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 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 

Hi Shars, how are you? Long time no chats and Christmas well and truly gone. How is the treatment progressing, has the 6 months gone by yet.

hope to hear from you soon.  Perhaps you have lost your passwords again

x Euni 

Enjoy your drinks and FaceTime friends this weekend . 
 

Glad you enjoyed your walk today albeit no loos !!
 

I'll let you know if I hear anything next week . 
Jacie x

Hi Euni

How are things with you this week?

We had snow here last weekend but its been quite mild since. Unfortunately I haven't been able to go for my daily walks this week as i've been suffering from a bad back ... very frustrating! I dont know what caused it but I guess these things just happen.

I had another call from the hospital this week  to say I would be contacted shortly for an appointment to go and see someone, so I may hear something next week.

Enjoy your Friday evening drinks. Jacie x

Hello again, I shall be getting a bad name with Friday-Sunday FaceTime drinks. This morning it was a FaceTime coffee.

Sorry to hear about your back, having had a disk partially removed I know just how painful and debilitating that can be, and you never know how long it will take to get back to normal again.

Good news for another appointment as you feel things are progressing. I had a letter to make an app for the vaccine, 10 miles away when my surgery is 1 mike away. I had no sooner made a date for February 9th than I received a phone call from the surgery and I go tomorrow. I have a holiday planned with a travelling friend but she is 69 in March so a group below me and we both have to have had the 2nd jab plus at least 2 weeks. I shall plea for her to jump the queue. We have had at 5 holidays cancelled in 3 years and I have an my big one cancelled as well (I should be in Burma at the moment)

My big news is that 2 days ago I wore proper trousers for the first time in 2 years! Not too bad but shall take it very slowly. The bad news is that I have put on fat round my waist.  Not good news. I suspect for the last 2 years I have spent more time than usual sitting and not being able to do my normal walks. The trouble is as one ages that fat is the hardest to get rid of.

keep me informed  best wishes Euni

Hello again, I shall be getting a bad name with Friday-Sunday FaceTime drinks. This morning it was a FaceTime coffee.

Sorry to hear about your back, having had a disk partially removed I know just how painful and debilitating that can be, and you never know how long it will take to get back to normal again.

Good news for another appointment as you feel things are progressing. I had a letter to make an app for the vaccine, 10 miles away when my surgery is 1 mike away. I had no sooner made a date for February 9th than I received a phone call from the surgery and I go tomorrow. I have a holiday planned with a travelling friend but she is 69 in March so a group below me and we both have to have had the 2nd jab plus at least 2 weeks. I shall plea for her to jump the queue. We have had at 5 holidays cancelled in 3 years and I have an my big one cancelled as well (I should be in Burma at the moment)

My big news is that 2 days ago I wore proper trousers for the first time in 2 years! Not too bad but shall take it very slowly. The bad news is that I have put on fat round my waist.  Not good news. I suspect for the last 2 years I have spent more time than usual sitting and not being able to do my normal walks. The trouble is as one ages that fat is the hardest to get rid of.

keep me informed  best wishes Euni

Glad to hear you have your vaccine appointment tomorrow . I do hope your holiday friend can get her vaccines sorted in time too . How disappointing about your trip to Burma. 
We love to travel and have a holiday to Skiathos this September that was postponed from last year. We love the Greek Islands so might even get another week somewhere before then all being well .  
That's great news that you are finally back in proper trousers. 
Have a good weekend x

 

Good morning Jacie I'm presuming you have had no appointment yet? I have one on March 10th (my youngest daughters BD - 51!) 

it's bitterly cold here today as we have a gale force wind blowing which makes it feel like -4 according to the BBC app. But within 4 hours of putting sheets and towels out it's all dry and put away,  "it's an ill wind ...etc"

best wishes and thinking of Greek islands, sun, Greek music and ouzo.
Greek music played a big  role in my married life, more the traditional type than you would probably hear today - I played a piece to my husband entry into the crem 

Hi Euni

Sorry for the late reply , I've only just looked at my emails. 

I had a letter yesterday for an appointment next Tuesday 23rd , so let's hope I get to see the right person this time and finally start to get sorted ! 
 
It's been a really cold week here too. Will be glad if it's a bit milder this week . Unfortunately I'm still not back on my daily walks as my bad back is still not 100%, it's getting better but taking its time!  
 
Yes definitely looking forward to better times ahead this year and hopefully travel to the Greek islands, love an ouzo or two with some Greek music.
Let's hope with the success of the vaccine roll out  we are all able to get back to some normality ... fingers crossed.  
Hope you get to see your daughter for her birthday too x

Best wishes and I'll let you know how I get on at my appointment . 
Jacie x 

Hi Euni

How are you ? hope all is well. 

