Pagets disease of the vulva diagnosed at 40

Hi this is my first time doing something like this but I' feeling very low and dejected at the moment and so am seeking support and guidance here.

A little of my history. Sorry if it's a bit long winded I'm not sure how much detail is needed.

Im 40, and have two young toddlers (3 and 1.5 years old). 

I first started experiencing itching in the vulva area in December 2018. I thought it may be the hair irritating it or something the itch as it would come and go.  After 3 months it hadn't stopped so went to the GP who checked me and said it didn't look sinister and prescribed a steroid cream.  This cream had no effect so I went back and she prescribed a different one which seemed to work the itching would stop and then come back.  So then I returned in May and she referred me on to the Community Gynaecologist.  He examined me and didn't think it was 'sinister' and prescribed another steroid cream.  Which worked and I continued to use until September. When it stopped having any effect.

I returned in October and as the creams were not effective decided to do a biopsy, even though she also felt it didn't look worrying.  She took one biopsy and in December the results came back as Pagets disease. 

From my reading and what i have been told it's a very rare type of cancer usually seen in people much older and post menopausal.  She referred my onto UCLH to have the biopsy rechecked.  they examined me just before Christmas and reviewed the original biopsy.

I returned this Thursday just gone for the results and it was confirmed. This biopsy showed it was non-invasive.  They had an opening for Friday to do a mapping biopsy. Which they needed to do to check which type it is in the entire area.  They also checked my bladder. And will do colonoscopy before I get the results in two weeks time.

The consultant showed me pictures from my surgery of the extent of Pagets ( I knew it was a wide spread cancer but i wasn't quite prepared to see such a spread also showed me all the 11 Biopsies she took - which I hadn't expected either.

We spoke of steps forward.  The thought of having such major surgery that I would need to see a plastic surgeon terrifies me because the anatomy down there would be so changed.  It terrifies me that they cannot know if they have removed all of the cells. And has a high chance of returning, especially given my age.

Obviously I know I need to be positive and hopeful, with two young children. My partner is supportive, but calm and doesn't really know how to deal my fragile state other than to say we have to wait. But my mind is jumping to an obvious conclusion.

I just really wanted to know what others have been through. Your experience of treatment, did you have the combination. What was recovery like.(I was told i'd be in hospital for up to a week after).

The consultant said the urethra  would possibly be shaved back and also the anus maybe affected - I wondered how this would effect my daily functions? And am I then more prone to infections such as UTIs etc. because of the skin that protects the vagina being pulled.  She also said my clitoris would be removed  - It worries me that my partner and I will lose that type of intimacy.

Sorry for the essay. But that's where I am at the moment.  Any advise or experience or knowledge anyone could share would be really appreciated at this moment.

Thanks x