Vulva cancer very quick reoccurrence

  • Hi, I had surgery for vulva cancer 7 years ago! Very scary but had put it behind me as surgeon said he expected it to be a one off! Fast forward 7 years and I had it reoccurring so yet another wide local incision and sentinel lymph nodes removed, follow Up in March showed no cancer in margin and lymph nodes! Just been for check up…. Suspicious area found, possibly VIN? Am beyond devastated, will get biopsy but I know it’s happening again, only a few months post surgery! Has anyone else experience of this?
  • He ,

    I don’t have experience of this, but wanted to say I’m sorry you are potentially experiencing a reoccurrence so soon. 

    I had my vulval cancer removed last Feb, so I do know how it feels to have the diagnosis and surgery. Always here if you want to chat. 

    Take care,

    Vulval cancer warrior xx

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

  • Thankyou, I’m so shocked, feel I’m only just recovering from op mid Feb, can’t face it all again but will have to find the strength! X

  • Hi ,

    I can only imagine how shocked and disheartened you must feel. If there’s any chance it may not be VIN then I am keeping everything crossed for you. 

    I hope they get you in for a biopsy quickly so that you know where you stand. 

    I wish you the best of luck. Please feel free to let me know how you get on.

    Take care,

    Vulval cancer warrior xx

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

  • Thankyou, I have to apply daily steroid ointment to see if it responds which would indicate a ‘lichen sclerosis’ flare up and not VIN! But, I’m sure they will biopsy in a few weeks, what an ordeal!

    Hope you are well after your surgery last year! Do you have regular check ups? X

  • Hi ,

    I guess a biopsy will offer reassurance if they do it and it’s not VIN. Hopefully the steroid ointment will help though. 

    I am doing very well, thank you. It took a lot longer to be ok mentally than it did physically, but it has been over a year now. I still worry at times, but am trying to stay positive. Yes I have check ups, I am being seen 6 monthly now, which feels like such a long time. I can contact them at any time if I have concerns though. How often did you have check ups, if you don’t mind me asking? I hear of women having 3 monthly check ups to start with, but I had to fight to get 4 monthly. I’m hoping I’ll stay at 6 monthly for a while. 

    Vulval cancer warrior xx

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

  • I had 3 monthly check ups at The Christie’s Hospital for a year, then my local hospital for following 5 years, it was 4 monthly for a couple of years then 6 monthly! I was discharged last Feb, honestly never gave it a thought as surgeon said he was sure it was a one off!  Anyway, after a bad Covid infection last Sept 2 little leisions (spots) appeared, gynaecologist said it was nothing at all sinister and just inflammation post Covid! By Jan, 3 visits and a biopsy later I was diagnosed with cancer stade1b….within a month underwent surgery! 3 weeks after surgery results were all good….. so this is so worrying and a shock after only 3 months!!  Apparently, a rare cancer usually affecting older age group… I am 52 and was only 45 when I first had it! I developed lichen sclerosis about 8 years ago (well wasn’t aware if I had it before then, don’t think so???) and that has developed into cancer

  • Hi ,

    Thank you for sharing this with me. I often hear of women having check ups at similar intervals as you. It worries me that they don’t see me more often, but I am getting my head around it. Perhaps it’s because mine was only stage 1b.

    It must have been so upsetting for it to return after you had made it so far and even worse for it to have potentially returned again so soon. I’m so sorry you’re having to go through this. 

    I was also told it is a rare cancer that usually affects women over 65. I was 37 when I was diagnosed. 

    Vulval cancer warrior xx

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

  • Hi, my goodness you are very young! Did they give you any possible reason for this being triggered? They have said mine is because of lichen sclerosis, a symptom of thyroid problems which I started having just after my first daughter was born when I was 29! My vulva cancers were both stage 1b and I had area of VIN removed too! 

    6 months check ups does seem a long time, the consultants must feel very confident so I would take that positivity from them and try not to worry! I was told to check frequently which is difficult, specialist nurse suggested getting one of those ‘selfy sticks’ and  attaching a mirror to it? My Consultant at the Christie’s says vulva cancer is symptomatic and not asymptotic so you should feel symptoms with it, which I have done!

    I have 2 more weeks of steroid treatment then an appointment to decide whether to biopsy…. Can’t see any changes with steroid so far so am preparing mentally to go through it all again!

    take care and Thankyou for reaching out x 

  • Hi ,

    My GP originally referred me as she suspected I had lichen sclerosis and she wanted a biopsy done. They done a biopsy and it came back as VIN3 and then later vulva cancer, but they didn't confirm whether I had LS or not. when I asked the first consultant they said I most likely had LS. Then I moved to another consultant and they said it was most likely caused by the virus. So I never actually found out the likely cause.

    It always baffles me how 2 people can have the same diagnosis, at the same stage, yet their follow up frequency can be so different. I would feel far more confident with more regular check ups, but like you say they must be confident. I have been told to self examine too, but like you say it is difficult. I have been told the same about it being symptomatic and I too had symptom's, which offers some reassurance.

    I always think its best to prepare for the worst and then anything less is a bonus. I would love to stay in touch and hear how you get on. I will be keeping everything crossed for you.

    Vulval cancer warrior xx

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

  • Hi, Thankyou yes off course I’ll keep updating! It’s really good to ‘talk’ to someone who understands, Thankyou!

    I’m sorry to hear that you feel so worried with such a long gap between check ups,have you requested them more frequently? Even say something like you feel less check ups  is affecting your quality of life/mental well-being as it’s causing more worry and stress??

    Also, with a diagnosis of lichen sclerosis I was given a regime of care to prevent flare ups of this condition which could lead to the skin turning to VIN, then cancer! Basically, everyday wash with dermal wash  apply an emoliant barrier cream and apply very potent steroid ointment as prescribed….. in a flare every day for a few weeks, then alternate days then once a week to keep it under control! Have you been told anything like this?

    Another two weeks till my appointment, I can’t see any improvement with the steroid ointment, we’ll see! When is your next appointment? X