Vulvar Cancer Support Group

I also just found out I need an asperation on my left breast they found a cyst with fluid. Two of the vular biopsies is also infected and they put me on cipro.

Littledeer,

Hang in there!!! I just had the surgical excision of the left vulva, biopsy of the right vulva and laser all done at the same time on March 20th. I will tell you that it is painful, the laser causing burning. However, I was like you and scared to death. The recovery has been slow but not as bad as I had imagined. The combination of pain meds, lidocaine, & silver sulfate (burn creme)does make it all managable.

Hello. I just had a colp at MD Anderson last Friday. I was also suprised they did not look at my cervix or any further than my vulva. I was suprised. I had a biopsy taken so I do not have the results yets. I had one in Jan and Feb. I have Bowen's disease, Squamous Cell Carcinoma in situ, It is grade 3. So I guess it is the same as VIN 3.
I am so sorry you are going through this and it is so scary... feel free to write me anytime.
Judy

I am in recovery from having my vulva and my cervix lasered.(3/24/09) Don't sweat the laser procedure. I was back at work a week after I had it done. Don't get me wrong I still have to take it easy but the pain wasn't near as bad as I thought it would be. Take lots of epson salt baths and get you some dermoplast. It has been a life saver for me. Everything will be fine. I was scared to death too. I'm here if you have any questions.

Thank you all for responding, What we woman have to deal with?!?!? Now I am being told that out of the 6 total biopsies that 5 were VIN type 1 low grade and nothing needs to be done to them but the one that was VIN type 2 high grade, needs a surgical excursion and if it comes back good just watch me every 6 months but if not then I will need laser around that area. QQQQ Has any one here been told what type of HPV they have my Dr. and my friends Dr. said they don't test for that this is from 2 totally seperate locations. I am in New Hampshire. I am afraid to have sex EVER again what if my boyfriend has a diffrent type of HPV that causes the same thing???? My Dr. says condoms do not protect you from these strains???? I just started dating this guy for like 5 months now and se came close to having sex a couple of times but did not do it so was I exposed to what ever strain he has already??? I am so confused do you have to have the guy keep his underwear on and wear a condom to have sex??? I am 42 BTW newly divorced 4 years ago. I am also sorry we are all going through this pain!

I wanted to comment that my biopsy sites got infected too..I was on antibiotics for 10 days. I felt horrible. : ( sorry for you.

Are you sure you have HPV? have you had a test for HPV dna High Risk? It is only the High Risk strains that cause cancers. You can get VIN and SCC from other than HPV. That is not discussed much. I am non HPV and have this. There are other risk factors.

I have been divorced for years and am single also. I have been in a committed relationship now for 2 years. I think with a new partner a condom is a good idea no matter what the Doctor says.

Sending you good thoughts....Oleander

Hi Littledeer, I am a 38 year old woman who went through laser treatment for one whole side of my vulva and surgical removal of a 3x3cm VIN III tumor next to my vaginal opening 4 years ago. I have since joined the Siver Ribbon Foundation for Gynaecologic Cancers (NZ) (http://www.silverribbon.co.nz) to educate myself as much as possible on this cancer, and to give online support to those who need it.

To help give you an answer to your uncertainty on HPV and its relation to VIN & transmitting to others, I can not advocate unsafe sex, but would suggest that you consider being mutually well informed on the subject, then look at coming to a mutual decision about your sexual future together. Here is some info to help get you started!

Depending on the study you look at, HPV is found in between 3 and 7 out of every 10 vulval cancers (30 to 70%) and most cases of VIN. So, it is an important cause. Even so, about half of all invasive vulval cancers diagnosed are not related to HPV infection.

HPV is passed from one person to another during sexual contact. So it can indicate that you've had some sexual activity, but this doesn't mean it's a sign of promiscuity. There are many different types of HPV, but some are more likely to lead to vulval cancer than others. HPV types 6 and 11 can infect the female and male genital organs and the anal area, causing visible genital warts. Women with these types of the virus are not likely to develop vulval cancer but some women do.

Women with HPV types 16, 18 and 31, as well as some others have a higher risk of developing genital and anal cancers. Infection with these 'high risk' HPV types does not usually produce any warts or other visible signs until precancerous changes or cancer develop. So you usually don't know you have been infected with it.

HPV is a common infection. Around 8 out of 10 people (80%) in the UK will be infected with the HPV virus at some time during their lifetime. But most women infected with HPV do not go on to develop vulval cancer. For many people the virus causes no harm and goes away without treatment. It is only when the infection won't clear up that sometimes there is a problem.

The good news is that there is now a vaccine that can protect against HPV infection. So, in the future, we should see a fall in vulval cancer rates. This will take some years to show up, as vulval cancer can take such a long time to develop.

I hope this helps! :)

I have had 8 biopsy's and one surgery and have to go back for a lesion they found. They are going to try and take it off at the doctors. My doctor is awesome and she is bringing in a oncologist. to take a better look at the lesion. Everything that you are going to have or have had is what they should be doing. Hang in there and don't get depressed and I know how you feel it sucks. If you have any more questions e-mail me at honeybeelovemuffin@gmail.com or here.