Gyne´cologie Obste´trique & Fertilite´ 42 (2014) 795–799
Available online at
Female sexual medicine
How women with gynaecological cancer deal with treatment: Issues of visibility and invisibility Appre´hension des traitements chez les femmes atteintes d’un cancer gyne´cologique pelvien : proble´matiques concernant la visibilite´ et l’invisibilite´ C. Giacomoni a,*,b, E. Venturini a,c, H. Hoarau a,b, F. Guyon d, V. Conri b a
ADESS-CNRS UMR 5185, Bordeaux 2, Maison-des-Suds, 12, Esplanade-des-Antilles, 33607 Pessac cedex, France Service de gyne´cologie chirurgicale-me´dicale et me´decine de la reproduction, Bureau O. Delorme, CHU Bordeaux, place Ame´lie-Raba-Le´on, 33076 Bordeaux cedex, France c Laboratoire de psychologie clinique et de psychopathologie, universite´ Paris Descartes, Paris, France d Institut Bergonie´, 229, cours-de-l’Argonne, 33000 Bordeaux, France b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 27 August 2013 Accepted 20 May 2014 Available online 19 October 2014
Through the psycho-anthropological approach study of the experiences of women affected by pelvic gynaecological cancer who undergo surgical treatment, this paper explores how these women perceive their bodily aesthetic and the impact this has on their sexuality and their relationship with their partner. Gynaecological cancers impact women in several ways, including having an effect on the way that they feel their femininity and appearance are perceived by others. Indeed, gynaecological cancer affects a part of the body intimately associated with representations of desirability that are linked to sexuality. Surgical procedures can cause scarring which can result in having a visible, physical impact on the patient, whilst also affecting their sense of body image and sexual identity. Healing treatments are too often associated with the visible, aesthetic appearance and the physicality of body, and neglect to treat questions of subjectivity. As such, women are compelled to feel like they have an integral body image, and that they are obliged to have a perfect body and need to be physically attractive to their partner. ß 2014 Elsevier Masson SAS. All rights reserved.
Keywords: Gynaecological cancer Treatments Relationship Sexuality
R E´ S U M E´
Mots cle´s : Cancer Gyne´cologique Traitements Relation de couple Sexualite´
A` travers une e´tude psycho-anthropologique sur l’expe´rience des femmes atteintes d’un cancer gyne´cologique pelvien induisant un traitement chirurgical, cet article explore la manie`re dont ces femmes perc¸oivent leur corps esthe´tique et l’impact que cela a sur leur sexualite´ et leur relation avec leur partenaire. Le cancer gyne´cologique pelvien impacte la pluralite´ de la femme, notamment sa fe´minite´ c’est-a`-dire l’exte´riorisation au monde de son fe´minin. En effet, le cancer gyne´cologique affecte une partie du corps intimement associe´e aux repre´sentations de de´sirabilite´ lie´es a` la sexualite´. Les gestes chirurgicaux peuvent provoquer des cicatrices qui s’inscrivent dans le visible du corps de la femme, affectant l’image corporelle et l’identite´ sexuelle. Les traitements sont trop souvent associe´s a` cette dimension externe et visible, engageant le corps esthe´tique de la femme au de´triment de la subjectivite´, souvent ne´glige´e. Au ﬁnal, tout cela contraint les femmes a` investir une image corporelle « entie`re », « normale », aﬁn de rester de´sirables pour leurs partenaires. ß 2014 Elsevier Masson SAS. Tous droits re´serve´s.
* Corresponding author. E-mail address: [email protected]
(C. Giacomoni). http://dx.doi.org/10.1016/j.gyobfe.2014.09.013 1297-9589/ß 2014 Elsevier Masson SAS. All rights reserved.
C. Giacomoni et al. / Gyne´cologie Obste´trique & Fertilite´ 42 (2014) 795–799
Through its psycho-anthropological approach, the FECAPSE1 study, which concerns female sexuality and intimate relationships, aims to evaluate the issues associated with the impact of gynaecological cancers on a woman’s body and her sexuality. Knowing that pelvic cancer, through its symptoms and its treatment, affects the body both internally and externally, we understand that there are speciﬁc issues concerning the visible and invisible, the aesthetic and mental. As much as the external effects can be observed, the internal can only be understood via subjective feelings and bodily manifestations of these effects. As such, we consider the ‘‘visible’’ to be what a woman sees as the result of the disease and its treatments on her body, externally and objectively. Conversely, the ‘‘invisible’’ can be deﬁned as what is felt internally as a result of the disease and its treatment, which may not necessarily be objectiﬁed, and which, therefore, can be said to belong to the realm of the subjective. In this context, the feminine aesthetic is what is shown and linked to the visible and to femininity, whereas the invisible concerns a woman’s femininity and subjective point of view. If the differentiation of these two concepts provides some clarity, we must keep in mind that both the mental and aesthetic perceptions of femininity develop in conjunction with each other throughout life. Thus, in the last section, we discuss this transferential link between the mental and the aesthetic that seems, faced with the disorganization induced by gynaecological cancer, to ﬁnd its expression through the body and the social. Also, we will see, through the experience of gynaecological pelvic disease and its treatments, the reasons why cancer can be both visible and invisible. Why does it cause aesthetic and mental consequences for women? And what are the responses and solutions of the women who are faced with these changes?
