I know I should be asleep (it’s 2.30am) but 12 hours ago, I got the dreaded call. They found cancer in the biopsy I had 6 weeks ago!
I had a very painful lesion on my clitoris since October and despite calls to my GP, the referral and biopsy didn’t happen until 8th March! I was not expecting the call … assumed that so long had passed, it would surely be ok.
I’m being referred to Queens Charlotte Hospital and all I’ve been told is I’ll need an op under general anaesthetic and it’ll happen quickly. What happens next? How do I know what stage I am? There are some pretty horrific stories of chemo radio etc and side effects. But the hospital who called (dermatologist at the local hospital) seemed pretty vague.
soooo many questions! I mean, I’m an hour away from London, surely that means it’s bad right?? If I’m being referred there??
I’ve told my partner, my 19 year old son and my best friends and they’ve all said I need to keep positive which I’m intending on doing …. But I’d just like someone I can be honest with and right at this moment I’m bricking it!
thank you for listening xxx
Hi Shelly1234,
I am sorry to hear of your diagnosis.
It is hard to say what will happen next, but I can tell you what happened for me. I had my biopsy and then had a wide local excision under general anaesthetic. You say you’re having surgery, so it sounds as though you’ll have something similar. Although surgeries do vary- some ladies have all of their lymph nodes removed at the same time, others just one or two, I didn't have any removed during first surgery. I had a second surgery to have 2 lymph nodes removed. Some ladies have a vulvectomy, others a WLE like myself. Have they said what surgery you will have? Either way, you’re likely to have a pre-op appointment and they will get you in for surgery as soon as possible. I also had an appointment to meet my surgeon as it wasn't the same team that had arranged and performed my biopsy.
I didn’t find out my stage until after my surgery. My biopsy revealed VIN3. However when they removed the entire lesion and biopsied that, they found stage 1B cancer (this was a provisional staging). Due to them now realising it was cancer they needed to remove a lymph node from each side to give me final stage. If it was in my nodes then my stage would been higher. So in short- from my understanding they needed to complete my surgeries to give an accurate stage.
Due to mine only being stage 1B I didn't have chemo or radiotherapy, so I can't comment on how that is.
I was referred to a hospital 1 hour away too. My understanding was that due to it being a rare cancer I was being referred to top specialists.
I hope I have been able to answer some of your questions. I found there were no clear-cut answers initially and I found this very difficult. Things weren't always explained unless I asked. To them, it's common knowledge, to me it was foreign. My biggest piece of advice is to start noting down your questions. Then you'll have a list of questions that you can ask at your next appointment. It is very easy to forget to ask something without a list as there is a lot of information to take in at the appointments.
I am here if you would like to chat or have any questions.
Take care.
Hi Shelly1234,
No worries at all, I know how daunting it can be.
I am doing well now thank you 
. I still have regular checks ups, but so far all is well.
My recovery was probably around 6 weeks. I think it took longer as my wound become infected and I also done too much, too soon. So I would advise that you listen to your body and don’t push yourself too far. I could do more as time went on, but to be able to do everything I was used to doing was around 6 weeks. . I was able to come home the same day with my first surgery and I stayed for 1 night after my second surgery. I think it can vary quite a lot though depending on the person and the area to be removed.
I could be wrong so please don’t quote me on this, but I think moderately differentiated is referring to the grade of your cancer. My cancer was graded and staged. If I remember correctly then the stage was the size of the tumour and how far it had penetrated the skin (although it didn’t look like what I would expect a tumour to look like). The grade is how different the cells look.
I know the feeling well of having lots of questions and also kicking myself at the time when I hadn’t asked something. Do you have a specialist nurse? I found mine to be great and she was able to answer a lot of my questions.
Hopefully the hospital contact you soon with an appointment so that you can ask all of your questions.
