Vulval Cancer: Symptoms, Diagnosis And Prevention

ericsphotography via Getty Images

Most people have never heard of vulval cancer - perhaps because it is fairly rare and affects less than 1 in 4 women out of every 100,000 in the UK.

However, in the second of our series highlighting cervical cancer week, despite being a lesser known cancer, it is important to recognise the symptoms and get tested as it is easy to diagnose, but most women present too late.

There is also the stigma of talking about the cancer. Julie Davis, 41, was diagnosed with vulval cancer but felt she couldn't talk to anyone about it. She said: "Sometimes I felt I could burst with the loneliness of not being able to talk to anyone."

We asked Adeola Olaitan, consultant gynaecological oncologist at the University College London and expert at women's cancer charity The Eve Appeal to explain what it is and what signs to look out for.

What are the symptoms?

The commonest symptom is itching. The woman might feel a raised lump or develop an ulcer that bleeds and may be painful.

How many women does it affect?

In 2010, there were 1,172 new cases of vulval cancer in the UK. It is a disease of older women with over 65% being over 65 years of age.

Is it easy to diagnose?

Vulval cancer is diagnosed by taking a small sample of the abnormal skin (biopsy) and sending it to the lab to test for cancer. t is a simple test and often done in the outpatients clinic. Thus it is easy to make a diagnosis but despite this a lot of women present late.

This is due to a combination of factors. The woman might be embarrassed about her symptoms and may be reluctant to tell the GP. The GP might not suspect vulval cancer as it is so rare and may treat the woman for common conditions such as thrush, only referring the woman to a specialist if the treatment does not work or the condition worsens.

How is it treated? What is the recovery rate?

Early vulval cancer is treated by simply cutting out the abnormal area. In more advanced disease the lymph glands in the groin have to be removed and this may be followed by radiotherapy treatment.

The cancer is fully curable in its early stages. In 1996-1999, 58% of adult vulval patients in England survived their cancer for five years or more. This reflects the fact that a number of women present with advanced disease which is more difficult to cure.

Here is Julie's story in more detail:

It all started in September 2012. I had a pain at the bottom of my left leg, I just woke up one day and it was there. I thought it was shingles so I went to the GP and because it was an emergency appointment I didn’t get to see my usual doctor.

It wasn’t shingles so I was advised to go home and come back in two weeks if didn’t get better. This went on for several weeks – back and forth, seeing different GPs who couldn’t diagnose the problem, given antibiotics, analgesic cream and told to come back again in two weeks.

By January 2013 the pain was so intense at times that I could not walk without the aid of crutches and would have three to four baths a night just to ease the pressure. At this point I had no vulval symptoms and my periods were still quite normal.

I started to notice that when I went to pass urine the pain was so bad I had to bite into a towel to prevent me from screaming. By now I must have started to associate the pain with a gynaecological problem. I had never had a smear test figured that because I wasn’t sexually active and all seemed okay down below, I would save myself the ordeal... and this knowledge was starting to worry me.

It was during an appointment with a physiotherapist that I had a ‘lightbulb moment’. He explained to me about neuro-tracking and pain responses, and it suddenly dawned that the pain I had while urinating was connected to the pain in my leg.

I plucked up the courage to take a look at my vulva and I was shocked, it was obvious that something was very wrong.

On 12 February 2013 -I recall the date as it was to be a life changing moment, I finally got to see my own usual GP. I explained that there was something very wrong and that it must be connected to my leg but I don’t think I was prepared for the look of shock on the doctor’s face.

I was diagnosed with vulval cancer on 22 April 2013. I have had several operations to remove the tumor and also the lymph nodes in my groin on both left and right sides. Cancer was found in both. When I woke up after removal of the tumor, for the first time in eight months, I was completely free of pain – I sobbed uncontrollably.

I started 28 courses of radiotherapy on 16 September and now have to live with the side effects. Radiotherapy has an effect on the ovaries resulting in early menopause – and of course I’ve been denied the right to a family of my own.

Then there’s the loneliness and the inability to talk to people about it. It’s a deeply intimate, personal cancer, a real conversation stopper, but I’m determined to break down the stigma attached to these diseases to ensure that other women are better informed and more able to discuss their symptoms.

On Monday 18 November I was told I was cancer free and just need to return for 3 monthly checks.

For more information, visit The Eve Appeal website.