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