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VIN III recurrence

NinaD
Posts: 2
Joined: Apr 2005

Hi, I'm new to this site. I'm really grateful to have finally found it. I'm been searching high and low for the last week.

I was diagnosed last Fall (04) with VIN III after I had other surgery to fix my prolapsed rectum. The piece that was taken out for the repair was sent to pathology and was found to have VIN III. I was sent right away to the gyn oncologist. He did a test with vinegar to find out if there was more tissue involved. At the time there wasn't. However he wanted to be cautious and set up apointments for check-ups with my ob/gyn for the same vinegar test every 3-4 months to make sure it did not reccur. I had my first check-up about two weeks ago and the VIN III was back in spades. It now involves both sides of labia and near rectum. I'm scared stiff. My ob/gyn prescribed ointment (chemotherapy type) that was recommended from the gyn oncologist. However I was not able to afford the ointment ($170.00) I contacted my ob/gyn and he wants me back to see him on the 25th for surgical referral. I'm really scared about that.(the surgery that is)I'm trying not completely lose it on a daily basis. I have a support network here, however none of my friends or family have gone through this. That's why I've been looking for support online.

I'm asking anyone out there with this type of diagnosis who is willing to be an emailing buddy to help me go through this please contact me.
I'm real lonely in Canada with VIN III. The Cancer Society in my city doesn't have support groups either. Please help.

Nina D.

AuthorUnknown
Posts: 1564
Joined: May 2006

Hello,

You may want to consider checking out the chat rooms when you feel the need for extra support. You can also email others on this board to see if they would like to share their experiences.

I wish you well on your treatments.

Take care and be well,

Dana
CSN Dana

Nancytahoe's picture
Nancytahoe
Posts: 32
Joined: Feb 2005

I was diagnosed with vulvar cancer in Oct 2004. My tumor was 1/2 way up the vaginal wall, right side. I had surgery Jan 7th 2005. The tumor and 2 lymph nodes were removed. I was told by the doctor that I should have 5 days a week, 6 weeks of radiation. I refused the radiation. I choose an alternative cancer method called Protocel aka Cancel. I started taking it in February. I had a papsmear done May 13th, and I am cancer free.
In doing the research for radiation for vaginal & vulvar cancer, the radiation can cause damage to your urthea,vagina,rectum,bladder and intestines, and is painfull and takes a long to heal as you could imagine.
I was not the least bit scared of the surgery, but scarred to death of radiation. If you would like to email me at CARRACER63@AOL.COM, it is alot easier than this discussion board. I have also been emailing a woman in Kentucky that contacted thru this site.

Best of luck to you,

Nancy

sherryg44's picture
sherryg44
Posts: 1
Joined: Sep 2005

Hi Nina, I just found this site myself. I would love to hear how you are doing? Have you had any surgery yet? (I know that waits in Canada can be quite long.) I'm in Manitoba.

I was first diagnosed with VIN III in 1999. I seem to be a rare case as I have had multiple recurrences. I have actually lost track of the number of laser surgeries that I have had to date but it is somewhere between 9 and 12. I have a surgery and book an appointment for a post-op checkup for 4 to 6 months later. I never make it that long as I have a recurrance before that time. They know now that I am well aware of when it is flaring up again and most of the time they just book me for another surgery and take a biopsy at that time to confirm what I already know. I had my last biopsy in July and sure enough it is back AGAIN. I need to have another surgery but unfortunately the laser machine is BROKEN (it was when I was there in July). They hope to have it fixed sometime in September at which time they will schedule my laser surgery. What's with that?? I think that is unacceptable. How can they make people wait for necessary surgeries because a piece of equipment is broken down. I honestly don't worry about myself. I have been dealing with this for what seems like a very long time that I think of it more as a trip to the dentist. I am actually getting used to them administering the anesthetic. My first two surgeries were done with general anesthetic but since then I have requested a local. Going under makes me sick to my stomach. Anyhow, I feel like an old pro at this. If you want to chat, I'm here for you. Sherry

cytotech06
Posts: 1
Joined: Oct 2005

hi--I'm brand new to this site. I had CIN III at 20, then VIN III at 21, and now I'm about to turn 25 and I have VIN I. My OB/GYN finally referred me to an oncologist. I have the appointment in Nov. I'm worried because the area is more diffuse and wider than the previous and they may do laser surgery. It's a bit disheartening to hear how many times it can come back. I'm a senior cytotechnology student (we read and diagnose pap smears), so my knowledge is helpful and hurtful at the same time. All of your positive attitudes are a real comfort. Thanks for sharing!
Winona

