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  

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

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

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 
 

First hurdle over, what a relief it is. I always stayed in the first night no matter what time the op was.

it's rained all day, a fine miserablness. We used to have a garage for car repairs in town but they were forced to move to a near by industrial estate ( everyone wrote and complained as it was easy to walk to, to collect the car) my friend took hers in yesterday and found the walk back quite dangerous with no pavements on the country road. I have just taken her there and we decided this what we will have to do, help each other 

live been doing a jigsaw puzzle all based on those of gin and variations on the theme.  Very good on an aweful day

Inwonder how long it takes to become "friends"?

xEuni

Yes what a relief it is for sure ! I have to be at the hospital at 07.30 next Tuesday and apparently first on the list to be done ( but guess that could change) . The hospital I have to go to is just over an hour away , not my usual local hospital which is only 20 minutes away, so a very early start next Tuesday . 
 
Oh it sounds a miserable day where you are today, I'll send some sunshine your way. That's a good idea to take each other when you need the garage , it's not great  walking on country road with no pavements .

I love jigsaw puzzles , did quite a lot on the first lockdown, only do those with 500 pieces. 

Yes have been wondering when we'll hear about becoming "friends ". !

J x 

 

Hi Jacie and [@Euni]‍, 

If you've managed to find each other via your friends list on your profile and sent a request to each other, all you need to do is accept the request and you'll be able to start messaging each other :)

I know Mod Lucie shared the link that explains how to add friends already, but I'll just include it here as well if you need a reminder on what to do.

Kind regards,

Steph, Cancer Chat Moderator

It really sounds as if we do have a lot in common (as well as our medical bits) which is great. Who knows when you come to The East you might travel a bit further and bring your friends for a day out X E 

Hi Euni

It's another lovely afternoon here,  all my washing is drying outside in the sunshine . 
Hooe you are well and you also have some spring sunshine on the coast . 
I'm just sorting a bag to take with me for my op tomorrow, feeling very nervous especially about the general anaesthetic , silly really as I have had it before ... and survived ha ha !
Just hoping this op will be the only one I need , it's only a small patch of skin so hoping it will all be removed successfully and it won't return .  I know there is a high recurrence rate but fingers crossed . 
 I'll let you know how I get on.! 
Best Wishes J x

Shall be thinking of you and wishing a one time op only.

it's a positive action that's going to be done, positive thoughts really do aid healing 

I always walked into the anti operation room, got on the trolly, they then got me well down to the end as obviously the end is easier for the surgeon to get up close and personal. Just don't think about that bit!! Remember they have chosen gynae as their speciality!! When they enject into you I love that bit when you feel it taking effect - like a triple gin. Next it all done and your coming round. That's not good for me as my temperature and blood pressure are always very low so I feel unbelievably cold, even with a heated cover over me. They take a long time to get my temperature and pressure up before wheeling me in. That first hot cuppa is nectar. 
do let me know when your safe. 
haven't heard anymore about the "friends" bit, have you?

x Euni

Thanks Euni for all your support ... yes positive thinking . 
Ha ha , will try not to over think the up close and personal bit !! 
Yes will let you know how it all goes. 
I haven't heard any more about the "friends " bit . I've clicked you in as my friend but  I'll look into it again later this week , I'll have plenty of time after my op . 
J x

I think I mentioned by surgeon was very keen on 3 showers a day underneath. Not just for hygiene but because it washed away dead skin etc. To be honest it was a bit of a faff just before bed time, but I felt better and cleaner afterwards. If yours doesn't mention it you might like to ask, or just do it. Absolutely against sitting I salt solution! Ouch!
did you read what I had mentioned to Shars about drying underneath? I used an old handkerchief of my husbands folded into a long piece and just held it underneath to absorb any water. It might help you too

I tried to send you a fingers crossed picture but it won't do it. Just think it

all the very best Euni