I had a biopsy done a few weeks ago. Next thing I know is app made to see if I am ok for anaesthetic. Phone call today from surgeon to say I am to be admitted for radical surgery.Everything including clitoris taken away and lymph nodes. Have not had any scans. Have not yet had assessment. Feel things have already been decided. No one has examined me apart from doctor who did the biopsy. Am in bits!

I'm so sorry that you are going through this. It's awful how no one has taken the time to explain everything in detail to you.

I had a biopsy done a few weeks ago. I have app to see if I am fit for surgery. Got phone call from surgeon today saying that they want to take everything away including clitoris. I have had no scans or consultation. Is this right?

I had several biopsies then quite a wait for my surgery but it was during covid so everything was slower. I didn't have any scans before surgery only after. Then scans before and after radiotherapy and chemo. Not having a proper face to face consultation doesn't sound good.....did they tell you about the cancer over the phone?

Hi, i had a lump appear about 6 weeks ago- in that time the lump has gotten bigger and is hard but painless and no other symptoms. Went to the GP today and she has referred me to a gynaecologist under the urgent 2 week referral pathway and looked very concerned by the lump. I have private medical insurance so ive also asked them to arrange an appt with a gynacologist and tests and will go to whoever can see me first but i wanted to ask what should i expect at the appt with the gynecologist (can i expect blood tests, scans and biopsy on the same day?) And what happens thereafter. I was diagnosed with lichen planus a few years ago which hasnt yet spread beyond the legs but I have read this can increase the risk of vulva cancer so im really worried and in less than 12 hours ive gone through so many emotions (from thinking is the end to the gp has completely got it wrong!). What symptoms did you have, if you dont mind sharing, and were you able to work during treatment? 

I should also add im 39 and no children and now think this choice will taken away from me if it is vulva cancer. 

Hi

I had no lumps whatsoever. Mine was caused by the HPV virus which I have had (and probably still have) for many many years. The skin on my vulva was severely ulcerated and unbelievably itchy. I had pre-cancerous changes there for a number of years beforehand (called VIN). I've had these same issues on my cervix and the wall of my vagina.

I had the biopsy that found my cancer under general anaesthetic so it's unlikely that they would do that at your first appointment but I'd like to think that they would have a look and talk you through their plan for you.

I didn't have any scans before. I had a blood test at my biopsy pre-op and on the day of my diagnosis then several after during treatment.

Like you I'm 39 now ( I was 36 at diagnosis) and I don't have any children. The radiotherapy and chemotherapy have put me into early menopause but if it ever came to this for you there are options you can discuss to preserve your fertility.

Vulva cancer is a super rare cancer in women our age (and also quite slow to develop) but you've done the right thing in getting it checked out. Let me know how you get on and if you have any more questions. X

Sorry I forgot to mention.............I didn't work during surgery/treatment but everyone responds differently and I know people who carried on working through radiotherapy/chemo.

I went to the GP about something else and while I was there asked her to have a look at my vulva cos I I had been a bit itchy. She found a lump and referred me to a gynocologist. I had a biopsy (local anaesthetic). She phoned me a week or so later to say it was cancer and that I would be given an appointment to be assessed to see if I was fit for surgery. I  was then phoned by a surgeon who said that she was going to remove everything including the clitoris and lymph nodes. She has not seen me and seemed to think this was a done deal. I am in bits! Can't understand why this decision has been made without even seeing me. Have put off making a decision but have spoken to Macmillan nurse who has given me the number of a Gynie nurse specialist. Hope she will explain more as I feel railroaded into this. Strongly advise that you contact Macmillan nurse who will be able to answer your questions. Good luck.