The Lived Experience of Women With Cancer of the Vulva

Hilary Jefferies, PhD, BSc (Hons); Collette Clifford, PhD, MS, DANS, Dip N, RN, RNT


Cancer Nurs. 2012;35(5):382-389. 

In This Article


Cancer of the vulva is a comparatively rare cancer accounting for between 3% and 5% of gynecological malignancies[1] or approximately 1000 women in the United Kingdom, 3900 in the United States, and 27,000 women worldwide each year. Although more prevalent in older women, in recent years, younger women are being affected because of the human papilloma virus, which causes a condition known as vulvar intraepithelial neoplasia (VIN 3).[2] Infection with genital warts may also be a precursor to this condition.[3,4] Other predisposing factors are provided in Table 1. Symptoms include pruritus, pain, burning, soreness, bleeding, or a visible lesion. There may also be color changes of the affected area. Squamous carcinoma is the most common histological type arising in 85% to 90% of cases, but other types such as adenocarcinoma, melanoma, and Bartholin's gland cancers may also occur.[1]

The treatment is the surgical excision of the affected area, together with a 1-cm area of healthy tissue. The depth of invasion of the tumor impacts the extent of the surgery, which is staged according to the International Federation of Gynecology and Obstetrics.[5]

Although a review of the literature revealed a paucity of studies, which produced limited insights into the wider impact of this disease[6] (accepted for publication), it is clear that a diagnosis of cancer of the vulva and the subsequent treatment do have an effect on physical, psychological, and sexual functioning of these women. The wider implications of the disease are less well-known because little work has been done to capture the women's feelings about their experiences. Only 1 study[7] has included British women 16 years ago.

To address this gap in nursing knowledge and to explore the women's own lived experience, an interpretative phenomenological research study, based on the work of Heidegger[8] and van Manen[9] was undertaken to explore the experiences of 13 women who were younger than 50 years at the time they were diagnosed with cancer of the vulva and living in the United Kingdom. The women were purposively sampled between 6 months and 5 years after their diagnosis, after attendance at a regional referral center. Ethical approval was granted by the Local Research Ethics Committee, and all the principles were adhered to.

Many phenomenological researchers have just 1 question to ask their respondents, such as "Can you tell me about the time you were diagnosed with cancer?" However, a more detailed approach using a semistructured interview was used with a series of 33 questions. These were used in a set order to ask the women to tell their stories about what it is like, what their feelings were, and their understanding of the events after their diagnosis. The underlying emphasis was "what was it like for you?" from the time before the diagnosis was made. This model was influenced by the review of the literature and through the professional experience of the first author (H.J.) that indicated that women may experience symptoms for some time before the diagnosis is made. For example, the first question asked was "can you tell me why you went to see your general practitioner (family doctor) at the beginning?" The supplementary questions were "what symptoms did you have to make you go and see him?" and "did you have any thoughts about what might be wrong?" The interviews were conducted by the first author (H.J.). Further details of this approach can be found elsewhere.[10]

The interview was divided into sections to cover the different times in a patient's illness to give the interview a logical sequence, for example, from the onset of symptoms, to discharge from hospital, physical effects after the operation, emotional and sexual effects after the operation, and the involvement of the husband/partner and the care she received. The last questions focused on their perception of how their lives are now, a key issue in this study. Each woman was interviewed once. An interpretative phenomenological approach is appropriate when little is known about an experience although it is recognized that a longitudinal study may have resulted in a different pattern of findings.

The interviews lasted between 1 hour 20 minutes and 3 hours 15 minutes. Data were managed in accordance with good practice, and tapes and transcriptions were stored in a locked cupboard. The respondents were given pseudonyms to protect their anonymity and maintain confidentiality. Table 2 reflects the demographic details of the women sampled.

The data were analyzed using framework analysis described by Ritchie and Spencer.[11] It has been used in a study that posed a similar research question. Scott et al[12] explored 17 patients' initial experiences and reactions to developing symptoms of oral cancer and their relationship with the healthcare professional involved in their care. Framework analysis has also been used in a study that addressed cancer patients' information needs and information-seeking behavior[13] and was therefore an appropriate tool to use in this study. It involved a systematic process of sifting, charting, and sorting data into key issues and themes by following a well-defined procedure of familiarization, identifying a thematic framework, indexing, charting and mapping, and making interpretation. The text was marked by numbering the lines of the interviews so that they could readily be identified, interview by interview. For example, 1.3.47 referred to respondent number 1, page 3, and line 47 of the interview. The framework was then devised according to the principles suggested by Ritchie and Spencer.[11] A column was drawn on the left hand side of each page, and the pseudonyms of the respondents were written in this column in the same order. Horizontal lines were drawn to separate the comments of 1 respondent from the next. An example of the data analysis regarding the women's presentation of symptoms is given in Table 3.

