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 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  

Hi Euni,

Thanks for getting in touch.  It's nice to have someone who's gone and going through it and has such a positive attitude.

I've just turned 40.  Mine is quite widespread so surgery would be quite extensive and they have said would require removing everything and plastic surgery of the area. Because they feel the surgery would be quite life changing they want me to try the cream first.  They also said the chances of it returning are pretty much the same with both options. 

Also as it's non-invasive they've suggested trying the cream first.  

I have shared my experience with my friends and they have been really greatful to know.  It's not something they were aware of, like myself. It really does help to share it and increase awareness of it.

i meet with the consultant, who is the specialist with the cream this comng wednesday.  hopefully a treatment plan can be finalised.

x

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 

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  :)

No I live by the sea in Suffolk   Was lovely and sunny now dull with a chilly wind. Been too busy this morning to go out so must this afternoon for some fresh air and exercise 

let me know how you get on

best wishes

Hi Eunice,

I met with my consultant on Wednesday and he has prescribed immiquimod for me to apply for 16 weeks.  Ill then have to wait a month before they can repeat the biopsies.  I'm going to start it tonight he's warned me it's not going to be easy wish me luck!

I also met with another consultant at another London hospital - more specialised in cancer just for a second opinion. It was really useful to hear his experience of pagets disease has been.  He seems to have more experience (whereas the one I'm being treating at has only one other case). But they only offer the surgery and not the cream as an option.

Should it come to the surgery I may well ask to be seen by him, as the other consultant sang his praises as a surgeon!

Any way I'm feeling a lot more positive. I think to finally be starting something - just need it to do the work! Fingers crossed.

How're you Eunice?

It's sounds so lovely to be near the sea!

How are you? It's been ages and you must be well into your treatment. I had my 3rd op 2 weeks ago and this morning had a phone consultation with my surgeon. No cancerous cells found thank goodness but full of Pagets!
They have all been discussing my case and I am to see a radiologist to tell me the pros and cons of that as again more ops in the future.  Perhaps I can start another chat to see if anyone else has had radiotherapy there

best wishes and hope to hear from you

hello ladies, not to intrude on this thread, I hope you are both well. 

What are the signs of pagets disease in the vulva? 

recently discovered a lump in mine & am obviously very concerned, I made a post: www.cancerresearchuk.org/.../worried-it-could-be

it has been reassuring to read your expereince of are treatments/surgeries.. It's strange the age difference in both of you. It always worries me when they say things like"cancer of this type in people of your age is rare" ... that might be the case but it still could be so just be safe & run tests please!!

Good morning Pagets is mainly Caucasian women post menopausal  min started with what I thought was thrush but did not respond to over the counter treatment    I was under considerable stress at that time too as my husband had Alzheimer's  I went to my GP and they decided it was Lichen Sclerosis which is not curable but is controllable  one in 10 can go to cancer.  2 years on I move and see a new Nurse Practioner who is determined to to help me  eventually she asks that I have biopsies which come back as Pagets  Pagets of the vulva is extremely rare and is one in thousands of the 1 in 10 that I mentioned before.  As far as I know in the relatively early stages, it does not look very different from bad thrush and that the only way to confirm is through biopsies. 
I have mentioned this to quite a few women, and all have been very grateful as they had problems and so far non of them have got Pagets.  I think if it is left untreated it can spread  I am so glad that I was sent and had an early diagnosis

i hope this has helped, but do come back if I can help any more

Hi so lovel to hear from you.

It's great news that the biopsy showed the cells are still non cancerous. Not so great about the paget's.

I dont know much about radiotherapy - they said it can be uncomofrtable but worth it if it works.

im sort of well into my treatment. I've had to stop twice for 2 weeks each times - for severe swelling and other blistering. But I'm back on it now.  Also I only by chance wanted to check if i should be using the cream together with the barrier cream he suggested - he said probably not as it could be diluting the cream! This was week 8!!! So now I'm very anxious that the first 8 weeks havent been effective and obviously I've missed 4 weeks.

So it's possible i've only been using the cream properly for 2 weeks if that makes sense! 

I'm still waiting for my biopsy appointment. It should be some time towards the end of July. I have to stop applying the cream 4weeks before the biopsies.

Have you considered immiquimod/Aldara cream? There's a few studies on it. It seems to work quite well.

my GP prescribes it and i get it from the chemist. so it's quite conveinient in that sense.

Hope it goes well with the radiologist. It would be good to know more about that as another option - especially as it's so limited!

Shars x