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 Eunice,

How've you been?

I got the results of a biopsy my consultant took. It was a long 5 week wait .

Looks like the paget's is back (or perhaps didn't go)  :  (

Rather than doing another mapping biopsy I'm going to start on the cream again.  This time for 6 months!  It's a long road ahead.  

At least there is Christmas to look forward to and keep me busy!

x

Oh Shars I'm so sorry to hear your news. I think which ever treatment you have to have is a long process but 6 months of actually using the cream, and all that time in pain,  and what's more disheartening is it's not guaranteed to be the end of it.

Too much information coming up - today is the first day without a pad, I got so fed up wearing them especially having to go months with no pants at all.

I was supposed to see the radiography doctor (the one I didn't like) but I got the time wrong and realised it before  I was half way there. Anyway I phoned hospital told them my mistake and he phoned me back, was very pleasant about it. Asked some questions, I asked him some, and all symptoms I still have are classed as "normal" and I will now be passed back to the surgeon who is lovely.

 I wish we could have a more personal conversation but I think exchanging phone numbers would not be allowed 

keep me up to date, and message any time about anything. It's us 2 only with this disease.  Finally to make you smile you remember I have to use a "sex" toy twice a week to stop adhesions, well I warm it up with hot water first and it's now not such a shock to they system!!!

bye for now x

Hi Eunice,

Thanks for getting back! It would be lovely to have a proper chat but i think the powers that be wouldn't allow it  ;  ) We'll just have to keep it touch here it does help me so much being able to chat to you.

The prospect of a 6 month slog of cream isn't something that fills me with joy but i'll just have to put up with it.  hopefully the reaction would be as severe especially as it's not hot weather, I don't think using it in the summer helped.

You do make me laugh, your 'sex' toy sounds a hoot! Lol

Do keep in touch and let me know how youre doing.

Have lovely Christmas

Shars x

Well, lovely to hear from you again. I've just had a FaceTime call will 2 friends ove a gin and tonic or whatever takes our fancy. I fo this Fridays, satsuma Sunday with different friends, then dry as a bind till the following Friday. Over Christmas it might be! Who am I kidding here! It will be more lax. This will be my first Christmas ever in my own. I decided it would be too dangerous to see my family in London, better to stay in my own surroundings by the sea than not be here for next year 

this week, first time, I have gone 2 days with a pad, I'm hoping this will signal the beginning of the end. Although tomorrow is sex toy day so may be not. 
when my pain was at its worse after radiotherapy I described it as walking with holly leaves underneath! Ouch,!! Even sitting was terrible.  When the cream has got underway that must be very painful too, as I believe it eats away at damaged skin but has the sense to stop when it comes to healthy tissue?

it's all so tender and sensitive under there too, as well as other "bodily functions" going on. The femail body is wonderful and beautiful but so much going on UNDER THERE! Is not fair.  Men have it much easier

well dinner is calling. I'm sure we will have something to talk about before Christmas so shall look forward to the episode 

X E 

Hi I have just been diagnosed with extra mammary pagets disease and in a real panic about it.

I visited my doctor in August 2020 about a small (2cm size) strange patch of skin on vulva, she wasnt at all concerned by it but sent me to a dermatologist for second opinion. I then had a biopsy and had news this week that it was EMPD. I was totally shocked as i had never heard of this and after googling it find its extremley rare.

Ive been told its pre cancerous so assume thats good news but what terrifies me is she said that although unlikely there could  be internal malignacys. She also said it would have to be removed. 

Im hoping it will all be ok as i dont think its been there that long but any reassurance or advice would be most welcome.

Hello, I'm sorry to hear you have the disease, yes it is very rare but the the treatment is not as it's used for other problems. You make it 3 of us who have this illness, and we have received different treatments. Pagets is mostly found in post menopausel Caucasian ladies. I fall into that category but the other lady has young children so presumably is younger.

I have had 3 operations (in a year) and only the first one showed just 2 cells of cancer, the 2 subsequent ones gradually moved round from centre to front. The last one still showed a lot of Pagets and it was decided I should have radiotherapy which I did in July last year. The radiography gynea  oncologist said he had only had one lady before and after following her for 6 years it had not returned

i quite understand your apprehension, the thought is awful I know, but being an optimist, not to have treatment would be worse.  After the ops its best not to wear pants at all - try and have ops in warm weather!! I have not been able to wear ordinary trousers since. During winter I bought/made thick skirts and wore thick tights that I had cut out underneath or very long socks. Now after the radiotherapy last July I can wear stretchy needlecord leggings from M&S (£15) which have been wonderful 

please feel free to ask any questions, however personal, we are women together, our anatomies are the same. I was the only one for a long time, may be the other lady will reply too

best wishes Euni

Me again I had cameras up every known place! None of it was painful, and all was clear.  I also understand it's not common to go up inside, and if it's all clear you will have peace of mind.

Euni

Healthy new year Shars. Hope Christmas was good with the family, young children make it so I think.

