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 Clare

    I read your post with interest as my partner has a confirmed diagnosis of lichen sclerosis - should she be having any kind of follow up screening do you know? She was diagnosed around 2 years or so ago but has had no follow up. She had a radical hysterectomy some years ago so no longer has smear tests 

    I'm just ending treatment for an early  non palpable  screening detected breast cancer so know how important early detection is ! 

    Many thanks for raising this subject xx

  • Hi,

    It is important to have at least a yearly check up with lichen sclerosus, unfortunately not many Gp's know a lot about this condition so should be referred to a specialist to make sure your using the correct steroid and using them regularly as research has shown regular use lowers the cancer risk and helps stop or slow progression and flare ups. Should also be using emollients to wash in and use as a barrier and moisturiser. 

  • Thank you Clare ..really helpful x

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