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

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

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

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

All good news ! He always comments about me healing so quickly, then added that if hadn't done the 3 ops snd knowing I'd had radiotherapy, I would not have known, as it looks normal. Talking to my retired travelling friend today (a Retired nurse) she said the skin will never be normal entire because it has been literally burnt   But I'm pleased. He will see me twice a year for 3 yrs then yearly for another 3.

wearing real trousers is great!!

x Euni 

That's great news Euni, I'm really pleased for you .  I was thinking of you on Wednesday and hoping all went well. 
You can really enjoy wearing your proper trousers again now . Great that you only now have to go twice a year for check ups . 
I had my covid vaccine today, was very quick and very well organised.  
Jacie x
 

I forgot to tell you Jacie  that I wrote to this site and asked if it was possible to exchange contact details privately. I had an acknowledgement but no answer. I felt we had a lot in common. I'm not hopeful 

I had no ill effects from my jab but my daughter and grand daughter certainly did. They are both asthmatic and grand daughter has had Covid and was really poorly with long lasting effects

having put on a few lbs since Christmas I decided to try the fast 800 diet. It worked a treat and I lost 6lbs in the first week. It suits me so well and have no problems keeping to the principals and adding a bit more as I don't want to lose any more, just maintain. My daughter had been struggling for a month without success and within 2 days lost 3lbs. Can recommend it and it's healthy

best wishes and chat again soon X E 

Hello Euni, 

I am so sorry that you never received a reply - it seems there was a little mix up as your query was sent to our Supporter Services department who then forwarded it on to us. Really sorry about that. It's great that you would like to talk privately to jacie and that you two have so much in common. Rest assured you will soon be able to communicate privately. Before you can privately message someone else, you will need to add them as a friend. You can find out how to do that on this page. 

There are more handy tips about private messaging on the help using the forum section of Cancer Chat which you can find here.

I hope this will help you get started on private messaging. Don't hesitate to contact us if there is anything else we can help with. 

Best wishes, 

Lucie, Cancer Chat Moderator

It would be nice to communicate via a private email. It probably won't be aloud but let me know if you hear anymore.

I'm feeling ok so far today after my covid vaccine. Sorry to hear that your daughter and grand daughter had ill effects after it. We have friends who didn't feel great afterwards, it seems to effect everyone differently and I guess with your family having asthma that didnt help .

The 800 fast diet sounds very good . I lost a stone last year just by eating sensibly and doing a lot of walking, im feeling so much better for it as all my clothes fit nicely now. I always make a point of weighing myself every week now and that helps to keep it in check!

Have a good day and will be in touch again soon . Jx

Well Jacie it looks as if we can communicate privately. I have stared the ball roling and you should be hearing soon!

Euni x

Thats good news. Ive just seen the response from the moderator, will wait to hear .

J x

Hi Euni 

Just heard from consultant that  all my CT scan results are fine , what a relief , feeling SO pleased . 
Also got my op date , it's next Tuesday 23rd March !. 
Its a gorgeous sunny spring day here, going for my walk soon , lovely to see all the lambs in the fields . 
Hope all well with you .

J x