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

Hi Cale,

It sounds like you've had a really tough few years!  

I have a similar story in that my road to diognosis was long, several months of going back to the doctors who couldn't really see anything and didn't suspect anything sinnister (the number of times I heard that!). 

Eventually they did a single punch biopsy which came back as non-invasive pagets disease. At this stage they put me on the cancer pathway (all very terrifying!) and reffered me to the hospital.  They were very thorough and did every test possible and took multiple biopsies - 13 I think and all but 1 came back as positive for pagets!   I only ever had an itch in one place.

I am in my early 40s but was 39 when I first experienced symptoms, so don't really tick the 'pagets' boxes.  

They gave me the option of surgery or immiquimod.  As mine was non-invasive - they recommended the cream.  It was really hard going the first time I used it for 16 weeks.  There was very little guidance from my consultant, GP, macmillan nurse and the web - It's just so rare - and you do feel really alone!

My paget's returned within a few months ( I think I didn't apply the cream correctly) this time round I did it for 24 months!

Thankfully, during my treatment Euni found me!  Then our group of 2 become 4.  :  ) It's made such a difference to have them as support and share our stories, they're such lovely ladies... I can see they've all got in touch with you already. It would be lovely to have you join our chats.

Best Wishes,

Shars x

Hi again Cale

had my 3 month check up,  first one, all clear but still uncomfortable in area of treatment.  If you want more in depth information about how the Imiquimod treatment affects one, do ask I was housebound a lot of the time.  
shars1 and I can help you with how to help alleviate the painful affects of the cream.  I used it for 10 weeks in total with 2 breaks in treatment.

good luck with whichever treatment you choose.

Hi there, so please to find to this group. I have just been diagnosed and had surgery 2 weeks ago. I feel so in the dark.

Reading your posts I realise there is so much I don't know . I had my treatment privately through work but think maybe I should have stayed with NHS although the consultant was excellent. No discharge advice, have results on Friday. Never heard of mapping. Will ask Dr re this, wishing you all well xx 

Depends which county health authority you live in as to treatment also what initial biopsy shows

The initial biopsy was non invasive but will get full results tomorrow x 

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 

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

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