This framework enabled the whole data for each respondent to be reviewed easily, giving structure and consistency to the analysis. It was also possible to audit the analysis and reconsider ideas because the analytical process has been documented and therefore accessible. The data analysis was conducted by both authors to ensure accuracy. This article focuses on the overall finding, the lived experience of the women, and describes the "essence" or overview of their unique experience. The women described as follows:

It was probably three or four months of just going back and forward to the doctor, and nobody examined me. Ria (1.24–28)
It's something many people haven't heard of that and you say to people "I've got cancer and where" and people say "Well, I've never heard of that." Laura (45.1493–5)
There was no kind of information about cancer of the vulva. No, it's whether there's no information or you don't know where to look. Stella (53.1781–3)
No-one talked about how our lives might be different. Josie (45.1499)
I can't talk about it because nobody really understands. Denise (31.1024)

The notion that seemed to epitomize all these feelings is reflected within the concept of invisibility. The word invisible is associated with the word visible and the verb to see, meaning something that is noticed or detected, something that is examined, or something that is understood. It may also refer to something that is discovered, encountered, or anticipated.[14] For something to be invisible, it has the opposite meaning. It may be hidden or too small to be seen. It may also be invisible as it is not heard of or talked about and consequently not understood.

The study that led to these findings was developed in the framework described by van Manen[9] in which analysis is influenced by consideration of the key contexts of lived body, lived relationship, lived space, and lived time.[9] From this perspective, the concept of invisibility is refers to something that "no one can see," "no one has heard of," and "no one talks about." These characteristics have had both positive and negative effects.

Invisibility: No One Can See It

From the aspect of the "lived body," Van Manen[9] states that we are always bodily in the world. In our physical presence and presentation of self, we reveal something about ourselves. However, we also conceal things for different reasons. For example, over the years, social policies, popular culture, religious teachings, and laws have led people living within a particular society to understand what is "acceptable" in terms of behavior, dress, and language. Cancer of the vulva occurs in an area of the body that is seen as "private" in our culture; it is invisible in everyday life. The concept of "invisibility: no one can see it" draws on this association with a private part of the body. It makes it hard for the women affected to discuss their problems openly. Moreover, the same applies to husbands/partners, friends, and family in the wider society as this condition is not discussed as openly as other conditions because of the sensitivity of discussing very private parts of the body. The fact that no one can see it and no one talks about it reinforces an idea of the condition being invisible to society.

Most women reported that they had visited their general practitioner (GP) many times for many months or even years before their diagnosis of cancer was made. Here the invisibility of the disease was also present as illustrated by the remarks made by some women that their disease was not seen, as the physicians had not looked at the area and examined them,

He (GP) didn't even look at the vulval area underneath, he didn't give me an internal and he just said "It is a cyst." Kay (2.42–3)

Presumptions were made that the symptoms were caused by a benign condition, as Kay recalled,

But my GP said it was a cyst, he give (sic) me some antibiotics and sent me away. Kay (1.16–18)

The fact that initially the disease may be too small to be seen with the naked eye adds to this view. In some cases, the vulval tissue does not look grossly abnormal and the invisibility of the precancerous condition VIN 3 was highlighted by Eve, who remarked that it is only when she is seen in the specialist vulva clinic and acetic acid is applied to the area that any abnormality is detected.

There's not really much to see. It's usually only on the cameras that they can see it and they put a dye on. Then you can see it on the camera. If you were at home you wouldn't know any different (sic). Eve (37.899–902)

Some women were seen by consultant gynecologists at their local district general hospital where the condition was not recognized and diagnosed,

He (consultant gynecologist) said "You've got nothing to worry about, it is just a wart or a cyst." Sarah (5.104–5)

The diagnosis may not have been made because it is a rare condition. Kay referred to her GP as not having seen it before,

I think some of the doctors haven't seen it before as it is so rare. Kay (55.1854)

Four women were referred to a genitourinary (GU) clinic, as a sexually transmitted disease was suspected,

