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Research report

The lived experience of younger women with vulval cancer: the impact of delayed diagnosis

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More young women are being affected by vulval cancer but lack of knowledge about the symptoms of the condition can lead to significant delays in referral

 

Author

Hilary Jefferies, PhD, BSc, RGN, is freelance researcher and former Macmillan clinical nurse specialist.

 

Abstract

Jefferies H (2010) The lived experience of younger women with vulval cancer: the impact of delayed diagnosis. Nursing Times; 106: 6, early online publication.

Background Cancer of the vulva is a rare disease and little is known about its psychological, emotional and social impact.

Aim To explore the lived experiences of younger women with this condition.

Method A qualitative research study involving semi structured interviews with 13 women was undertaken using interpretative phenomenology.

Results and discussion This article examines one of the key findings, related to delays in referral for definitive treatment.

Conclusion Some changes to practice are recommended to increase awareness among nursing and medical staff and the general public.

Keywords Vulval cancer, Cancer care, Phenomenology, Patient experience

 

 

Practice points

This study revealed low awareness of vulval cancer among both healthcare professionals and the patients themselves. To raise awareness the following should be implemented:

  • Nurses should encourage women with chronic symptoms that indicate thrush to discuss referral to the local cancer centre with their GP;
  • A public information campaign should be used to raise awareness of vulval cancer among the general public;
  • As the condition is rare, a checklist of symptoms should be made available to GPs.

Background

Cancer of the vulva is a rare condition, accounting for 3-5% of gynaecological malignancies in the UK (Coleman and Santoso, 2000). It commonly affects women aged over 70, but in recent years more younger women have also been affected.

An increasing number of younger women are being diagnosed with multifocal pre-invasive disease, as higher numbers are becoming infected with the human papilloma virus (HPV). This virus can lead to a precancerous condition known as vulval intraepithelial neoplasia (VIN 3), which may develop into carcinoma in situ and invasive cancer over time. Joura et al (2000) noted that the incidence of VIN in women under 50 has soared by 392% in the last decade. A previous history of genital warts increases risk of VIN (Al-Ghamdi et al, 2002). Lichen sclerosis is another precancerous condition, characterised by a diffuse white change to the skin, which may lead to vulval cancer. Box 1 outlines risk factors.

The most common symptom associated with vulval cancer is pruritus, which occurs in 80% of patients. Less common symptoms are pain, burning, soreness, bleeding, an ulcer or lump. There may also be colour changes of the affected area. Ninety per cent of all vulval cancers have a visible lesion at the time of first presentation, which may look superficial, or deep and ulcerated, raised, warty, or appear as a firm lump. Metastatic disease presenting as a lump in the groin may also be seen at presentation. Most squamous cell malignancies arise as unilateral lesions on the labia majora, but other primary sites include the labia minora, clitoris or mons pubis. Multifocal lesions occur in 10-30% of cases (Modesitt et al, 1998). Fig 1 shows a malignant tumour on the labia minora.

Treatment for vulval cancer and related precancerous conditions is surgery to remove the affected area, together with a 1cm area of healthy tissue. The extent of surgery depends on the depth of the tumour’s invasion. The International Federation of Gynecology and Obstetrics (FIGO) uses surgical information to stage the tumour (Table 1). The stage indicates a prognosis and also helps in making decisions about adjuvant therapy post operatively.

Cancer care has been made a priority of care by the government.

Box 1. Risk factors for vulval cancer

  • Precancerous conditions such as vulval intraepithelial neoplasia (VIN) and lichen sclerosis;
  • Multiple sexual partners;
  • Human papilloma virus (HPV), immuno-suppression and herpes simplex virus;
  • Smoking;
  • Genital warts.
  • Lower socioeconomic status

Literature review

Since vulval cancer is rare, a literature review revealed a paucity of studies and produced limited insights into its wider impact. It found only 14 studies in total; the number of women in each was small and the total involved in all studies overall was under 300.

Three studies sought to gain an overall picture of the postoperative consequences of surgery (for example, Corney et al, 1992). Two sought to assess the effect on women’s quality of life postoperatively (for example, Janda et al, 2004).

The remaining nine focused specifically on sexual functioning, comparing the time pre-operatively with women’s postoperative functioning and the impact this had on them and their husband/partner (for example, Likes et al, 2007; Green et al, 2000). The earlier study also incorporated an assessment of change in body image. Five studies included an assessment of women’s partners’ experiences (such as Willibrord et al, 1990).  

