Women 'should discuss vulvar cancer'

By Jane Elliott
BBC News Online health staff

'It's like men being embarrassed about testicular cancer'

When Pauline Barnes tells people she has had cancer she is amazed at how shocked people are.

Pauline has cancer of the vulva. But she has found that many women do not know they could be at risk of cancer of the vulva and indeed do not even know what it is.

The vulva is the skin between a woman's legs and made up of all the external genitalia, and some women are embarrassed about discussing a cancer in such an intimate place.

CANCER OF THE VULVA Around 1,000 women are diagnosed with the cancer each year It mainly affects women over 50, but it is becoming more common among younger women Symptoms can include soreness, a lump or a sore on the skin and bleeding or discharge

But Pauline, aged 58, says it is vital that women talk about the problem.

She decided to talk about her case to as part of Macmillan Cancer Relief's gynaecological cancer awareness week, organised to draw attention to some of the less publicised women's cancers.

Pauline said: "A lot of people who have found that I have cancer of the vulva, including a lot of women my age, say 'what is that'?

"I think at first you are embarrassed because the cancer is in that part of the body.

"It is like men being embarrassed because they have had testicular cancer. But why should you be?

"At the end of the day it is just a normal part of your body."

Life 'doesn't have to stop'

For years, Pauline had been suffering from a skin condition on her vulva and was seeing a dermatologist.

At a routine check-up, in October 2002, her dermatologist spotted some ulcers.

After biopsies, which showed she had both pre-cancerous and cancerous cells, she was referred to Liverpool Women's Hospital.

Telling my story, and raising awareness of gynaecological cancers, is my way of giving something back Pauline Barnes

Pauline, a council official, was told to prepare for the worst-case scenario, that she would need a full vulvectomy, although in the end she needed only the right part of her vulva removed.

She said: "The fact that I needed surgery was a positive thing as it meant I shouldn't need any treatment afterwards.

"Of course the prospect of the surgery was quite frightening, but waking up to learn that I had only had a partial vulvectomy was almost a pleasant surprise, although I was very sore and tender.

"The important thing to remember is that life doesn't have to stop. I went back to work after five months, yes my confidence had gone a bit, but it was good to get back.

"It certainly hasn't been a pleasant experience but my philosophy is that you've just got to be positive."

Following the operation she was told she needed further painful surgery to remove the lymph glands on the right-hand side of her groin.

Now doctors have found another lump and she is due to have more surgery soon.

But Pauline remains positive. "I am really optimistic, I have every confidence in the team.

"I did ask whether I would be having radiotherapy, but they said that because it was in the vulva it was not necessary because that was an area where the cancer could be fully contained."

She said she had received fantastic support from the cancer medics, including her Macmillan nurse.

But Pauline, from Runcorn, in Cheshire, said she was amazed at how little many women knew about gynaecological cancers.

"What did surprise me was the number of ladies who didn't know where the vulva was, which is why I think it is so important that we raise awareness of this specific cancer.

"Telling my story about being diagnosed with cancer of the vulva and raising awareness of gynaecological cancers is my way of giving something back for the wonderful care and support I was given."

Shelagh Roberts, Macmillan Clinical Nurse Specialist in Gynaecological Cancer and Specialist Palliative Care, at Liverpool Women's Hospital, said: "There are over 14,000 cases of gynaecological cancer diagnosed in the UK each year.

"An early detection of cancer gives the best possible chance of cure.

"We believe there is a lot women can do to help themselves by becoming more informed of these cancers and the importance of cervical screening, it does save lives, and attend for their smears when invited.

"Also women should become more self aware of their own body, and the development of symptoms which may indicate a cancer, and seek advice from their GP. The symptoms may include persistent abdominal pain or swelling, unusual discharge or bleeding, and itching and soreness.

"There may be a simple explanation but it should be checked by a GP."

For cancer information and support, contact the Macmillan CancerLine (Monday - Friday, 9.00am - 6.00pm) by freephone: 0808 808 2020, textphone: 0808 808 0121 or email: [e-mail]