Not long got back from my appointment. Anyway I did see the right consultant this time. She had a look at it and said it didn't look like the usual Pagets !  I wished I'd remembered to ask if I should have had another biopsy but I'm sure she would have advised me to do so if she thought it necessary .
She's going  to remove it , thankfully it's not very big &  hopefully won't be too long to wait. Also sending me for a CT scan to check for any other gynae cancers associated with pagets, she did say it was very unlikely, fingers crossed.
She did mention as you had also said about wearing a skirt and no pants for a while ....ha ha a bit cool this weather! Not that I have a single skirt in my wardrobe, I always wear trousers . 
Oooooo it does sound like it will be very sore , hope it won't take too long to heal . 
Did you have a general anaesthetic with your ops or just a local , I'm guessing it'll be a general .....that was another question I forgot to ask even though I'd taken some notes with me !! 

Well let's hope the roadmap out of lockdown will be successful, would be so wonderful to get back to some normality by June and also the chance to travel again. 
 

Best Wishes

Jacie x 

 

Good morning Jacie. So pleased progress has been made. I had every orifice inspected for cancer, none of it was painful and one of them I think they put me out for. And I was all clear which is good to know that.
Although I did wear a lot of trousers I did have a skirt, but I bought two at charity shops, and made two more. I wore thick tights (I experimented by cutting out the whole crotch area but not that comfortable) or long socks underneath, but it's still not as warm as trousers. I don't know what the solution is, perhaps only go out when it's warm and not too windy, difficult here by the sea.

I think I may have told you that it's not easy for the surgeon to know how far to cut either side of the obviously damaged part. They don't want to take too much but neither do they want to take not enough. As it happened  there was more to come and I had two more operations after the first one. Then of course I had the radiotherapy and in retrospect the operations were not that painful afterwards compared to the radiotherapy. Anyway the long and the short of it is you want to be rid of it and you will have done whatever needs to be done. Thank goodness for national health, where would we be without it.
I hope you don't have a long wait on the other hand the longer you wait the warmer it gets!

I hope you don't have a long wait on the other hand the longer you wait the warmer it gets!  Keep me up to date best wishes Euni

Good afternoon Euni, hope you are well. 
 

It's been a dull grey chilly day here. It was so lovely last weekend ,we had lots of lovely sunshine and really felt spring was here but feels back to winter today !  
I went for my pre op assessment yesterday , no date for the op as yet , the nurse said they will need to reduce the covid patients first , so will wait and see.  Feeling very nervous about it all. 
I've got my CT scan next Tuesday to check all is well internally .... fingers & toes crossed . 
Also got my first covid vaccine next Thursday so that's one appointment I can actually look forward too .. ha ha . 
Well it's Friday again, hope you are chatting to your friends this evening with a drink or two! I've got a bottle of red on standby for us this evening. 

Best Wishes Jacie x

Good to hear from you Jacie, and  good news too

. My experience of the op was nothing to fret about, and the sunbequesnt ones were all straight forward and recovery time acceptable. I know we are all different how we react ( I'm a complete shaking wreck when it comes to having teeth cleaned!)  I hope your surgeon is as lovely as mine  I will actually be seeing him on Wednesday, my first inspection since radiotherapy.

Are you pant less yet no fun in this cold weather. I have now worn proper trousers for several days. I could do them up although bulged over the waist band. Too much sitting around due to winter and lockdown. I needed to lose 6lbs. I did it in a week and tummy bulge gone. I'm a convert to Dr Moselys Fast 800 and I indulged at weekends too! Bought the new book as well and now have lots of lovely recipes to try. All my sort of food too.

keep in touch and keep me up to date. These chats are what get us through these difficult experiences plus of course our NHS, we are so lucky. It may not be perfect but no system is

all the best Euni x

Good luck on Wednesday Euni, hope all goes well with your radiotherapy inspection, let me know how you get on. 
You have done well to lose 6lbs in a week , I always watch Micheal Moselys tv programmes but haven't got any of his books as yet. 
Yes we are very lucky to have the nhs and as you say it's great we can chat , I've felt so much better about things since I've been chatting to you . I did ask my consultant if she's sees many people with extramammary pagets and she said maybe one or two a year so there's not many of us ! 
Best Wishes Jacie x

Yes, We are truly rare! But I knew that as I'm sure you did, and not just because of Pagets

do you ever come to the east coast area? The sun has just come out, shining on my washing. Having been in all morning I'm going for a walk along the prom, see the sea and breathe in the wonderful air

Will let you know how Wednesday goes. I hate all the undressing part , so much easier when it was skirt weather and no pants - just laid on the couch and pulled everything up,,

X E 

Enjoy your walk and all that lovely sea air ... wonderful on a sunny afternoon . 
We have some friends who live in Norfolk , not right on the east coast but about 12 miles away. We met them on holiday many years ago and have always stayed  in touch . We do alternate year 'long weekend visits' . We always love going there as it's great to get to the coast and they love the Malvern Hills when they visit us. 
All the best for Wednesday . J x