Vain 3 to cancer

Has anyone had a history of CIN 3 leading to a hysterectomy and then 2 years later VAIN 3.   Does anyone have a history of VAIN 3  that progressed to cancer.    I'm HPV 16 positive and have been for 11 years with many procedures.    It just is not going away and I'm concerned.    My pathology report also showed P16 positive and Ki67 elevated.   I'm looking to hear from anyone that has had this type of experience.  Thanks!

Hi there, I’ve got VAIN 3 and have the same concern. Can I ask have you had VAIN 3 for 11 years? How have they been treating it? Thanks

I had RH 31.12.18 for cervical cancer that’s when they found VAIN.

No I had a history of CIN3 from 2008 to 2015.  Had several procedures - 2 cryo, 2 leeps, 2 cervical ablations and nothing worked.   I got a hysterectomy in 2015 because my cervix was severly shortened and they couldn't do anymore papsmears or ECC to check for dysplasia.   Last Sept they found Vain 3 at 3 different spots on the vaginal cuff.    I got a total vaginal ablation.   Next month I go for another colposcopy and the GYN/ONG said the recurrence could happen.  I've tested positive for HPV 16 since 2008.  It is persistent and I'm so afraid.  I was wondering if anyone had this happened and did it go away or did it eventually lead to cancer.   

Hi there

I've just had my second wide excision for VAIN III (last one 3.5 years ago) I have a HPV history of 4 years but that's only from the first time they tested for it. 

I spoke to my surgeon who's a consultant gyc on Wednesday before my operation and he tried to assure me that it takes a long time to progress up the scale from VAIN to cancer but im beginning to disagree. I have 6 monthly colposcopies and have done for the last 4 years. There was nothing on my test last may I was clear by December I'm testing at VAIN III. 

Its frightening and because it's rare there's barely any information about it. Im 35 years old and I feel like I've only just stepped on what is going to be a very long and tough road ahead 

I feel the same way  :(

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Sorry, just read this. What is total vaginal ablation of you don’t mind me asking? Have you tried the iliquimoud I take it? Is it useless? Sorry for all the questions.

Hi, is a wide incision where they take away the VAIN 3 or do they actually remove some of the vaginal canal? 

 

Ive has radical hysterectomy for cervical cancer and I’m still to have my first appointment for VaIN. It’s the 26th of this month. I have so many questions.

Hi there! I'm a VAIN 3 girl.

Over the years had persistent CIN 3 and ended up having total Hysterectomy in 2015.  6 month vault smear showed VAIN 3 which at the time I had not heard of it.  I am also HPV 16 positive.  I've had Aldara, wide excision and other bits but no success.  I go every 3 months for biopsies and for a while they were showing scar tissue but vault smear showing high grade so we knew it was still lurking.  I'm due for more surgery soon.

If anyone needs any advice about surgery or Aldara, give me a shout as I know how upsetting it can be as it is pretty rare and not talked about very much.

Jules xx

Hiya

Just to add to this thread, as I have vain 3.

I've recently had a radical hysterectomy for supected cc. My consultant said she would remove the top part of my vagina and hopefully this will get the vain 3. Not sure how much she has actually removed and i darent look... eek!

She did say it is likely to return though as its pretty impossible to guarantee removing it all.

xx

Hi jules, 

im desperate for my colposcopy on Tuesday. Is it just impossible to get rid of? I’m just scared about living with this and the possibility of vaginal cancer. What is the worst case scenario if you can never get rid of it? Thanks

I hope you’re recovering well from RH. I’m al pay 3 months post op for the same thing. What is the long term plan for VAIN? Thanks

Hi, I'm recovering well thanks apart from my bladder is not being very cooperative!

Before my op I had argon diathermy to blast the VAIN3 at the same time as I had the lletz.  I'm hoping that any remaining VAIN has been removed by the RH and that I dont have to worry about it for a while. But I think my consultant will keep an eye on the vain with vault smears. 

 

I'm not sure what other treatment there is though. My consultant was vague with a kind of "cross that bridge when we get to it" attitude.

xx

 

I had glassy cell cervical cancer in 1997. I wasn't ever tested for Vain but I am not sure whether it would have made a difference as my cancer wasn't HPV related so I probably wouldn't have had the related changes. However, I did go on to develop stage 2 vaginal cancer as a result of the radiotherapy for the cervical cancer. Treatment was by total pelvic exenteration. I had my vagina removed and rebuilt from a flap from my thigh. Perhaps not what you want to hear but I wanted to demonstrate that it is at least potentially curable and everything is not necessarily lost.

Karen 

I failed my trial without catheter after initially having it in for ten days. Had to have it in for another 6 days. I’m now back to normal so I hope the same happens for you and that you’re rid of the VAIN! Please keep us posted! 

That’s what I’m concerned about, having pelvic exenteration. Im

glad that it went successfully for you. Could I ask you some questions about it? 

Of course! Fire away!

Karen x 

Thank you! Firstly, how long did your surgery take? How long and difficult was recovery? 

Im Just worried about the quality of life afterwards although I know this is what I would do if it meant living. It’s all scary and it’s the unknown that makes me overthink. I’m young and obviously losing my vagina would mean no sex life, sounds trivial in the grand scheme of thing but still, a concern. Were you offered reconstructive surgery? 

Was there no no other option apart from total pelvic exenteration? Or was it just the safest route to take and you didn’t want to take any risks with other options? 

Im sorry if these aRe too personal and you don’t want to answer them. 

Thank you for sharing your experience. 

Ignor eye reconstruction, I re-read previous messages. I’ve been reading that much on here that I’m getting confused! Where are you based? I’m in Scotland. 

Hi Sunflower,

Please don't over think this and assume it will happen to you. Concentrate for now on your recovery. All could be well in time.

In answer to your questions. The operation took about ten hours. I had 4 surgeons. The gynae oncologist, the urologist, colorectal and plastics. I had an epidural and a GA. I was in high dependency for two nights and then on the ward for another twelve. The immediate post operative time is very challenging. It's a complex operation and it is rare for there not to be some kind of complication. In my case both my abdominal wound and leg wound opened up. They were dark times but they passed.

Recovery takes about a year but you are probably about 80 per cent recovered at three months. I was able to do my 10000 steps a day by then and normal service was resumed in the bedroom. I went on holiday 5 times during that first year and had some great times.

Currently I am still coming to terms with my new body. The urostomy is a piece of cake, the lady department fully satisfactory. Only the colostomy annoys me. I am just learning to do colonic irrigation which can keep the bowel quiet for 24 hours or more and that's looking promising.

So overall I would say (full honesty here) that the operation is not a pleasant experience. However it is perfectly possible to regain a very good quality of life afterwards. It is well worth It to get the chance to stay alive. 

Just to say, I didn't get offered reconstruction, I asked for it and got it. I have heard of others that have been too shy to ask and it didn't get offered. Hopefully these decisions will never be yours to make but if they are, be bold!

I am in the North East. I had my surgery done at James Cook in Middlesborough. Excellent surgeons!

Karen x