Hi 

I was diagnosed with pagets disease of the vulva

This week cried for hours.

Don't know whats going to happen as they say its so rare. Never seen it before so how are we supposed to cope. Got to find out treatment on Wednesday so up tight can't sleep but trying to get my head round it.

Hope you can give me some answers. mine is non invasive 

Take care 

Hi 

ive been diagnosed with Paget’s as well. It’s taken a year to get it diagnosed. 

I wondered how you are getting on? I’m hoping to start treatment soon. 

I’m finding it hard to find strength and positivity. And there seems to be so little out there  to give me hope and not so fearful.

thanks shars

That's great news! Always a releif to get the all clear.  :  )

Was your paget's surgically removed? (Sorry I may have missed this in your previous chat) 

Fingers cross it stays away. x

Yes Shars had surgery. Never want to have that again!!  Still healing and uncomfortable X Hope you are doing well x

Pleased you had the all clear.  I'm due for another follow up soon.   Keep in touch if you need support.

Wishing you a speedy recovery. Do get in touch if you ever have any questions or want to chat.

We are all currently clear of Pagets but still check in with each other via facetime just to see how everyone is doing - it's been such a great support.

x

Hi Bbear 

So pleased to hear that your results were good news . 

Hope you make a good recovery after your surgery. 
I had mine surgically removed so I know what you're going through. It does take quite a while for it all to heal , but you'll get there and hopefully that will be the end of it . 
I had mine removed in March 2021 and so far it hasn't returned , fingers crossed . 

Keep in touch x

Hi there,

Is there Facebook chat group asi have a few questions I'd rather not post here!!  Thank you all for your support. 

Bbear aka Linda 

Hi 

I think to be able to contact each other privately and to go on from there we need to add each other as a friend on this site.

Jacie 

Hi Bbear300

Hope you are ok and healing well after your surgery. 
I have tried to add you as a friend on this site but cannot find the link to be able to do this. 

Jacie 

Hi jacie,

We have a guide here on how to add other users as friends on the forum. Once you've done that, you can message in private.

I hope this helps.

All the best,

Ben
Cancer Chat Moderator

Hello Bbear300 I'm the originator of our group with Jackie and the others so welcome to our gang.

 I hope to see you soon on a chat with us.  I eventually had 3 ops then radiotherapy in 2020  alls good and I'm checked on twice yearly for 6 years  I see my lovely surgeon next week

best wishes Euni 

Hello Bbear300 I'm the originator of our group with Jackie and the others so welcome to our gang.

 I hope to see you soon on a chat with us.  I eventually had 3 ops then radiotherapy in 2020  alls good and I'm checked on twice yearly for 6 years  I see my lovely surgeon next week

best wishes Euni 

Thanks Euni, just let me know when the next chat is and I will do my best to join, would be lovely to see you all x 

Hello. It's next Tuesday 10 am. I do the calling in . Has Jackie got your details? we had a face time chat this afternoon and if she does have them I can get them from her. Leave it with me and be prepared for the big reveal! See you next week

Euni 

Hi.

 Biopsy revealed recurrence.  Waiting on surgery.   Hoping surgery more successful than Imiquimod.    will get in touch for FaceTime group chat once surgery date known.   
 

seeing Consultant middle June to plan treatment 

Oh dear. Contact us in the usual way and we can have a group chat.  It's easier if you do it direct to me or Jackie xxEuni

Hi Maria, rubbish news but hopefully the surgery will be straight forward. Do keep in touch and if you need a chat please get in touch. Love Linda x