VIN III-CA in Situ

VIN111
Hello Samsmom: This is a pre-cancer (in-situ)it can be caused by the HPV virus there are 100 strains or sometimes lichen sclerosis' sometimes they don't know. You don't need multiple partners to get HPV, in fact you can get it with using a condom, skin to skin contact. You can't "catch it" just like you can't catch cancer. This incidence of VIN has increased dramatically over the years yet the incidence of vulva cancer has not. Vulva cancer is still quite rare about maybe 3800 cases in the U.S per year. Not all VIN or pre-cancerous changes turn into vulva cancer, the problem is they don't know which cases will and which will not, so when VIN is discovered it is usually removed either by excision, or skinning method or laser or maybe a combination of both with sometimes a cream to follow. Re-occurance rate is about 30%. I was always itchy and doctor always said it was a yeast infection. Sometimes there is redness, burning, itching, and white or dark appearance in affected tissue sometimes no symptoms. Follow-up is every 3 months over a period of years. It isn't like other cancers where they remove it and it may not return, this usually does return. Sometimes it returns quick and other times several years span. VIN is more common in younger women while vulva cancer is usually a cancer of older women. Not to say young women don't get vulva cancer, you can be any age and get any cancer as you know. Stay away from irritants, cotton only underwear, no pantyhose, no perfumes, no soap or washes down there, shaving isn't a good idea either, no washcloths, no shampoos, conditioners, keep the area clean with warm water, blow dry on as cool setting gently also. Aldara cream is being used by the cancer society as a promise for this condition. Aldara stimulates your own immune system to control the condition, however, it doesn't kill the virus, that's forever.It has alot of side effects but manageable and it helps keeps this away for a while. I had excision in Dec 09 and I am on week 15 of Aldara just a few more to go. Most people aren't knowledgeable about this you are correct, they are a few of us on here that are. I'd be more than willing to answer your questions. So far for me I'm doing fine. Oh and stress is a big no-no as well as smoking because that contributes to this condition as well as vulva cancer. They are working on a medicine to work on people with HPV virus already, however, it isn't done yet. You can get through this. I am living proof. Good Luck.

LCME said:

VIN111
Hello Samsmom: This is a pre-cancer (in-situ)it can be caused by the HPV virus there are 100 strains or sometimes lichen sclerosis' sometimes they don't know. You don't need multiple partners to get HPV, in fact you can get it with using a condom, skin to skin contact. You can't "catch it" just like you can't catch cancer. This incidence of VIN has increased dramatically over the years yet the incidence of vulva cancer has not. Vulva cancer is still quite rare about maybe 3800 cases in the U.S per year. Not all VIN or pre-cancerous changes turn into vulva cancer, the problem is they don't know which cases will and which will not, so when VIN is discovered it is usually removed either by excision, or skinning method or laser or maybe a combination of both with sometimes a cream to follow. Re-occurance rate is about 30%. I was always itchy and doctor always said it was a yeast infection. Sometimes there is redness, burning, itching, and white or dark appearance in affected tissue sometimes no symptoms. Follow-up is every 3 months over a period of years. It isn't like other cancers where they remove it and it may not return, this usually does return. Sometimes it returns quick and other times several years span. VIN is more common in younger women while vulva cancer is usually a cancer of older women. Not to say young women don't get vulva cancer, you can be any age and get any cancer as you know. Stay away from irritants, cotton only underwear, no pantyhose, no perfumes, no soap or washes down there, shaving isn't a good idea either, no washcloths, no shampoos, conditioners, keep the area clean with warm water, blow dry on as cool setting gently also. Aldara cream is being used by the cancer society as a promise for this condition. Aldara stimulates your own immune system to control the condition, however, it doesn't kill the virus, that's forever.It has alot of side effects but manageable and it helps keeps this away for a while. I had excision in Dec 09 and I am on week 15 of Aldara just a few more to go. Most people aren't knowledgeable about this you are correct, they are a few of us on here that are. I'd be more than willing to answer your questions. So far for me I'm doing fine. Oh and stress is a big no-no as well as smoking because that contributes to this condition as well as vulva cancer. They are working on a medicine to work on people with HPV virus already, however, it isn't done yet. You can get through this. I am living proof. Good Luck.

vin 3
LCME, I was just diagnosed with vin 3 and am scheduled for surgery on March 30th at the Vulvar-Vaginal Disease Clinic at the University of Iowa. My regular gyno did biopsies that do not show cancer but the specialist at U of IA explained to me that surgery to remove the affected tissue is the best option for making extra sure that there is no cancer lurking. It seems to me to be extreme but she also explained that lasering it is much more painful and that the creams don't seem to work very well in persons in their 40's (I'm 45). Am I making the right decision? I am a smoker and am vowing to quit for good.....I'm picking up a prescription for Chanitx tomorrow. Also, what can I expect as far as a recovery time? My fiance is starting a new job cross country 3 days after my surgery. Yikes. My support system here in Iowa is limited without him. Please help!!!! Anyone!!!! I'm freaking out!

