lot with itching. If prescribed (in canada at any rate) it is tax deductible.