She (GP) said "I think you've got herpes" and told me to go to the GU clinic, which I wasn't very happy about. Denise (2.61–63, 1.28–34)

Other women recalled their experience of going from one hospital to another, trying to find a resolution over a period, and were seen by different physicians in various hospitals,

So I went to see the GP and he sent me to Hospital A. and then to Hospital B, then to an Obstetrician at C. They said there was nothing wrong. I asked for a second opinion, and so I went to D. It was about 4 years from the time of my first symptoms. Donna (1. 15–19, 2.41–2)

The women's symptoms of itching or an ulcer impacted on them physically as micturition was affected, and their sleeping pattern was disturbed. The impact of these symptoms was unseen by society, and as the women gave an outward appearance of looking well, they were able to preserve the invisibility of their illness. For example, they adapted the clothes they wore, as Josie explained,

I bought this long vest; it came to my knees. I just went round with long skirts on and (did) not wear anything underneath. Josie (9.29, 63.84–6)

The notion of something being invisible because no one can see it illustrates various examples of the verb to see. Here, the physicians did not see, look, or examine the women. At other times, the presentation of the disease was too small to be seen with the naked eye. It is manifest within the component of the lived body as the illness affects an area of the body that is normally hidden from view. It is also evident within the component of lived time through the women's experiences of a delay in obtaining a diagnosis. It is connected to lived space. In the example cited, the lived space is the GU clinic and the stigma associated with this and the local hospital where the disease was not recognized.

The invisible nature of their surgery has had a positive impact for some women. Anne compared herself more favorably with women with breast cancer, as the effects of the surgery were hidden from view,

It's different to a mastectomy, because people can see it where you know with this nobody would know. Anne (16.540–1)

Other women are unable to hide the invisibility of their condition as they have developed lower lymphedema, which is visible to society.

Invisibility: No One Has Heard of It

The women expressed the sentiment that not only had the physicians not seen it before, also, no one has heard of it.

Four women had lichen sclerosis or VIN 3. Eve who had VIN 3 and Josie who had lichen sclerosis held the opinion that no one had heard of these conditions,

When you say to someone "VIN," they haven't got a clue what it is. It's like a new thing out that no-one's heard of. When I told my mom and that, she just said "What?" We had to tell all the family, they didn't know what it was. Eve (39. 959–960)
You always hear of eczema, you always hear of psoriasis, but nobody's heard of lichen sclerosis. Josie (61.2037–2041)

After their diagnosis of cancer of the vulva, several women reported that they, their family, and their friends had never heard of it,

It's something many people haven't heard of. Laura (45.1493)

This is also linked to a lack of knowledge about the female genital area, as several women had friends who presumed they would need a hysterectomy,

And if you say to people you've had cancer of the vulva they all think of a hysterectomy, they don't really know, most people, or a lot of people what the vulva is. Josie (48.1614–6)

The invisible nature of the disease and the impact of surgery may have had a greater impact as all the women in the study perceived that their verbal and written informational needs had not been met. This included information given at the time the diagnosis was made, as well as information regarding their surgery. Julie recalled,

This doctor just blurted it out, said "It's cancer, we've got to do a vulvectomy and a lymphectomy," and I was just given two pamphlets and that was it, and "Go and wait outside." Julie (3.90–2, 13.433–5)

The concept of "invisibility: no one has heard of it" was voiced by the women themselves and also by GPs and family and friends. It is reflected within the existentials of lived body because of the area affected and the women's lived relationship with healthcare professionals and her family and friends. The characteristic of "no one had heard of it" demonstrates a lack of awareness. The women recalled a deficit of information at the GP's surgery, local hospital, and the cancer centers, that is, in the lived space. It is also linked to lived time as the women's informational needs were not met throughout the disease trajectory. As a result of this, the women searched for information and described their increased sense of isolation and aloneness and feeling that they were the only one with this condition.[15]

Invisibility: No One Talked About It

The concept of invisibility is also associated with the perception that no one talks about either the precancerous conditions associated with this disease or the disease itself.

