pagets disease of the vulva

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

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  • 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  

     

  • I forgot to tell you Jacie  that I wrote to this site and asked if it was possible to exchange contact details privately. I had an acknowledgement but no answer. I felt we had a lot in common. I'm not hopeful 

    I had no ill effects from my jab but my daughter and grand daughter certainly did. They are both asthmatic and grand daughter has had Covid and was really poorly with long lasting effects

    having put on a few lbs since Christmas I decided to try the fast 800 diet. It worked a treat and I lost 6lbs in the first week. It suits me so well and have no problems keeping to the principals and adding a bit more as I don't want to lose any more, just maintain. My daughter had been struggling for a month without success and within 2 days lost 3lbs. Can recommend it and it's healthy

    best wishes and chat again soon X E 

  • Hello Euni, 

    I am so sorry that you never received a reply - it seems there was a little mix up as your query was sent to our Supporter Services department who then forwarded it on to us. Really sorry about that. It's great that you would like to talk privately to jacie and that you two have so much in common. Rest assured you will soon be able to communicate privately. Before you can privately message someone else, you will need to add them as a friend. You can find out how to do that on this page. 

    There are more handy tips about private messaging on the help using the forum section of Cancer Chat which you can find here.

    I hope this will help you get started on private messaging. Don't hesitate to contact us if there is anything else we can help with. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • It would be nice to communicate via a private email. It probably won't be aloud but let me know if you hear anymore.

    I'm feeling ok so far today after my covid vaccine. Sorry to hear that your daughter and grand daughter had ill effects after it. We have friends who didn't feel great afterwards, it seems to effect everyone differently and I guess with your family having asthma that didnt help .

    The 800 fast diet sounds very good . I lost a stone last year just by eating sensibly and doing a lot of walking, im feeling so much better for it as all my clothes fit nicely now. I always make a point of weighing myself every week now and that helps to keep it in check!

    Have a good day and will be in touch again soon . Jx

  • Well Jacie it looks as if we can communicate privately. I have stared the ball roling and you should be hearing soon!

    Euni x

  • Hi Shars long time since I heard from you! Getting concerned as you had 6 months of using the cream ahead of you. I have requested you as a friend so that we can talk privately - you should be getting an email through

    i hope your problem with these messages isn't because you have forgotten your password again

    woukd really like to hear from you again and to know how yours is progressing 

    all the best Euni

  • Thats good news. Ive just seen the response from the moderator, will wait to hear .

    J x

  • Hi Euni 

    Just heard from consultant that  all my CT scan results are fine , what a relief , feeling SO pleased . 
    Also got my op date , it's next Tuesday 23rd March !. 
    Its a gorgeous sunny spring day here, going for my walk soon , lovely to see all the lambs in the fields . 
    Hope all well with you .

    J x 
     

  • First hurdle over, what a relief it is. I always stayed in the first night no matter what time the op was.

    it's rained all day, a fine miserablness. We used to have a garage for car repairs in town but they were forced to move to a near by industrial estate ( everyone wrote and complained as it was easy to walk to, to collect the car) my friend took hers in yesterday and found the walk back quite dangerous with no pavements on the country road. I have just taken her there and we decided this what we will have to do, help each other 

    live been doing a jigsaw puzzle all based on those of gin and variations on the theme.  Very good on an aweful day

    Inwonder how long it takes to become "friends"?

    xEuni

  • Yes what a relief it is for sure ! I have to be at the hospital at 07.30 next Tuesday and apparently first on the list to be done ( but guess that could change) . The hospital I have to go to is just over an hour away , not my usual local hospital which is only 20 minutes away, so a very early start next Tuesday . 
     
    Oh it sounds a miserable day where you are today, I'll send some sunshine your way. That's a good idea to take each other when you need the garage , it's not great  walking on country road with no pavements .

    I love jigsaw puzzles , did quite a lot on the first lockdown, only do those with 500 pieces. 

    Yes have been wondering when we'll hear about becoming "friends ". !

    J x 

     

     

  • Hi Jacie and [@Euni]‍, 

    If you've managed to find each other via your friends list on your profile and sent a request to each other, all you need to do is accept the request and you'll be able to start messaging each other :)

    I know Mod Lucie shared the link that explains how to add friends already, but I'll just include it here as well if you need a reminder on what to do.

    Kind regards,

    Steph, Cancer Chat Moderator

Reply
  • Hi Jacie and [@Euni]‍, 

    If you've managed to find each other via your friends list on your profile and sent a request to each other, all you need to do is accept the request and you'll be able to start messaging each other :)

    I know Mod Lucie shared the link that explains how to add friends already, but I'll just include it here as well if you need a reminder on what to do.

    Kind regards,

    Steph, Cancer Chat Moderator

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