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 

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