I’m 46 years old and in October 2014, I was diagnosed with vulva cancer.
It all started back in my 20’s with constant irritations in my vaginal area and doctors over the years diagnosing it as thrush.
Around five years ago, the irritation became uncomfortable particularly on the left hand side, but I carried on as normal cycling and running. However, it got to the point where it became sore and a small lump had developed, so I visited my GP.
I explained the symptoms and was prescribed an ointment to clear up the irritation. I was disappointed to learn it had been diagnosed as thrush once more, so I went back to my GP and was referred to another GP who specialised in dermatology.
It was then that I was initially diagnosed with a mild form of lichen sclerosis. The GP also advised that there was a small risk of this condition evolving into vulva cancer. A strong steroid cream was prescribed and at first it seemed to work, although after a while the lump didn’t reduce in size and started getting worse.
After about a year, it hadn’t improved, so I visited my GP once again, and was referred to a vulva specialist at Nottingham City Hospital, as well as a dermatologist. The vulva expert initially diagnosed genital eczema as agreed with the dermatologist and prescribed a different steroid cream. I started to use the cream but it was so painful and sore, I had to stop using it immediately.
At my follow up appointment a few weeks later, the vulva expert wasn’t available, and I saw a different dermatologist who said she’d not seen a lump like that before and scheduled me for a biopsy the following week.
When I attended my follow up appointment, I was told I had vulva cancer. I was shocked, as during the whole process, I thought the biopsy would remove the irritation and that would be the end of it. I was referred to a gynaecologist as a matter of urgency within two weeks.
The gynaecologist explained that a wide excision procedure would be performed, where they remove the whole left side of the vulva. Once the cancer is cut away, it would be examined to see how big the tumour was. The operation was scheduled for mid-November and went well, as I was no longer in pain. But, at the follow up appointment, it emerged that the tumour measured 2.2mm (the safe limit being 0.9mm). The next steps were lymph node removal and possible radiotherapy. I was asked if I wanted to enter onto a clinical trial, so instead of all the lymph nodes being removed in my groin, they would just take the sensory lymph node.
This meant being injected with radioactive dye followed by a PET CT scan, so that the sensory lymph node could be located. The trial was explained in more detail during the consultation and I was told that if the radioactive dye didn’t locate the sensory node, then full removal of the lymph nodes would still happen.
Just before Christmas, I had an ultrasound to find out if my lymph nodes were enlarged and that came back normal. This was good news; however the hospital insisted I still proceed with the trial, to make absolutely sure.
So I had the lymph node removal operation in January 2015. In the morning, I had the scan with the radioactive dye. Later on that day, I was taken down to theatre where my consultant was waiting with the scan results. I was anxious whether the scan had worked, but as the consultant approached me smiling, the scan had been a success and he knew exactly where the sensory node was and subsequently removed it. Two weeks later, I received the news that there was no cancer in the node, I was so relieved.
Ever since I’ve been on 2-monthly check ups for the first two years, and will continue with check-ups for another 3 years. The steroid cream will be used for the rest of my life, 2-3 times a week, along with special emollient for washing. So far, so good, I’m well healed and in no pain and, there has been no re-occurrence of the lichen sclerosis – I just have slight irritations from time to time, due to the scar tissue.
Although I had been palmed off in the past, I was very lucky that a GP in my practice specialised in dermatology and referred me; otherwise the outcome could have been a lot worse. I would encourage women who have an irritation that doesn’t go away, to insist on being referred to a gynaecologist.