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vin 3

Posted , 8 users are following.

davinia79
davinia79

Hi I have been diagnosed with vin 3 and have to have a partial vulvectomy and may need some radiotherapy also. But I have reason to believe this cancer does reoccur usually every 5 years or so. Does anyone know if you can claim any benefits for this type of health problem

0 likes, 22 replies

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  • karen41728
    karen41728 davinia79

    Posted

    Hi Davina how old are you have you had problems in the past with abnormal smear test and had any treatment only years ago I had abnormal cells in cervix for which I had leep and now have lichen planus x
    • davinia79
      davinia79 karen41728

      Posted

      Hi Karen I am 36 and also had abnormal cells in the cervix around 5 years ago x
    • karen41728
      karen41728 davinia79

      Posted

      I think there's a link with this do you? How did you find out about your other problem? I have this itching everywhere I have lichen planus in my mouth to I can't eat spicy foods x
    • davinia79
      davinia79 karen41728

      Posted

      Absolutely as after I had my abnormal cells removed I was tested for hpv which came back negative then 5 years down the line I discovered a lump the size of a pea which was very itchy and sore so I saw the nurse who said it was a genital wart and referred Mt to a gum clinic but once they looked at it they did a biopsy which came back as vin 3 which they said it was caused by hpv but I find it impossible as my last test was negative x
    • karen41728
      karen41728 davinia79

      Posted

      I wonder if they tell the truth half the time it was my nurse told me I had hpv my doctor said it's not detected so then the nurse disappeared I'm sure she got sacked, it's so hard to find anything out x
    • davinia79
      davinia79 karen41728

      Posted

      I know what you mean it took me a while to understand what vin actually was as apparently it is a very rare kind of skin cancer that usually affects women over the age of 50 so it's quite scary when it isn't explained properly apart from it comes back within 5 years and eventually leads to having an hysterectomy. X
  • Morrell1951
    Morrell1951 davinia79

    Posted

    Just pasting something from the internet here.

    Vulvar intraepithelial neoplasia (VIN)

    Squamous cell carcinoma of the vulva usually forms slowly over many years. Pre-cancerous changes often occur first and can last for several years. The medical term most often used for this pre-cancerous condition is vulvar intraepithelial neoplasia (VIN). "Intraepithelial" means that the abnormal cells are only found in the surface layer of the vulvar skin (epithelium).

    VIN is typed by how the lesions and cells look: usual-type VIN and differentiated-type VIN.. It is sometimes graded VIN2 and VIN3, with the number 3 indicating furthest progression toward a true cancer. However, many doctors use only one grade of VIN.

    Usual-type VIN occurs in younger women and is caused by HPV infection. When usual-type VIN changes into invasive squamous cell cancer, it becomes the basaloid or warty subtypes.

    Differentiated-type VIN tends to occur in older women and is not linked to HPV infection. It can progress to the keratinizing subtype of invasive squamous cell cancer.

    In the past, the term dysplasia was used instead of VIN, but this term is used much less often now. When talking about dysplasia, there is also a range of increasing progress toward cancer -- first, mild dysplasia; next, moderate dysplasia; then severe dysplasia; and, finally, carcinoma in situ.

    Although women with VIN have an increased risk of developing invasive vulvar cancer, most cases of VIN never progress to cancer. Still, since it is not possible to tell which cases will become cancers, treatment or close medical follow-up is needed.

    The risk of progression to cancer seems to be highest with VIN 3 and lower with VIN2. This risk can be altered with treatment. In one study, 88% of untreated VIN3 progressed to cancer, but of the women who were treated, only 4% developed vulvar cancer.

    • davinia79
      davinia79 Morrell1951

      Posted

      Hi thankyou for that information I have looked at others on the Internet but all have been different so wasn't too sure
    • hanny32508
      hanny32508 Morrell1951

      Posted

      Thanks Morrell, helpful.  Was just going to look things up myself.  Totally unfamiliar with VIN.  
  • Morrell1951
    Morrell1951 davinia79

    Posted

    Davinia, what do you mean health benefits? It's certainly good to get VIN3 treated before it becomes Squamous Cell cancer. Maybe the reason they told you 'maybe' radiotherapy was in case there turns out to be a little more progression that they thought. As my homework above said, squamous cell carcinoma is slow-growing. Somewhere else I read that 60% of women with vulvar SCC have LS. But only 4% of LS patients will get SCC – fewer to none among patients who are treating LS properly.
    • davinia79
      davinia79 Morrell1951

      Posted

      I wasn't sure if it was going to be an ongoing health problem after I have had a partial vulvectomy as I was told it will return and many women have had several operations one after another overs years with its reoccurrence causing problems with everyday life
    • dani2590
      dani2590 Morrell1951

      Posted

      I read that too Morrell, however I don't quite understand it. Over half of women who have SCC have LS. 60%. That percentage is quite high. But then it says only 4% of LS patients will get SCC. What I'd like to know is did these women who developed SCC treat their LS or not? What were the contributing factors to the development of SCC?
    • Morrell1951
      Morrell1951 dani2590

      Posted

      Safe to say most of the scc cases are in women who were undiagnosed. My sister is an oncology nurse and has seen it in elderly women who for sure were never treated.

