Hilary Jefferies is Macmillan clinical nurse specialist, Birmingham Women?s Hospital NHS Trust; Sonja Hoy is lecturer practitioner women?s health, Royal Marsden NHS Foundation Trust, London; Rosie McCahill is gynaecology oncology clinical nurse specialist, Beatson Oncology Centre, Glasgow; Alison Crichton is Macmillan radiotherapy specialist, Arden Cancer Centre, University Hospital Coventry and Warwickshire NHS Trust.
VOL: 103, ISSUE: 30, PAGE NO: 28-29
Hilary Jefferies, BSc, RGN; Sonja Hoy, PGDip, BSc, RGN; Rosie McCahill; Alison Crichton, DCR(T), PGDip
This article describes the evolving work of the subgroup of the National Forum of Gynaecology Oncology Nurses (NFGON). This group was initially set up in 2003 to highlight the sexual needs of female oncology patients and has recently developed best practice guidelines on the use of vaginal dilators in women receiving radiotherapy to the pelvis. These guidelines were written on the basis of the available evidence in the literature and in response to reported inconsistencies within service provision in the UK. The guidelines aim to improve patient care, reduce disparity in patient services and highlight the healthcare needs of this group. A survey is taking place inthe summer of 2007to assess the impact of the guidelines in clinical practice.
Work in context
Each year approximately 16,000 women in the UK are diagnosed with a gynaecological malignancy and 40% will receive radiation as part of their treatment. Pelvic radiotherapy may be given as an adjuvant treatment in conjunction with chemotherapy, or following a surgical procedure. It may also be given pre-operatively to reduce volume disease and/or palliate symptoms as in the case of advanced vulval cancer. Radiotherapy is given at a maximum dose to be the most efficacious in terms of shrinking the cancer or minimising the chance of recurrence while causing the least damage to the surrounding healthy tissue.
With earlier diagnosis and advancing treatment women are surviving radical treatment. However, the impact of surgery, radiotherapy and chemotherapy for a gynaecological cancer can alter an individual’s physical, psychological and sexual functioning in many ways. These can affect each individual or couple differently (Stead et al, 2003; Andersen, 1994). Although there is now greater understanding of the risk factors of radical treatment, nurses should continually strive to provide better information, advice, guidance and support to improve the care and service provision for these women and their partners.
Background to guideline development
A subgroup of the National Forum of Gynaecology Oncology Nurses (NFGON) was set up in 2003 with the primary aim of developing evidence-based clinical guidelines on the use of vaginal dilators following pelvic radiotherapy. Guidelines may be defined as a ‘systematically defined statement to assist practitioner and patient decisions about appropriate healthcare for specific clinical circumstances’ (Field and Lohr, 1990) and their principal benefit is to improve the quality of care received by patients. The subgroup also aimed to:
- Standardise practice in using vaginal dilators across the UK, improving the consistency of care provision;
- Improve patients’ quality of life following radiotherapy treatment;
- Raise the profile of sexual health of oncology patients;
- Improve multidisciplinary education on the needs of women receiving radiotherapy to the pelvis and education on other non-gynaecological malignancies.
As women with identical clinical problems may receive different care depending on their clinician or geographical area the guidelines aimed to provide a standard of care whereby all women will be cared for in the same way regardless of where they are treated. They also aimed to provide authoritative recommendations that reassure practitioners of the appropriateness of treatment (Woolf et al, 1999).
The first task was to identify and assess the available evidence in the literature in relation to the use of vaginal dilators following pelvic radiotherapy. A systematic review of the literature using MEDLINE and CINAHL was undertaken using the terms ‘gynaecological cancer’, ‘pelvic radiotherapy’, ‘vaginal stenosis’ and ‘vaginal dilators’. References were also checked to show additional relevant articles. American colleagues caring for a similar group of patients were also contacted.
Pelvic radiotherapy treatment is known to cause early/acute side-effects (which occur within the first six months of completion of treatment) and late/chronic side-effects, which may develop up to five years after completion of treatment.