Although there are weaknesses in the studies’ design and analytical methods, and a lack of clarity in the data analysis, the literature review helped to build up a picture of the challenges these women face postoperatively. The only British research on women with vulval cancer was a comparative study which incorporated women who had either a total pelvic exenteration or a Wertheim’s hysterectomy (Corney et al, 1992). As it was published several years ago, it does not reflect contemporary healthcare. A research study was therefore undertaken to address this gap in nursing knowledge.

Aim

As a clinical nurse specialist caring for women with gynaecological cancer, I noticed that increasing numbers of younger women are being diagnosed with vulval cancer and admitted to hospital for radical surgery. Although this can be a life changing event for women of any age, younger women have more time ahead of them to live with the consequences of diagnosis and treatment. While the physical effects of surgery can be readily described, little is known about the psychological, emotional and social impact of this condition.

High quality care should be based on an understanding of patients’ needs, wishes and expectations. We cannot understand women’s needs until we have more insight into what it is like to have this type of cancer and receive treatment.

I wanted to ask the women in this study to tell their stories, express their feelings and explain their understanding of events following diagnosis. I wanted to capture a sense of their lived experiences by asking: “What was it like for you?”

Method

Given the paucity of literature about women with vulval cancer in the UK, an interpretative phenomenological approach based on the work of Heidegger (2005) and van Manen (1990) was adopted. The local research ethics committee granted ethical approval.

Semi structured interviews using 33 questions were conducted with 13 women identified by purposive sampling, all of whom had positive diagnoses of vulval cancer. Participants were aged under 50, reflecting the increased incidence of vulval cancer in the younger age group and the initial concern that prompted the study. Four women had precancerous conditions, while the other nine had no prior vulval tissue abnormality. They were interviewed between six months and five years after surgery. The timeframe covered during the interview included the time that the women first became aware of presenting symptoms in order to incorporate their perceptions of life before diagnosis. The interviews lasted between one hour 20 minutes and three hours 15 minutes, were recorded, and then transcribed by a secretary. Participants were given other names to preserve confidentiality.

The data was analysed using framework analysis (Ritchie and Spencer, 1994), which involves a systematic process of sifting, charting and sorting data into key issues and themes. The themes identified shared van Manen’s (1990) four existential concepts of living in the everyday world: lived body; lived space; lived relationship; and lived time. By listening to the audiotapes repeatedly, reading the spoken words and thinking about the data, concepts were developed that offered insight into women’s experiences.

Results

One concept that emerged was “searching”, which referred to participants’ feelings of “looking for help”, “repeated visits to the doctor” and “seeking advice”. It also included the way in which they searched to control symptoms by their own efforts and by asking for help from their GPs on several occasions. The issue of searching is examined fully in Jefferies and Clifford (2009). Linked to this issue is participants’ perception that there was a delay in their care pathway, explored in this article. A delay in diagnosis has also been explored with other patients with cancer (Scott et al, 2006).

Delays in the referral process

The findings showed that nine out of 13 participants experienced a delay between the time they first noticed symptoms and the time they were referred to a cancer centre. Although the DH (2000) stipulated that all those with suspected cancer should be seen within two weeks of seeing their GP, women had experienced symptoms ranging from several months to many years before they were referred to a consultant gynaecologist:

“It was about nine months before I was eventually diagnosed” (Denise);

“It was four years from the time of my first symptoms [before I was diagnosed]” (Donna).

The reasons for delays in diagnosis may be due to women’s lack of awareness that their symptoms may indicate a malignancy.

Seven participants said they presumed their symptoms of vulval itching were caused by an infection and had visited their GP to ask for a prescription:

“I thought it was thrush all the time” (Eve).

Some tried to resolve their symptoms by searching for products in the local pharmacy. Leigh had bought medication:

“I’d been given Diflucan and um sort of things like that, I had tried the products on the market you can find to stop itching and things like that, so I had tried to apply various stuff to stop the itching, so, [sic] but nothing worked” (Leigh)

Josie had tried complementary therapies:

“I decided to try um homeopathy. So I went to see Dr A. and I mean she’s a proper doctor, but she specialised in homeopathy as well. So I went to see her privately and she was trying different things” (Josie).

Women with chronic vaginal symptoms are increasingly rejecting antibiotic treatment in favour of alternative remedies (Nyirjesy et al, 1997). This study reported that 42% of women used alternative medicines, such as yogurt and tea tree oil (melaleuca alternifolia).

Josie also sought advice from skin specialists and a doctor qualified in Chinese medicine:

“With visits in between to the skin [sic] specialists who um again just did the same thing: just gave me different steroid creams, a bit stronger and stronger creams, but nothing helped. Somebody gave me um a name of a doctor who worked at X University and also did clinics [in Chinese medication] on the side privately” (Josie).