    • suedm
      suedm dani2590

      Posted

      When I was diagnosed " only " 6- 7 years ago my internet researches showed that very little was known about the condition, a self reported case history research was undertaken in the States, which was  put on line. The extremely sad desperate women and occasionally some men wrote of the types of treatment or lack of it they were given. Much made my hair stand on end! The lack of information meant that some  women thought they were "dirty" and one even scrubbed herself with bleach every day to rid herself of the"infection". Male hormones were given sometimes female hormones hydrocortisone and moisturising creams, with little therapeutic effect, then more powerful,steroids were prescribed, and had been for about 4-5 years before I was diagnosed. The case histories and there were 360 were on line until about 5 years  ago. I was so horrified at my reading and got really down I became an ostrich and while looking up another condition I came across this site. this treatment hasn't been around for that long so reports of cancers of the vulva historically could well be irrelevant to future prognoses as we are getting treated. Take heart and try not to worry. Good luck

      Sue

    • davinia79
      davinia79 suedm

      Posted

      Thanks Sue those words mean much to me to be told it is caused through hpv virus does make me feel disgusted with myself although I have always been safe but unfortunately have had a past partner who wasn't but,thankfully I am a happily married woman now with a very supportive husband xx
    • dani2590
      dani2590 suedm

      Posted

      Thanks for the info Sue. Sad to read that women and men became so desperate for relief. I confused though, are you saying that the long term prognosis for us women with LS could in fact be better than what's written in the literature or worse? Hope that makes sense.
    • suedm
      suedm davinia79

      Posted

      in the 80's when HIV was first found the advice was have safe sex cos you are effectively sleeping (having sex with)with all the people your partner has slept with in the past. sadly that information has been lost over the years i think. There is now a HPV vacination for teenage girls which is good news. In my youth we didnt sllep with our boyfriends as pregnancy was a BIG issue 0 the social stigma etc, therefore the boys didnt normally press too hard with moral blackmail cos THEY would have to take the consequences to by marrying someone they didnt necessarily want to or be ready for. there is a lot of STD these days which lies "dormant" or symptom free until one wants to become pregnant - chlamydia. It is good your husband is supportive and you are so happy - so you must count your blessings every time you see him- that sounds preachy it isnt just that you are a lucky girl in manay ways! And learn to love yourself and put away those thoughts of self disgust, that is the past and one cant change it - but you can change the future!

      Good luck Davinia

      by the way n another post vulval warts was discussed you may find solace on that thread too- sorry i cant remember which it was and i delete them after reading- my inbox gets too full!- so much for being a rare condition!!

    • suedm
      suedm dani2590

      Posted

      I think i am saying we cant view the future by looking at the past as very little information came out internationally. I think i am saying we shouldnt be too fearful for the future as past information is sketchy- so yes take heart!

      Communications were not as instant or global as they are today and thus individual medics may not have had to treat many cases or understand what patients were presenting to them. Again if a doctor's interest is in children  or heart conditons they possibly hadnt read up on gynae problems so would refer to either a dermatologist who "didnt take the pants/knickers off" to look at the undercarriage or to gynaecologists who are surgeons and "like to use the knife"

      Nurses were/are taught to be non judgemental and accept that patients all have different anatomies and scrutiny of the vulva wasnt part of the remit. If one said that you had inflamation  then a flare up wouldnt be seen by the nurse when about to screen for cervical changes - she would ay come back when inflamation is less- or if too bad refer to the medic - who would act as above!

      In many ways we are at the "cutting edge of sorting out and understanding LS and i imagine that researchers and students of all sorts will be looking at websites like these for anacdotal evidence for "rare" conditions. i believe every post we write is of use to the sufferers and professionals - if they are not reading these posts WHY arent they?

       

    • dani2590
      dani2590 suedm

      Posted

      You make some good points Sue. I really hope doctors and scientists are beginning to understand this condition better. I'm in my 20's and I know some women on this forum have had LS for many many years before being diagnosed. I'm interested to seen if any breakthroughs in treatment/management come some time in the near future. Maybe I'm being too hopeful. I'm counting on Dr Goldstein to really lead this as he seems to be at the forefront when it comes to LS.
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