Early side-effects include:
- Tiredness - this is thought to be associated with the by-products of cellular destruction from the radiotherapy treatment;
- Cystitis - due to irritation of the lining of the bladder;
- Diarrhoea - the rapid reproduction of the cells in the villi lining the wall of the intestine causes them to be particularly sensitive to radiation. There may be a correlation between acute toxicity and diarrhoea and an increased risk of late rectal injury (Wang et al, 1998).
Late side-effects include:
- Direct physical effects on the vagina, bladder and bowel adjacent to the field of treatment. In particular, the lining of the vagina undergoes rapid cell renewal and is very sensitive to radiation damage;
- The radiation causes depletion in the cell supply and fibrosis of the blood vessels. The fibrosis limits the ability of oxygen and nutrients to reach the area being treated by radiotherapy and this can lead to the development of fibrosis in the mucosal tissues, causing a progressive narrowing of the vaginal canal;
- The potential to develop adhesions, increasing the risk of chronic radiotherapy necrosis in the tissues (Cartwright-Alcarese, 1995);
- Vaginal stenosis, which may develop in 1.6-80% of women (White and Faithfull, 2006; Lancaster, 2004);
- Shortening of the vagina (Brown et al, 2000);
- Decrease in elasticity of the vagina (Nori, 1994);
- Loss of oestrogen either from the effects of the radiotherapy on the ovaries or following surgical removal of the ovaries, which can also lead to loss of lubrication and vaginal dryness;
- Potential skin changes, such as erythema, dry and moist desquamation, and the permanent loss of pubic hair.
Any patient with a diagnosis of cancer may experience different emotions such as fright, frustration and helplessness, anger and denial (Woodruff, 1993). There can also be feelings of shame, guilt and punishment, and loss of self-esteem can cause severe psychological concerns(Rotman and Torpie, 1992). This is particularly relevant for women with cervical cancer due to society’s misconceptions that their illness is linked to promiscuity and is sometimes described as a sexually transmitted infection (Jefferies, 2002).
Treatment for cancer such as surgery, chemotherapy or radiotherapy may also cause changes in body image and when the body becomes permanently damaged, mutilated, incomplete or spoiled, it deeply affects one’s sense of self (Harcourt and Rumsey, 2001; Wintle, 1995). This may also occur even if it remains hidden from view.Since there has been an implicit tendency to equate body image with the patient’s perception of her or his appearance, it follows therefore that one’s body image may be affected more if an organ that inherently makes one feminine or masculine is affected by an illness.
In a prospective study of 673 patients newly diagnosed with cancer, 11% of whom were gynaecological patients, Parle et al (1996) concluded that the way that people cope with the distress of a cancer diagnosis is determined by the degree to which they feel different to others. This in turn can give rise to depression, problems with sexual adjustment and other psychological difficulties (Parle et al, 1996). It is clear therefore that the effect of surgery on patients with cancer is largely subjective and may affect different people to a greater or lesser extent. It may be, as Carver et al (1998) noted,that the term ‘body image’ is only partly to do with physical appearance. It is also about the perception of one’s body as whole, as an intact, properly functioning entity. This is also noted by Colyer (1996) who stated that women’saltered body image is intimately connected with female sexuality, the ability to fulfil a sexual role and the reproductive capability. An inability to perform such a role can subsequently lead to a sense of isolation and feelings that she is no longer a ‘woman’ (Webb, 1985).
Radiotherapy treatment may also have an effect on a woman’s body image. The marking of a woman’s skin with tattoos can cause distress and can be a permanent reminder of the nature and need for treatment. Some may have a fear of the treatment itself: they may think that they are going to be ‘burned’ or become radioactive. Feelings may be compounded by a diagnosis of an illness that is potentially life-threatening (Brown et al, 2000) and more prevalent in women requiring more than one modality of treatment, such as surgery and radiotherapy.
The literature review demonstrated that further research needs to be undertaken to correlate the change in body image in relation to patients with a gynaecological cancer rather than relying on anecdotal observations.
