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 Angharad.

I have had pagets disease for 2 years and they suggested I had  surgery.

I declined it as they said it would be repeated so many times.

Plus reconstruction surgery. I went down the route of a cream that I had heard about on a web site. Imlquirimod cream.

They were reluctant at the beginning but after a while Started  the course for three months then another three months with a brake in between 

It was sore painful and uncomfortable but I stuck with it now in for 12 months I have no sign of the pagets. 

I am monitored every four months and fingers crossed still ok  if after 5 years I will be free of it.

Hope this helps There is hope and a light at the end

Keep safe 

Mazdamad

My mums had this cream a couple of times too. She said the exact same as you, really uncomfortable and painful. 

Thank you so much for writing back. I just want her to have someone to talk to who can relate to what she's actually going through. 

Xx

Hello Angharad 

where to begin! I have had Pagetts disease for 2  years, after a being treated for Lichen Sclerosis for ages without success.  My  treatment was very different. After the biopsies I had an operation which went very well but then three months later I knew something was wrong and I had another operation. And then within the year a third operation. The first operation showed just two cells of cancer, subsequent ones had no cancer cells but lots of Pagets

. Then last summer I had radiotherapy. The complete area from back passage to the front. It was extremely painful but now healed up and I am checked on twice a year for three years then once a year for three more years.

I think the treatment varies according to your surgeon, your age, and  where about it is exactly.  From the middle going forward there is excess skin which can be used, but going backwards there isn't any and the options are more limited. Mine were all forward but with so many Paget cells he decided radiotherapy was best

there is another sufferer on this site and we now talk privately  - no holds or details barred! I'm very happy to talk with you or your mum who is probably  more my age - in her 70s

best wishes
I Euni 

That would be absolutely fantastic. Thank you so so much. She is so happy. 

How do I go about contacting you out of here? 

Xx

I've started it this end and I think you will get a message if not come back. Does you mother have an email address 

X E 

I've only received an email regarding this message. She has yes xx

I will explain later but about to have a FaceTime chat with a friend with  glass of wine. A regular Friday, Saturday Sunday treat amongst  us

I think you have to go on to the site where yr name is 

near top r h corner, press.go to friends

fillin my Euni etc.  Try it and see, must go as call. Comng through

Morning you have to do the next step

my friend and I had the same problem not being about to complete the link

they have come back to me and said you have to complete it

good luck x

Just introduced myself, your story sounds just the same as mine, posted under Mariaz I might need to post for advice as mapping in 10 days so should know before Xmas full extent of disease, it's nice to find other people who know what's happening.

Hello Mariaz join our little group of 3 who have all had this disease 

we are are 3 very different ages, different treatments but the same problems. I cannot write more now as must go to bed. I will tell the others snd I'm sure we can help you cope and will definitely understand 

will write soon. I am going away on Monday so things will be a bit hectic tomorrow 

best wishes Euni 

Hello Mariaz join our little group of 3 who have all had this disease 

we are are 3 very different ages, different treatments but the same problems. I cannot write more now as must go to bed. I will tell the others snd I'm sure we can help you cope and will definitely understand 

will write soon. I am going away on Monday so things will be a bit hectic tomorrow 

best wishes Euni 

Thank you,  my admission for mapping is not till Monday week, so plenty time to connect I'm lucky in Consultant being female, really helps.

Hi Mariaz

As Euni said you are very welcome to join our little group of 3 who have all had the disease . 
We have all had different treatments, one of our group in her early 40's had mapping done and was treated with a cream.  Euni and I are older than her and both had surgery but we are all well now. 
We all keep in touch and support each other so please let us know how your mapping goes and any other questions you may have . 
Best wishes,  Jacie

Thank you will get in touch after mapping I'm in my 70s would hate to be young to have this 

Hi Mariaz,

I'm the third member of the group!  Would also love to have you join our group!

Hope the mapping biopsies go well, I've had them a couple of times now.  I was treated with the cream. Twice now but different lengths of times.  I'm happy to talk to you and share my experiences and try and asnwerany questions too.

I know it's such a rare disease and felt so amazing to connect with Eunice and Jacie and be able to talk to others.  Made such a difference.

Shars x

Thank you for replying would like to join your group wondering how uncomfortable one is after mapping?  Praying surgeon doesn't go down with COVID as really want to know how extensive this is. Treatment suggested after mapping is cream at the moment.  

i was absolutely fine after my mapping.  Wasn't too uncomfortable at all :  )

The very first set I had I had 13, then they had to repeat them after I finished the cream, I think they took 9.

Then after it returned they only took a single biopsy and I began the cream again (but for much longer) and they did mapping biopsies again but just 6.

Hopefully your surgeon won't go down with COVID,  but if they were ever unable to do them I think a different member of the team would step in.  I've actaully had 3 different surgeons do mine.  Only the most recent time was it my actaul consultant who did it!

All 3 were very good.  I really didnt experience much discomfort at all immediatly afterwards at all. After themost recent set i was swimming in the sea 11 days later. Hope that helps.

X 

x

Thanks that's a great help.  Been told no swimming when using cream not very happy about that but will have to go with advice.

Yep I couldn't do much when I was using the cream was so lovely each time I stopped and I began to feel normal again.

The second time around I learnt to manage the side effects slightly better than the first time. I contacted my GP and they were much more helpful than my consultant. Would be great to find out how you managed the side effects. x

Thanks for that info,  my GPs so will probably message you but the Consultant I'm with seems good hoping will get specialist nurse help if I need it. 

Good afternoon Mariaz 

Hope all goes well with your mapping tomorrow , good luck and let us know how you get on . 
Best wishes,   Jacie.