I see we have another lady newly diagnosed and I have sent her a message and also that we are now a 3some. I also said you were much younger than me with young children and your treatment was different.  We quite understand where she is coming from don't we?

still wearing my leggings! ,Thankyou  M&S went for over a miles walk after lunch and returned with my face numb, I did have a glamorous woolly hat on, everyone here by the sea wears a hat, I think a baraclava helmet might be more appropriate 

xE

Hi Euni 

Thank you so much for your swift reply, information & advice. 
Yes I fall into the category of a post menopausal Caucasian , I'm 62. 
Can I ask how long it was since you were first diagnosed. My skin patch is about 2cm round, was yours a similar size. 
I'm so pleased to have found someone to chat to about this as i've been in such a panic since my diagnosis earlier this week. 
I'm hoping that mine will be a simple removal and that's the end of it but fear it'll be a longer journey as the rate of recurrence sounds quite high . 
Kind Regards

Jacie
 

Hello Jacie Sometimes the panic is just because it was something you were expecting and we automatically think the worst.

Mine started several years beforehand when I thought it was just thrush which didn't go away when I treated it and also I was under a lot of stress caring for my husband who had Alzheimer's. The doctor then decided it was lichen sclerosis which is not curable but is controllable and one in 10 will get cancer. Anyway I  change doctors because I moved and they reallyTook me in hand and when I wouldn't respond to the  cream  the nurse decided to send me off to see a gynaecologist at the hospital. She just thought it was thrush and and infection but of course I knew it wasn't. Then I had the biopsies and then it came back as Pagets  one in hundreds of the 1 in 10 who hsve Lichen get Pagets, it's that rare

i honestly did not suffer unreasonably with each op, after a few days I tried to walk but was careful to do 10 mins and home again  then again in the afternoon  by the end of the first week I coukd walk into my town 15 mins but bad to sit down for awhile while  coming home.  No pants, and you will not want to wear them! Going to the loo wasn't as bad as expected either  my surgeon wanted me to shower underneath 3 times a day, just water as the force of thr jet not only cleans but washes away dead skin  (it was very refreshing!)

I knew within a couple of months that another bit of skin didn't feel right and he Duly looked and said he could see it wasn't quite right himself. He said afterwards that he would always trust my feelings about whether something was right or not, which he couldn't do with everybody. I had 2 ops in 2019, one in May last year which showed no cancer but loads of Pagets so radiotherapy in July 

Fortunately mine were all middle to front where there is excess skin but further back there isn't and then grafts will have to be used. I hope yours are in a similar place

As I said please feel free to ask anything which might help you

best wishes Euni 

Hello Jacie Sometimes the panic is just because it was something you were expecting and we automatically think the worst.

Mine started several years beforehand when I thought it was just thrush which didn't go away when I treated it and also I was under a lot of stress caring for my husband who had Alzheimer's. The doctor then decided it was lichen sclerosis which is not curable but is controllable and one in 10 will get cancer. Anyway I  change doctors because I moved and they reallyTook me in hand and when I wouldn't respond to the  cream  the nurse decided to send me off to see a gynaecologist at the hospital. She just thought it was thrush and and infection but of course I knew it wasn't. Then I had the biopsies and then it came back as Pagets  one in hundreds of the 1 in 10 who hsve Lichen get Pagets, it's that rare

i honestly did not suffer unreasonably with each op, after a few days I tried to walk but was careful to do 10 mins and home again  then again in the afternoon  by the end of the first week I coukd walk into my town 15 mins but bad to sit down for awhile while  coming home.  No pants, and you will not want to wear them! Going to the loo wasn't as bad as expected either  my surgeon wanted me to shower underneath 3 times a day, just water as the force of thr jet not only cleans but washes away dead skin  (it was very refreshing!)

I knew within a couple of months that another bit of skin didn't feel right and he Duly looked and said he could see it wasn't quite right himself. He said afterwards that he would always trust my feelings about whether something was right or not, which he couldn't do with everybody. I had 2 ops in 2019, one in May last year which showed no cancer but loads of Pagets so radiotherapy in July 

Fortunately mine were all middle to front where there is excess skin but further back there isn't and then grafts will have to be used. I hope yours are in a similar place

As I said please feel free to ask anything which might help you

best wishes Euni 

Hi Euni

Thank you for letting me know about your experience with Pagets, I really appreciate it. I'm sure you were under alot of stress when you were caring for your husband with Alzheimers .

Glad to hear you now have a very good doctor. I really hope you wont need alot more treatment.

Mine seems to start at the bottom right of the vaginal opening and spreads to the side in an oval shape. Its only about the size of a 50pence or just a little bigger. I've never really had any itching or soreness with mine but have read that you dont always have those symptoms.

Anyway today i have received an appointment to go and see the gygynaecologist next tuesday so at least that's a start, i will let you know what they say.

Thank you again for all your advise it has really helped.

Wishing you well.

Best wishes Jacie

Hello Jacie how did you get in with doctors appointment? I hope he was a doctor you took to and confidence in. It makes such a difference

mine enjoyed a good joke. After my first operation he came to my bedside to say I could go home but there was some bad news - "I'm afraid no sex for 6 weeks"! I think that was the least of my concerns.  Another patient who he had operated on asked her "are you having sex?"  She was very quick and replied " if you're offering, I'm accepting". It does lighted the stress.

