pagets disease of the vulva

l am looking to talk to anyone that has or is going through pagets disease of the vulva

Parents
  • I have been diagnosed with this rare disease, at present precancerous and will see surgeon in 2 weeks 

    There is little info on line except from USA which I understand is differently treated to UK

    how are you and where are you at in your treatment. Best wishes Euni

     

  • Hi wonderful to hear from someone else. I had some skin removed in April which prioved to have just 2 cells that were cancerous. Mine was towards the front and one side only which is an easier area to do as there is spare skin. I had to keep the area well ventilated ! So no pants and loose skirts, but it was summer time so no problem and in fact I quite liked it. I healed quickly but in September an adjectival area didn't feel right so I had that done and it was a much smaller area and proved to be clear of cancer. I am now awaiting another one at the end of April. Each op is smaller than the last and I get over it quicker. However normal trousers are out as they are too tight and I alternate between skirts and tights and track bottom or leggings. A whole new winter wardrobe. The ops are now totally healed and feel just like they should, not painful and not aware of them

    in the UK it seems surgical mainly to remove the skin before it become cancerous. In America they seem to go straight for the cream.  How old are you? I will be 76 next week

    keep in tough and let me know how you get on.  I have told so many people and all the ladies have been pleased to know about it and to watch out for themselves .  One is being investigated for it soon  

     

  • Good afternoon Jacie now and I've been for a very blowy walk on the marshes and finished up on the sea front where all the beach huts are 

    Bravery doesn't come into it, it has to be done. The last one was the worst as it involved my clitoris( more nerve endings there than anywhere else in the body). I've now got half a one! And I'm zipped up the front,,  the mind boggles  how does a surgeon manage that, but we both discussed it before hand  I literally had to put myself in his hands ha ha

    for about 10 days after the op it feels as if your stitches are tightening. In fact its body pulling the two cut edges together to mend themselves.   My cure for constipation is conference pears! I've told friends and they say the same .
     It's  about time our request to be "friends" was completed. Perhaps we should both contact them and see if we can get it completed. I will do it straight away 

    happy healing

    Euni

  • Hello [@Euni]‍ and [@jacie]‍ 

    I read your post ladies and can see that you're trying to connect so that you can private message. 

    We've some "how to" guides here about requesting a friend and here about accepting a friend request.

    Hopefully, this will help the two of you to connect so you can chat. 

    Best wishes, 
    Jenn
    Cancer Chat moderator  

  • Thank you for replying. I'm the one who made the request. My would be friend Jacie did hear back but nothing then happened.  You can see we are getting along very well and now she has had an operation, I feel personal support is so important

    would be so grateful if you come finalaise the "friendship"

    best wishes Euni

  • Hello Euni. 

    Unfortunately, the Moderator team has no access to approve private messaging between 2 members. Can I suggest that Jacie requests to add you as a friend so that you can then accept. 

    If you try this and it doesn't work please do let us know so that we can see if there are any technical gremlins that need looking at. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Ok Jacie. We may have the solution to our "friendship" 

    you have to request me to be your friend too 

    off you go, get typing

    xxE

  • Hi Euni , will do , I'll see what I can do right now . J x

  • I've requested you as a friend and also replied to your 'test' message J x 

  • I saw your message and have replied. I shall be waiting for you to reply then I can give you my number. Xx

  • Hi Euni!

     

    I'm so sorry for my long silence! I havent received any of your messages and just thought to check to see how you were doing and have seen that we have become a trio!

    I have you been? I'm coming to the last few weeks of my cream treatment - it's been a long hard slog hoping I shall begin to feel more like myself once I stop.

    I won't see my consultant until the end of June.  I think he'll only be taking a single biopsy and not doing the mapping he didn't seem too certain.... I wish he was more like your lovely consultant. He could definately use some trainig on his interpersonal skills! Thankfully if I have concerns I have to go through my nurse has the joy of dealing with him. ;  )

    I skimmed some of the previous messages I'm so glad your recent check up was all clear!

    Your lovely walks along the seafront sound lovely.  I'm looking forward to being able to exercise and do more things with the kids again I feel so guilty at not being able to do things and be with them more but hopefully the summer is upon us (once the rain stops - Have you had lots of rain with you too? It seems endless in London) I'll be able to enjoy it.

    Hope to hear from you soon.  I will check here rather than wait for an update (I've learnt from my lesson now!  :  )

    Shars x

     

     

Reply
  • Hi Euni!

     

    I'm so sorry for my long silence! I havent received any of your messages and just thought to check to see how you were doing and have seen that we have become a trio!

    I have you been? I'm coming to the last few weeks of my cream treatment - it's been a long hard slog hoping I shall begin to feel more like myself once I stop.

    I won't see my consultant until the end of June.  I think he'll only be taking a single biopsy and not doing the mapping he didn't seem too certain.... I wish he was more like your lovely consultant. He could definately use some trainig on his interpersonal skills! Thankfully if I have concerns I have to go through my nurse has the joy of dealing with him. ;  )

    I skimmed some of the previous messages I'm so glad your recent check up was all clear!

    Your lovely walks along the seafront sound lovely.  I'm looking forward to being able to exercise and do more things with the kids again I feel so guilty at not being able to do things and be with them more but hopefully the summer is upon us (once the rain stops - Have you had lots of rain with you too? It seems endless in London) I'll be able to enjoy it.

    Hope to hear from you soon.  I will check here rather than wait for an update (I've learnt from my lesson now!  :  )

    Shars x

     

     

Children
  • Hello stranger, wonderful to hear from, not since way before Christmas 

    we are not 3 but 4 and I can now  talk privately with them, Jackie has iPhone/pad so we FaceTime but Skype is possible as well  they both have procedures coming up so will need all the support we can give them

    im surprised my messages did not get through to you, and I began to think the worst with Covid around. But hey your kicking life and we are again in communication 

    woild you like to set up the talking privately part, not worry if not, but if yes I will start the ball rolling. Just to warn you  It's not always straight forward 

    very best wishes Euni 

  • Hi Euni,

    Yes that would be great! Let me know if I need to do anything.

    I was alerted to the message you've just sent but not the previous ones.  I only thought to check as i remember this happened previously and low and behold there were lots of messages and your messages with one of the other ladies.

    It's nice that we've all found a way to connect and support each other.  I hope their procedures are successful. 

    I have an iphone/ipad too if that makes it easier.

    Shars x

     

  • Hi Shars. Where are you? You have disappeared again I hope you are getting the notifications to let you know I am trying to contact you. I have sent a private message with my contact details. I'm having great chats person to person with Jacki

    xEuni

  • Hi Euni!

    I've not been getting any alerts! I got this one as i think you replied to my message. I've just sent you a message!

    Look forward to hearing from you soon

    Shars x

  • I have replied as a private message! XE