Vulva cancer - happy to help anyone on this journey

Hi.

5 years ago at 43 I was diagnosed with stage 3 vulval cancer. 
My cancer was caused by a skin condition called Lichen Sclerosus of which I was misdiagnosed for 38 years. I have had 4 surgery's and radiotherapy twice and now am  4 years in remission so if I can help anyone with tips during treatment or just a chat then please message me.

I started raising awareness of both these rare conditions as they seem to get much less awareness and is often why we misdiagnosed or diagnosed  late as nurses are not trained in vulval conditions so are missed during vulval checks and smear tests. 

It's hard enough getting a cancer diagnosis but one that's rare and embarrassing makes it a more lonely place. 
ClareB43 

Parents
  • Hi Claire

    Thank you for your post. I have just  been diagnosed with Vulval cancer (possibly stage 3). It is been so good to hear a positive story, so thank you. All of the stats and data I have read have been so gloomy and I feared the absolute worst case scenario. Vulval cancer is so rare and your post has given me a little glimmer of hope in what has been the worst week of my life. 

  • Hi [@NessaF]‍ 

    firstly ignore the stats and what you read online. Every cancer is different and the stats will look bad because VC is more common in those over 80 so many might not want any treatment or even die from something else so makes the stats seem bad.

    once you get all the results and treatment plan you will feel better.  The first week is the worse as your mind goes everywhere and you think the worse. 
    join a support group as having others to chat to always helps. 
    happy to chat more to . 
     

    Clare 

     

Reply
  • Hi [@NessaF]‍ 

    firstly ignore the stats and what you read online. Every cancer is different and the stats will look bad because VC is more common in those over 80 so many might not want any treatment or even die from something else so makes the stats seem bad.

    once you get all the results and treatment plan you will feel better.  The first week is the worse as your mind goes everywhere and you think the worse. 
    join a support group as having others to chat to always helps. 
    happy to chat more to . 
     

    Clare 

     

Children