Extra Mammary Paget’s Disease of the Vulva

Hi NewRose and a very warm welcome to the online community, but I am so sorry you have found yourself here. I have just read your profile. Thank you for filling in that section, it really is helpful for someone trying to answer any questions you may have, or for other people looking for similarities to their own journey. 

What a journey you have been on already.  All the uncertaintity alongside the pain you must of been feeling. I am so glad that at last you have some answers to why this has been happening. It is good that you have been fast tracked over to gynae, and that you already have scan and oncoligy follow up appointment.  I know how scary this waiting time is, but I know you will feel so much better once you know exactly what is going on, and a treatment plan in place. I hope the emulsifer spray is helping.

Take care

Thank you, Chelle. It is so nice to hear from you. I’m sure I will be back here with questions once I start more tests and scans. I am not looking forward to the mapping biopsies of the vulvar area having had one biopsy there already! But hopefully there will be people with experience and tips to ease the discomfort afterwards. 

A bit of progress. The CT scan showed a lump in my tummy possibly on an ovary. After a 2 week wait worrying, I had an ultrasound which showed it was a fluid filled ovarian cyst. It is large - 8cm by 5 by 6 so I don’t know yet if it will need removed. It doesn’t bother me. All blood tests were normal. I am still waiting for results from an MRI and a mammogram. So still worrying about these. 

In terms of the EMPD I have found a women’s Pagets group on Facebook. It’s private and includes 75 women from all over the world, maybe 3 or 4 from the UK. They discuss treatments and I think generally favour trying Aldara before thinking about surgery but different gynaecologists have different opinions. Since Pagets recurs it would seem to me that trying less radical options first would be sensible. Some have had photo dynamic therapy. If they have a dermatologist involved they are more likely to be offered Aldara. 

There is also quite a bit written about the HER/2 protein recently. This is found in 25% of Pagets patients. They can be treated with Herceptrin with some success. 

Reviews of the research by NICE suggest surgery versus Aldara or imiquimod have similar results. A lot to think about!

Hi would you mind if I asked what emulsifying spray is. And for which symptoms? May help my mum. Sendundubg virtual hugs x

Hi 

The emulsifying spray is called Emollien and my GP gave it to me in prescription but I’m sure you can by it. I have very itchy dry areas from the skin cancer and it is good for relieving the itchiness and putting some moisture on. One spray does. Lots of things I have tried just give me a reaction. The best ones so far are Hydromol emulsifier in the shower and then Epimax cream on the itchy area afterwards. But I also found I can’t use too much or it gets a bit too sticky and solid later. Once in the morning and once at night does with a top up in the daytime if I feel irritated. I hope it helps your Mum.xx