Sexual function and sexuality
Sexual function and sexuality are part of being human and can be an important part of quality of life for all people. Although the terms are often used in the same context, sexuality and sexual dysfunction are separate entities and both can be affected by a diagnosis of cancer and subsequent treatment.
Sexuality is a highly complex phenomenon that involves the biological basis for experiencing sexual pleasure and giving and receiving sensual pleasure. It also influences people’s relationships with others (Webb and O’Neill, 1988). Just as the term ‘sexuality’ can mean different things to different people, the extent to which people are affected and develop sexual dysfunction can vary markedly. However, it is known that there are negative effects on feelings of sexuality and sexual function following cancer treatment (Schover et al, 1989). In addition, the side-effect of dyspareunia (pain on intercourse) can cause up to 15-20% of women to never resume sexual intercourse (Noyes et al, 1995; Corney et al, 1993). In a Canadian study of 73 women, just over 50% had dyspareunia and loss of libido (Bourgeois-Law and Lotocki, 1999). Loss of libido in 52-57% of women after irradiation for cervical cancer has been reported by Lasnik and Tatra (1986).
Rationale for using vaginal dilators
Faithfull and Wells (2003), Rice (2000), Robinson et al (1999) and Lamb (1990) all reported that the use of vaginal dilators following radiotherapy has been an effective way of preventing vaginal stenosis, vaginal adhesions and dyspareunia. The use of dilators was considered a long-term intervention unless the woman was engaging in sexual intercourse (Cartwright-Alcarese, 1995) but more recentlyWhite and Faithfull (2006) reported that there is a great variation in clinical practice as well as limited information in the literature to support this gap in clinical knowledge. This was in a survey of current practice on information given to women about the rationale and techniques for using dilators associated with pelvic radiotherapy. These findings are comparable with a similar study conducted in Australia (Lancaster, 2004).
Developing the guidelines
The subgroup collated the guidelines based on the availableevidence in the literature, clinical experience and specific parts of the patient’s care pathway. These were:
- The introduction of dilators, giving background information about the radiotherapy, the side-effects and the risks of developing vaginal stenosis and why the guidelines were developed;
- The practicalities surrounding the use of dilators and frequency of use;Follow-up advice.
- The guidelines were launched at the NFGON conference in 2005 and subsequently distributed to all the radiotherapy centres throughout the UK, all members of NFGON via the RCN’s special interest forums and to the Society and College of Radiographers (see Appendix 1)
Implications for practice
The literature documents that vaginal stenosis may develop following radiotherapy treatment and that vaginal dilators should therefore be offered to patients undergoing radiotherapy to the pelvis, together with support and education. Before the commencement of treatment all patients should receive information about the effects of radiation on vaginal tissues and the information should be recorded as part of the informed consent process at the assessment and planning phase of the radiotherapy treatment.
The use and justification for vaginal dilators should be discussed with the patient and her partner by the team providing care.These are to:
- Ensure sexual relations can resume to the pre-treatment level of activity or at least recommence post-treatment;
- Reduce the incidence of discomfort or painful intercourse;
- Reduce potential difficulties with future partners if not in a sexually active relationship at the time of treatment;
- Allow the medical team to accurately examine and assess the vaginal vault or cervix as part of the ongoing medical follow-up, care and support;
- Offer an opportunity to discuss sexual fears or myths associated with pelvic radiotherapy.
- Any patient who needs further explanations, extra support or specialist information should be referred on to the appropriate healthcare professional on the gynaecology oncology team. These professionals should have:
- Experience, knowledge and understanding of the potential post-radiation treatment morbidity, particularly that affecting the vaginal tissues;
- Experience in strategies used in the management and treatment of vaginal stenosis;
- An awareness of psychosexual issues and alterations to sexual function related to women following both a pelvic cancer diagnosis and radical radiation therapy;
- Excellent communication skills to provide empathy, support and guidance for women;
- Knowledge of specialist services available for the sexual and relationship counselling for women and their partners.