Friendsforlife
Posts: 2
Joined: Sep 2013

Hi, my name is Robin and I am now facing my second surgery for Vin III.  My first was in Nov 2011. For the past two years i went for my 6 month check up and all was good them bam last month my doc told me I had it again.  My doctor wants to do surgery with a new tool called Sonopet and I was wondwring if you had any of your surgeries with it?

gluestar
Posts: 6
Joined: Feb 2006

Goosh, what can I say. My name is Myriam, and I too have VIN III. I was diagnosed with precancerous cells in December of this year and by January I had VIN III. I am scared too, I think we all are. My family has been more than supportive, but I want to do things alone. Somehow the thought of having them worry about me makes me worry about me more, and I don't want that. I keep myself busy, looking for information on this, ways and questions I can ask the oncologist when I see him this month. I have not rested in taking care of this. Take time to arrange your thoughts and look for more options. I have an appointment with two oncologist already! I need a second opinion before I get the first one. It is always good to be ready for anything. Do research on what you should and should not eat. Also make sure that the doctor you are going to is a known doctor and that he answers all your questions, write them down before you go, it has helped me, I tend to forget what I want to ask when I get there. At least you can't say you did not try your best in taking care of all this. What most of us are going through is not a joke, I am scared very scared. And when I think about it I get depressed, but then I realize that depression is not helping me to think stright and get through this, so then I get up and start all over again. Be strong, that is what your body needs. You are not alone, there are many of us that are going through the same thing and are here for you.

zehros
Posts: 5
Joined: Jul 2009

Hello Ladies!
I am a 57yrs woman here in the UK and was diagnosed with VIN many years ago. In my 30's the results of a pap test showed CIN III. I had them yearly and all previous ones were clear. This was followed up with a colposcopy and eventually a cone biopsy of the cervix. This was followed by pap tests every month, then 3 monthly, then 6 monthly and annually since.
7yrs after this episode and after pointing out several times a 'sore' area to my GP I insisted on seeing a Consultant GYN. A sizeable piece of labia was excised and I was told not to worry further. A couple of years later I developed a labial ulcer. A colleague ( who is a practice Nurse) went on a course which was new here in the UK. A clinic ran by 2 great Doctors, one a Gyn Oncologist and the other a Consultant Dermatologist. My friend was impressed with their teaching and case studies. I visited my GP and insisted on seeing this Oncologist. Because we have a National Health Service there was no cost involved.
I have been treated by this Oncologist since that date. He quickly diagnosed VIN III from biopsies and I've lost count of the many surgeries I've had. I also agreed to take part in early trials for PDT. Unfortunately the laser treatment wasn't successful for me.
I see my Oncologist every 6 months and am due for further surgery towards the end of this Summer which I'm dreading as it will be peri anal. The Oncologist is wonderful and treats my as a personal friend but really its a holding operation as this will never go away now. I just have to live with it and endure it.
I wish you all lots of luck and love.

Eileen L
Posts: 1
Joined: Mar 2011

Exactly on year ago on the 11 was when I had my first Vin surgery. My surgery was a tricky on, because I had dysplasia growing that looked like a califlower patch. Needless to say I had this going on for years as I thought it was a external hemmoroid. Well my oncologist had me booked into surgery within 2 weeks. As they got in there they had to take part of my left labis, and had to use a laser near my rectum, and also cut away my perimeium. After surgery I was feeling pretty good, until the 1.5 hr ride home, thats when everything started to wear off, then I felt like I had died and went straight to hell. I was in so much pain I could not stand myself, not to mention I was scared to death of taking a bowel movement. Well at least my bowels held out for three days, but that first one was shear hell. I surely used four bottles of lidocaine, 3 tube on silvadene cream before I could once again stand myself.
Now once again I am faced with a small groweth on my right side of my labia pretty close to my lympn nodes, and I fell like there is bumps on the inside of th same labia. My question is because of it being small will the doctor put me on that nasty adderall cream ort just do another surgery. Is catching it while it is small means that could possible mean that it has less damage done? Please may someone help me put my mind at ease until my oncologist appt. in 3 weeks. I would sure be grateful.
Thanks, Eileen

mlouise
Posts: 1
Joined: Jan 2011

Hey Eileen,

I'm 60 and was diagnosed with VIN3 in January, 2011. I wish I could give you some advise or encouragement on your condition but I don't have any experience. I would imagine, as with any disease, the earlier it's dealt with the better.

I will pray for you. Please let me know how you're doing.

