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  

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 

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. 

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 

Your GP sounds quite confident this is what it is. 

Can your GP not do the web appointment or send them a picture or film footage of it? You may have already have done this.

I'd not heard of a bartholins cyst - does it just go by itself over time? 

It's so hard to not worry when you haven't been examined properly you can only keep pestering them until they see you. It may be worth them taking a swab.

Shars x

Hi I looked it up on google, tells you all about it d you could probably go to images and a look at examples. Those pics are always a bit scary!

i saw the radiographer this afternoon and am going to go ahead and have the treatment. Not much choice really as it will just keep returning and with luck this therapy will put a stop to it

5 daily visits for 3 weeks, each session taking around 10 mins. It will take over an hour each way so shall be tired just through the driving let alone the reactions.  I was told the peak will come 2 weeks after the  15 sessions and will probably be given morphine. Watch this space! Euni

she didnt suggest it but i'm not sure i'd be comfortable doing it over camera lol & tbh its something she would need to feel as opposed to see. 

I hadn't hear of it either until the night i found the lump & basically googled "lump on labia" & it came up. Apparently its a blocked duct or something that secretes sexual lubrication fluid ... don't ask me how it becomes blocked lol. But apparently its more common in sexually active people or if you might have an STI. I don't fall into either of those catagories hence my concerns/not being convinced that it's that. 

Let's hope it goes as she said, but you could always ask again in a few weeks time. Do you have nurse Practioners? We do and it was her who got me sorted and arranged biopsies etc

good luck E

This sounds very promising! Fingers crossed it does the trick  :  )

Let me know how it goes. 

I'm also here if it gets a bit painful - Being in pain especially down there can be really exhuasting 

x

It's amazing the things you discover when goggling! I've learnt something new!  ;  )

Fingers crossed it resolves itself like your GP said.  It's so worrying to find anything tht shouldnt be there.

x

Hi it has suddenly come to me the name of the cream was Eurax and can be bought in Boots. If you Google it you can see it might help you. It did me but a word of warning when you first put it on there is a warm burning feeling, not too unpleasant, then the itching stops. It's £3.50

Euni

Hello Shars. I hope this reaches you as the first time I sent it, it came back to me!

I wonder how you are progressing. I had my 15 sessions of radiotherapy which finished in July. I'm glad they didn't pull any punches about what to expect because it was as painful as they said and no pain relief covered it. That's all in the past and I'm up and kicking. I've not been checked out as I should have been, I suspect all this COVID has put them under considerable stress. I will contactthem next week as I don't want to fall out of their radar.
I'm not in pain, which is wonderful but it's not as it was. Having had all that area "burnt" it's now all new skin, smooth and pink!!  I was given a set of vaginal dilators- I call them my sex toys, which makes all my friends laugh. They come in lots of sizes and I have to use them at least twice a week for  at least 2 years. It's to stop an lesions forming which would make any examination in the future impossible.  All I have now is a discharge which is "normal" as the radiotherapy can affect internal parts as well - from erethra, vagina and back passage. It did affect my bladder a lot but I'm more or less over that.

enough about me, how are you? I do hope your cream is working and your pain is bearable

best wishes Euni

Hi Eunice!

So lovely to hear from you I'm so glad you got in touch. I'd wanted to contact you but couldn't find my login details!

i'm so glad the treatment went well! And you are on the road to recovery it sounds like it was hard going.

I had my biopsies at the end of July and all 13 came back clear! It felt like such a long wait for the results but such a releif and unexpected result.

I've got to go back a week Monday as there are some areas that havent stopped itching but more like an internal irritating tingling if that makes sense (similar to the sensation I had when I used the cream) but not when it was the Paget's.

I assume theyll have to do biopsies.  Parts of the skin do look lovely and pink as you describe but there are parts that still don't look right to me.

I always love to hear from you you do pick me up and make me laugh! Your sex toys sound fantastic LOL! It sounds like a fun treatment after all the gruelling radiotherapy!

Let me know how your check up goes 

Shars x