Diagnosed with VIN II-III at 23 years old.

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Diagnosed with VIN II-III at 23 years old.

by stuckinmyskin on Mon Jan 03, 2011 06:50 AM

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Hello everyone,

I finally decided to post a message on here as I figured I'd get the real answers from womens who've been through this. I am a 25 years old and was diagnosed wih VIN II-III 2 years ago by my family doctor. Everything started 2 years ago when I went to my family doctor for an annual exam. My family doctor noticed some small flat brown "spots" on my perineum area. She believed it was warts at first, but could not say for sure as she told me it did not looked like the typical warts...She asked if I wanted a biopsy done, and I said yes. When she did the biopsy, she asked if I wanted the rest of the spots(what she believed to be warts then) removed and I told her yes. She used liquid nitrogen (which I am assuming is a regular treatment removal for warts) and took the biopsy and removed the remaining spots using the liquid nitrogen. My family doctor called me once the results were back, and told me I had VIN/Cacinoma in situ. She was shocked by the results and referred me to a gynecologist. I consulted with the gynecologist twice(since the first time, he coudn't really see anyting as my family doctor had burned all the spots). He recommended that we wait a little(maybe 6 months) and that I follow up with him then. I went back to the gynecoloist and he did a second biopsy. Biopsy came back again as VIN II-III/ carcinoma in situ/ bowen's disease (I was told it was all the same thing). I was told that:"the good news was that I don't have cancer, but PRE cancer!!!" That's wonderful news(and yes, I'm being sarcastic). I know in a way, this is good news... The gynecologist advised that he would like to treat it using laser ablation but wanted to get a second medical opinion before anyting. The gynecologist referred me to the head of oncology of my local cancer centre, and of course, told me not to worry, everything will be ok. I have met with the doctor from the cancer centre once (March 2010). He wanted to do the acid wash thing (but I shaved before the appointment and he was unable to as it was burning!!!). He was able to leave the acid wash for maybe a minute on my vulva and some areas (including my clitoris & perenium) started to turn white. He removed the acid wash (as it was burning) and said he will do it again next time he sees me. He did a colposcopy and told me everything looked ok from the colposcopy(I guess it did not spread anywhere else). I told the doctor I had intentions on quitting smoking and he advised me that he wanted to follow up wih me in 10 months (February 2011), since I wanted to quit smoking. He old me that he lesions may bet better by the simple fact that I stop smoking. I unfortunately was unable to quit until now... and I now have my follow up appointment coming up in Feb 2011.

This whole thing started over 2 years ago, and yet, I am still in the same position I was when everything first started. The VIN is stilll there, I still did not get any treatment and I still have no answer to my questions. Everything is still a big grey "blurb" to me.  I believe they may do laser ablation from what the gynecologist had told me then but I guess the GYN oncologist doctor will talk to me about that at my next follow up in Feb 2011. I'm still in the dark about treatment options, reoccurence, scarring(this is a huge concern for me)... I am only 25 years old, no kids yet, active sex life with my partner (but don't know if I would be able to if my vulva was to get butchered).. My partner is so supportive but he thinks I worry way to much for nothing (he always tells me not to worry since that's what the gynecologist said) and always downplays everyting. Would a doctor really say if I really should worry about something?  I'd love to see my partner, if he had to get his penis lasered off or hacked at! Cancer is a word that always scared me so much. I've lost many loves ones to it (1 grandmother, 1 grandfather, 2 aunts)... I understand that I do not have cancer, but PRE cancer, but believe me, I really have a hard time to swallow that one... It is so hard to find any information on VIN II-III... I'd really appeciate if anyone could tell me more about their experience with VIN, laser ablation treatments, any other treatments which could work(or have worked for you) for VIN II-III, sex after laser ablation, scarring, reoccurence, your experience with it...... Thanks in advance to anyone willing to share info with me...

