vin iii

vin111
PLEASE do not be embarrassed by your diagnosis. There needs to be an awareness of this disease and others that affect the vulvar area. I was diagnosed with stage 3 vulvar cancer on Dec 23, 2008, and had surgery on Jan 12, 2009, and I am doing fine. I will need radiation because it went to 1 lymph node, but I consider myself very fortunate.I was a little freaked by explaining to people what type of cancer I had, but I decided to be proactive in my fight since SO many women are not aware of what the vulva is, or aware of the fact that they need to do a monthly self exam of the area to check for changes. So my approach is to say the word 'vulva' and then be ready to explain in further detail if they want to hear it. Believe me most women are shocked when I tell them about this cancer, and they are happy to have the information. This is a very rare cancer but highly treatable in the early stages, before it becomes a cancer. You are fortunate to have found it when you did.What type of procedure will they be doing on you to remove it?
You are not being whiny either, you just need information and support, I am hear to give you both if you need it.
I will tell you more about me if you desire, just hang in there sister, hold your head up high and be positive!

OMG said:

vin lll
thanks for posting! you sound like you have a very positive attitude, which i am sure will help you through all this. if you don't mind me asking, had you had any problems or diagnosis before the stage 3 cancer?
my doctor is doing laser, since it is so widespread. he said to expect a lot of discomfort and no work for 3 weeks. he also said it would be the start of a long relationship since there is a high rate of reoccurrence. i read that with laser they can't really get a "clear margin". i am a little worried he won't get it all or that it has gone into my vagina. i think i am getting a little nervous. the procedure is in less than a week.
i have told my close friends where it is. no one i have talked to has ever heard of this. so it is good to hear from someone that has been through something similar.
good luck with your radiation. how long does that last?

I really am trying to keep a
I really am trying to keep a positive attitude, but I do have my moments. I started radiation last Wednesday, and have found that the drive there is what causes me anxiety, and once I am done I feel like a weight is lifted. I guess because I am counting down the days til the last one, (I have 24 to go)but I am doing fine, no side effects yet, I think it takes about 2-3 weeks for them to start showing up. I have been using the gel they gave me 3 times a day on the exposed skin to condition it so maybe the burns won't be so bad.
I am not at all familiar with vin 111, but know that there is a site: vaco.co.uk that has a lot of info on it, please check it out. You can also e mail them and they will get back to you. Are you in U.S.? Go to American Cancer Society website also, call the toll free number and talk to them, they will send you info relating to your specific cancer,(they should have info on other vulvar issues) and can direct you to support groups. They have been a valuable aid to me.
I did not have other problems before my diagnosis, all I had was a cyst next to labia, which I frequently had during my period. However this one never went away, it got bigger, then popped open and blood and pus came out (sorry for graphic detail), but even that did not concern me that much, I figured it would just go away. Well it did not, and it never healed, it became irritated. I did not go to doctor right away since we were busy with our new house and all that goes with that, so I figured I would ask doc about it at my annual exam, which was in Nov 08. She did not know what it was, so sent me to gyn doc, who also did not know what it was, but did a biopsy, that came back clear, but he wanted me to come in following week to have rest of legion removed and put a couple stitches in, so I did, that was Dec.,16,2008. On Dec. 23 he called and told me it was cancer and wanted me and my husband to come into office that afternoon. His purpose was to explain the type of cancer it was, and assure me it would be taken care of and that I would be fine. While I was in his office, he called a very good gyn/oncologist and got me in to see him on the 26th of Dec., that doctor fit me in before his scheduled patients for the day. He was very nice, explained the cancer to me, the surgery, etc. My surgery was 20 days from my diagnosis, on Jan 12th.It was a 3 hour surgery, cancer was more invasive than he thought, but I did very well, I even went home same day, actually 2 hours after I returned to my room. I did not need much pain meds, but I did have discomfort, but was able to deal with it. Pain meds rev me up really bad. My cancer spread to only 1 lymph node, so that is why I have to have radiation, if it had not spread, the surgery would have been all I needed. My vulvar cancer is not squamous cell, which is what majority of vulvar cancers are, but rather it is an adenocarcinoma, which comes from glandular tissue.Typically my type of cancer is found in 65-70 year old women, I was 55 when diagnosed, I have since turned 56, and I have not started menopause as yet (radiation oncologist said I have bionic ovaries):)The risk factors the medical field thinks cause this cancer and other vulvar issues, are not issues that I have, and usually adenocarcinoma of the vulva is a secondary cancer, meaning that it is somewhere else before it appears on vulva. Well I beat all those statistics, so maybe I should buy a lottery ticket?
I actually feel very fortunate in my situation, it is scary, but I am healthy and doc said I should make a complete recovery. I started a new job the day of second biopsy, and when it came back as a cancer I was asked to resign, since they did not have provision for part time workers to take a leave of absence.A blessing in disguise, I don't think I could have focused on learning a new job at this time, and they did sat they would hire me back.I know recurrence is about 30% for my type of cancer, but I choose to focus on the 70% that doesn't come back, and will try my best to keep up with self exams (monthly), doc visits, healthy lifestyle etc., doing all I can to prevent it from coming back.
I will have a total of 28 radiation treatments, they are 5 days a week, last for about 5-7 minutes, and you do not feel anything. Side effects come later, but every one reacts differently.
I guess the best thing I can offer you is #1- be your own best advocate, do research on the sites I mentioned, there are others also that I can let you know about. #2-make a list of questions to take to the doctor with you, and do not be intimidated to ask them, and make sure you understand and are satisfied with the answers. #3-if you are not confident with your doctor, please get a second opinion, any good doctor would understand. Ask if you had to wait a couple of more weeks for your procedure, would it matter.(this will give you more time to be sure about what you are doing.) #4- be patient with yourself and take care of yourself.
I have also started a journal, where I write down all the notable things that were happening, I knew I could never remember them, and it is very cathartic for me.Keep me posted as to how you are doing , I will check site every day, and my thoughts are with you. Hang in there, be strong, you CAN face this and overcome it!Best wishes to you.