3.1. Surgery and other treatment: their repercussions on women
2. Method The FECAPSE study explores certain issues revealed in women’s discourses as a result of its speciﬁc methodology. Primary results were collected through the observation of medical gynaecological consultations at two clinics: a regional cancer treatment centre and a public hospital. Additionally, thirty patients who enrolled (with cervical, corpus uteri or ovarian cancers) were followed via interviews throughout the course of treatment, from diagnosis to the end of treatment. The interviews were held at three different intervals in order to follow longitudinally the therapeutic itinerary of women affected by cancer: ﬁrst interview: prior to treatment; second interview: three months after the ﬁrst treatment; third interview: three months after the end of all treatment.
These interviews were non-directive and conducted by anthropologists at each patient’s home, while those conducted by the psychologist took place at the hospital. The psychologist also proposed two psychological tests (Sexual Activity Questionnaire/SAQ and Thematic Apperception Test/TAT) in order to evaluate the patient’s sexuality and sexual relations. In parallel, some socio-demographical and medical data were collected by the epidemiological team. The methodology employed allowed us to collect numerous accounts, which will demonstrate our hypotheses. 1 FECAPSE 1: longitudinal study on intimate relations of women with pelvic cancer: impact on sexuality (exploratory study). March 2009–June 2011.
Through its often-intrusive treatment, gynaecological cancer, which is an internal disease, results in both visible (scars) and invisible (internal organs are affected by treatment) consequences. Sometimes diagnosis of gynaecological cancer requires removal of the affected organs through an opening in the abdomen. This medical procedure is common for a hysterectomy, and may sometimes be combined with a bilateral salpingo-oophorectomy (removal of fallopian tubes and ovaries). Celioscopy can cause small scars, while laparoscopy can cause scars along the entire length of the abdomen. Surgery is one of the most signiﬁcant causes of stigma for patients. However, pelvic cancer can also impact the patient aesthetically when it is treated with chemotherapy, one of the results of which is hair loss. Women’s discourses show that gynaecological cancer interacts with society’s view of what women should look like. Culturally, aesthetics are an important factor for these women who are subject to contemporary society’s vision of female aesthetic codes. For most women interviewed (in our study but also in other studies on breast cancer in particular ), one of the most signiﬁcant bodily impacts continues to be hair loss caused by chemotherapy. ‘‘These consequences are experienced as a regression, humiliation, loss not only of personal identity but also female sexual identity, of which one of the most important attributes is hair’’,  (which is more valued when long and voluminous). Thus, a woman deprived of her hair perceives her femininity to be threatened. Indeed alopecia may become ‘‘a disturbing sign of undesirability’’  . In this way, women feel deprived of their aesthetic values and show a desire to continue to show a perfect body and a need to be perceived as physically attractive by their partner. The visible stigma is particularly difﬁcult to accept in a contemporary society that imposes standards of youthfulness and seduction often associated with physical and sexual performance: imperfection is forbidden in society’s standardised vision of beauty. Indeed, women are subject to a social pressure to live up to contemporary society’s view of beauty. If the margin of freedom for women ‘‘within society has increased markedly, they do however suffer from a tyrannical concern regarding their ability to seduce, that is to say a recognition over which they have no power, as it comes from the gaze of men around them. A woman is always on stage in some way, exposed to male judgment’’ . Thus, visible anatomical and physiological changes may disrupt a female cancer patient’s body image, because these changes can lead her to question her femininity and physical appearance. This is especially the case when treatments such as radiotherapy, surgery and chemotherapy expose the body through an opening of the sexual organs, causing them to lose their mysterious, hidden, precious and intimate qualities. The disease is a fracture in feminine existence and can result in a woman’s sense of modesty being disturbed. Although modesty is usually associated with nudity, here it can be differentiated from basic modesty relating to the naked body due to it being a more general modesty relating to the effects, feelings and desires of the patient and also being a part of their relationships with other people. It is the other’s gaze that informs and validates the game of modesty. This is illustrated by a patient who says, ‘‘It’s really stressful. I don’t really like to show this part here [the genitals]. I don’t really like that’’. (patient no 14, T2). As such, modesty is linked to sexuality, or more speciﬁcally to the sexuality attributed to, or concealed within, each body part. The body, nudity and–unavoidably–modesty are all involved during medical interventions. However, this is a speciﬁc type of modesty, ‘‘medical modesty’’ , which calls upon both sides
