Vulval cancer: how Kathleen coped
Kathleen has been through more in her 49 years than most women: in 1994, at the age of 42, she was diagnosed with vulval cancer after finding a lump. Vulval cancer is considered quite rare. Kathleen told myDr her story, and how dealing with a life-threatening illness has inspired her to help other women by breaking the silence about gynaecological cancers.
Being diagnosed
It was Kathleen’s irregular periods, early menopause at age 39, and the fact she had had abnormal Pap smears and laser treatment that first led her to have a small lump in her vulva, next to the clitoris, investigated by a GP. Kathleen had been diagnosed with the human papilloma virus (the virus that causes genital warts) in 1988, although she didn’t remember being told this until after her diagnosis with cancer. This virus has been associated with the development of abnormal cells in the cervix, and may lead to the development of both cervical and vulval cancers.
She was also concerned about having 3 close family members with cancer: her father with lung cancer and both her mother and sister with breast cancer.
‘Over a period of 18 months I went to 2 GPs and 2 gynaecologists, only to be told that it is common to have lumps in the vulva,’ she says.
Kathleen was told the lump was not cancer, and that she could choose to have it removed if she liked. She and her husband decided she would have the cyst removed, and Kathleen had the procedure done in hospital. Three days later, Kathleen’s gynaecologist told her the lump was cancer, and told her to see a gynaecological oncologist immediately.
Kathleen says she had never even heard of this type of specialist. ‘If only I had known there was such a person I would have insisted on seeing one.’
Facing surgery and treatment
Kathleen says she felt angry and betrayed when she discovered her lump was cancerous: ‘I wondered who I was to trust from then on.’
‘I was absolutely frightened of what was going to be done to me,’ says Kathleen. ‘All I wanted them to do was just make me live, I had a husband and 3 children to live for.’
Surgeons removed Kathleen’s clitoris, vulva and lymph glands– ‘my womanhood’ she says. The procedure was followed by 6 weeks of radiation treatment.
Kathleen says she recovered reasonably well from the surgery, until she returned home and realised there was little support for women who had gone through similar procedures: it was regarded as a taboo subject best discussed behind closed doors.
Family and friends
Kathleen’s family was confused and angry at the time it took to diagnose and treat her cancer. While they have been supportive, Kathleen feels that ‘most of them think I should put all this behind me and get on with my life.
‘I don’t think they realise how passionate I am about this issue. I am dedicating my life to make sure another woman does not suffer the way that I have, mentally and physically.’
Staying healthy
Since her operation, Kathleen has had to avoid becoming too tired, or straining herself by lifting heavy objects. ‘The skin is very thin and sensitive in the vulva…I can’t sit for long periods as the blood does not flow through my legs very well.’
Kathleen admits that food has become a consolation since she chose not to have sex any more, and helps to soothe her. ‘I try to do small amounts of exercise. Swimming is great, but I have to be careful of the chlorine.’
Establishing GAIN
Kathleen is the founder of the Gynaecological Awareness Information Network (GAIN), a support and information service for women. Kathleen was motivated to establish GAIN as a result of ‘being treated like I was insane for speaking out about vulval cancer in society’.
‘I soon learnt that there is very little support for women suffering with all gynaecological conditions, whether they are cancerous or not,’ she says. ‘I had to find out why we tend to bury our heads in the sand and hope that the problem may go away.’
Kathleen placed an ad in a national women’s magazine and was overwhelmed by the response as women who had experienced similar conditions poured their hearts out. Kathleen says the age of many of the respondents surprised her. ‘I had been told that vulval cancer is supposed to happen to women who are 70 and over. Most of the women who wrote to me in Australia were 50 and under. This really concerns me.’
The role of GAIN
GAIN is concerned with providing information and support regarding gynaecological cancers and pre-cancerous conditions; endometriosis; STDs; infertility; menopause and polycystic ovaries.
Kathleen says one of the aims of GAIN was to put all gynaecological issues under one umbrella, as some issues are related to others.
‘For example, an STD is associated with some gynaecological cancers, which in turn after an operation can lead to infertility or menopause, which in turn can affect one’s sexuality, which in turn may affect one’s marriage and relationships with family members,’ she says.
GAIN also aims to educate women about genital examination and the resources that are available to ensure gynaecological health, as well as to help health professionals to handle the conditions effectively and with compassion.
The stigma of gynaecological disease
Kathleen says many women diagnosed with gynaecological diseases and conditions are too ashamed to seek support, and suffer in silence.
‘GAIN aims to encourage women to challenge the stigma attached to gynaecological issues,’ says Kathleen. ‘We should not feel uncomfortable discussing issues that are so important to our health.’
Kathleen agrees there is also a stigma attached to educating women about the importance of genital examination.
Kathleen’s advice for women who forgo Pap smears because they are embarrassed is simple: throw your embarrassment out the window and take charge of your own gynaecological health.
Gynaecological disease in Australia
Kathleen says that, according to Australian Institute of Health and Welfare statistics in 1996, more than 3500 Australian women deal with some form of gynaecological cancer each year.
If you are diagnosed with cancer
Kathleen encourages any woman who is diagnosed with vulval cancer, or another gynaecological condition, to educate themselves about their condition.
‘Gather all the information and awareness you can get from the medical professionals and also from someone who has had the same experience as you,’ she says. ‘It will help you make up your mind on how to deal with the situation, and to become more in control of your own health. Knowledge is power and power is knowledge.’
The future for Kathleen
‘Although I have been free of cancer for 7 years, I found another lump in my vulva last week,’ says Kathleen.
Kathleen’s gynaecological oncologist is waiting for 2 weeks to see how the lump develops. ‘I had a cyst cut out of my vulva 3 years ago, and it was benign. I just hope and pray that this one is OK too.’
‘I have decided to dedicate the rest of my life to help break down the barriers about gynaecological health. It has been a very male dominated area for a long time. It is time for more female input into gynaecological health, and the women affected in our society.
‘There is no point in neglecting your own health, or else you may not be here to see your children grow up.’
Last Reviewed: 02 April 2001
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