funbeadgirl said:

vin111
PLEASE do not be embarrassed by your diagnosis. There needs to be an awareness of this disease and others that affect the vulvar area. I was diagnosed with stage 3 vulvar cancer on Dec 23, 2008, and had surgery on Jan 12, 2009, and I am doing fine. I will need radiation because it went to 1 lymph node, but I consider myself very fortunate.I was a little freaked by explaining to people what type of cancer I had, but I decided to be proactive in my fight since SO many women are not aware of what the vulva is, or aware of the fact that they need to do a monthly self exam of the area to check for changes. So my approach is to say the word 'vulva' and then be ready to explain in further detail if they want to hear it. Believe me most women are shocked when I tell them about this cancer, and they are happy to have the information. This is a very rare cancer but highly treatable in the early stages, before it becomes a cancer. You are fortunate to have found it when you did.What type of procedure will they be doing on you to remove it?
You are not being whiny either, you just need information and support, I am hear to give you both if you need it.
I will tell you more about me if you desire, just hang in there sister, hold your head up high and be positive!

vin 111
hi hope u dont mind me asking adivice.
I had vin 3 15-20 years ago and a total of 4 biopsies, all those years ago they did not no much about it but any sign and it was cut away. Also the very bad itching i had was not connected to vin and was given edless creams. Anyway i examined myself and found a white patch and a small amount of itching so i went to a new consultant and had the acid wash and he says he can see quiet clearly the abnormal cells are there. But to leave it 4 six months as he doesnt want to start cutting unless they really need to. Do your think i should be worried. Sorry to trouble you. in uk

samdibba said:

vin 111
hi hope u dont mind me asking adivice.
I had vin 3 15-20 years ago and a total of 4 biopsies, all those years ago they did not no much about it but any sign and it was cut away. Also the very bad itching i had was not connected to vin and was given edless creams. Anyway i examined myself and found a white patch and a small amount of itching so i went to a new consultant and had the acid wash and he says he can see quiet clearly the abnormal cells are there. But to leave it 4 six months as he doesnt want to start cutting unless they really need to. Do your think i should be worried. Sorry to trouble you. in uk

Vin 111
My dear friend- sorry you are having more issues related to the VIN. I guess I would get a second opinion , especially if new consultant said you clearly have abnormal cells. I would really question why he would wait 4 months, maybe there is a good reason, but he should clearly explain it to you so that you feel confident with it.Hang in there.