Me

RE: Diagnosed with VIN II-III at 23 years old.

by nadakosovac1 on Wed Feb 02, 2011 04:10 PM

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hello, i am very sorry that you have to go true this i was only 17 when i had my left ovary remove, 27 when i had radical histerectomy, 41 when i had radical exision of the vulva and 42 when i had radical vulvectomy with removal of the anus and limph nodes from both sides (afortunately to late) becose my cancer was all ready metastisse. please, dont wait, go for laser surgery soon as you can, trust me you partner will not even know that you have surgery. i have daughter you age, please, listen to me and thank god that you was diagnosed with pre cancerous condition... i wish you all the best and i will pry for you...  NADA

RE: Diagnosed with VIN II-III at 23 years old.

by lder1961 on Sat Mar 26, 2011 06:04 PM

Quote | Reply

On Jan 03, 2011 6:50 AM stuckinmyskin wrote:

Hello everyone,

I finally decided to post a message on here as I figured I'd get the real answers from womens who've been through this. I am a 25 years old and was diagnosed wih VIN II-III 2 years ago by my family doctor. Everything started 2 years ago when I went to my family doctor for an annual exam. My family doctor noticed some small flat brown "spots" on my perineum area. She believed it was warts at first, but could not say for sure as she told me it did not looked like the typical warts...She asked if I wanted a biopsy done, and I said yes. When she did the biopsy, she asked if I wanted the rest of the spots(what she believed to be warts then) removed and I told her yes. She used liquid nitrogen (which I am assuming is a regular treatment removal for warts) and took the biopsy and removed the remaining spots using the liquid nitrogen. My family doctor called me once the results were back, and told me I had VIN/Cacinoma in situ. She was shocked by the results and referred me to a gynecologist. I consulted with the gynecologist twice(since the first time, he coudn't really see anyting as my family doctor had burned all the spots). He recommended that we wait a little(maybe 6 months) and that I follow up with him then. I went back to the gynecoloist and he did a second biopsy. Biopsy came back again as VIN II-III/ carcinoma in situ/ bowen's disease (I was told it was all the same thing). I was told that:"the good news was that I don't have cancer, but PRE cancer!!!" That's wonderful news(and yes, I'm being sarcastic). I know in a way, this is good news... The gynecologist advised that he would like to treat it using laser ablation but wanted to get a second medical opinion before anyting. The gynecologist referred me to the head of oncology of my local cancer centre, and of course, told me not to worry, everything will be ok. I have met with the doctor from the cancer centre once (March 2010). He wanted to do the acid wash thing (but I shaved before the appointment and he was unable to as it was burning!!!). He was able to leave the acid wash for maybe a minute on my vulva and some areas (including my clitoris & perenium) started to turn white. He removed the acid wash (as it was burning) and said he will do it again next time he sees me. He did a colposcopy and told me everything looked ok from the colposcopy(I guess it did not spread anywhere else). I told the doctor I had intentions on quitting smoking and he advised me that he wanted to follow up wih me in 10 months (February 2011), since I wanted to quit smoking. He old me that he lesions may bet better by the simple fact that I stop smoking. I unfortunately was unable to quit until now... and I now have my follow up appointment coming up in Feb 2011.

This whole thing started over 2 years ago, and yet, I am still in the same position I was when everything first started. The VIN is stilll there, I still did not get any treatment and I still have no answer to my questions. Everything is still a big grey "blurb" to me.  I believe they may do laser ablation from what the gynecologist had told me then but I guess the GYN oncologist doctor will talk to me about that at my next follow up in Feb 2011. I'm still in the dark about treatment options, reoccurence, scarring(this is a huge concern for me)... I am only 25 years old, no kids yet, active sex life with my partner (but don't know if I would be able to if my vulva was to get butchered).. My partner is so supportive but he thinks I worry way to much for nothing (he always tells me not to worry since that's what the gynecologist said) and always downplays everyting. Would a doctor really say if I really should worry about something?  I'd love to see my partner, if he had to get his penis lasered off or hacked at! Cancer is a word that always scared me so much. I've lost many loves ones to it (1 grandmother, 1 grandfather, 2 aunts)... I understand that I do not have cancer, but PRE cancer, but believe me, I really have a hard time to swallow that one... It is so hard to find any information on VIN II-III... I'd really appeciate if anyone could tell me more about their experience with VIN, laser ablation treatments, any other treatments which could work(or have worked for you) for VIN II-III, sex after laser ablation, scarring, reoccurence, your experience with it...... Thanks in advance to anyone willing to share info with me...

