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 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

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

Your message to me came after the reply to the other lady so I have sent you conflicting chats.,.,

I haven't been offered the cream but that may be because yours was extensive and skin removal not an option (?). Was it very painful using the cream, you mentioned blisters. Did you visit the surgeon for his opinion.
Our chats all got cut short as I went on holiday to India and we were both waiting procedures. Mind was under NHS but done in a private clinic as the it had been taken over by NHS to help free up beds for corona virus. Very good in a private room,, better food, etc

best wishes E

Hi Eunice,

Yep I was offered the cream because mine is quite extensive.  I met with the surgeon first and she reffered me to her colleague who had had expereince of using immiquimod.

From the studies I've read up on the ladies in the studies have only had it in one place and not widespread like mine.

It's not too bad using the cream. It makes it very itchy. I had blistering probably becuase I was scratching or put too much cream on. I also dont get an opportunity to rest to prevent added friction as I'm always running around after my two little ones!

i spoke to my consultant and he said to rest until it was healed and start again.  These can be the side effects.

The biggest challenge for me is keeping it on for 10 hours as I find it hard to fall asleep and usually need to go to the toilet! LOL!

Not everywhere offers the cream.  i went for a second opinion at a cancer specialist hosptial and they only did surgery and felt the cream was just as successful as surgery.  pretty much the same reccurance rate as surgery as well.

i've had a few procedures done at private hospitals via NHS - I agree it's lovely. and the food is so much better! LOL!

Shars x

Gosh, 10 hrs to keep it on. One has to go to the loo when needed and we are encouraged to drink plenty of water especially when hot. Perhaps a catheta (I'm not being serious) must be very difficult with 2 young children to get any rest at all  I expect the cream is like cortisone cream which has to be applied very thinly indeed, but it also thins the skin, so I used it very sparingly prior to my op, just when the soreness would not allow me to walk outside  even during the lockdown I go out everyday for some fresh air and sea breeze, and buy something food wise A week before the op I had to go to the clinic and get tested for corona  it was so wonderful to drive out for a couple of hours and see all the trees bright green and the fields full of bright yellow rape seed. Have you ever seen that? It's startling it's so bright yellow! But I don't like the smell

i expect you're like me, unable to wear trousers? Alright now with long skirts and no pants and a breeze blowing through, quite nice really . Keep in touch. We are in this together, no one else has come forward, we are very rare Eunice

I think it's 7-10 hours max.So i try for the max.

Needing to go to the toilet is the most challenging part.

The medication makes me feel quite fatigued and slightly achy but this wears off. If I was able to rest during the day then it would be a breeze, but my little ones don't allow it! LOL!

I'm not sure about cortisone as I've never used it. But it sounds similar a thin layer applied. 

It causes inflammation and apparantly this is the sign its working on the abnormal cells.

It must have been really nice to get out and see summer.I've only ever seen the rape seed fields from my window on the motorway they are beautiful  :  )

I was able to wear trousers. But now I'm like you in dresses and skirts and no pants! LOL.

Does your paget's keep coming back to the same area? Or is it propping up in different places?

I'll let you know how the biopsies go and keep in touch. As you say we're very rare. I can't tell you how nice it's to be able to chat to someone else  Shars x

hi ladies thanks for taking the time to reply. 

sorry if i asked already but did both of your kinda of occur out of the blue? do we know what causes or increases the chances of getting this? 

interestingly I do actually often itch down there, but i feel like i just always have. I wouldnt say it's an intense itch & there's no indication of inflamation that would suggest anything like thrush etc. I suffer from excema  & dermatitus on other parts of my body so if were similar in that area i think i'd know the signs to look out for. Honestly (& sorry if this is oversharing not my intention just trying to give an accurate picture) i'm not sure if sometimes i scratch out of habit more that actually due to itching, do i scratch because it's itchy or is it itchy because i scratch it? i'm not sure. I'm going to try & take more notice. In saying that there will be times i'm in public & feel a genuine itch but from the way you ladies are talking this is quite intense so i'm guessing I would probably be very aware of it, although worried that i've just become accustom to it. I'm late 20's & remember it being "itchy" since early teen years (pre sexual activity with someone else though not solo (again sorry if that's oversharing!). I did have thrush when i was a child & remember it being red & burning, this isn't like that. 

i'm going to call the GP tomorrow. Feeling anxious. I feel ashamed to brotch the subject of my hands were down there & i found a lump. I don't want judged or to feel dirty :( 

what is the chance of complete recovery from this type of cancer? can it be terminal or only if it spreads? 

Morning, don't worry about over sharing! The usual age Is post menapsal  but Shars is younger too.

the cause as such is unknown although a hair follicle is where it starts. I have had a many reoccurring cases of thrush, urine infections and cistitus. Scratching will only make it worse, a bit like an insect bite. Don't use soap there, if you feel plain water isn't  enough use E 45 cleansing cream. After my operations I have to shower there 3 times a day with as cold a temperature as I can. This is for heeling and hygiene (washing away any dead skin, cooling etc) and actually it's rather pleasant after the initial shock  always always cotton pants only and I sometimes wonder if tight trousers don't generally aggregate that area in the first place

Only a doctor can diagnose you so good fortune when you do see one. Euni 

Hi, Oh please dont feel worried about talking about it. It helps to share.

i was embarrassed too that's proberbly why I waited for a few months before going to the doctor and then going back!

Mine was a very intense itch in one place. It wasn't there all the time.  I notice it got worse after washing - proberbly the water and effect of drying that area.

I think both Euni and I have non-invasive Paget's so it hasn't become cancerous yet. But the apporach of the consultants is to treat it as if it were.

Mine is widespread and currently non-invasive.  Very little is known about this type of cancer.  But other vulva cancers are more common so more knowledge and treatment options.

I asked the question about life expectancy too and the consultant seemed to think there's no reason why it should be terminal as long as it managed and a close eye kept on it - as Paget's has a very high recurrance rate.

I would definately make an appointment with your GP. It will put your mind at ease. 

Hope this helps in some way 

Shars x

Yes definitely not terminal. My retired nurse friend is always stressing that

i have just received an appointment for Wednesday to see the radiographer. I hope I can make the right decision for myself which path to take. I think I shall still feel between a rock and a hard place. Watch this space as they say! Euni

im enjoying being pant less in this heat and feeling the wind blowing through my skirts

just to update I had a t/c consulation with my GP who says it's most likely a bartholins cyst. I'd mentioned i had read about them prior to her bringing it up so not sure if she was just going with that as she doesn't actually want to examine it in surgery. 

Would feel more reassured after a physical examination but due to covid she said they have to weigh up the risks of coming into the surgery .... 

she said if it's not gone in a few months then contact the GP again. A few months seems quite a long time .... it could have developed (spread) by then if it is something serious .... thoughts?

It would also help to have an examination so they could identify any inflamtion or abnormalities in the area. As i say it does itch fairly often but as I also said for me this is "normal" but maybe it's not normal ... 

still stressing!

hope you are both keeping well. 

Tricky for you and them, I can see both points of view

have you asked the chemist for an anti itch cream. They are very good and can be spoken to with all confidentiality. Explain your predicament and your dermatitis etc etc and you don't think it's thrush ( presume you have gone down that route already as I did). I know many years ago I was given an anti itch cream prior to surgery and although it "burnt" when first applied it definitely stopped the itch. I wish I could remember the name. It began with an E. not much help!

have you tried not wearing trousers for a while to see if it helps, shower, don't bath and sit in hot water for long time, as heat always make itching worse

i have been making a long questionnaire to take to the hospital  this afternoon when I find out the low down on radiography

keep in touch Euni