I have been diagnosed with this rare disease, at present precancerous and will see surgeon in 2 weeks 

There is little info on line except from USA which I understand is differently treated to UK

how are you and where are you at in your treatment. Best wishes Euni

Hi Euni,

ive just been diagnosed with Paget’s disease of the vulva. It’s quite extensive but all of the biopsies came back as non-invasive.  

im hoping to start the cream in the next months and then take it from there. They don’t want to go straight for surgery due to my age. The options all seem very limited.

howve you been? 

Ive tried researching it too and all seems to be American studies and not much down here.

how is the treatment in the u.s different? The studies I looked at all seemed to be surgical 

Hi wonderful to hear from someone else. I had some skin removed in April which prioved to have just 2 cells that were cancerous. Mine was towards the front and one side only which is an easier area to do as there is spare skin. I had to keep the area well ventilated ! So no pants and loose skirts, but it was summer time so no problem and in fact I quite liked it. I healed quickly but in September an adjectival area didn't feel right so I had that done and it was a much smaller area and proved to be clear of cancer. I am now awaiting another one at the end of April. Each op is smaller than the last and I get over it quicker. However normal trousers are out as they are too tight and I alternate between skirts and tights and track bottom or leggings. A whole new winter wardrobe. The ops are now totally healed and feel just like they should, not painful and not aware of them

in the UK it seems surgical mainly to remove the skin before it become cancerous. In America they seem to go straight for the cream.  How old are you? I will be 76 next week

keep in tough and let me know how you get on.  I have told so many people and all the ladies have been pleased to know about it and to watch out for themselves .  One is being investigated for it soon  

So pleased you answered. You are very young as it mainly appears In pubescent girls and women after menopause 

I was caring for my husband who had had Alzheimer's for about 8 yrs and thought I had thrush bought on by the stress (I used to get terrible urine infections and was on antibiotics for months at a time, all due to stress). Anyway the normal creams from chemist didn't help and so saw my GP who diagnosed lichen sclerosis and I knew the risk was in in 25 could get cancer but our one is 1 in hundreds of that 1/25. My hospital has just started meetings for women who have had gynae cancer and I was told I was the only one with Pagets in the whole area ( Norfolk/Suffolk)

over a years later I moved as my husband went into care, so had a new GP who really monitored me and as no improvement over a year later I was sent for biopsies. The rest I told you.

Was yours going on for a long time before you saw a GP, and then you said it took over a year to get diagnosed.  I have a wonderful Spanish surgeon, I wanted  to cuddle him as soon as I saw him. He makes saucy remarks to all us ladies and we all love it!

i have been told that if I go 3 years without it reoccurring my chances are the same as anyone else, but I'm not so sure. Did you know it's a hair follicle that starts it all! I found the biopsies were the most painful part.  Pagets is "only" skin deep and does no go deeper?

keep in touch I do understand that talking to someone else is a great help and not just with what we have. Best wishes Eunice 

I'm so sorry to hear about your husband. You sound like youve had a lot to deal with.

The first sympotoms began in December 2018.  I didn't think much of it.  But when it didnt go I went to the GP around March 2019.  They tried a couple of steriod creams. They all seemed to work and then stopped.  

Eventually they reffered me to the local gynae clinic.  They precribed another cream but told me to use it more intermittently for a longer period. It initially worked but after a few months stopped working.  I didnt go back until September. 

And in November they did the biopsy.  It was such a shock. As none of the doctors I'd seen said it looked like anything 'sinnister'. They took one biopsy. Which came back as Paget's.  That's when they reffered me on to a hospital in London for second opionon.  Even the consultant I saw then said it didn't  look like Paget's apart from some changes to the skin.

They booked me in for more biopsies - They ended up taking 11 and all came back as non-invasive pagets.

The consultants and staff have been really supportive - but have admitted not having much experience in treating patients with it in their entire careers. 

My concern is it will come back.  I did ask my consultant if it begins as non-invasive and progresses to invasive. Or if it can come back as invasive. Even this they couldn't answer as there's so little research or people with it.

My greatest fear is that it will come back - especially having it at a younger age than your average paget's person.

I did not know about that about the hair follicle!  I wonder if removing hair from the bikini area can in some way trigger it? Something to ask my consultant i think.

Eunice, it's been so helpful to have someone else to talk to.

I'll keep everything crossed for you that it does not recur.  You sound like you have a great sense of humour and such a positive mindset!

Shari 

Hi Shari. I don't think shaving makes a difference otherwise they would let us know and people have been shaving for years and years 

I know if mine travels backwards then it will mean skin grafts (plastic surgery?) as there is no spare skin.

when I asked my surgeon if he had seen it before he said yes and this lady had it where you would expect plus up her buttocks and down her thighs!! Can you imagine that. As he is Spanish I did wonder if this was in Spain and I gathered that was his only experience of it. Yours is not invasive so that's good and after the results of my first op as soon as I feel that another bit doesn't feel right, he looks and says he agrees it looks red/different and I go in again. I'm disappointed that this one is taking so long but I go on a long haul flight in 2 weeks and that has delayed it. Then Easter delayed it again so 27th April it is.

i was warned not to look on line as the American treatment was different to ours. I have a daughter in USA and 2 weeks after I was diagnosed she was diagnosed with breast cancer. She has had a double mastectomy and this Tuesday she is having the beginning of pumping up the breast tissue with salin solution. They tried 3 times before but she kept getting infections so they left is 5 months. Be thankful for NHS, hers has already cost $100.000  fortunately she has insurance

where do you live? 
best wishes Eunice 

Hi Eunice,

I was thinking more eplication.  I;ve been epilcating for years with my trusty epliator and now i'm wondering if this may have led to it. Maybe the tweezers not being sterile? 

As mine is wide spread they said they would remove the area and then take the skin from my thighs to reconstruct. They said I'd be in hospital for 1-2 weeks. As it would all be done in the one surgery.

Is yours spreading to other areas? Did they do a mapping biopsy? They took 11  with me.  Is it a case that you're having the bit removed and then the cells are changing in other areas? or they havent biopsoed the other areas.

I'm so sorry to hear about your daughter. It's so similar to my experience.  my sister was also diognosed with Stage 3 breast cancer the same month I had my diognosis, she had a masectomy last month and is due to begin chemo next week.

Fingers crossed your daughter has no more complications.

I know I'm so thankful for the nhs. It would be so much more complicated without it. Added stress which we could all do without!

I'm in London. The staff at hospital have been so caring, which I didn't expect. And my consultant amazing - she literally booked procedures and tests and chased results for me whilst I was in the room!

How're you feeling about your surgery?  Can I ask why you opted for the surgery rather than the cream?

Shari x

Originally they did 3 biopsies which is how they discovered it. The skin from the first op showed just 2 cells had turned to cancer. Then another adjacent bit felt different and that op proved negative. I hope the next one will be too. But having it starting to feel different and he can see it is, however little, then he operates. Many small ops better than a big one 

my daughter didn't have chemo which was a blessing 

if you mentioned which hospital you were under it has been removed, so don't mention it again. What area do you live in

Yes I named the hospital. I'm in London so being treated centrally.

How about you? Did you say you weren't in London?

Catching them whilst they're small and having small ops sounds like a good strategy and less invasive  :)