Me

I hope you took the advise of the lady that did respond to you.

I 5 years ago was diagnosed with VIN III and had to have a wide vulvar excision which consisted of removal of perineum and part of the right vulvar.  Then three years ago had to have another surgery of a smaller area.  Now 2 years later I have been diagnosed with VIN III again and will see my Oncologist next week to see what he will do.  This time it is on my right side.  DO NOT let anyone tell you wait, dont worry this is your life.  It is not something that is very popular or heard of.  I tell women all day long check yourself on a regular basis.  YOU MUST STOP SMOKING.  I did not and look were I am.  If you think about this the nicotine and tar that you take in when you smoke has to go somewhere and it is flushed out in your urine.  Hello VIN.  If you have anyother questions or just need support please feel free to email back

good luck your life is not over just stay happy it is along road and sometimes painful.  But it is worth it just to live.

RE: Diagnosed with VIN II-III at 23 years old.

by felicity on Sat May 18, 2013 02:14 AM

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Hello, I a am 29 years old and Im from Argentina. I was diagnosed with VIN III a year ago. I used the Imiquimod cream for 6 month with wich I did really well. I was almost back to normal, but one month after I stoped using the cream, VIN came back.

I will now have surgery done to remove the perineum and Im really scared. I know this is just the beginning of a long journey. I try to remain positive but its really hard at this point.

Hope you are all doing fine!

RE: Diagnosed with VIN II-III at 23 years old.

by stuckinmyskin on Fri Oct 18, 2013 02:38 PM

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Good morning everyone,

It’s been a while(a couple years) since I have posted on here and I just wanted to write a follow up as to what happened in the last few years…. The information we can find on VIN is very limited out there and I’d figured I’ll share my experiences up to now… The doctor I was referred to at my local cancer centre turned out to be careless, useless and rude to say the least. He repeatedly told me he did not believe I have VIN even though I had 3 biopsies coming back to VIN. He did not believe my lesions looks like the typical VIN. He kept on saying that the pathologists looking at the prior biopsies(the ones done by 2 other doctors, my family doctor and the first gynecologist I was referred to) might of identified my tissue samples as VIN in error since they are not specialised in examining cancerous cells. I nearly had to break his arm because of his cockiness for him to take another biopsy from me and he ended up doing it, telling me it will come back as nothing. The biopsy results came back and sure enough, I got a call from the cancer centre advising me it came back as VIN I-II. My cocky doctor at the cancer centre kept on telling me he still did not want to do anything with the VIN and he still have a hard time believing this is VIN. They did 2 HPV tests and both tests came back negative. The doctor kept on saying I should have HPV if I do have VIN. From what I have read, this is not always the case. He was adamant about NOT removing the VIN lesions and just keeping it under observation since it is “not bad” according to him. I have done tons of research and I have yet to find anyone recommending to keep the VIN under observation for 5 years. Most websites recommend treatment, removal, laser ablation, excision… Some recommend observation for a SHORT period of time…Not years….

I kept on asking the doctor why he refuses to remove it and he just kept on brushing me off, advising me it is not bad and making me feel like I’m a total basket case for wanting this removed. He even mentioned to me on 2 separate occasions after he did his own biopsy and the results were in that I did NOT have VIN, until I reminded him to take a look at my file since I now have 4 positive biopsies in there ranging from VIN I-III. Last time, he could see I was really not amused when he said that and he even apologized after taking 30 seconds of his very valuable time to look at my file. Like really, what kind of doctor will walk into a room without even reviewing a patient’s file? That was the last straw that made me real upset.

