VIN 2

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Hi. Is it possible to have HPV related VIN without ever having been told you are positive for HPV? I'm up-to-date with my smears and have never been told I have HPV but have just been diagnosed with VIN 2. I don't yet know if it is dVIN or the HPV related type and my consultant appointment isn't for a few weeks yet. I don't have LS and I'm 43.

Thanks

  • Hi Cls1979,

    Thanks for getting in touch and welcome to our online community.

    It’s understandable to want to know whether it’s possible to have HPV related VIN when HPV has never been mentioned after smear tests.

    VIN2 and VIN3 are now called high grade squamous intraepithelial lesion (HSIL). You usually have treatment for HSIL. This is because there is a risk that the abnormal cells may develop into cancer over time. But the risk is low. 

    We know that there are certain risk factors that can increase the chance of developing VIN. However, having risk factors does not mean that it will develop. And not having risk factors doesn’t mean that it won’t develop.

    We also know that HPV is the main cause of HSIL and that if the vulva is affected by HPV this can develop into HSIL

    Unfortunately, I haven’t been able to find an answer to your question. Your consultant may be able to explain why HPV hasn’t previously been mentioned and confirm that this has been tested for as testing varies in the UK:

    HPV primary screening is carried out in England, Scotland and Wales. This means that people with a cervix now have a test for high-risk HPV at cervical screening.

    Screening is different in Northern Ireland. A test for HPV is done if the sample of cervical cells taken during screening show low-grade cell changes.

    Your consultant should also be able to say if HPV can be present on the vulva only.

    I hope this is helpful.

    Sending best wishes,

    Carole, Cancer Information Nurse Specialist 

     

    You can speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email

    Ref:CF/HG

  • Many thanks for your reply. Im terrified it's dVIN even though I'm younger and have no LS. I know that dVIN has a higher reoccurrence rate and is more likely to progress to cancer so just trying to settle my mind a bit I suppose. Is dVIN categorised as 1/2/3 as well or is that just HSIL do you know?

  • Dear Cls1979,

    Thank you for getting back in touch with us. I’m Alison one of the cancer information nurses on the support line here at Macmillan.

    It’s understandable that you’re worried about what type of VIN you may have and the likelihood of recurrence.

    The grading of VIN describes how deeply the abnormal cells go into the skin so essentially both HSIL and dVIN should be graded like this.

    I appreciate that it’s easy for me to say but try to take this one step at a time. It’s only natural that you want to be well prepared for your appointment and what to expect so if you’d like to talk this through some more, please don’t hesitate to give our nurses a call on the support line.

     

    Best wishes

     

    Alison P, Cancer Information Nurse Specialist 

     

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm)or send us an email. 

    Ref/AM