Anonymous journey
The following story of a woman’s experiences of vulva cancer has been shared with us anonymously.
My symptoms began in early 2017. I was aware of some sensitivity - slight stinging when I was showering. I then noticed a persistent itch in the vulva area. I assumed it was thrush and tried various over the counter creams.
Nothing was working so I made a doctor’s appointment. I accepted a telephone consultation because there was a long wait for face-to-face appointments. I was prescribed a stronger treatment for thrush, but after a fortnight there was still no improvement. I managed to see my usual GP in person who was incredibly thorough. She said there was a small area on the vulva that looked red and sore. She decided there and then that further investigation was needed. I was fast-tracked to a gynaecologist at my local hospital. I am so thankful to my GP for being proactive in moving things forward.
In the two weeks leading up to my appointment, I started Googling to try to find answers. I wouldn’t recommend doing the same as it made me feel more anxious. Ironically, I did come across a reference to vulva cancer on a U.S. website. The symptoms sounded similar, but the emphasis was on how rare it was, so I didn’t really give it too much thought.
At the local hospital I had a biopsy. This confirmed there was some evidence of cancer. I remember that the gynaecologist chose his words carefully and with sensitivity. I think he could see that I was upset and worried. He tried to reassure me that the condition could be treated effectively.
He referred me to The Royal Marsden under the care of Mr John Butler, Consultant Gynaecological Oncology Surgeon. Within a week, I had my first appointment at the hospital and several tests including an MRI and CT scan. As a result, I learnt that the cancer was at an early stage, stage 1a. Mr Butler explained that he would carry out a wide local excision procedure to remove the affected area.
I recovered quickly, but at the follow-up appointment I found out that the pathology report indicated that further surgery would be needed to remove more of the healthy tissue surrounding the original cancer site. This was to reduce the risk of cancer cells being left behind. I had this second procedure a few weeks later and it went well.
Whilst you never completely forget about it, I did start to put the experience behind me as best I could. I had recovered from both surgeries physically and I was getting back into the swing of things. I was having three and then four monthly ultrasounds of the groin and follow-up examinations.
Then around 18 months after my first diagnosis, during a routine ultrasound of the groin, the radiographer noticed a very slight increase in size in one of the lymph nodes. An initial needle biopsy came back clear, but a second biopsy a few weeks later showed that there were cancer cells.
I needed surgery to remove the lymph node. This time Mr Butler performed a new procedure where only the sentinel node (the first lymph node that cancer cells might spread to) was removed. He used cutting-edge technology and a special dye to identify the cancerous node. I felt relieved and fortunate to have had this new procedure. My groin healed well and when Mr Butler examined me a few weeks later he could barely locate the scar. He did a brilliant job. I then had daily sessions of radiotherapy over a period of several weeks.
I had a CT scan in October 2019 which came back clear. I felt like jumping for joy and that a huge burden had been lifted from my shoulders. I am now having three monthly check-ups and each month I do a self-check using a mirror. This helps me to be aware of what is normal for me and to recognise any changes.
I would advise anyone experiencing symptoms to avoid using the internet to self-diagnose. Please don’t hesitate to get checked and try to be seen - a phone consultation isn’t good enough in these situations. Also, if you can, overcome any embarrassment and use the correct terminology such as vagina or vulva so that you can explain your symptoms to your GP more precisely.
I am so grateful to have been referred to The Royal Marsden. It’s a wonderful hospital. I will, also, be forever thankful to Mr Butler for his tremendous skill, care and kindness. An experience like this does change you. You have a before and after. Also, this diagnosis is very personal in nature and so it can be difficult to talk about it. I do sometimes feel anxious about the future, but I try to make a conscious effort to push the experience to the back of my mind. I appreciate and enjoy my life as much as I can and feel incredibly grateful to those loved ones who have been there for me.