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  

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,

How're you doing? 

As Eunice said Paget's is very very very rare. 

I had perisitent itching in one area. The Gps thought it was exzema. They saw that my skin had changed - it was slightly white but there was not tumor so didn't think it was anything sinnister (Also I don't fit the usual Paget's patient). This is also a sign of paget's (not sure about other vulva cancers)

I was prescribed steriod creams some worked and some didnt. But all eventually stopped working.  I was then reffered to the Community Gyane. They prescribed another cream. As that didnt work they did the biopsy. Which came back as Paget's.  Took a year to diagnose by this time I had widespread Paget's.

Apparantly peristent itching is a sign. I didn't know this. Also the skin whitening ( I never looked down until now so wouldn't have checked! Lol!)

Have you been to your Gp? It may be worth asking for a referral to your community Gynea, they can also do biopsies if needed. 

Hope this helps x

How are YOU doing Shars. Did you see my chat to you  I sent a few days ago. Did you try the cream or go for surgery. I'm at a cross roads now as well,  when the next lot comes   Best wishes

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 

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