My daughter is only 19 and has been diagnosed with VIN III which is the precursor of cancer. This is a nightmare for us,I have spent almost three weeks glued to the computer,searching for all possible treatments, reading on how the surgery is done, reading medical papers on studies done in the USA and overseas and finally researching all of the Pharmaceutical companies in the world working on a vaccine that could cure the cause of many vulvar cancers, that is the Hateful ugly HPV virus. There is also a percentage of vulvar cancers that effects older women and it are not caused by HPV but the treatment approach used is about the same.
I work in the medical field and I am a nut when it comes to research. I am the kind of girl who will always get a second opinion even if I liked the first doctor. Up until now this is what I have found. I do not want to sound too technical when I explain all that I have learned but I know how difficult it is to find information on this condition. I know how it feels to be alone with the fear of the unknown and no resources available. in a nutshell here is what I have learned.
Here clarified are some terms that can be confusing.
VIN stands for Vulvar intraepithelial neoplasia (same as dysplasia)
There are different classifications of VIN
VIN I is mild dysplasia (neoplasia) doc will keep an eye on it
VIN II is moderate watch it/or laser (preferred)
VIN III is severe or high grade surgery
What causes VIN ? The majority of VIN in younger women from sexually active adolescents to older women is caused by the HPV virus.
There is also a similar type of cancer that is not of viral origin and effects older .women
First of all, the good news. There are pharmaceutical companies scattered all over the world working on a Therapeutical vaccine that could eliminate the virus in people already infected with highly dangerous strains of HPV (16/18),this vaccines are being formulated to also protect and treat infections caused by other dangerous subgroups. The vaccines now available on the market are not to treat existent infections or cancer lesions caused by the virus. they are only for prophylactic use, which in simple terms means just for preventive use. they are Gardasil in the USA and Gardasil and Cervarix in Europe. I have read the results of the clinical studies and is believed that there should be a vaccine out in no longer then three years maybe sooner. I think we are blessed to be so close to it.
In the mean time if you have high grade vulvar dysplasia you need to take care of it with surgery. Do not take chances, high grade VIN is not a pathology treatable with laser,the oncologist needs to have tissue for pathology examination in order to see how deep in the skin and sub tissues the changes go. This is impossible to do if the tissues are destroyed by the laser. Any oncologist will tell you this. If you have high grade dysplasia (VIN III) do not let your gynecologist treat it,at this point you need an oncologist who specializes in gynecology.
If you have VIN I or VIN II, your doctor might use the laser. If he decides to wait for it to regress (not advisable especially in VIN II) please be be watchful for worsening symptoms like persistent itching and spots or warts on your vulva.The mirror should become your best friend and not only for the reflection of your face. Run back to the Doc if you note something new and make SURE he repeats a biopsy.
If your dysplasia is caused by the HPV virus and you smoke my advise is STOP SMOKING! I have been telling my daughter this for the past three years but she did not stop until 3 weeks ago when her doctor called her with the news. He said that smoking is strictly correlated with the fast fast advancement of the dysplasia,the oncologist told us the same thing.
If you have VIN III like my daughter, opt for surgery which is the safest approach to eradicate the precancerous cells. Your dysplasia also called carcinoma in situ which is Latin for cancer within site, is not yet deep enough to require a radical vulvectomy. With a deskinning (I hate this word) only the skin is taken off,as soon as this is done a pathologist which is on site not too far from the surgery room,analizes the removed skin to make sure the dysplasia is not deeper then one millimiter. If this is the case,the gynecology oncologist which is the one who performs the surgery will decide based on the pathology findings if it is necessary to perform a sentinel node test in tandem with a schintography which will yield more accurate results,in finding out if your lymphonodes are involved.If they are involved then removal of the nodes is performed.
If you are a young woman and your oncologyst is suggesting a partial skinning vulvectomy, she will probably suggest a graft which is usually taken from your thigh.To do this, a plastic surgeon will be in the surgical room with the gynecology oncologist. If you are an older woman and do not care much of how it is going to look down there, then your doctor would probably do a simple closed surgery, after excision of the area the margins will be pulled together and stitched. This is a lot easier and less painful,but my daughter want's to look as normal as possible given she is still so young so we have opted for the local excision,or also called partial deskinning of the vulva.
Very important is that you get a second opinion. The first gynecology oncologist we met with was just a year fresh out of school,we did not know until I looked him up on the hospital web site showing the year he had graduated. Very nice guy but not very many surgeries under his belt. The plastic surgeon he referred us to was also fresh out of school,nice guy but not very experienced.
We have two appointments next week with a gynecology oncologist also a woman with 26 years experience who will probably be able to do this with her eyes closed. The plastic surgeon also a woman,she has quiet a few years experience in reconstructive surgery. We are praying that everything is going to go right way. On our part we are doing our home work on the questions to ask before each appointment. Do not be afraid to ask. I know it can be very scary to read and find out about all the different aspects of VIN ,how the condition evolves and how the surgery is done,and about the recurrence rate.But remember that the more you know the more you will expect from your doctor and this can only yield better outcome.
I am trying to be strong for my sweet daughter who has a whole life to live. I cannot begin to tell you girls how hard it is for a mother to see her child having to go this type of ordeal. I wish this would have been my ordeal and not hers.
Blessings to all of you
Lina Giuliani