I went back to the gynecologist (second doctor) I saw for something else and the first thing he asked me was if the doctor he referred me to cleared up all the VIN for me? I told him he didn’t do nothing other than 1 biopsy(the biopsy I nearly had to force him to take) and he decided to keep me under observation. I shared my concerns about not having it removed and so did my gynecologist. He had concerns with that as well and wanted a second opinion also. Like he said, if I was older, he would of removed it for me using the laser ablation and kept it under observation from there, but due to the fact I am 28 years old he also feels it should be removed and not just kept under observation. Since I am young, he felt better referring me to a specialist so I’d be in good hands. He asked me if driving was a problem and I advised him I’ll go anywhere to have that second opinion from a second specialist. He referred me to the another cancer centre downtown Toronto (Princess Margaret) and the lead doctor in the gynecology oncology department will look at me on Tuesday Oct 29th. I can’t wait for that second opinion…. I just got the phone call with my appointment this morning.

I will see what happens and keep you guys posted… I hope this doctor will want to remove the VIN! I want it off now!! I wanted it off 5 years ago and I have been butting heads with my doctor at the cancer centre since… Just thinking about my appointment in 10 days makes me nauseous. I definitely have mixed feelings at this point. I thank god for my gynecologist that just loves his job and cares about his patient. I am very lucky to have such a caring gynecologist  referring me to the lead doctor in Gynecology/Oncology at Princess Margaret. I am very blessed this morning.

Have a great week end,

Me

 

“ Life is not measured by the number of breath we take but by the moments that take our breath away”

RE: Diagnosed with VIN II-III at 23 years old.

by Deedvr on Tue Apr 08, 2014 10:46 AM

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Iam new to this site and diagnosed with VIN 3 and had partial vulvectomy. How are you and did u get your lesions femoved?

RE: Diagnosed with VIN II-III at 23 years old.

by Deedvr on Tue Apr 08, 2014 10:47 AM

Quote | Reply
Iam new to this site and diagnosed with VIN 3 and had partial vulvectomy. How are you and did u get your lesions removed?

RE: Diagnosed with VIN II-III at 23 years old.

by ditzyfitzy on Sun Nov 30, 2014 08:03 PM

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On Apr 08, 2014 10:47 AM Deedvr wrote:

Iam new to this site and diagnosed with VIN 3 and had partial vulvectomy. How are you and did u get your lesions removed?

I was diagnosed with VIN II at 60 years old!  No cutting for me, though!  My VIN lesion was on my perimetrium.  I went to an OB/ONCOLOGIST--and she wanted to cut...but, I had read about ALDARA cream being effective and I decided to try it first.  I also read about horror stories about the cream burning, etc.  I had no side effects---I used only a little bit of cream--as directed, (3 times a week), washed as directed...and didn't think it was working because I had NO redness, itchiness or pain from the cream.  I used it for five months--went back for re-check...and my VIN II is gone.  I have to follow-up every year--because there is a 30% chance it will return--but, we will use the cream again.  I will never CUT unless absolutely necessary.  Do not waste time...there are options if you nip it early.  If it is HPV related--the chemo cream also kills the HPV.  Many doctors still don't know about Aldara--go to a OBGYN/OCOLOGIST and ask for it.

RE: Diagnosed with VIN II-III at 23 years old.

by Deedvr on Sun Nov 30, 2014 08:52 PM

Quote | Reply
I had an obgyn oncologist as well but with vin 3, i had no other option due to size of lesion. Creams were not an option Any longer. I used creams in the past as well as another medication that burned it off but within a few months it came back. If i didnt get it removed it could turn to vulvar cancer which is horrible so i had mine removed surgically. 8 months later i am totally healed and you can barely tell i had the sugery..my surgeon was great. Also all cells around the area were cancer free. They feel it will not come back but i get checked every 6 months.

RE: Diagnosed with VIN II-III at 23 years old.

by ditzyfitzy on Sun Nov 30, 2014 08:56 PM

Quote | Reply

Mine was VIN II/III.  So, hapy that you are well.  They don't think that mine will  be back, either---but, they say that either way you go---(cutting or the chemo cream)---that the odds are 30%.  So, make sure that you keep getting it checked...you have a long life ahead of you!

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