Other women presented to their GP with a vulval swelling:

“It was just like a pea size lump on my vulva, on the right hand side. And I actually thought it was one of those pimple things, like a Bartholin’s cyst. I thought it was one of them…He [GP] said um ‘Your lymph glands swell up because of the infection’” (Kay).

The cause of the swelling was thought to be an infection of the Bartholin’s gland. These glands produce a small amount of fluid that lubricates the vaginal lips. Swelling and infection are caused if a flap of skin grows over the opening of one of the glands and the fluid remains inside it, causing pain.

Eleven women saw their GP several times:

“Because I was pregnant it was an automatic assumption I had thrush, so I had the Canesten. Went home, put that on religiously, no improvement so I went back and it was probably three or four months of just going back and forward to the doctor getting no response whatsoever” (Ria).

This may illustrate participants’ dependence on their doctor, as the majority appeared to return to the same doctor for further appointments.

However, because of the rarity of vulval cancer, GPs did not recognise it:

“I think some of the doctors haven’t seen it before as it is so rare” (Kay).

Some women’s GPs reassured them that their symptoms were probably due to a benign, non cancerous condition. Sarah and Kay remarked:

“He [the GP] said: ‘I don’t think it is anything, it might be a cyst or something.’ He said: ‘You’ve got nothing to worry about, it is just a wart or a cyst’” (Sarah);

“But my GP said it was a cyst, he give [sic] me some antibiotics and sent me away”(Kay).

This finding supports a study by Coleman and Santoso (2000), who noted that unfamiliarity with the disease and doctors’ reluctance to perform an examination can add to delays.

Four women were referred inappropriately to a genitourinary medicine (GUM) clinic as a sexually transmitted infection was suspected:

“Then I actually ended up at the clinic, they thought it was some sexually transmitted disease” (Julie).

Other women were referred to a consultant gynaecologist at their local district general hospital for further management but this did not always lead to a definitive diagnosis and appropriate management. Participants felt they were not being listened to:

“They [the doctors] kept saying: ‘We don’t know what it is.’ I was messed about for months. It was like banging my head against a wall” (Julie);

“It does make you feel like that, as if you’re going sort of a bit you know funny because people don’t believe you, it makes you feel as if you’re not being believed and I say you feel there’s something wrong and people keep saying there’s not” (Stella).

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

“I had a lump. And I had a lot of trouble, I was in and out of hospital for months up here in X, they didn’t know what was wrong, couldn’t find nothing [sic] wrong (Julie);

“So I went to see the GP and he sent me to Hospital A. And then to Hospital B. The GP sent me to an obstetrician at C. They said there was nothing wrong. I asked for a second opinion…” (Donna).

An interesting facet that Stella and Josie noted was in relation to the healthcare professional’s gender. This concerns the practitioner’s own experience of a similar condition or their personal knowledge. Stella excused the male doctor’s lack of empathy for her symptoms of itching by saying:

“And it’s very difficult to talk to a [male] doctor or whoever if they don’t understand what you’re saying…It’s hard to describe to a, to somebody who’s, especially a man who’s not got the bit anyway there to itch anyway [sic]” (Stella).

Josie commented:

“Like I said to the skin specialist, you know I’d say to anybody: ‘You see how long you can go without scratching. You know if you have something that’s really irritating you.’” (Josie).

These comments highlight a lack of understanding and empathy from healthcare professionals. Donna felt she was being laughed at:

“I said I felt something was wrong but he [consultant gynaecologist] said it was all in my mind, and there was nothing wrong with me. He just laughed at me”(Donna).

Subsequently, some participants felt ill prepared for their eventual diagnosis of cancer. Receiving a diagnosis of cancer can be shocking and overwhelming, but this may have been exacerbated because women had previously been told they had a benign condition:

“I was expecting something minor as the doctor at the other hospital said it was all in my mind. I felt angry, really angry” (Donna);

“Um he [consultant gynaecologist] did a biopsy and the next thing I knew I had a phone call from the secretary asking me to go there [to the cancer centre]. But nothing was said at the time that he [sic], it could have been what it was” (Denise).

The NHS cancer plan (DH, 2000) stipulated that people with cancer should be treated within 62 days of their first referral, or 31 days of being told their diagnosis. But two participants experienced a further delay between having a biopsy taken and being told they had a diagnosis of vulval cancer:

“I saw a doctor who said I needed a biopsy straight away so they admitted me in to X in the November and then it was the March when I went back and they said it was a cancerous lump” (Julie);

“I had the biopsy in August: my appointment was in the October” (Leigh).

Discussion

This study is based on interviews with 13 women, 11 of whom were treated in the NHS and two in the private sector in the same geographical area of the UK, giving a perspective on two healthcare systems.

