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 afternoon Mariaz 
Yes it is better chatting privately on Face Time . 
I think Euni will be back from her trip next week so we can hopefully all connect then . 
Best wishes. Jacie x

Hi.  Just had mapping biopsy to see extent of Paget's. Sounds like cream is a good option.  Does the side effects keep one housebound or are there pain killers help overcome the soreness etc.

Hallo lady  number 1 here at last, calling in ladies 2, 3, and now a 4th one to join our happy band

Home a week but it's been so busy with complicated PCR tests not coming through, but the good news is I'm all clear and just done a LFT and that's clear

im in my 70s too, theoretically not likely to get Pagets at our age,  but I'm sure we are young at heart! and of course don't look it. 
how to get you into our FaceTime group I'm sure I have to do something and will work on it later today as about to go out

so pleased you have found us 

uni
 

Great to hear from you and you are free of Covid haven't been able to friend you yet will try again. Results are taking ages as path labs I've run with Covid results. 

HI - I have been having treatment for  Pagets Disease of the Vulvar and Perinal 7 years now. I did go to the doctors about 2 years before that but was constantly told I had Thrush and was only sent to see a doctor at th hospital after I went to BUPA and they wrote a letter to my GP.

I know this is a cancer support group and I have been told I do not have cancer but this is the only group I can find which mentions Pagets.

For the first 5 years I was having incisions to remove bits of skin, but for the past 2 years I have been going to have laser treatment which is very painful and  am now going to have a combination of laser and Imiquimod cream. 

I have been told that I now have three options, of either, Imoiquimod Cream, laser and Imiquimod cream, or have op to remove all the skin and have a skin graft.

Sorry this is quite a long post but it is nice to get in touch with people who know what I am talking about.

Thank you

cale

Hi,  so sorry to hear you also have Paget's of the vulva,  I had treatment of Imiquimod and it was a horrible treatment, but on biopsy afterwards was clear of Paget's waiting for my first 3 monthly follow up. Like you it was years before biopsy taken, there doesn't seem to be standard treatment, kept being told it's rare, no help from my hospital cancer services, appalling but it seems to depend on each hospital.  In touch with 3 others all in different parts of the country, different age groups, different treatment but their hospitals did treat them with respect and carried out tests to check no other issues. My hospital is in Devon.  Luckily my GP was very supportive.  I suffered from the majority of side effects from Imiquimod which I finished end April, only now I feel the side effects have worn off.  There is an option on this site to private message,  we can do that if you want to.  I'm now in my 70s and unfortunately have to rely on the National Health Service.  You can ask for a second opinion on NHS though, best to do your research first of which hospital has had cases of Paget's of the vulva as no National care pathway in UK.

Imiquimod treatment is used for basal cell carcinoma !!!  And Paget's they say is not cancer !!!

Hi sorry to hear that you have been having treatment for Pagets for 7 years , it's a long time. The laser treatment sounds very painful .

I was diagnosed with pagets of the vulva in January 2021 but did not have laser treatment or Imiquimod cream. I went to my doctors after spotting a strange skin patch,  she then sent me to a dermatologist who referrred me for a punch biopsy which came back as pagets. I had the skin patch surgically removed in hospital. When it was analysed it contained cancer cells so I then had another operation to remove all the lymph nodes in my right groin in case the cancer had spread , thankfully it hadn't .  
I now go for 3 monthly check ups and so far it hasn't come back, it's now 15months since I had the skin removed. 

I am one of the 3 people that the other lady who replied to you is in touch with. It really helps to have a good support group with others who have also had pagets . As she said we are all different ages and had different treatments. I am in my 60's.
We now talk to each other privately and you would be welcome to join us if you would like to.  
Best wishes 

Jacie 

Hallo Loel

I think you have already had messages from the other people in our group. Jacqui, and Maraiz  and I am Uni. I was the first one to come on this group since 2011 and I waited a long time for someone to join me. And now there are four of us. I too was told that it was thrush then lichen sclerosis  then on going to hospital it was both together. However after 3 biopsies it was definitely Pagets and I had my first operation and that showed just a very few cels were cancer.  Several months later I was aware that some parts did not feel right and again I had another operation adjoining the first one. Within 18 months I had another operation which included half my clitoris being removed! Yrs extremely sensitive with 10 times more nerve endings there than anywhere else on females or male parts. By this stage it was decided that they could not keep removing skin otherwise it would be grafts. I then had radiotherapy, 15 sessions.

this was 2 years ago in the first lock down and as walking was painful I spent a lot of time indoors. I'm delighted to say all is good now and I'm checked on twice a year for 6 years.

I had a wonderful Spanish surgeon and my own cancer nurse. It's like seeing old friends when I go back he knows that if I feel some isn't right then I'm looked at within a week, he trusts my judgment 

on asking him if he had had any other patience with Pagets he said during his training he had one lady and it was all over her buttocks and down her thighs. Whether this was in Spain or in England I don't know. And to this day I am still the only one at this university hospital in east anglia  with this complaint. I'm now in my late 70s, almost too old to have it as it's usually around 60 or so that it's most common best wishes

Uni

I am intrigued by your laser treatment as I have only heard of this for eyes 

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 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.