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 was diagnosed with Vulva cancer in October last year. I had a total vulvectomy in February and a sentinel lymph node biopsy which showed that the cancer had spread so I had my lymph nodes removed from both sides of my groin at the end of April.

    I start radiotherapy in June and I was wondering if you could let me know what usually happens at the first appointment? Do you find out how much radiotherapy you need?

    Thanks in advance.

    X

  • Hello. I am waiting for a doctors appointment as I have noticed recently that I have been a bit itchy around around vulva and had a look this morning with a mirror and noticed a small open sore like hole at the entrance of my vagina and like a pale thickness on the right side of the opening of my vagina. When I see the doctor hopefully this week do you think they will refer me to a gynecologist? I'm really worried as I can't think what else is wrong with my vajayjay x

Reply
  • Hello. I am waiting for a doctors appointment as I have noticed recently that I have been a bit itchy around around vulva and had a look this morning with a mirror and noticed a small open sore like hole at the entrance of my vagina and like a pale thickness on the right side of the opening of my vagina. When I see the doctor hopefully this week do you think they will refer me to a gynecologist? I'm really worried as I can't think what else is wrong with my vajayjay x

Children