Hello unicorn,

Welcome to our forum!  I hope others who have had the same condition will pick up your post soon and share their story with you. We had a member who posted about being VIN3 quite a while ago, but perhaps you could respond to her and see how she is getting on? You can find her posts here and her original thread is here.

We have another useful resource which is our cancer nurses - they are available to help with any questions you may have about your treatment options. Do give them a call on freephone 0808 800 4040 Monday to Friday 9am to 5pm or you can also drop them a line in the Ask the Nurses section of our forum.

Best of luck making those difficult decisions and I hope this forum will be helpful to you. I will now let our friendly forum members come and say hello to you!

Best wishes,

Lucie, Cancer Chat Moderator

Hi there.  Just joined the forum and wondered how you were doing?

I had what I thought was a straight forward surgery for removal of a vulvar lesion and it came back from the lab as High Grade VIN,usual type.  I'd never heard of it - and it seems that it is indeed very, very rare.

I finally got to see my specialist who says doesn't look like further evidence of VIN currently, but she'll see me in September.  I must say, its been such a worry - and it seems that info out there is so out of date, if you can find it

My specialist says they are not automatically doing additional surgery these days as its disfiguring, the VIN will probably come back anyway and it doesn't mean that it will turn into cancer.  So, its a watch and see programme for me which will last for years and treatment will be on an when necessary basis

Love to hear how you are doing

I have had a recent biopsy as the dr suspect I may have VIN 3. I am currently awaiting results of the biopsy. I am so worried it may be cancer. 

Hi VIN 3

I had a wide local excision operation on the 25th January and its been confirmed I have VIN 3 with changes so I'm being referred to a vulval specialist. My own stupid fault as I have left it for 12yrs, because of embarrassment and thought it would go away on its own. I finally had a letter yesterday!! Even though its VIN 3 they can't see any obvious signs of cancer. Since Christmas when I first told the Dr everything has happened so quickly!! It does feel scary and because it's rare there doesn't seem like anyone to talk to. Also when you do search VIN it does come up with cancer. Very confusing. I TOTALLY understand your feelings but our NHS are fantastic.

Big hugs and hoping you get your results very soon xx

Hello i was also diagnosed with vin lll  and im now a waiting the opp they think it will be next week. I was wondering if you can help me pls and let me no how you felt after the operation was you in pain could you walk im a single mum so im worrying how il be after   and do you have follow ups. Same as you ive had mine for about 14 years now. When they done the biopsy that was bad enough i cant believe how swollen it was down there and it hurt for like 3 to 4 days. Will it be the same sort of thing or a bit worse as they cutting it away. Hope you had a full recovery and doing well too. X

I was diagnosed with vin3 a week ago I have to have surgery. I also would like support and a understanding of what's going to happen. I was just wondering if you had a op. If you have I hope it went well. There's very little explaining of  what vin3 is. Some say it's rare and others say it's because it doesn't get reported to GP'S . If anyone knows more, please share your experiences. Thankyou... Worried

Hello firstly i just want to say sorry to hear this. And yes there is hardly no information on it. I have had my opp so i can tell you what to expect im so happy i can help because thats all what i wanted. It was day surgery i went in at 7.30 but didnt go down till 12.30 i was worrying like mad i couldn't stop weeing! When it was my time to go down went into the room where they give you very good pre meds that made me feel nice and before i new it i was gone so that helped so much . Woke up at 2.30 all went ok . I was a bit sore but they give you so much anaesthetic down there to last for a few hours i had stitches.  Was aloud home a few hours later i just wanted out of there . The next 4 weeks wernt very nice the stiches were very uncomfortable and as a week went by i noticed they removed vin in 2 different places it took about 6 week to fully heal down there and for the stitches to fully dissolve. I have my next hospital appointment in march for a follow up ive noticed they missed abit so im guessing il have to have it done again. It looked a bit strange too but in time the swelling went down and it looks normal now. I would say keep topped up on painkillers. Its its on the outside it will heal pretty fast but the one in side took a long time to heal. I found a warm bath helped and when i went to the loo i would get a jug and pour warm water down there im mot going to lie it smelt abit for the 1st week or so as we cant bath to day 3. Its uncomfortable but manageable. I also got bad thrush after the opp found that horrible . Now i feel burning sensation on one of the removal of vin and the other bit where they missed a bit is still itching . Its not nice to go though but they knock you out before you even get to the theatre room so it saved all the embarrassment. All the best and im here if you need to ask any thing. Took me a while to find my log in detail but happy i did so i and you will be able to help more people. I dont think its the end of the road for me but at least they are on it and it was caught very early. Xx

When they gave me my biopsy results he told me it's precancerous but warned me they may find cancer once they do the surgery. I'm having to go to a different hospital to see a specialist. I'm a bit of a over thinker  and I wish he hadn't told me they could still find cancer. . Did you get warned it could still be cancer. Its probably nothing. They told me 4 to 8 weeks to wait. I might go mad before then. Thanks for replying. Much appreciated. 

Yes they told be its pre cancer cell and can turn to cancer any day. Im from ipswich so i saw the gynaecology at the hospital had a biopsy taken 4 weeks later i was called back for the opp in the same hospital.  Maybe your hospital dont have a gynaecology ward? They removed it well they missed a bit but then had a follow up letter to say it was vin 3 and wasnt cancer. I left mine for like 12 years so im taking it takes years till it turns to cancer but it still makes us feel horrible knowing we have cancer cell. I also had cancer cells on my cervix 12 years ago and to have laser and half of my cervix cut away no i have hpv virus and in march i will have to have treatment for that has ive had it for 3 years now and my body has not thought the virus off on its own . But she said hpv could be linked to vin 3 or the vin 3 has formed hpv on my cervix.  Not looking forward to this year at all  . I hope i have helped answer your questions.  No point me saying try not to worry easy said than done. Just be brave xx

Thanks. Hope all goes well for you. I won't lie this is so stressfull