AMWALWAYS said:

VIN STAGE 3
I WAS TOLD 7 YEARS AGO, AFTER AN ATTACK AND RAPE I HAD GENITAL WARTS,,, HOWEVER THIS WAS NOT THE CASE AT ALL, SO DOCTOR AFTER DOC, SAID THE SAME,, WELL IN 08 AFTER ABNORMAL PAP AFTER ANOTHER I WAS SENT TO HAVE A BIOPTSY, (I AM MILITARY SPOUSE) SO I GO TO THE NEW DOC, AND SHE SAYS OH YOUR YOUNG THIS IS JUST WARTS AND THATS WHY YOUR PAP IS ABNORMAL, SO SHE SAY'S I CAN DO AN ACID TREATMENT AND THEY WILL FALL RIGHT OFF. I SAID GREAT! WELL THAT NIGHT AFTER TREATMENT MY VULVA GOT SO SWOLLEN AND PAINFUL I CRIED ALL NIGHT,LONG STORY SHORT, WENT BACK AND SHE SAID I WOULD BE FINE AND THIS WAS NORMAL, THE "SORE'S" GREW SO LARGE AND PAINFUL I COULDN'T STAND TO TOUCH MYSELF, SO I WENT BACK ON BASE TO A NEW OBGYN AND SHE SAID I DON'T KNOW WHAT THIS IS BUT IT'S NOT A WART! NEXT WEEK DID BIOPTSY AND FOUND IT WAS VIN3,,, I HAVE HAD 3 SURGERIES WITH NO RESOLVE, IT HAS SPREAD, AND NOW MY ONCOLOGIST WANTS TO DO ANOTHER ONE IN APRIL 2010, BUT I DON'T WANT TO I HAVE ALREADY LOST HALF OF MY VULVA THEY REMOVED ALL BUT ONE VERY SMALL PIECE OF THE LEFT SIDE AND HALF OF THE RIGHT, DOES ANYONE KNOW HOW I CAN FIND A DOCTOR WHO KNOW'S ABOUT THIS SPEC. CANCER? I AM ONLY 32 AND I HAVE HAD THIS SENCE I WAS 25, THE DOC ON BASE SAID THAT WHEN I HAD THE ACID TREATMENT FOR "WARTS" THAT IT MADE THESE BAD CELLS KICK INTO HIGH GEAR. CAN ANYONE PLEASE HELP ME TO EDUCATE MYSELF ON THIS SO I CAN GET WELL. MY CANCER DOC, IS AN A...WHOLE AND HE IS VERY RUDE AND JUST DOWN RIGHT REFUSSES TO ANSWER MY QUESTIONS HE ALWAYS SAY'S WILL TALK ABOUT THIS NEXT APPOINTMENT,,(I ASK WHAT ARE MY OPTION'S NOW THAT WE HAVE 3 SURGERIES THAT HAVE NOT WORKED AT ALL?) P.S. 3 SURGERIES AND EACH TIME I HAVE FOUND OUT "OOPS" IT HAS SPREAD AND WE DIDN'T GET IT ALL!

AMWALWAYS
This is a rare cancer only about 4000 cases in the United States, it is difficult to get a doctor knowledgeable on this condition. Youre a young woman how about Aldara cream? Its a clinical trial for this type of cancer. They use it for genital warts. It works in many side effects are rough, but if used properly you may be able to avoid more surgery. Google VIN3 and you will find links here and there regarding this condition. Don't smoke it weakens immune system. Eat well, I heard condom use helps the body clear the virus quicker then without. It is not easy to get clear margins I beleive somewhere about 67% do not get clear margins, they beleive it doesn't affect whether it returns. Im here to help if you want more info.

