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

Good luck xx

Hi Bbear 300

Sorry to hear you have been diagnosed with Paget's disease of the vulva . Hope your surgery went well. 
I'm Jacie and expect you have read my latest post above which explains my pagets story . 
I have never had any mapping done .
I firstly had a punch biopsy when it was unknown what I had, this came back as Paget's disease of the vulva . Like you I'd never heard of it before and I was so glad to find this website and the great support I got from the other members . I'm sure you will hear from them too .
Keep in touch with any questions or advice you might need . 
Good luck with your results on Friday . 
Best wishes Jacie . 

Thank you ladies, everything crossed for tomorrow xx

Hi Bbear 

Sorry to hear your diagnosis.  I felt much the same there's so little out there, and as it's so rare even the consultants experience and knowlege is relatively limited and I think this also effects your care pathway options.

This group has been so supportive and it's wonderful to have a group of ladies to chat with.

Do ask us anything you want. I know I had so many questions.

Hope your surgery went well.

Shars x

Well good news. Histology showed only precancerous cells and clear borders. 6 month review. I have opted to go back to NHS as although consultant great surrounding support nil. Hopefully back to work soon!!  I realise it may rear it's ugly head again but for now...... Hope you are all well xx 

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 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