"Invisibility: no one talked about it" denotes that the invisibility of cancer of the vulva also has a "muted nature." There are several strands to this. It reflects unwillingness on the part of the women themselves to talk about their diagnosis and treatment with their family and friends and also with the healthcare professionals involved in their care. The physicians also seemed to display a reluctance to talk to the women about their diagnosis and how the impact of their treatment may affect them physically, psychologically, and sexually. Whereas the physical aspects may be seen by the physicians and the women themselves, for example, with the development of lymphedema, other changes such as changes in psychological and sexual functioning remain unseen except to the woman herself and her husband/partner. In addition, cancer of the vulva and precancerous changes are rarely mentioned in the media, and this contributes to the opinion that no one has heard of it. This is probably because of the fact that the disease affects an area of the body that is considered private and is seldom talked about. Denise remarked on this,

This kind of thing isn't talked about. I think it's because you feel its part of your body that you don't normally talk about, you know… this part of your body isn't and it's a part that's not normally talked about. Denise (28.944–8)

Many of the women found it difficult to talk to their families because it involved a hidden and private part of the body. Julie remarked about this,

Very close friends I've been able to tell them in, in quite detail of what I've had done but other friends it's just "I've had cancer and I've had an operation and I'm all right now," sort of thing. It's a personal place en't (sic) it just to tell everybody en't it (sic)? Julie (51.1711–1713)

The women also demonstrated the muted nature of the invisibility of cancer of the vulva as they were reluctant to take the initiative in talking to their physician. This may be linked to the gender of the physicians, most of whom were male. Josie recalled,

I suppose especially being a man because a man wouldn't understand the emotional side of things like a woman would. Josie (66.2217–24)

There may also be a sense of embarrassment and a lack of openness, as discussed by Stella,

It's not the sort of thing you could actually go to somebody and say "We can't have sex because it's too awkward"… I would be too embarrassed to go to somebody and say that. Stella (44.1480–6)

There was also a time element involved, as Josie felt that the medical staff members were too busy,

I perhaps might have asked them if there was someone that I could talk to if he (consultant gynecology oncologist) hadn't got the time because I suppose he's a very busy man. Josie (66.2217–9)

Several women recounted that at the time of their referral to the cancer center, no one had talked to them about their probable diagnosis, and consequently, they were shocked to be told they had cancer. Donna recalled,

I never dreamt it was cancer. It was just a total shock… I never heard anything after he said the word cancer. I was expecting something minor. I felt angry, really angry. Donna (3.47–50)

Before the surgery, none of the women recalled that they had had an opportunity to discuss how their lives may change subsequently, and there seemed to be a lack of anticipatory information about adapting to the consequences of their surgery,

No one talked to me about how my sex life might change after my operation. Eve (30.745)

The lack of specific information regarding the possibility of postoperative lymphedema was also apparent. For example, Kay was aware that she was at risk of lymphedema but did not realize the impact this would have on her subsequent life style,

I didn't know what it was, it was just said "lymphoedema" and I didn't know. It was like a vague explanation… But I wasn't really expecting it to be as fast, as speedy and as life-changing as it has. Kay (32.1054–58)

The lack of specific guidance for the women may be linked to the personality of the individual healthcare providers. For example, Sarah recalled her consultant gynecology oncologist saying,

He said, "I'll look after the physical side. I'm conscious that I have looked after the physical side" but he said, "I have never asked you anything, you know, anything about, you know, your relationship with (partner) or anything like that." He never has done. Sarah (66.1508–11)

It is known that people with an illness that is invisible to the wider public have more choice about disclosure than those whose illnesses is visible.[16] Here, the invisible nature of cancer of the vulva is related to its rarity as very little is known about the disease and it is rarely discussed in the media or in society in general. It also affects a private area of the body. The lack of communication between the women and their physicians, family, and friends is associated with the women's relationships and was evident before the diagnosis and continued throughout the disease trajectory over a period of lived time. As the women perceived that the physicians were too busy to talk to them, the consequence was that the women felt that their informational needs had not been met, and feelings of aloneness and isolation were compounded. The women also felt that there was a lack of openness as they themselves felt unable to talk about their condition and equally no one talked to them or their husbands/partners.

Impact of Invisibility

The impact of this can be seen as "invisibility of understanding" and "invisibility of support."