The purposive sampling identified white women; while knowledge of spoken English was necessary for the study, other ethnic groups may have had other concerns which were not identified. The sample size was small and therefore these findings may not be applicable to all women diagnosed with vulval cancer. Neither is it known if the delay in diagnosis had an impact on participants’ prognosis. It has led, in some cases, to the women developing a lack of faith in the clinicians involved in their care.

However, despite the study’s limitations, patterns have emerged which may contribute to the provision and delivery of care in the future.

Recommendations

Participants highlighted a lack of awareness of vulval cancer among healthcare professionals and in society in general. Nurses should encourage women with chronic symptoms that indicate thrush to discuss referral to the local cancer centre with their GP.

A biopsy of the relevant area can then be taken and, if diagnosed as malignant, treatment started as soon as possible.

A public information campaign should be developed to raise awareness of the condition among the general public, for example, by displaying posters or leaflets in GP surgeries, well woman and GUM clinics. It could draw attention to presenting symptoms of vulval cancer, for example, persistent symptoms of thrush like illness despite treatment, or an ulcer or lesion which does not heal. The campaign could also mention that 40% of cases of vulval cancer may be related to HPV (Munoz et al, 2006). Since the virus is also linked to the development of cervical cancer, this knowledge may prompt women to address any concerns about vulval symptoms with their GP or practice nurse.

As the condition is rare, a list of symptoms should be made available to GPs, which could be similar to a “risk of malignancy index” (Royal College of Obstetricians and Gynaecologists, 2003).

This index is designed to prompt GPs to refer women who present with symptoms of ovarian cancer, which is also rare, to a consultant gynaecologist immediately.

Some participants who attended cancer centres were unaware of their diagnosis (even after being diagnosed in hospital and referred for treatment) or potential diagnosis, and felt they had been given insufficient information. Although healthcare professionals making referrals may not know the treatment involved, patients could be given a leaflet detailing the name of the consultant to whom they are referred, the clinical nurse specialist’s name, a contact telephone number, and the likely radiological investigations. It would also be helpful to give patients the date and time of their appointment at the cancer centre before leaving the referring hospital.

Conclusion

This article has discussed the delay in diagnosis of vulval cancer for nine out of 13 study participants. The delay may be attributed to lack of awareness of symptoms of this condition among women and healthcare professionals. As a result of the delay, women tried to “search” for remedies to alleviate symptoms. While it is not known whether the delay had an impact on their prognosis, participants said they felt unprepared for their cancer diagnosis. Some changes to practice are recommended to increase awareness among nursing and medical staff and the general public.

  • The thesis on which this article is based is shortlisted for the Akinsanya Award 2010 for Innovation in Doctoral Studies in Nursing, run by the Royal College of Nursing

 

 

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Readers' comments (2)

  • This sounds so familiar. My mother went through a similar thing. Her GP fobbed her off for over a year, treating her for recurrent candida. I intervened and found an alternative source of medical help (I was working at GUM clinic at the time and made her an appointment). She was diagnosed with lichin sclerosis. I dread to think what would have happened if I had not intervened. She now receives regular check ups and treatment with a gynecologist. Lack of knowledge with GP's most definitely needs to be addressed.

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  • I AM SO RELIEVED TO FINALLY SEE INFO ON THIS.I HAVE BEEN SEARCHING FOR 1 WEEK AND IT FEELS LIKE A YEAR OF RESEARCH. I'M 35 AND HAV HAD THE SYMPTOMS OF THIS ONGOING FOR SEVERAL MONTHS-UNAWARE THEY WERE ACTUALLY SYMPTOMS RATHER THAN INDEPENDANT OCCURENCES OF UNRELATED PROBLEMS.I HAV A LESION/ULCER ON MY LABIA MINORA WHICH HAS BEEN THERE FOR AT LEAST 3 MONTHS AND IS NOW 35MM LONG.I HAV HAD TO FIGHT TO GET AN APPOINTMENT AT GP'S,I HAD TO RING THE PRACTICE MANAGER TO GET ONE AND EXPLAIN WHY.EVEN THEN HAD TO SEE A MALE GP WHO HAS GIVEN ME 5 DAY SUPPLY OF GENITAL HERPES ANTIBIOTIC AND TOOK A SWAB. I GAVE MY CONCERNS OF IT BEING CANCER AND HE LOOKED AT ME IN A PUZZLED WAY.TOLD ME TO MAKE APPT FOR A WEEKS TIME-STILL NOT REFERRED OR ADVISEDIN ANY WAY AND GUESS WHAT...CANT GET AN APPOINTMENT AGAIN!! I ALSO WASNT AWARE THAT NOT HAVING CHILDREN WAS A RISK FACTOR BUT RESEARCH TELLS ME IT IS

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