Hi 

I was diagnosed with pagets disease of the vulva

This week cried for hours.

Don't know whats going to happen as they say its so rare. Never seen it before so how are we supposed to cope. Got to find out treatment on Wednesday so up tight can't sleep but trying to get my head round it.

Hope you can give me some answers. mine is non invasive 

Take care 

Hi 

ive been diagnosed with Paget’s as well. It’s taken a year to get it diagnosed. 

I wondered how you are getting on? I’m hoping to start treatment soon. 

I’m finding it hard to find strength and positivity. And there seems to be so little out there  to give me hope and not so fearful.

thanks shars

Hi Mariaz, glad it all went well, hope you don't have to wait too long for your results. 

It would be great for you to join our little group as we chat occasionally on Facebook and communicate via private email . Firstly I think you have to request me on this site as a friend also  Euni and Shari and then we are able to start to communicate privately. 
It's been a while since I did the same thing so can't remember exactly what i did but I'm sure Shari and Euni (when she returns)   will remember what the procedure is .  
jacie x
 

Hi Jacie and [@Mariaz]‍, 

Yes, you're right, you will need to add each other as a friend before you can private message one another. We have a handy guide on how to do this just here.

I hope this helps :happy:

Kind regards,

Steph, Cancer Chat Moderator

Mariaz - apologies for the typing error in previous message , i mean't to say our group chat occasionally on a Face Time call, not Facebook .  Jacie x

Managed to do a friends request to you and Shars1 but can't find Euni to request.   I do prefer to chat privately from now on and use FaceTime 

Good afternoon Mariaz 
Yes it is better chatting privately on Face Time . 
I think Euni will be back from her trip next week so we can hopefully all connect then . 
Best wishes. Jacie x

Hi.  Just had mapping biopsy to see extent of Paget's. Sounds like cream is a good option.  Does the side effects keep one housebound or are there pain killers help overcome the soreness etc.

Hallo lady  number 1 here at last, calling in ladies 2, 3, and now a 4th one to join our happy band

Home a week but it's been so busy with complicated PCR tests not coming through, but the good news is I'm all clear and just done a LFT and that's clear

im in my 70s too, theoretically not likely to get Pagets at our age,  but I'm sure we are young at heart! and of course don't look it. 
how to get you into our FaceTime group I'm sure I have to do something and will work on it later today as about to go out

so pleased you have found us 

uni
 

Great to hear from you and you are free of Covid haven't been able to friend you yet will try again. Results are taking ages as path labs I've run with Covid results. 

HI - I have been having treatment for  Pagets Disease of the Vulvar and Perinal 7 years now. I did go to the doctors about 2 years before that but was constantly told I had Thrush and was only sent to see a doctor at th hospital after I went to BUPA and they wrote a letter to my GP.

I know this is a cancer support group and I have been told I do not have cancer but this is the only group I can find which mentions Pagets.

For the first 5 years I was having incisions to remove bits of skin, but for the past 2 years I have been going to have laser treatment which is very painful and  am now going to have a combination of laser and Imiquimod cream. 

I have been told that I now have three options, of either, Imoiquimod Cream, laser and Imiquimod cream, or have op to remove all the skin and have a skin graft.

Sorry this is quite a long post but it is nice to get in touch with people who know what I am talking about.

Thank you

cale

Hi,  so sorry to hear you also have Paget's of the vulva,  I had treatment of Imiquimod and it was a horrible treatment, but on biopsy afterwards was clear of Paget's waiting for my first 3 monthly follow up. Like you it was years before biopsy taken, there doesn't seem to be standard treatment, kept being told it's rare, no help from my hospital cancer services, appalling but it seems to depend on each hospital.  In touch with 3 others all in different parts of the country, different age groups, different treatment but their hospitals did treat them with respect and carried out tests to check no other issues. My hospital is in Devon.  Luckily my GP was very supportive.  I suffered from the majority of side effects from Imiquimod which I finished end April, only now I feel the side effects have worn off.  There is an option on this site to private message,  we can do that if you want to.  I'm now in my 70s and unfortunately have to rely on the National Health Service.  You can ask for a second opinion on NHS though, best to do your research first of which hospital has had cases of Paget's of the vulva as no National care pathway in UK.

Imiquimod treatment is used for basal cell carcinoma !!!  And Paget's they say is not cancer !!!

Hi,  so sorry to hear you also have Paget's of the vulva,  I had treatment of Imiquimod and it was a horrible treatment, but on biopsy afterwards was clear of Paget's waiting for my first 3 monthly follow up. Like you it was years before biopsy taken, there doesn't seem to be standard treatment, kept being told it's rare, no help from my hospital cancer services, appalling but it seems to depend on each hospital.  In touch with 3 others all in different parts of the country, different age groups, different treatment but their hospitals did treat them with respect and carried out tests to check no other issues. My hospital is in Devon.  Luckily my GP was very supportive.  I suffered from the majority of side effects from Imiquimod which I finished end April, only now I feel the side effects have worn off.  There is an option on this site to private message,  we can do that if you want to.  I'm now in my 70s and unfortunately have to rely on the National Health Service.  You can ask for a second opinion on NHS though, best to do your research first of which hospital has had cases of Paget's of the vulva as no National care pathway in UK.

Imiquimod treatment is used for basal cell carcinoma !!!  And Paget's they say is not cancer !!!