I hope to hear from you soon, best wishes Euni

Hi Euni

Its this Tuesday coming (19th January) that im going for my appointment. I'm feeling very apprehensive but at the same time glad to be going and especially pleased to get an appointment quite quickly with the Covid situation.

I hope I get a good doctor like you did in the end, it makes all the difference if you have confidence in them. Yours sounds like he has a great sense of humour and its always good to have a laugh about things.

I will definitely be in touch next week to tell you how it goes.

Thanks for your support.

Best Wishes Jacie.

Good evening, it's dark already and I'm having a cuppa and piece of Christmas cake before face timing a friend at 6pm with something a bit stronger. I limit myself to Friday,Saturday and Sunday for alcoholic drinks and it so much more fun if it's with someone else, quite a highlight when one lives alone AND there's COVID about. Fortunately I live on the coast so half my world is sea and safe except visitors do like to come to the town, but our infection rate has dropped dramatically in the last week.

immunisation starts this weekend and I'm going along as a volunteer to help at the health centre - 6 hr shift!

I totally agree, once you know you hsve to hsve treatment , you just want to get on with it, face up to it,get over it and get in with living. I hope yours is all caught first time but it's a fine line between removing enough with a clear surround and not too much. Mine did say to me that several small ops are better than one large one because you heal quicker and scar tissue is less

good luck Euni 

Hi Euni

Well I've been for my first appointment this morning , when i went in to see the consultant/gynaecologist she said she wasn't the person I should have been sent to as it wasn't her speciality, I should have been referred to a gynae/oncologist . Anyway she did take some notes and examine me and said she would have a word with the correct consultant tomorrow ..... so not a great start ! 

Hope all is well with you.  That's great that you are volunteering to help out with the covid immunisations, the sooner everyone is vaccinated the sooner we'll all hopefully get back to some normality.

It must be really lovely living by the sea. We live on the Worcestershire/Herefordshire border so a fairly rural area with nice counrtyside.

Best wishes Jacie 

So sorry Jacie that you did not get to see the right person,   All that anticipation and build up   What was someone thinking of. I hope it not another long wait

 I did not have to do my vaccine stint yesterday as it had not arrived last week as anticipated, but due yesterday. I'm still wary that I shall be among more people than usual and surprised they won't vaccinate me ahead as I'm working with them. I'm in the over 70s group - well into it! And nearly another year older but getting older is good as the alternative is not!!

I live in Suffolk a wonderful place to live although the North Sea can be cold and dangerous. I used to go in it happily as a child but not now! It has to be warm, clear, blue and preferably with tropical fish and a cocktail awaiting me when I come out! We do have drinks by the sea I must admit as we are fortunate and have a beach hut

keep me up to date. All the best Euni 

Hopefully I won't have to wait too long, the person I saw today said she would ring me tomorrow., I'll let you know . 
 

I do hope you get your vaccine soon especially as you are helping out and mixing with more people. 
 

Roll on the summer and you can enjoy drinks in your beach hut .    Jacie x

Good afternoon Euni

I'm just back from my daily walk, it's been a nice sunny day here although a little chilly . 
 

I had a call from the consultant I saw on Tuesday to say she had passed on my details etc to the right person!. She said it would now go to a Multi Disiplinary Team to be discussed as to what action to take. I did say that I would like an appointment to speak with someone from the team preferably the gynae/oncologist (who I was supposed to see)  before they go any further. She said she would ring me again next week with an update ., so will await to see what she has to say . 

Enjoy your Friday evening drink , we always have a bottle of wine on a Friday and sometimes at the weekend too ha ha ! 
 
Best wishes Jacie 

Good afternoon Euni

(As you can see below this message now appears twice !! I stupidly clicked reply to my previous post and it came back to me ha ha !!)

I'm just back from my daily walk, it's been a nice sunny day here although a little chilly . 
 

I had a call from the consultant I saw on Tuesday to say she had passed on my details etc to the right person!. She said it would now go to a Multi Disiplinary Team to be discussed as to what action to take. I did say that I would like an appointment to speak with someone from the team preferably the gynae/oncologist (who I was supposed to see)  before they go any further. She said she would ring me again next week with an update ., so will await to see what she has to say . 

Enjoy your Friday evening drink , we always have a bottle of wine on a Friday and sometimes at the weekend too ha ha ! 
 
Best wishes Jacie 

Hello again, things are moving. I had a multi disciplinary team after the 3 ops. I think being so rare a condition it's a good idea they do that.

I had a wonderful walk today too, about 2 miles on a different route. They have shut all public loos (first time I've known them do that here as it a busy tourist town normally) and with no pubs or hotels open either it limits the distance I can go. I did another walk yesterday  with my travelling lady friend, all over footpaths in the country, lovely to be among trees again ( seas not bad either, but huge seas the last few days)

yes drinkies tonight and I've got FaceTime friends for Fridays sats and Sundays.  During the week it's a cuppa   Living in my own I look forward to these. Normally we would meet up of course.

ive made similar mistakes and now receive double emails! 

cheers, our good health snd keep chatting Euni