Vulvar Cancer Support Group

Hi, I don't have any advice because I'm just starting down this road too. I don't know about you, but this is the last thing I would have thought I had to worry about. I had endometrial cancer in 11/06 with surgery to remove everything and do cancer staging. Thankfully there were no mets anywhere and I have just been getting checked 3-4 times a year (PAP & pelvic). So when I went to my gyn on 10 days ago for that checkup, I was HUGELY surprised when she was looking things over and said "I think you have VIN. You need to come back for biopsies." I didn't have any symptoms...nothing. I knew there were a few little bumps on my labia, but hey, I've never looked at any other woman down there, so I figured it was normal. My biopsy appointment is scheduled for 5/4, but that seems like a long time to wait when I've already been stewing over this for 10 days! So I'm thinking of moving my appointment up. This all seems like a bad dream (again) and I'm glad I found this site, because I know it really helps to walk through these things with people who have been there before you. I totally understand your husband's reaction, too. I'm not married and no BF but I have a 21 y/o son who totally freaked out with the other cancer and now he is having a hard time with this situation.

Hello Nervous, and Melissa,

I am new to this also since January but I have studied everything there is on it plus belong to another group where there are many with this. The waiting and watching is the worse part. I finally fired both my Doctors and went to MD Anderson Cancer center. I also had my slides reread. I have positive margins which that freaks me out but they are watching and I have had 3 biopsies done. I have Vulvar Bowen's disease, Squamous Cell Carcinoma in situ Grade 3 and VIN 3... I never had any itching or other cancers. I am also HPV negative. Have they checked you for HPV high risk?

You should have a HPV test, Colopscopy done and biopsies if needed. They also did a pelvic and abdominal Ultrasound on me too. The lack of urgency has been a concern to me.

It looks like treatment is usually in this order if needed depending on what the VIN does: biopsy, wide excision, Estrace cream, laser , FU5 or aldera cream, chemo and last radiation. If you go to gyngals there are some articles on it.

VIN3 can metast. The Doctors all say it is doubtful and you do meet people who have it and it did not come back. But there is a percentage that it does travel so that makes it worrisome. It needs to be followed closely.

Let us know how your biopsies come out.
Much love to you........ Oleander

It's nice to "meet" you all. I can't really offer advice; only share my experience and relate to each of your fears. I have had carcinoma-in-situ of the cervix twice (treated with cone biopsy and later cryosurgery). Now I've been diagnosed with VIN III/carcinoma-in-situ and just last week had an excision. The margins aren't clear and there is some concern this may be in the anal area, as well. While I am referred to have the anal area checked further, my impression is that the oncologist wants to just observe the vulva every three months for any further changes. My excision isn't healing well, so he won't see me for another 4 weeks. Obviously I'm terrified and confused. I just want it all gone!

My cervix was checked for HPV and found to be negative. How does this spread to these adjacent areas?

All of you, please know your sharing helps many other people feel less alone! Warm wishes, Debbie