greysonhagar said:

vin 3
LCME, I was just diagnosed with vin 3 and am scheduled for surgery on March 30th at the Vulvar-Vaginal Disease Clinic at the University of Iowa. My regular gyno did biopsies that do not show cancer but the specialist at U of IA explained to me that surgery to remove the affected tissue is the best option for making extra sure that there is no cancer lurking. It seems to me to be extreme but she also explained that lasering it is much more painful and that the creams don't seem to work very well in persons in their 40's (I'm 45). Am I making the right decision? I am a smoker and am vowing to quit for good.....I'm picking up a prescription for Chanitx tomorrow. Also, what can I expect as far as a recovery time? My fiance is starting a new job cross country 3 days after my surgery. Yikes. My support system here in Iowa is limited without him. Please help!!!! Anyone!!!! I'm freaking out!

VIN 3
I WAS DIAGNOSED WITH VIN 3 WHEN I WAS 45. HAD A WIDE EXCISION VULVAR ECTOMY AND REMOVAL OF PERINEUM. AT 47 I HAD TO HAVE A SMALLER SURGERY WITH REMOVAL OF A SMALL SPOT. NOW LAST WEEK AT 50 I HAVE BEEN DIAGNOSED AGAIN WITH VIN 3 WILL SEE MY ONCOLOGIST NEXT WEEK. I MYSELF ON THE FIRST SURGERY WAS OUT OF WORK FOR A MONTH AND A HALF UNABLE TO GET OUT OF BED EXCEPT TO GO TO THE BATHROOM. KEEP THE AREA CLEAN. USE A SQUIRT BOTTLE OF WARM WATER TO CLEANS YOURSELF AND PAT DRY. NONE OF MY STITCHES HELD WHICH MADE RECOVERY LONGER. DO WHAT THE DR SAYS YOU SHOULD BE OK. JUST FOR A LITTLE INFORMATION ALL OF THE RESEARCH I HAVE DONE SHOWS THAT IT WILL COME BACK. WHERE AND HOW BAD VARIES. MY ONCOLOGIST IS ONE OF THE BEST HERE IN HOUSTON AND BOTH TIMES HE GOT IT ALL. ALWAYS CHECK YOURSELF ON A EVERYDAY BASIS. IF YOU SEE ANYTHING STRANGE GO TO DR ASAP. RECOVERY DIFFERS FROM EVERYONE AND HOW MUCH IS REMOVED. I WON'T LIE TO YOU IT WAS NOT FUN. I HAVE BEEN DISFIQURED BUT MY BOYFRIEND ACCEPTS IT BECAUSE HE LOVES ME AND I AM ALIVE. LOL I APOLOGIZE FOR SPELLING DON'T HAVE SPELL CHECK LOLOLOL. TELL EVERY FEMALE YOU KNOW ABOUT THIS WE WERE NEVER TOLD TO CHECK OURSELVES NOR WERE WE TOLD ANYTHING ABOUT THIS TYPE OF CANCER. IF WE AS SURVIVORS DON'T SPEAK UP MORE AND MORE WOMEN WILL BE LIKE WE ARE TRYING TO FIND ANSWERS.

Shimmer said:

Nurse with CIN
Samsmom17,

I was interested in your comments about your RN peers' lack of knowledge as well as their difficulty talking about it. I was enrolled in an NP program when I was diagnosed and none of my classmates had ever heard of it. In fact, I have yet to encounter any woman who has heard about this. I am so appalled by this lack of information, that I am trying to start an advocacy. It's slow work, but I keep reminding myself that "slow and steady wins the race."

I have been particularly disturbed by the lack of patient education from the GYN onc's office. Imagine - they never provided any information on the prevention of constipation. Of course, being an RN, I had a handle on that, but what about all the women who have no medical/nursing background?

I had a radical wide excision and was told it would be no worse than an episiotomy. Ha! I had a third degree tear and a repair when my son was born. That was light years easier than recovery from this relatively small surgery. Perhaps part of the problem is my lateral margins were not clear so my incision was still surrounded by cancerous tissue. The whole thing opened up after the stiches were removed. It is gradually filling in, but what a slow process.

Thanks for listening to MY vent. Good luck to everyone who is going through this.

Nurse with VIN III
Shimmer,
I am an RN as well and was just dx with VIN III two weeks ago. I have to agree with your post as I had no idea about VIN or Vulvar Cancer. In fact my GYN and PCP do not have any educational material on VIN or Vulvar Cancer. There should be more education on prevention and early detection on this. More women need to be made aware of this type of cancer.

I am scheduled to have surgery next week and really have no idea of what to expect afterward. My GYN oncologist set me up to see a plastic surgeon as she believe a skin graft or flap may be needed. I am so worried about disfigurement and functionality following the surgery and have no idea what to expect. Can you offer any advise ?

Thanks