INVISIBILITY OF UNDERSTANDING The women expressed a lack of understanding about the aetiology of their disease, as their GPs were unfamiliar with the precancerous conditions and unaware of the significance of the preinvasive nature,

But nobody had ever told me that lichen sclerosis can be pre-cancerous. Josie (6.200–1)

An invisibility of understanding was also shown by the healthcare professionals. Stella and Donna expressed their feelings that the physicians showed a lack of understanding about her initial symptoms,

They kept telling me it was thrush and I kept telling them it wasn't, I said "I've had thrush before, it's not like this." Stella (27.903–6)

The invisibility of understanding by friends and colleagues was related to a lack of knowledge about the condition. In particular, Eve stated,

I think if you had breast cancer or something like that I think they (my friends) would be different because everybody knows about it but with this sort of thing nobody knows about it. Eve (39.968–972)

The invisibility of understanding is related to the rarity of the disease and the fact that there is little awareness or knowledge about the condition among some members of the medical and nursing profession and the general population. This was compounded as the health professionals were reluctant or unable to talk about the aetiology of the disease and the likely changes postoperatively once treatment had been planned. It is manifest within the 4 existentials of lived body, lived relationship with family and friends and healthcare professionals, lived space, and lived time. The perceived lack of understanding had both a positive and negative impact. Some women searched the Internet and contacted the UK Cancer Backup Web site (, as Anne had done,

It was just to look up information and research that had been done… because I knew it could lead to lymphoedema trying to find out more on what that was about. Anne (25.839–42)

For other women, it increased their sense of loneliness and the feeling that they did not know to whom to turn. This seems to have an ongoing impact for some of the women as the invisibility of understanding has also led to a lack of support.

Invisibility of Support

The consequence of the perception that no one can see cancer of the vulva, no one has heard of it, and no-one talked about it was seen as invisibility of support. Components of the invisibility of support are related to the following:

  • the lack of preparation before the women were told they had cancer,

  • the blunt way in which the physicians informed them of their diagnosis,

  • only 8 of 13 women had support from a clinical nurse specialist,

  • lack of peer support from others with the same diagnosis, and

  • the perceived lack of preoperative and postoperative information and counseling for themselves and their husband/partner.[10]

For example, Stella was warned that postoperatively, sexual intercourse may be different, but no further help was offered,

Nobody enlightened us to how; it's like anything like that, its just trial and error, and you're thinking that ain't (sic) quite right you know and sort of adjusting yourself to the situation. Stella (42.1414–7)

The women also perceived a lack of support regarding their lymphedema care. Anne felt that she was given inappropriate advice at her local hospital.

I got referred to Hospital C for the lymphoedema… and they didn't really know what they were dealing with. They gave me a compression stocking but when I saw the lymphoedema CNS she said "Stop using that straight away"… it was just pushing all the lymph fluid up to where I'd got the problem. Anne (53.1764–1770)

The invisibility of support was noted in relation to the women's changes in their lived body and their lived relationship with healthcare professionals. It is manifest throughout the women's journey from the onset of her symptoms before her diagnosis and into the rehabilitation phase. It is also associated with the lived space, for example, the local district hospital. It led to a loss of faith in some instances and a greater dependency on those individuals who were seen to provide the support that the women needed.[10]

Relevance for Practice

The insights offered by this study mean that the invisible nature of cancer of the vulva may now be challenged and efforts were made to make it more visible. A communication strategy designed to making this condition more visible to both professionals and the general public is seen as essential. This could be achieved quite simply with the provision of posters or leaflets, which could be displayed in GP's surgeries, Well Woman clinics, and GU clinics. The leaflet could draw attention to the presenting symptoms of cancer of the vulva, for example, persistent symptoms of thrush despite treatment or an ulcer or lesion that does not heal.

As cancer of the vulva is a rare condition, a "checklist" of the symptoms similar to a "risk of malignancy index" could be available to GPs and other clinical staff. This index has recently become available for women who may present to their GP with ovarian cancer, which is also rare, and is designed to prompt GPs to immediately refer women to a consultant gynecology oncologist.[17]

As women perceived that there was a lack of support in adapting to the postoperative impact of their diagnosis and surgery, preoperative counseling with the woman and her husband/partner may help address this. Postoperatively, a multidisciplinary clinic led by the gynecology oncologist, a clinical nurse specialist, and psychosexual counselor could explore any biopsychosexual consequences experienced after the surgery. This would allow individualized information to be given to each woman at every stage of the disease trajectory.

As several women expressed the feeling that they were the only one with this condition, a support group may address their feelings of aloneness and isolation. It is known that if women meet others with a similar diagnosis, they can enhance the quality of care and reduce a sense of loneliness and anxiety in some patients,[18] but this may not be achievable because of the rarity of the condition and the practical difficulties in arranging for the women to meet together. However, with the media available to all today, there may be other communication channels that could be used.