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Paget's Disease of the vulva

linda6565
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I would really like to chat with those whose life has been affected by this ' really rare', 'really rare where you've got it' and 'even more rare in your age group' blooming disease. I was diagnosed with this 4 1/2 years ago, and have had one operation. i am now facing my second which is going to be tough, with my recent biopsies 'unable to exclude cancerous changes'. Because of the rarity and where i have it i feel very isolated. It would be wonderful to talk with someone who faces the same scary future as me. x

  • Offline in reply to loel

    Hallo Loel

    I think you have already had messages from the other people in our group. Jacqui, and Maraiz  and I am Uni. I was the first one to come on this group since 2011 and I waited a long time for someone to join me. And now there are four of us. I too was told that it was thrush then lichen sclerosis  then on going to hospital it was both together. However after 3 biopsies it was definitely Pagets and I had my first operation and that showed just a very few cels were cancer.  Several months later I was aware that some parts did not feel right and again I had another operation adjoining the first one. Within 18 months I had another operation which included half my clitoris being removed! Yrs extremely sensitive with 10 times more nerve endings there than anywhere else on females or male parts. By this stage it was decided that they could not keep removing skin otherwise it would be grafts. I then had radiotherapy, 15 sessions.

    this was 2 years ago in the first lock down and as walking was painful I spent a lot of time indoors. I'm delighted to say all is good now and I'm checked on twice a year for 6 years.

    I had a wonderful Spanish surgeon and my own cancer nurse. It's like seeing old friends when I go back he knows that if I feel some isn't right then I'm looked at within a week, he trusts my judgment 

    on asking him if he had had any other patience with Pagets he said during his training he had one lady and it was all over her buttocks and down her thighs. Whether this was in Spain or in England I don't know. And to this day I am still the only one at this university hospital in east anglia  with this complaint. I'm now in my late 70s, almost too old to have it as it's usually around 60 or so that it's most common best wishes

    Uni

    I am intrigued by your laser treatment as I have only heard of this for eyes 

  • Offline in reply to loel

    Hi Cale,

    It sounds like you've had a really tough few years!  

    I have a similar story in that my road to diognosis was long, several months of going back to the doctors who couldn't really see anything and didn't suspect anything sinnister (the number of times I heard that!). 

    Eventually they did a single punch biopsy which came back as non-invasive pagets disease. At this stage they put me on the cancer pathway (all very terrifying!) and reffered me to the hospital.  They were very thorough and did every test possible and took multiple biopsies - 13 I think and all but 1 came back as positive for pagets!   I only ever had an itch in one place.

    I am in my early 40s but was 39 when I first experienced symptoms, so don't really tick the 'pagets' boxes.  

    They gave me the option of surgery or immiquimod.  As mine was non-invasive - they recommended the cream.  It was really hard going the first time I used it for 16 weeks.  There was very little guidance from my consultant, GP, macmillan nurse and the web - It's just so rare - and you do feel really alone!

    My paget's returned within a few months ( I think I didn't apply the cream correctly) this time round I did it for 24 months!

     

    Thankfully, during my treatment Euni found me!  Then our group of 2 become 4.  :  ) It's made such a difference to have them as support and share our stories, they're such lovely ladies... I can see they've all got in touch with you already. It would be lovely to have you join our chats.

     

    Best Wishes,

     

    Shars x

     

     

     

     

  • Offline in reply to loel

    Hi again Cale

    had my 3 month check up,  first one, all clear but still uncomfortable in area of treatment.  If you want more in depth information about how the Imiquimod treatment affects one, do ask I was housebound a lot of the time.  
    shars1 and I can help you with how to help alleviate the painful affects of the cream.  I used it for 10 weeks in total with 2 breaks in treatment.

    good luck with whichever treatment you choose.

  • Offline in reply to Euni

    Hi there, so please to find to this group. I have just been diagnosed and had surgery 2 weeks ago. I feel so in the dark.

    Reading your posts I realise there is so much I don't know . I had my treatment privately through work but think maybe I should have stayed with NHS although the consultant was excellent. No discharge advice, have results on Friday. Never heard of mapping. Will ask Dr re this, wishing you all well xx 

  • Offline in reply to Bbear300

    Depends which county health authority you live in as to treatment also what initial biopsy shows

  • Offline in reply to Mariaz

    The initial biopsy was non invasive but will get full results tomorrow x 

  • Offline in reply to Bbear300

    Hi Bbear 300

    Sorry to hear you have been diagnosed with Paget's disease of the vulva . Hope your surgery went well. 
    I'm Jacie and expect you have read my latest post above which explains my pagets story . 
    I have never had any mapping done .
    I firstly had a punch biopsy when it was unknown what I had, this came back as Paget's disease of the vulva . Like you I'd never heard of it before and I was so glad to find this website and the great support I got from the other members . I'm sure you will hear from them too .
    Keep in touch with any questions or advice you might need . 
    Good luck with your results on Friday . 
    Best wishes Jacie . 

  • Offline in reply to jacie

    Thank you ladies, everything crossed for tomorrow xx

  • Offline in reply to Bbear300

    Hi Bbear 

     

    Sorry to hear your diagnosis.  I felt much the same there's so little out there, and as it's so rare even the consultants experience and knowlege is relatively limited and I think this also effects your care pathway options.

    This group has been so supportive and it's wonderful to have a group of ladies to chat with.

    Do ask us anything you want. I know I had so many questions.

    Hope your surgery went well.

    Shars x

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