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VIN III-CA in Situ

Samsmom17
Posts: 1
Joined: Jun 2010

I just got the diagnosis and have my first appt tomorrow with the GYN Oncologist so I have no idea what treatment I am facing. Thankfully it hasn't spread and is classified as "non-invasive". I'm also a nurse and had never heard about this cancer before. I actually made an appt to see my GYN for "warts" and almost cancelled the appt twice (out of embarrassment) but my hubby MADE me go. I'm so thankful that he did. I had a hysterectomy 17 years ago and NEVER imagined any further problems. My last GYN exam was last year and the spots were not detected at that time. I have not had multiple partners, nor has my husband. It's kind of ironic that the nurses that I work with a) don't have a clue what this is, b) don't have a clue how you "catch" it and c) can't really comfortably discuss it. Anyway, just wanted to vent and post a note. Thanks for listening....

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Samsmom,
This is a good place to come and vent. What kind of cancer were you diagnosed with?

LCME
Posts: 10
Joined: Jan 2010

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.

yeahright
Posts: 54
Joined: May 2010

I understand how you feel. It is almost like you dont want to tell anyone what is going on b/c it is sooo Taboo. I found ou that I had Vulvar cancer about twoo months ago. the crazy thing is that I had this wart looking thing for almost three years. So for three years I was getting treament for a wart. The first time I got it treated was in the dr office they gave my acids and creams for it. Those treaments for so painful so at my next pap I told the dr and he said well I think the best thing is to remove it so he did it right there. He did a path on it and a week later i am being dx with vulvar Cancer. I was sooo happy that I said something about it and not just keep going on with the creams b/c there is no telling how bad it could have been. When I am ashamed about going to the dr I always tell myself that dr has seen worst. LOL As far as catching it you cant someone asked me how did I catch it I told them you dont catch cancer would you ask a breast cancer or ovian cancer patent that. I am 29 years old and is dx with vulvar cancer I didnt have allot a partners in my life I been with the same man for the last 10 years of my life which mean since I was 19 years old. So when the dr told me it was a wart we thought it came from HPV and come to found out that it was cancer with VIN 3 in the background. After surgery they found multi places with VIN 3 that was in the verge of turning in to caner. Never be afraid of going to the Dr. Most people dont no about this b/c it is sooo rare as they say. I never heard of it unti they told me that I had it. I was lucky b/c they removed all the cancer with surgery and they did some laser and removed alot of lymph nodes and the caner didnt spread there yeah!!!!

greysonhagar
Posts: 3
Joined: Mar 2011

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!

Toast
Posts: 33
Joined: May 2010

How are things going? I don't get on this site very often (sorry!) or I would have posted sooner. I was diagnosed with VINIII about a year ago and had surgery. I was 45 too. I had the surgery to remove the affected area and was scared to death!!! I found the emotional turmoil much more difficult to deal with than the physical.
I'm glad I had the surgery and found out for certain that my margins were clear and there was no spread -- and that the original diagnosis of VINIII was correct.
I'm not too far away - in Nebraska - let me know how you are doing :D

lderouen
Posts: 3
Joined: Mar 2011

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
Posts: 2
Joined: Apr 2011

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.

Tina43
Posts: 1
Joined: May 2011

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

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