VIN 3 diagnosis & no HPV

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Melly16
Melly16 Member Posts: 1 Member

Hi, I'm new here. I spent a few hours reading posts on here and countless hours on Google. I wanted to see if anyone else has a similar experience as I'm losing my mind.

I'm 43 - I've never had an abnormal pap. Negative for all variations of HPV. About 9 months ago I noticed a small fleshy colored growth on vulva area. I went to the dr and I was dismissed. Said it was a skin tag.. it continued to grow quite rapidly and was getting painful/uncomfortable. Finally got into a really great womens facility and the dr said - I do not know what this is, but my best guess is a skin tag. (LITERALLY no mention of anything else it could be) she agreed though it had to go as it was odd. Scheduled for biopsy next. I went last week for that. Ouch! But I was feeling better by day 3. I have several stitches from that, but dr said "she got it all and not to worry".

Well, my worst fear came true. I got a call yesterday- "I'm so sorry, I did not expect this AT ALL. I am shocked. You have VIN 3. More shocking, the margins weren't clear. I am now setting you up for an appointment with oncology. You'll have more biopsies and see what the treatment is from there. Do you have any questions? "

I was floored. Speechless. When I finally spoke.. I just cried and rambled questions she couldn't answer.

So if you've read this far, thank you! There's limited information out there and what I've found is that this is very rare and most often associated with HPV. All my tests for that were negative. My question is I guess, has anyone else been thru this? Do you have HPV too? I'm so so scared as all treatment options sound terrifying. I'm also soo scared about the margins not being clear as I was told they can't be sure if there's cancer beyond what they removed until more testing is done.

Thanks so much 🤍

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  • m_rabbit
    m_rabbit Member Posts: 1 Member
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    I have long-standing lichen sclerosus. My last encounter with VIN was found to be HPV-negative. Despite that, it was treated with imiquimod. Never again, as the lesion was somewhat internal, and the imiquimod went everywhere! I've just had a result of VIN3 on a biopsy, and will undergo wide excision surgery soon. I wish you the best!

  • Toast
    Toast Member Posts: 45 Member
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    Hey Melly,

    That was also my experience, except that I did have one abnormal Pap but still tested negative for HPV. I went for a follow up Pap six months after the abnormal one and a lesion was found (still no HPV). I had VIN3 and a had surgery to remove it. That was 13 years ago and thankfully I have had no further issues.

    I hope you are doing well. I know how shocking it is to get the diagnosis. It shakes your whole world!

  • gm7604
    gm7604 Member Posts: 1 *
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    I hope you see this. I am v3 positive and hpv negative. This is so confusing because the medical info online says that vin is hpv related but how can it be? Did you have surgery? Were you asleep during it ? Hope you are doing better

  • Forherself
    Forherself Member Posts: 999 Member
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    This board is very quiet. I have endometrial cancer but we check here once in awhile. I hope you can get treatment that is satisfactory. Hopefully, someone will answer you. I can comment on your wondering about vin and hpv relationship. It seems in cancer nothing is 100%. WE can have so many different mutations that it is hard to find treatments or statements that pertain to all. I guess it is why the doctors usually say we have to choose the treatment.

  • angelenaawbrey77
    angelenaawbrey77 Member Posts: 5 *
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    I've had unclear margins after removal of an invasive tumor. The margins were VIN 3. Due to unfortunate circumstances I let it go for a year before having another surgery which was my 3rd vulvectomy and that came back as invasive VIN 3. So you are very lucky they got it early. I hope you are still well. I've been fighting 14 years now. You certainly are not alone