Vulvar Cancer Support Group

You should ask for the High Risk HPV test. Warts are usually from low risk HPV but it is very important to be checked for High risk.

Wait and watch can be done with VIN1 through VIN3. I have VIN3 and they are watching and it is nerve wracking....I do not have symptoms like you do which I am grateful for. Mine is a silent VIN.

Get a second opinion if you can... different Doctors treat it differently......Oleander

I Had VIN 1 over 15 years ago that was silent, I had no symptoms. My Dr. did not want it to advance and had me in for Lazar surgery the following week. Over a year ago I had itching, soreness, bumps that hurt. I now had VIN 3 my Dr immediately made an appt. with the oncologist. He then took more biopsies and found that I needed to have surgery. I went in for surgery to remove the cancer tumor. Which I had no idea it was a "tumor" but was told that is what cancer is. Freaked me out!! Anyway....I had surgery done and the sides were not clean so I had more surgery and they removed part of my vulva (No you can not really tell) I had the side margins come out clear, but the depth is uncertain they could not get a clean margin. I had UCLA and Stanford on my case, both with different results from my biopsies. I then had my case go to the Stanford Cancer Board and they could not determine if the cancer had gone any further. They suggested I get my lymph nodes in my pelvic area taken out or have a full vulvaectomy . Because I am in my 40's my Oncologist did not want to be that drastic so I wait. I am no longer sore and can ride a bike again! I go in every month for a check up and sometimes a biopsy. Although now my insurance premium went up so high I had to cancel my insurance. So I am going every 3 months. I am not sure how long I have to do this. BUT I did have the surgery and I did have the lazar surgery. Not one of my doctors had me "wait" to see what happened? I do not understand that. I waited to long to see a Doctor after I had my symptoms the second time. Which is why it turned into VIN 3 and may have gone into my Nodes. Do NOT WAIT is what all the doctors at Stanford told me. This is a rare disease and some Doctors do not understand it. I hope this helps, I do not want anyone to wait! Go to another Doctor.

Thanks for your responses. I have an appt in two wks and will ask for the hpv test. I have two little girls who are my first priority and thus my health is a top priority. My symptoms are a little worse than what sent me to the dr in January at which pt I was told I have VIN I. I have been afraid that the severity in symptoms indicates some advancing between stages. I find it interesting that each of you were at different stages with NO symptoms. How did you get diagnosed? Just appearance, I guess.

I just want to be here for a long time for my girls and to have a decent quality of life (these symptoms are depressing)and I can only imagine the amount of money and time this is going to cost me.

Thanks again for your time!