Vin3 surgery with no clear margins

Hello. I just got diagnosed with VIN3 and had surgery a week ago. i had a wide local incision of left labia and down to perineum. It is awful. My margins are positive. What have others done next? I am 48 years old and have already gone through menopause. Is surgery the best thing to keep doing? Is there anything else like chemo or radiation? Or do I have to have a skinning vulvectomy? Any help would be greatly appreciated. 

  • Hi ,

    Sorry for the slow reply. 

    I had surgery for for VIN3 and vulval cancer. They didn’t get a full 1cm margin so I had further surgery to widen the margin. I can’t say whether surgery is the best thing to keep doing, but that is what was recommended for me. I wasn’t offered any chemo or radiation as mine hadn’t spread to my lymph nodes. I have heard of other ladies having radiation even though it hadn’t  spread, so I think it must depend on the surgeon or other factors. That was for cancer and VIN though, not VIN alone. If you feel it’s important to know whether it’s an option then perhaps you could ask your consultant? 

    Sorry I can’t be of much help. I know how frustrating it is to have so many unanswered questions.  Happy to answer any questions you may have, if I am able to  

    Take care,

    Vulval cancer warrior xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi! Thank you so much for answering my questions. Has the VIN returned? Are you cancer free? I have read it can repair itself and it can come back with a vengenance. Are you around my age? Not sure if it matters, just trying to find a path and plan to move forward. Thanks so much!!!!

  • Hi ,

    My last check up was in January and it hadn’t returned then. That would have been 11 months after my surgery. I don’t have any new symptoms and am having my next check up soon so I’m really hoping I’ll get the all clear again. 

    Yes I was cancer free at my last check up and again I don’t have any symptoms, so I believe that’s still the case. I had an awful itch last time so my hope is that I would know if it had returned. 

    I am a little younger than you, I’m 39 now and was 37 when I was diagnosed. 

    No worries at all! I’m very happy to answer any questions, so ask as many as you like Slight smile

    Take care,

    Vulval cancer warrior xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi , sorry to hear what your going through! 
    I had surgery for VIN in January and after doing a biopsy they said it was vulva cancer but they didn’t want to do radiotherapy there as it would be very painful apparently!. So I had another op where they removed my margins and removed all lymph nodes as it had spread. I am having radiotherapy but not on my vulva it’s around my pelvic area where my lymph nodes were removed, 

    I’m the same age as you and my consultant said a vulvectomy would be a last resort for me so I’m hoping I’ll be all clear soon and that it doesn’t come back again! 

    Good luck and hope things work out for u x