AMWALWAYS said:

LCME REPLY
I DID TRY THE ALDARA CREAM WITH THE FIRST DOC WHO DID THE ACID TREATMENT, UM IT HAD NO EFFECT AT ALL,,, I USED IT FOR 6 MONTHS, AND I'M JUST UPSET CUZ SOMEONE HAS TO KNOW ABOUT THIS,,, AS A DOCTOR,, MY INSURANCE WILL COVER ME ANYWHERE, AND EVERYWHERE! SO THAT'S NOT A PROBLEM I JUST REALLY NEED TO KNOW I'M GONNA BE OK,, ALL I HAVE READ SAY'S 8 OUTTA 10 WOMEN WHO DO NOT GET TREATMENT FOR THIS VIN 3 IT TURNS TO INOPERABLE CANCER, AND THERE'S NOT MUCH U CAN DO AT THAT POINT. I AM TRYING TO GET ALL THE INFO I CAN ON THIS BEFORE SEEING MY CANCER DOC ON APRIL 6TH, TO TALK TO HIM, CUZ I AM NOT DOING ANOTHER SURGERY HE HAS TAKEN OFF ALOT OF MY (LIPS) AND STILL IT HAS SPREAD AND THEY DIDN'T GET IT ALL. SO CAN ANYONE LEND ME YOUR THOUGHTS ON HOW TO HANDLE THIS?

amalways
Where did you read 8 out of 10 turns to inoperable cancer? Many women do get operated on for invasive cancer of the vulva and believe it they do fine. Provided it is caught early. The info is far and few between because there are only about 3800 cases per year. This vin3 does spread and if caused by hpv it is usually multi-focal. It used to be thought that HPV virus could not be cleared but now they realize in some women it can be. No woman wants surgery whether they are 25 or 75. VIN3 has a tendency to return. We can only do so much with VIN, surgery was the first line of attack, they are working on a shot but its not available yet. There is only so much we can do. We are all in the same boat. I read a woman has had 27 surgeries in 9 years. I don't know if Aldara will work for me but I'll try. I will do whatever it takes to stay alive. I know surgery isn't fun but what other choice is there? Boost your immune system, vitamins, not smoking, eating right, no alcohol etc. I know you are upset and frazzled at this point and I don't blame you, I just want you to know I am willing to help with what I can. Stay strong. Stress is a big no-no too.

AMWALWAYS said:

LCME
THANKS FOR YOUR ADVICE,, TO ANSWER YOUR QUESTION ABOUT 8 OUTTA 10,,, I READ IT ON ONE OF THE SITE'S I FOUND WHEN I GOOGLED VIN3,, THERE'S ALOT OF DIFFERENT INFO OUT THERE, IT'S FRUSTRATING, I HAVE BEEN ON FOLIC ACID SCRIPT NOW FOR ABOUT 5 YRS I TAKE IT DAILY, ALDARA CREAM DIDN'T WORK,AND I FEEL HOPELESS, BUT I KNOW I'LL MAKE IT THREW. I REALLY JUST NEED A DOC WHO ISN'T A JERK AND ACTS LIKE AN A..WHOLE. THIS GUY DOESN'T LISTEN OR EXPLAIN HE JUST SAYS THIS IS WHAT IM DOING. I DUNNO, PLUS HE IS VERY ROUGH WHEN HE DOES AN EXAM I ALWAYS LEAVE CRYING FROM THE PAIN HE CAUSED AND I'M NO BABY. BUT APPOINTMENT IN THE MORNING WITH HIM SO WILL C?

VIN 3 - Laser done today
Early May of this year, I noticed a few pigmented spots just below the opening of my vagina. They did not itch nor were painful to the touch so I decided to wait until July for my annual pap test to have the gynocologist look at it. I know that on a few occasions after intercourse with my husband, I had a few tears in that area so I figured it was from scarring since I scar easily. After visiting my gynocologist, I was informed that it looks like "pigmented HPV" and that a biopsy should be done to determine exactly what it was, but it probably should be removed regardless. I had the biopsy done two weeks later. During that time, a sample of the area was cut out, and acid was placed on the rest of the pigmented area. The following days after the biopsy, the areas which acid was put on started to peel off and it looked like it was completely gone. However, within a few days it all started to come back and actually looked like it was spreading out more as well and was more raised. The growth seemed much faster than previous which scared me.

