Hi, my name is Theresa and I'm one of the 1339 women diagnosed with vulval cancer in 2015.
Unfortunately my story is all too familiar. I'd suffered with itching for as long as I could remember, but when I went for my smear test, it was particularyly bad, the senior practice nurse said that I had warts and I was referred to the GUM clinic, it wasn't warts so I was then sent to gynae, after being told it was thrush four times I was eventually diagnosed after two years with Lichen Sclerosus and given a steroid cream to treat flare ups. I had check ups every year for three years.
In early 2015 I was in agony, I had an appointment due and tried to bring it forward (at least twice), I couldn't get in to see my GP so went to the local walk in centre, where they said I had a urine infection and gave me antibiotics. When I did get my appointment they did a biopsy and said to come back in two weeks time. My husband Steve wasn't due to come with me to the hospital, but his job finished early so he came with me, when the nurse called my name I said see you in a bit, she said do you want to come too, at that moment I knew it was cancer! (They had never asked if he wanted to come with me before).The cancer specialist nurse told me the news, she was so well organised, I had blood tests that day (Wednesday), was booked in for a ct scan for the Friday, and was due to see the oncologist on the Monday. The hardsest part was telling my parents and sister over the phone as they live so far away from me. We decided not to tell our son, who is autistic, as he thought you get cancer, you die. Four weeks later I had my surgery, a hemi vulvectomy to remove the vulvar and clitoris, the next day the surgeon came to see me, I wanted to know how it went and how many stitches there were, he said thirty stitches, I then asked are you still going to remove the lymph nodes, his reply, hell yes! Ok, I thought we got this, six weeks later I had the bilateral lymph node removal, six on the right side and eleven on the left, one came back with the cancer so I then had twenty five sessions of radiotherapy.
I was having regular check ups every three months, when in November last year I felt something wasn't right, I had a biopsy and it came back as differentiated VIN, I had check ups every six weeks after that, and then in febuary this year they decided to remove an area they weren't happy with, small op later and the results cam back as differentiated VIN again. I'm now on six monthly check ups, going through the menapause and have lymphodemia in both legs. I've had amazing support from my family and friends.
Women need to be made aware what to look out for, I'm angry that the nurse that did my smear test was not aware of Lichen Sclerosus, neither were the district nurses that came to check up on me, they hadn't heard of vulval cancer before. If the nursing profession don't know about it what chance have other women got!
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