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 luck on Wednesday Euni, hope all goes well with your radiotherapy inspection, let me know how you get on. 
You have done well to lose 6lbs in a week , I always watch Micheal Moselys tv programmes but haven't got any of his books as yet. 
Yes we are very lucky to have the nhs and as you say it's great we can chat , I've felt so much better about things since I've been chatting to you . I did ask my consultant if she's sees many people with extramammary pagets and she said maybe one or two a year so there's not many of us ! 
Best Wishes Jacie x

Yes, We are truly rare! But I knew that as I'm sure you did, and not just because of Pagets

do you ever come to the east coast area? The sun has just come out, shining on my washing. Having been in all morning I'm going for a walk along the prom, see the sea and breathe in the wonderful air

Will let you know how Wednesday goes. I hate all the undressing part , so much easier when it was skirt weather and no pants - just laid on the couch and pulled everything up,,

X E 

Enjoy your walk and all that lovely sea air ... wonderful on a sunny afternoon . 
We have some friends who live in Norfolk , not right on the east coast but about 12 miles away. We met them on holiday many years ago and have always stayed  in touch . We do alternate year 'long weekend visits' . We always love going there as it's great to get to the coast and they love the Malvern Hills when they visit us. 
All the best for Wednesday . J x

All good news ! He always comments about me healing so quickly, then added that if hadn't done the 3 ops snd knowing I'd had radiotherapy, I would not have known, as it looks normal. Talking to my retired travelling friend today (a Retired nurse) she said the skin will never be normal entire because it has been literally burnt   But I'm pleased. He will see me twice a year for 3 yrs then yearly for another 3.

wearing real trousers is great!!

x Euni 

That's great news Euni, I'm really pleased for you .  I was thinking of you on Wednesday and hoping all went well. 
You can really enjoy wearing your proper trousers again now . Great that you only now have to go twice a year for check ups . 
I had my covid vaccine today, was very quick and very well organised.  
Jacie x
 

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

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