I got the results after two weeks and my gynocologist told me it was VIN3, the harshest form of VIN and pre-cancerous. I was sent to a specialist within 2 weeks, and I had the laser done this morning. The specialist informed me that the laser is 75% effective in completely getting rid of VIN3 and there is only a 25% chance of having it come back. He also informed me that it takes years for VIN3 to turn into cancer. But I prefer dealing with the problem asap.

I was given about 6-8 freezing injections around the area and the whole laser procedure lasted about 10 minutes. For precautionary measures he also removed a few moles and freckles that I had in the area as well. The specialist did mention that it is different for every case. In some cases, they will have to bring the patient to the surgery room, and have the patient go under local anesthetic if a larger area has to be removed.

I have my follow up check up in 4 months (January) with the specialist, and a follow up with my gynocologist in two weeks. I was told it would take about 4-6 weeks to fully heal and have to do a sitzbath with epson salts three times a day. At the moment, the recovery pain is tolerable. The area throbs a little but it is not terribly bad.

I hope this will help some of you going through something similar. I know you may be scared, as I was absolutely terrified and was seeking online forums for comfort. Please do not be scared. As long as you are with a specialist who has treated patients with VIN3 before, you are in safe hands.

marjjory42 said:

Could you please tell me who
Could you please tell me who your doctor was and what state you are in.
My doctor wants to remove the tissue and do
a chemo cream. Thank you

I actually live in
I actually live in Canada.

How is your doctor planning on removing the tissue? Through laser?

How much of the vulvar area is infected?

The main part that was infected for me was just under the opening of the vagina. The pigmented spots covered a little over a nickel in size. I also had three other spots, which were probably just freckles, removed for precautionary measures.

Elbows said:

VIN 3 - Laser done today
Early May of this year, I noticed a few pigmented spots just below the opening of my vagina. They did not itch nor were painful to the touch so I decided to wait until July for my annual pap test to have the gynocologist look at it. I know that on a few occasions after intercourse with my husband, I had a few tears in that area so I figured it was from scarring since I scar easily. After visiting my gynocologist, I was informed that it looks like "pigmented HPV" and that a biopsy should be done to determine exactly what it was, but it probably should be removed regardless. I had the biopsy done two weeks later. During that time, a sample of the area was cut out, and acid was placed on the rest of the pigmented area. The following days after the biopsy, the areas which acid was put on started to peel off and it looked like it was completely gone. However, within a few days it all started to come back and actually looked like it was spreading out more as well and was more raised. The growth seemed much faster than previous which scared me.

I got the results after two weeks and my gynocologist told me it was VIN3, the harshest form of VIN and pre-cancerous. I was sent to a specialist within 2 weeks, and I had the laser done this morning. The specialist informed me that the laser is 75% effective in completely getting rid of VIN3 and there is only a 25% chance of having it come back. He also informed me that it takes years for VIN3 to turn into cancer. But I prefer dealing with the problem asap.

I was given about 6-8 freezing injections around the area and the whole laser procedure lasted about 10 minutes. For precautionary measures he also removed a few moles and freckles that I had in the area as well. The specialist did mention that it is different for every case. In some cases, they will have to bring the patient to the surgery room, and have the patient go under local anesthetic if a larger area has to be removed.

I have my follow up check up in 4 months (January) with the specialist, and a follow up with my gynocologist in two weeks. I was told it would take about 4-6 weeks to fully heal and have to do a sitzbath with epson salts three times a day. At the moment, the recovery pain is tolerable. The area throbs a little but it is not terribly bad.

I hope this will help some of you going through something similar. I know you may be scared, as I was absolutely terrified and was seeking online forums for comfort. Please do not be scared. As long as you are with a specialist who has treated patients with VIN3 before, you are in safe hands.

Vin 3
Plz let me know the outcome when you go to the specialist. I just found I have VIN 3 and I'm waiting to make my first appointment to discuss my options.