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Vulval cancer?? Freaking out

Posted , 11 users are following.

Joan1978
Joan1978

I saw a dermatologist almost a month ago, who said she didn't know if my white patches were LS and would need a biopsy, & said she'd refer me to a gynae.

I just had a phone call from the doctor to see if I'd got a gynae appointment yet (which I haven't). Apparently the dermatologist I saw thinks it could be early stages of vulval cancer. But didn't bother to tell me. Doctor is referring for an urgent appointment in next 2 weeks. I am FREAKING OUT!!!!

My symptoms are white patches on vulva & itching now and then. I thought it sounded like textbook LS but now I'm in a complete panic.

Any words of wisdom for me?

0 likes, 24 replies

24 Replies

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  • j02359
    j02359 Joan1978

    Posted

    Please keep as calm as you can.  The symptoms are LS symptoms.  The dermatologist might not be an expert.  I had a biopsy and it was very straightforward and confirmed LS and certainly not cancer.  Please focus on the liklihood of it being the same for you.  Every best wish.
  • powerwoman
    powerwoman Joan1978

    Posted

    Hi Joan

    Try to keep calm.  The doctor is more than likely just covering themselves as it definitely sounds like LS to me.  I hope they have given you clob to try to help in the meantime or something similar.

    I know it is is difficult but the likelihood of it being cancer is really very small indeed.  It is less than 4%.  It is very rare.

    Treat yourself to something nice and try to relax.

    Take care and let us know how you get on.

    Regards.

    Jan

    x 

    • j02359
      j02359 powerwoman

      Posted

      Lovely reply.  Just one thought: consultants don't like you to use clob before the biopsy 'cos it masks LS (thank goodness!)  Optimum is biopsy first and then start the clob, I think.  Best regards. 
    • carol501
      carol501 powerwoman

      Posted

      Hi this is Carol in ireland. Just wondering what is clob ? Never heaed of it before i use dermovate a steroid cream which is good for itch. I joined this forum as i had no one to discuss this topic with and i panic when i see a cut etc. Its a horrible disease has a huge effect on our lives. Men can have it cut off but if we do it grows back again but does anyone know why ? Its not fair. Really fed up with this problem. Carol
    • powerwoman
      powerwoman carol501

      Posted

      Hello Carol

      CLOB is just another name for Dermovate.  They are the same product.

      yes this is not fair!  But we have to deal with it!  I have cut out most of sugar and that helps a bit.  You have to try everything you can.

      Jan

    • Joan1978
      Joan1978 j02359

      Posted

      I'm not using any steroid cream for that reason smile Just a bit of jojoba & frankincense
    • Chrisy
      Chrisy Joan1978

      Posted

      Just for info we are recommended to use Clobetasol ointment not cream which contains ingredients which can cause irritation. I know some of you know this but I thought humanity know this. I found lots of doctors and gynaecologists do not recognise ls symptoms. Please don't panic and let us know how you get on.
  • sandra01720
    sandra01720 Joan1978

    Posted

    Many of us had/ have white patches and believe me, the itch is a very frequent complaint of LS sufferers. Apparently the kind of vulvar cancer we would be at risk for (low risk) is a slow growing kind.

    This disease has most of us freaking at some point but it just worsens symptoms. Try to do something relaxing and think positively

    Is there a possibility she doesn't know much about LS and didn't recognize what she was looking at?

    • carol501
      carol501 sandra01720

      Posted

      Hi sandra. When doctor gave me results he had a nurse with him neither heard of LS. They both started looking at a book !!!! Since then i hav a yearly check up with female doc in hospital. I get very nervous lot of the time. Keep thinking the worst. My husband not exactly very understanding it puts a strain in a relatioship unfort. Thanks carol

  • deborah82032
    deborah82032 Joan1978

    Posted

    Some of these doctors just want to feel important. The white patches definitely indicate LS. I didn't get a bioposy....just had Dr. confirm the LS. The white patches are the firat early signs of LS....not cancer. Yes, there could be a possibility of vulva cancer down the road if the LS is not kept under control.   Women live with this condition for years and  don't get cancer. Just use the cream (Clob) in small amount twice a week rubbing it in gently for 90 seconds. This gets the cream to the deeper layers of skin. No need to panic.....Anything on your body that is inflammed or chronic has to be managed or watched.
  • linda22319
    linda22319 Joan1978

    Posted

    The white patches and itching are classics LS signs, cancer can happen but very rare. My dermatologist did my biopsy, but it took almost 18 months of doctors and trying all sorts of things for what they thought I had. So I went a long time without correct treatment and no cancer. Just take a deep breath, in the meantime use a barrier ointment or cream for the area to help relieve it some.
  • barbara49618
    barbara49618 Joan1978

    Posted

    I agree with the other posts. Stress makes it worse. If it helps your frustration with the doctor, I had a very respected doctor tell me I had shingles down there! Apparently it looks similar. She took swabs and told me I was a conundrum. Handed me estrace and sent me home. That was almost 10 years ago. I have seen countless doctors since, one recently told me I couldn't have LS because it was too rare. Really? All this resulted in me needing emergency surgery to open the vagianal canal which had completely closed causing urine to back up into my uterus. I was a mess. Be agressive with your doctors. I don't take their word anymore.
    • carol501
      carol501 barbara49618

      Posted

      That is just awful neglect from doctors. I have it 10 or 11 yrs now. Hardly ever have itch just some cuts come and go today slight burning dont no why ? Anyone know what causes burning feeling redish area ? Doctors i think need to study this disease seriously learn about it and maybe come up with a cure. Why men can be cured is a mystery i dont understand that. So annoying suffering with it depressing and scary. They say its a slow to develop cancer but how slow, does anyone know .
    • Chrisy
      Chrisy carol501

      Posted

      They are usually cured having a circumcision which removes the skin most affected. Not a l ways cured if they are affected anally. I have wondered if removal of the labia would help us if done early enough. It is a procedure frowned upon when done for religious reasons, but I sometimes wonder if it might help some of us.
    • barbara49618
      barbara49618 Chrisy

      Posted

      I have no labia left but still have the LS.

      I don't think it would get rid of it since it's an auto immune condition.

    • Chrisy
      Chrisy barbara49618

      Posted

      That's a thought and why I like this forum. It gives us New perspectives
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