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VIN 3

unicorn1234
Posts: 1
Joined: Mar 2015

Hi, I'm new and from the UK but unfortunately there is not much in the way of support for this specific condition in the UK.

I was diagnosed with VIN 3 in December and am currently being treated with Aldara cream.  Sometimes it really gets me down and I feel like I'll never be normal again!  Just hoped that someone who is further down the line with this condition can offer any advice.  I'm trying not to think too far ahead and just deal with the situation as it is right now but it's hard not to worry about the possibility of future disfiguring surgery, especially when I am the only income earner in our household.

Thanks for taking the time to read this and even more so if you can offer any advice.

teg
Posts: 13
Joined: Apr 2013

I am glad that you found this forum. It is a great source of information and support. I was diagnosed with vin3 in March 2013. I have had laser surgery and biopsy. i have been clear since my last surgery in January 2014. I have not had any other treatments besides surgery. So, hang in there. VIN is usually a very treatable condition.

Babukins
Posts: 1
Joined: Sep 2015

Hi Unicorn 1234, how are you doing with the Aldara treatment, and how are you overall?

i was recently diagnosed with Vin 3 and went through a wide local excision and reconstruction 4 weeks ago. I am still recovering, however I do want to reach out and let you know you aren't alone. 

I would be more than happy to let you know how my own surgery had been especially since I felt like no one could fully understand what I am going through since this condition seems quite rare.  

 

 

Beth3
Posts: 2
Joined: Nov 2015

I was recently diagnosed with 2 places of vin2 and 1 place with vin3 on my labias. I would like to know about your surgery and recovery if you feel comfortable sharing your story.  I had a choice of surgery or imiquimod cream. My oncologist did not biopsy my clitoris but says she sees it there and on the clitoral hood.  I am second guessing my choice so would like more information.  Were you given any options other than surgery?

Beth3
Posts: 2
Joined: Nov 2015

I was recently diagnosed with 2 places of vin2 and 1 place with vin3 on my labias. I would like to know about your surgery and recovery if you feel comfortable sharing your story.  I had a choice of surgery or imiquimod cream. My oncologist did not biopsy my clitoris but says she sees it there and on the clitoral hood.  I am second guessing my choice so would like more information.  Were you given any options other than surgery?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2541
Joined: Mar 2013

Beth3, VIN is a rare, and as you may see, it is a little slow / quiet here.  Are you seeing a gynecologic oncologist?  If you have any questions than let them know  you would like a second opinion.  A good doctor realizes that people want as much information as possible as you are making decisions regarind YOUR life.  

I am not a VIN survivor, I am from the Uterine board, and we all kind of check in on the other gyn boards.  

Vajayjay's picture
Vajayjay
Posts: 10
Joined: Feb 2016

Today is day 11 post vulvectomy for me and I really thought I would be doing a lot better by now. 

I have been searching and finally think I may have found someone with the same thing as me. Beth3 please let me know how you are and maybe we can chat? I know your post is from several months ago but maybe you can help ?

Thanks

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Just wanted to let you know that Beth3 has not been back on the boards since nov.24, 2015.  There are others that will be able to help you, but since this is rare, this board runs slow.  Don't give up and keep posting.  Best, Debrajo, uterine board

Vajayjay's picture
Vajayjay
Posts: 10
Joined: Feb 2016

Thank You. I thought I had found a couple but it seems they were only here once....so i guess I will just keep checking...

thank you!

Andeoup's picture
Andeoup
Posts: 29
Joined: Apr 2013

I hope you will feel like yourself soon. This is a horrible cancer. I hope you will find comfort from our support group. 

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