The guidelines on the use of dilators were written primarily for gynaecology patients, but may subsequently have an impact on the care of other women receiving radiotherapy to the pelvis, where treatment fields include the vagina and vulva. They may also provide a foundation for clinical nurse specialists in colorectal, urology and haematology to enhance the services that they provide.
Specific needs of particular patient groups have not yet been addressed. These include those with:
- Visual impairment;
- Those with limited literacy or cognitive limitations;
- Physical limitations;
- Ethnic/cultural/religious backgrounds;
- Language other than English.
In addition, ongoing support for these women from nurses with experience, knowledge and understanding of the post-radiation treatment morbidity is needed as changes to the vagina may develop up to five years post-treatment (Corney et al, 1993).This is particularly pertinent as there may be increased concerns about sexual function once women have recovered from the acute side-effects (Faithfull and Wells, 2003).
It has now been two years since the guidelines were collated and distributed. Have they been used as a tool to promote discussions on sexual health? Were they shared with gynaecology oncology and clinical oncology consultants? Were they used as supportive evidence at cancer peer-review visits? Have they been used to develop services, for example, nurse-led clinics for this patient group? Is there any equity in service provision and what impact have the guidelines had within clinical practice? The answers to these and other questions will hopefully be realised shortly. A survey to assess the use and efficacy of the guidelines was sent to all members of the NFGON and to all the UK radiotherapy centres in May 2007, and the results will then be shared nationally.
The process of developing the guidelines has highlighted a need for further research to improve the care and outcomes of women having pelvic radiotherapy. It is hoped that healthcare professionals will continue to rise to this challenge.
Appendix 1: Guidelines on the use of vaginal dilators
- Minimum use is three times weekly, for an indefinite period. Dilators can be used in conjunction with sexual intercourse to achieve combined frequency of vaginal dilatation as above.
- Women should be advised to find a private and comfortable place where they can relax and use the dilators. Dilators can be used in the shower or bath if this provides privacy and may allow the woman to relax her pelvic floor muscles and therefore use the dilators more successfully. If applicable her partner may also be encouraged to be involved.
- A water soluble lubricant should be placed on the dilator and around the entrance to the vagina prior to insertion.
- There are various positions in which to use the dilator: the woman can be advised to either lie down on her back with knees slightly apart and bent, or stand with a leg raised on the side of the bed or bath to insert the dilator.
- Inserting the dilator into the vagina requires a firm, gentle pressure. Women should be advised to insert as deeply as is comfortable, without forcing the dilator.
- Once the dilator is inside the vagina it should be moved in a forward and backward motion. If possible, gently rotate the dilator using the handle.
- Women may be offered a range of sizes according to their needs. It is usual to start with the smallest size (size one)and progress to the largest (size four) in the days/weeks following treatment as the woman feels is comfortable.
- If the woman has manual dexterity problems or other physical restrictions, information should be tailored to individual needs as she may find it difficult to rotate the dilator.
- Each use should be for 5-10 minutes, encouraging pelvic floor exercises during insertion. It may be helpful to provide women with a written copy of pelvic floor exercises, together with a rationale for their use, to promote compliance and ensure they are taught correctly. The dilators should be removed slowly, rotating in clockwise/anticlockwise movements as the woman is able.
- Vibrators may also be used in conjunction with dilators.
- Slight vaginal loss and blood staining is not uncommon when using dilators. If a woman experiences heavy vaginal loss or pain then referral for advice should be sought from the appropriate professional providing care, ongoing follow-up and support.
- Douching is not usually recommended - consult a healthcare professional for further information if required.
Copies of the guidelines
Copies of the guidelines with background and references may be obtained from Hilary Jefferies, Macmillan clinical nurse specialist in gynaecological cancer, Birmingham Women’s Hospital, Edgbaston, Birmingham B15 2TG orRosie McCahill, clinical nurse specialist in gynaecological cancer, Beatson Oncology Centre, Glasgow G11 6NT. Alternatively they can be downloaded from the United Kingdom Oncology Nursing Society (UKONS) website at www.ukons.org.
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