Tried to put off posting for as long as I could

Donna, VIN III is urgent. From my experience VIN III has always meant wide local excision. I live in the states too and travel to Mayo Clinic in Rochester Minnesota. Not all VIN is HPV related, mine is not, mine is caused from lichen sclerosis, which is an older ladies disease but I first got it when I was very young and now I will be 47 this month. I have had 15 vulvar surgeries since 2008 and vulvar cancer 4 times. I don't want to scare you but if you have VIN III you need to be seen again and continue with follow up care often often. Every hospital treats VIN differently and you will find on this site they do different things then they do in the states too, but these ladies are absolutely amazing. They know your feelings, and understand what you are going through and you can ask anything and someone or multiple people will have a similar experience or just be here to listen to you. Just remember, only you know your body and changes so if you are finding even more white patches or lesions you need to be seen and they will probably need to do more biopsies. Keep us posted and keep asking questions. I am sure more people will have advice for you as well. Lisa from Michigan

Lisa thanks for replying to me. I know VIN is urgent and I am being treated. My spots are tiny. In fact I have had to direct the doctors where to look. They are like the size of a dot a pen would make. Seriously the doctors are surprised I even found them. And I know they are related to HPV. It's unfortunate but true. I've been tested when I got the bad pap. I go back to the doctor this Friday so I am not sure how much more urgent I should be about it. I've heard great reports about Aldara but I think my immune system does not work right anymore. So I may have to have the surgery. I really think my doctor was trying to avoid it because of the size of the spots. They are so tiny that a cream if it worked would really have been a great way to go. But I guess not. Hopkins is pretty great. I used to work there as a post doc. Now I've been treated there for cancer of the thyroid, the CIN and now VIN. I feel like it is my second home. 

How do you deal with all of the surgeries? I am not sure how to deal with it. I still have small children and need to deal with child care for them when we have to go to Hopkins. We have no family close. 

What a difficult place we all find ourselves in. Have read of some pretty horrific treatments and surgeries others have gone through and my heart goes out to them all

I have had two very minor surgeries. Firstly to remove a lesion and secondly to correct the first surgery. All is now well.  The surgery showed I still have VIN 3 and until my check up last week had sleepless nights, worrying about all the surgeries I may have to endure.

My visit to the lovely expert at the vulval skin clinic was reassuring. As she  told  me  she  sees vulvas every single day and is the regional expert on this condition.  As we all know VIN 3 will constantly reoccur until you are clear of the virus. I'm told that I will be seen in clinic for life

But what my specialist told me was great news. She does not believe in disfiguring surgery. VIN keeps coming back, so as fast as you remove it, it comes back. What she looks for with colposcopy is cancer, not VIN. She will only remove areas  where they are painful or of concern and she knows she can make a difference.

Vulvar cancer is even rarer than VIN, with just over 1000 cases in UK annually.  So, whilst I would NEVER be so bold as to say that surgery should be avoided for VIN,  it certainly  begs the question as to why so many people have to have horrific surgery or chemical burn treatment the moment they are diagnosed.  I just worry that so many people don't seem to be given an option and that having VIN 3 means surgery or aldara treatment.

Trusting this post will not cause offence to anyone, especially those of you who have suffered from vulvar cancer. This is not my intention.  But for anyone who might be wondering what options they have, perhaps to consider a second opinion before you go ahead

Thinking of you all with this worrying condition x

Thanks for the reply Maisie. I have doctorate in cancer therapeutics. And I think I know too much and scare my self a lot. I do know that the rate of VIN diagnosis has skyrocketed in recent years. Up by 400%. But there has not been a concomitant rise in vulvar cancer. That means the treatment and vigilance in watching the spots is working and I think that's a good thing! I go to the doctor on Friday and will see what she says. I have a list of things I want to discuss, one of which is the partial response of Aldara and the dosing she gave me. After that we will decide on a treatment plan. I want to be aggressive with my treatment because I am a worrier and have a difficult time getting my brain to stop. I may seek out some therapy just to get my head to settle. I keep telling myself the odds are in our favor because we are the lucky ones. Ladies who aren't treated are more likely to progress or not catch it in the earliest stages of cancer. I will report back to what the doctor wants to do. Thanks for replying again!

Donna, I am so glad you are going in this week and will pray for the best outcome for you. You asked how I deal with all of the surgeries; I am blessed with a wonderful family and boss. I only have one child and she is almost 21 and still lives at home. My parents, in-laws and sister are all close by and help take care of me after the big ones. My husband is home most of the time but sometimes has to stay out of town for work which is when my family takes over.

It would be very hard with little one at home. Trusting your doctor is the biggest hurdle. I had so many doctors, three surgeries before going to Mayo Clinic and have had 6- 2nd opinions... LOL. University of Madison WI told me last year that Mayo is the best. I went to U of WI because I did research to find out where the largest portion of American Cancer Society funds goes to for Vulvar Cancer Research and it was there. They only get $30,000 which is peanuts for cancer research; but I hope that changes as Vulvar Cancer becomes more and more known. 

As you can see from some of the replies, so may doctors treat VIN III different. Many people here can't believe I haven't had radiation yet but have had Cancer 4 times. My Doc says it's an absolute last resort for me because she knows I faithfully go to my apts every 2 months...she said if I wasn't a reliable patient, she would've already done it. You will know what's best for you, especially with your education background.

I am here to listen to anything you want to talk about.

Take care and good luck Friday Donna,

Lisa

Good luck and I look forward to hearing what you decide to do. Take care x

Donna, how did your appointment go?

Lisa

Thanks so much asking Lisa. My appointment went better than expected. My doctor sat down and talked to me first. I explained my concerns with the dosing and then told her that I went ahead these last few weeks and did the 3x per week and she agreed that I did the right thing. I even brought a drawing I made of my vulva (never thought I'd do that in a million years). She went over it and then she did the colposcopy. She was astounded by my results. She said I only have the tiny spots left that I can see and that the field effect she'd seen in June and July went I last went was gone. Because the spots are so teeny she doesn't want to do surgery. She did a pap of my cervix and vulva. Then told me to continue the treatment for at least another 4-6 weeks 3x a week. Then I am to call and report back how things are going. I will probably go back in Jan. She wants to wait to see the results of my paps. I am pleased so far. I am going to wait for my results and then see if I should go for a 2nd opinion. I feel better about things because I have less symptoms and she confirmed the progress I was stressing about. But I still think a second opinion won't hurt. 

Donna, that sounds like great news! Sounds like she listened and was pleased with the changes. So glad no surgery for now; I pray the med continues to work for you. 

Lisa

Lisa thanks so much. I can't even believe the progress this week has brought. I can barely see two of the spots now. I wanted to tell everyone I an currently taking AHCC an immune support that's based on mushrooms. Very popular in Japan. I am also taking a multi vitamin. I will keep everyone updated. I really hope we all get good news!