Hi Linda,

Sorry cant identify with your condition as i have BC but would like to wish you the best of luck with your treatment.I hope it is a success.

Rose xxx

Thanks for your message. got my date today for surgery in a fortnight. im not having any luck in finding anybody else with this flamin' disease. ive been told

its rare but im sure im not the only person in the country who has it!!! never mind... onwards and upwards.... hope your treatment is going well. x

Linda,

I'm glad you came back because after your first post I googled Pagets of the Vulva in an attempt to find out more and there is virtually no information available....

Just a thought but is your surgeon able to put you in touch with anyone else that's gone through this? Or maybe your GP may be able to talk to other GP's or friends who are involved in the medical profession who may be aware of someone in the same boat....I can see that it would be really helpful for you to have contact with someone going through the same procedures and concerns.

My thoughts are with you - let us know how you get on with your surgery

Dizzie xx

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 again shars1. I have just read your first post. Please don't be fearful as it is not life threatening. The surgery was not that bad, for me, but mine was not very extensive. I had been treated for over 3 years for lichen sclerosis which although not curable is contolable and mine was just getting worse so biopsies were taken and then the ops as I mentioned In my other post.  It's a bit painful afterwards but that's to be expected. Try to be positive and I am so grateful for the NHS best wishes

Hi,

My mum was diagnosed with padgets of the Vulvar 18 years ago and like yourselves, not known anyone else who has been diagnosed with it. Do you know of any social media groups that she could join to talk to someone about it? It's changed this time and she's awaiting biopsy results. There is a strong chance she'll need major surgery, which of course, she is terrified about. I can only talk to her about it to a certain degree as I don't know what she's actually going through. 

Angharad 

Hi Angharad.

I have had pagets disease for 2 years and they suggested I had  surgery.

I declined it as they said it would be repeated so many times.

Plus reconstruction surgery. I went down the route of a cream that I had heard about on a web site. Imlquirimod cream.

They were reluctant at the beginning but after a while Started  the course for three months then another three months with a brake in between 

It was sore painful and uncomfortable but I stuck with it now in for 12 months I have no sign of the pagets. 

I am monitored every four months and fingers crossed still ok  if after 5 years I will be free of it.

Hope this helps There is hope and a light at the end

Keep safe 

Mazdamad

My mums had this cream a couple of times too. She said the exact same as you, really uncomfortable and painful. 

Thank you so much for writing back. I just want her to have someone to talk to who can relate to what she's actually going through. 

Xx

Hello Angharad 

where to begin! I have had Pagetts disease for 2  years, after a being treated for Lichen Sclerosis for ages without success.  My  treatment was very different. After the biopsies I had an operation which went very well but then three months later I knew something was wrong and I had another operation. And then within the year a third operation. The first operation showed just two cells of cancer, subsequent ones had no cancer cells but lots of Pagets

. Then last summer I had radiotherapy. The complete area from back passage to the front. It was extremely painful but now healed up and I am checked on twice a year for three years then once a year for three more years.

I think the treatment varies according to your surgeon, your age, and  where about it is exactly.  From the middle going forward there is excess skin which can be used, but going backwards there isn't any and the options are more limited. Mine were all forward but with so many Paget cells he decided radiotherapy was best

there is another sufferer on this site and we now talk privately  - no holds or details barred! I'm very happy to talk with you or your mum who is probably  more my age - in her 70s

best wishes
I Euni