Mary

lderouen
Posts: 3
Joined: Mar 2011

I too was diagnosed 5 years ago with Vin III had half of the right Vulvar removed and all of perineum. 2 years later I had a small area appear and they were able to remove it on a Friday and back to work on Monday. That one was nothing like the first were I was out for a month and half recovering. None of my stitches held so it was a nightmare. Bowel movements were the hardest. Now I was diagnosed again with it and will see my oncologist on 4/6/11 to see what he wants to do. I am pretty sure it will be the same type surgery as the first one but on my left side this time in 2 different areas upper and lower.
I have not used adderall cream so can not help you there. But as far as small area it should not be as difficult.
Any questions I will try to help the best I can.
Thanks Lauri

georginaheather
Posts: 1
Joined: Jun 2011

hi, i live in the uk and a few years ago i was diagnosed with vin iii i was 30 at the time and one of the rarest and worst cases my specialists had seen due to my age and extent of the problem, the reason i say this is that although it has now come back slightly i have had no major surgery. when my daughter was born i noticed small dark spots like ink had been sprayed on me i was misdiagnosed at this point and my docter made me fell like a time waster so i left it, but the patches grew and spread till my vulva was almost entirely covered when my husband told me i had to go be checked i had a biopsy done and was told i had vin iii and was to have my entire vagina removed and have it rebuilt from my inner thighs and was booked for surgery 7 days later, i was devistated, but i thank god that my specialist happened to talk in the coffee room to another docter who suggested i try imuquid cream so i started the course it was painfull but i have no scarring and the vinn almost completely cleared so all im trying to say is there are alternatives to surgery you just need to be informed please always ask about your other options because mine was so bad that if left a few months longer i would have had full blown cancer but still no surgery was needed. take care ;)

WhatNext123
Posts: 2
Joined: Jun 2011

I'm in Canada, I wish I could find a dr who knew what is going on! I've had so many colposcopy's I've lost count, only to tell me in the last 6 months after biopsy I need another one for VIN II. I tried to explain, but if I've had these lesions for as long as I can rememeber, and had a colposcopy 6 times in the last 3 years, why would I need another one now ? Shouldn't the dr have seen this? I have read about the acidic solution, never has any dr at any of the colpo's or pre surgery mark out apt did they ever use an acidic solution to see where all the areas actually were. Some of these areas I have been going to my famnily dr for over 4 years now, for her to tell me over and over it was an std (genital warts).

Well to catch up tp date, I have just had my VIN II laser surgery, only to find the actual biopsied area wasn't lasered, another area was near there, but now, one and a half weeks after surgery, there is a new lesion there. So Frustrated I don't even know what to do.

If anyone from the GTA/Toronto area knows a good gyno laser surgeon who actually preforms this, according to my gyno there is only one in my area, Please post the dr's name and approximate location. Thank you.

Also, how come it's so hard to find informations out about this condition, it's like no one has heard of it before.

kathmag
Posts: 2
Joined: Jun 2011

Don't worry - you are not alone in your ignorance. I have just had surgery for my 2nd bout of VIN III (just last Thursday) - the first was done back in February 2011 and until then, I had never heard of VIN III either. I am in Australia and my gynie is very knowledgeable on the subject. All I can suggest is you keep bombarding your doctor for information - don't let them get away with keeping you in the dark - it's your body and you have a right to know what's happening. Hopefully some of the other ladies reading this site will be able to assist you in finding a doctor near you who knows what this is all about. Consider surgery as an option to laser as the problem with lasering is there is no pathology remaining to look at and suss out what else is going on there.

keep us posted on how you are doing - you're not alone in this!

xxx

Paxdelux
Posts: 1
Joined: Aug 2013

Hi 

I am new to Vin III, have just been diagnosed and am living in rural Australia. My Gynie said I have lots of tiny spots and the best way to remove them is by laser ablation. You said you have a gynie that is very knowledgable... who is it and where does he live, please? My gynie sees 6 cases of VIN III a year so not so familiar with it. And I would have to travel 800 kms to the Royal Hospital for women in Sydney to get the laser treatment. 

I am still in shock with the diagnose, really would like someone who knows what they are doing to take care of me.

How are you now? Have you had more recurrence? Did you make any dietary changes, or begin alternative treatments?

Would love to hear from you. Thank you.

xxx

skeater
Posts: 1
Joined: Oct 2013

I was diagnosed with Vin III a few months ago and I had laser surgery in July.  They tell me they think they got it all.  But I'm starting to have some of the same symptoms as I did when I first found out I had it and I'm scared it may be coming back...  I'm only 29 years old  the doc told me what I have is very rare and very extreme...  no one in my family really understands what I'm going through and I'm not sure how to handle any of this...  my family tends to make me feel like I'm worrying over nothing because the docs said they got it all..  I'm just scared I guess and am looking for some advice on how to handle this.

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