VIN 3

unicorn1234
unicorn1234 Member Posts: 1
edited January 12 in Gynecological Cancers (other than ovarian and uterine) #1

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.

Comments

  • teg
    teg Member Posts: 13 Member
    #2
    Hang in There

    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
    Babukins Member Posts: 1
    #3
    VIN 3 - wide local excision

    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.  

     

     

  • Andeoup
    Andeoup Member Posts: 29
    #4
    Prayers

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

  • Beth3
    Beth3 Member Posts: 2
    #5
    Babukins said:

    VIN 3 - wide local excision

    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.  

     

     

    I was recently diagnosed with

    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
    Beth3 Member Posts: 2
    #6
    Babukins said:

    VIN 3 - wide local excision

    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.  

     

     

    I was recently diagnosed with

    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
    NoTimeForCancer Member Posts: 3,505 Member
    #7
    Beth3 said:

    I was recently diagnosed with

    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, VIN is a rare, and as

    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
    Vajayjay Member Posts: 10
    #8
    Beth3 said:

    I was recently diagnosed with

    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?

    I am 11 days post op vulvectomy

    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
    debrajo Member Posts: 1,095 Member
    #9
    Vajayjay said:

    I am 11 days post op vulvectomy

    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

    So Sorry!

    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
    Vajayjay Member Posts: 10
    #10
    debrajo said:

    So Sorry!

    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

    Thank You

    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!

  • lauriegb
    lauriegb Member Posts: 12 Member
    #11
    https://csn.cancer.org/discussion/comment/1515276#Comment_1515276

    Hi there, I’m not sure if you still check this site or receive messages, but thought I would give it a shot. I hope you are still doing amazing!! I am scheduled for the same surgery with CUSA in two weeks (7/25). There still is not much information out there 7 years later. I have been diagnosed with VIN2 but have several areas that are large. The oncologist said she will need to take “a large chunk. I read the surgery is about an hour, is that correct? I plan to ask more at pre-op even though I’m not really sure WHAT to ask. My concern is after surgery. How long does it hinder sitting, healing time, is the surgery considered “involved” or just superficial? I know everyone’s situation is different, but I wonder if this is not that bad, which is the impression my oncologist gave me (besides extremely uncomfortable and learning how to cope/adjust)? I know she sees much worse, but this seems a little intense to me.

    I appreciate any information, guidance, encouragement

    God bless!

  • Aussiegrandma
    Aussiegrandma Member Posts: 1 *
    #12

    Just being diagnosed with in now. Very worried

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,505 Member
    #13

    Aussiegrandma, I am a visitor from the Uterine/Endometrial board and check in on the other gyn boards frequently.

    While I cannot comment on what you are going through, and it can be a little quiet here, I wanted to give you support.

    I know there are some AMAZING women here who have gone through this but they might not stop back often. This is rare I can imagine how isolating it must seem. Sending you hugs

  • missmichl
    missmichl Member Posts: 4 Member
    #14
    https://csn.cancer.org/discussion/comment/1710429#Comment_1710429

    I was diagnosed December 6, 2023. I am trying to see if there are options other than surgery. VIN III possible invasion on entire left labia and 3-4 smaller spots on right suspected VIN II. I am terrified of the surgery and the recovery. It is almost impossible to find information out there. The symptoms made me jump at the possibility of surgery until I researched what exactly what a "simple vulvectomy" was.. I was hoping to find more information here but it is lacking everywhere.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,505 Member
    #15

    mismichl, I am a visitor from the Uterine page. I don't have any suggestions for you and hope that you connect with someone. The rare gynecologic cancers could have me sit and weep all day as you search for others to talk to. I do hope someone reaches out and/or you find more information. Hugs dear one.

  • nan24
    nan24 Member Posts: 9 Member
    #16

    Missmichl, I was just diagnosed a few weeks ago. I have appt this month with gyn/onc. I am scared of what all they will say. Have you seen the gyn/oncologist yet?.

  • missmichl
    missmichl Member Posts: 4 Member
    #17

    I saw one in December that said they were going to do immediate surgery. They kept putting it off because they wanted to do it in their surgery center instead of the hospital (more money for them) I still didn't have a surgery scheduled as of Wednesday so I contacted another gyn/onc in my area. I saw her Thursday and she scheduled my surgery for the 13th of February. I see her again this Thursday for a preoperative appointment and then I will know just how much this one wants remove. This gyn/onc will admit me to hospital for a few days after which is a bit of a relief for me as I am terrified of the stitches opening (which happens in 60% of cases). Now that surgery is imminent I am very nervous. I have been recovering from foot surgery and have been cooped up for 3 months already! I have purchased many supplies to try to make my recovery at home easier (hopefully). Nothing is easy about this at all.

  • missmichl
    missmichl Member Posts: 4 Member
    #18
    https://csn.cancer.org/discussion/comment/1712987#Comment_1712987
    https://csn.cancer.org/discussion/comment/1712987#Comment_1712987

     saw one in December that said they were going to do immediate surgery. They kept putting it off because they wanted to do it in their surgery center instead of the hospital (more money for them) I still didn't have a surgery scheduled as of Wednesday so I contacted another gyn/onc in my area. I saw her Thursday and she scheduled my surgery for the 13th of February. I see her again this Thursday for a preoperative appointment and then I will know just how much this one wants remove. This gyn/onc will admit me to hospital for a few days after which is a bit of a relief for me as I am terrified of the stitches opening (which happens in 60% of cases). Now that surgery is imminent I am very nervous. I have been recovering from foot surgery and have been cooped up for 3 months already! I have purchased many supplies to try to make my recovery at home easier (hopefully). Nothing is easy about this at all.

  • nan24
    nan24 Member Posts: 9 Member
    #19
    https://csn.cancer.org/discussion/comment/1713038#Comment_1713038

    Missmichl: Please keep me updated. Seems there aren’t many folks on here right now going thru this.

  • missmichl
    missmichl Member Posts: 4 Member
    #20
    https://csn.cancer.org/discussion/comment/1713039#Comment_1713039
    https://csn.cancer.org/discussion/comment/1713039#Comment_1713039

    I was recovering from foot surgery when I found out so I have had lots of time to research. It is a rare diagnosis it's hard to find women who are going through this. I have scanned all social media and there are a few people on Ticktok and Instagram (o.k. but not really helpful) but I found 3 Facebook groups that are active and it has been a comfort to read others experiences. One is VIN, Vulvar, AIN, and vaginal cancer support group, another is VIN support group, and Cervical Ovarian Vulvar All gynecological cancers support group. Hope this helps a little. Let me know how your appointment goes.

  • nan24
    nan24 Member Posts: 9 Member
    #21

    Missmichl just wanted to see how you are doing?

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