Saying hello

Hi Esmeralda2 and welcome to the group.

I’ve read your profile and you certainly have a lot to contend with. I had a different cancer- mine was cervical-but I wanted to let you know that you’ve posted in the correct place and it’s fine. 

I’m glad you’re doing ok after your surgery and hope your follow up appointments with consultants go well and that you’ll find out more from the pathology results.  I haven’t had vulval surgery but have had extensive surgery  to remove my own cancer (I do appreciate that AIN and CIN are precancerous conditions however). You may want to have a look at both the Anal cancer and Cervical Cancer groups where both of these conditions are discussed. 

I hope you’ll continue to heal well and recover, but please feel free to keep posting, and come back to let us know how you’re getting on. 

Sarah xx

Thank you for your reply.  You have certainly been through a lot.  I’m glad to read you’re doing ok now though.  

Yes, precancerous conditions.  I’ll look at the Anal cancer and Cervical cancer groups, thanks.  

I have what they call multifocal (something) as I have abnormal cells in vulvar, anus and cervix.  The plan is to deal with actual cancer first, then anal stuff and the cervix.  

Apparently, it’s uncommon to have in 3 areas, particularly if one is HIV negative.  I mention this because I kept being asked about my immune system and having blood tests.

I’m ok(ish) with it now and I hope beyond embarrassment but when I was first diagnosed I wouldn’t leave the house…. Oh dear! 

Thanks again x

You mentioned HIV, so I just wondered if you meant HPV, as they are two different things? I know about the connection between HPV and precancerous/cancerous conditions, but nothing about HIV.

However, you mentioned blood tests and there is no blood test for HPV, but there is for HIV. I just wondered what the connection was between HIV and your conditions? 

Multifocal just means found in a number of places, but of course the vulval cancer is the priority here. I can certainly understand your embarrassment given the locations of your issues- I was the same, but that was because I had an HPV driven cancer, and there is still stigma attached to that, even nowadays!

Sarah xx

Hi there, and thanks again.  I’ll go back to my profile and make it clearer.

yes, it’s all HPV related, that was a shock in itself as I’d never heard of it.  When the biopsies came back confirming vulval cancer, AIN3 and CIN3, the consultant explained was unusual to have in two places, let alone three.  When this does occur, it tends to be in people who have a compromised immune system and they asked my permission to test for HIV.  

I was so stressed about that, I just remember all that from the 80’s.  The macmillan nurse was very supportive.  Anyway, was negative.

Since, I have read (I’m not a trained medical person, so just my interpretation of published medical reports) that there are HIV negative women out there who, for whatever reason, get these genital HPV related cancers and pre cancers in multiple areas. The issue being, more could be done to raise awareness and do screening to pick up earlier. 

So, if anyone else out there with similar would be good to chat but also I’m more than happy to help anyone else.  I’m now over the stress and embarrassment as I understand it all much better now. 

I hope I haven’t gone on too much!  

Is it ok to post on other forums here? I’ve looked at Anal cancer following your advice.  

Thanks again xx

Hi Esmeralda2 

Thanks for clarifying that-I understand now. Hpv is an extremely common virus, estimated to affect at one time or another a huge number of people-in fact it can affect anyone who has ever been sexually active. Some can carry it but never to have cell changes, so will never know, but with cervical screening it is the first thing that’s checked for. There is no screening for VAIN and AIN that I have ever been aware of, but cervical screening for women is an important part of identifying the virus and any changes it has caused.

It’s generally thought that changes can occur when our immune system is low for any reason, and is not able to push the virus into a dormant state. Sometimes ladies report their first abnormal screening around the time of menopause for example. I don’t have HIV, but must have had a compromised immune system to allow the HPV virus to develop.

It’s absolutely fine to join and post in any groups, and you can also use the search bar-small magnifying glass at the top left of the page- to search for things like AIN. This will bring up posts where it has been discussed before. 

Sarah xx

Thank you.  It’s a learning curve…..

Hi Esmeralda2

I had biopsies taken off my vulva in Dec 2018 after a colposcopy, iwas told I'd got low grade changes on my cervix and dermatitis on my vulva and referred back to my gp..fast forward to Jan this year and I had a 4 day post menapausal bleed, my gp put me on 2 week pathway, when I saw the gynae/oncologist he said I should have been followed up in early 2021 but fell through the net due to covid! I had CIN3 on my cervix and had a LLETZ in March, they took biopsies off my vulva at the same time and they came back VIN 2, I was booked in for a WLE in June but was warned that biopsies don't go deep enough and they may find invasive cancer underneath, if they did then they'd have to go deeper and wider to get clear margins, when I woke from surgery I'd had an anterior vulvectomy, my clitoris and labia majora were removed! 3 weeks later had a letter saying it was all precancer and all successfully removed and an appointment to see consultant 6/09/24, I have soo many questions I need answered at this appointment!! I'm also back at colposcopy in October to see if the LLETZ worked, I'm 52 in October! I feel your anxiety and stress, it's the worry of multiple areas, you sort off feel like a ticking time bomb!! Wishing you all best for your surgery and treatment, sending hugs  

Hi. Thank you for sharing your story. You’ve been through a lot, particularly in the last few months.  I hope you’re coping ok both mentally  and physically.  We have our follow ups on similar dates. I’m sure you’re going to do this, I’ve been advised to write my questions down and make sure I ask them….  
I’ve had my surgery, recovering from that.  Bit anxious about appointment next Weds, it’s for the AIN3. 
All the best for your upcoming meeting with consultant.  Is the same consultant dealing with your VIN and CIN? Waiting is tough isn’t it?
Thanks for replying to my post.  Sending hugs too.

 Esmeralda2 

Hi Nicbo72 and welcome to the group. 

I tagged Esmeralda and I’m sure she’ll be glad that you’ve shared your experience. It must have been a huge shock to have the surgery you underwent, and no wonder you have questions. I hope you can get answers at your appointment as to why such radical surgery was required for a precancerous condition. I hope you been recovering well from this, and that you’ll let us know how you get on at your appointment.

Sarah xx

Thanks Esmeralda2 -we were posting at the same time!

Sarah xx