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of the carer-patient relation. The emergence of modesty seems to be exacerbated by the unequal, inter-subjective statuses of the patient and carer during the consultation: active/passive, naked/ dressed. Patient no15 (T1), who describes herself as ‘‘shy’’, ‘‘modest’’ and ‘‘even more so with doctors’’, is very uncomfortable when imagining the operation: she ﬁnds the situation ‘‘unbearable’’ to the extent that she speaks of feeling physically faint. The comparison she makes between the feeling of modesty brought about in relationships with men throughout her life and that felt in medical situations shows an eroticisation of her relationship with doctors. Furthermore, she insists on being treated by male surgeons, exacerbating the way in which she defends her modesty in comparison to that which she felt at the birth of her children, which she was better able to deal with as the births were overseen by female midwives. However, our research shows that the feeling of modesty can also diminish over the course of treatment, allowing the patient to respond to corporeal break-in and to minimise its impact. If there is no dialogue around the medical investigation, particularly if it is invasive, the patient’s level of modesty can increase. Following on from Mietkiewicz’s article, ‘‘Modesty and immodesty in older people–how do we take care of the bodies of the old?’’ , we investigated the age of patients in relation to the modesty they felt in the presence of their carer. It was apparent that a difference in age results in different levels of modesty, notably due to female modesty being a result of education. Older women, who account for the majority of patients suffering from gynaecological cancer, have a different relationship with their body, in which modesty seemingly plays a more exaggerated and traditional role than in younger patients. Faced with this difﬁculty, in addition to the difﬁculty of talking about it, one patient compares herself with younger women, particularly in relation to her reserved attitude towards sexuality which contrasts with the ease with which younger women are able to ‘‘tell all’’ regarding intimate issues. She says that she has no desire to tell all and that she ‘‘keeps it all to herself’’ and further develops the reserved nature which places her ﬁrmly among the women of her generation (patient no 19, T1). If education plays a part in developing modesty–at least as far as its nature and intensity is concerned–social pressure is such that modesty always pertains to each woman as an individual who must arm herself with modesty according to each situation and the other person present. As such, modesty coexists with subjective and social norms of female decency. By delivering their body to their carers during treatment, the patient becomes disembodied, causing their modesty to be reduced. It appears, therefore, to be important to reduce the patient’s embarrassment as much as possible at the moment of medical intervention but also to allow the patient to reinstate their modesty upon completion of the intervention. Moreover, pelvic cancer seriously impacts the patient’s physical integrity, especially because the abdominal scarring marks a woman’s body forever and can be experienced as an unbearable sign of henceforth being an infertile woman. However, even though the external body–more readily associated with aesthetics–is under attack, as we have just seen, by the illness and by its treatment, the feminine psyche is also affected, showing that these two notions are strongly interlinked. 3.2. Internal changes Therefore, cancer and its treatment have an impact on a patient’s experience of their internal feelings and on representations of the internal and sexual identity. To understand the issue linked to invisibility, we must keep in mind that ‘‘cancer is a disease that can be characterized, among
other things, by a gap between the reality of the disease and the symptoms experienced by patients [. . .]’’ . Moreover, pelvic gynaecological cancer is a disease which ‘‘is not visible’’  and rarely felt physically, unlike the impact of treatment, as described above. As such, gynaecological cancer is perceived as an abstract disease, a perception that is reinforced by the description of cancer as a ‘‘silent disease’’ by some specialists. This remark allows us to differentiate between a woman’s objective symptoms and subjective feelings, which may both belong to the sphere of invisibility. However, new subjective feelings brought about by the appearance of the tumour and may lead women seek consultation. Moreover, the issue of the positioning of organs appears both before and after treatment with related pain and discomfort, particularly during sleep, when the tumour is felt as an annoying sensation or an oppressive weight, because of the place the tumour occupies, even if there is no pain associated with it. Some women fear that the tumour may have exploded following impact or excessive pressure on the pelvis before any treatment: ‘‘I tell him [her husband], ‘Don’t press too hard.’ I don’t dare press it because, as I said the other day, I’m afraid it might explode.’’ (patient no 6, T2). After ablative surgery to remove gynaecological organs, many women wonder about the position of their organs (e.g. their liver or stomach). They imagine their non-removed organs to be moving in an empty space. Often, organs are considered free, unrelated and prone to tangling and colliding with one another within the space of the pelvis. The ablation reinforces the representation of empty pelvic space already strongly present in most women’s discourses  prior to the operation. This image of a vacuum within the body becomes an additional anxiety during sexual relations. If women seem to question this lack of knowledge of their inner gynaecological workings, observations of medical consultations show that most patients do not request to see medical imaging snapshots (at the time of diagnosis) implying that they feel these have no representational or informational value and are not a way of objectifying the interior of their body. Indeed, these various effects come together to form a symbolic meaning surrounding ‘‘the unimaginable uterus’’ dependent on the subjective and cultural history of women. The uterus, often reduced to its simple function of an organ through a reductionist process pertaining to the realms of procreation and femininity, is the object of proliﬁc fantasies. From this point, the uterus does not represent in itself the sole difference in the sexes, as shown by the hysterectomy which, by depriving a woman of her internal sexual organs, does not lead to a total loss of her femininity. Furthermore, women who have undergone a hysterectomy experience internal upheavals that can disrupt their feminine and maternal perceptions but do not eradicate them. The internal body is also perceived differently when treatments induce pain or other feelings that have not previously been experienced. However, although this pain and these feelings embody the disease, and although technical treatments objectify the sick body, the post-treatment experience collated during the interviews shows us that the apprehension of sexuality and relationships is mainly subjective. These anatomical and physiological invisible changes can, therefore, undermine the social and cultural representations of a woman’s body, especially because the affected sexual organs are subject to the imagination, fantasies and myths, and are a contributing factor of the feminine and of femininity. The impact of treatment shows several features, including anxiety, uncertainty, fantasy, the visible and the invisible. Speaking of her hysterectomy, patient no 16 says, ‘‘I wonder just if you feel something after, if you feel you’re missing something or not.’’ (T2). Patients can invest their body socially and psychologically in different ways, particularly as a result of their experience of sexuality and intimate relationships.
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3.3. Investment and disinvestment of the body in response to changes As we have seen, changes of the body as a result of treatment conﬁrm the subjective image of the body but also women’s fears in relation to their body. Here, two fears expressed by women pervade. Firstly, the fear of no longer being attractive, because some women may be faced with the consequences of the disease and/or treatments such as weight loss, physical scars (resulting from surgery) and alopecia (resulting from chemotherapy). We know that ‘‘alopecia can be socially disadvantageous, especially in an intimate relationship with a partner who may be less attracted to his wife’’  and could be experienced as a loss of femininity. The other negative effect of treatment is the discontinuation of sexuality, either because abstention is prescribed medically or because intercourse is impossible due to the pain caused by treatment. This break in sexuality–reﬂected not only by a discontinuation of feminine sexuality but also by an alteration of sex life–is the expression of these women’s second deepest fear: the fear of penetration. One patient uses a physical metaphor to speak of the psychological difﬁculties restricting her sexuality: ‘‘an open wound heals’’ (patient no 25, T2). Effectively, it is a psychological restriction rather than a physical one, shown via conscious representations such as the ‘‘damaged vagina’’ or, conversely, by a lack of representation: ‘‘I’m afraid that it will hurt inside or that it will do something to me [. . .]. They connected the vagina to something [. . .] in my mind they’ve touched my vagina [. . .] it represents sex in itself so I’d rather not touch it for the moment [referring to her vagina]’’ (patient no 25, T2). In relation to anxiety, investment and disinvestment occur in several patient responses. For example, we see a return to the aesthetic body in order for the patient to reassert her damaged feminine identity. The woman who disinvests her ‘‘abused’’ interior, who can no longer trust her changed feelings and who can no longer access modesty as a defence mechanism, clings to her external body and thus overinvests in it. The visible envelope becomes a shell of femininity, a sexual signpost, invested in as a displayer of feminine values. So the feminine and femininity are in a pulsional balance, expressed, for example, through increased coquetterie. This is the case of several patients interviewed who, following chemotherapy and having experienced alopecia, wanted to introduce more feminine clothes to their wardrobes. Where some patients previously only wore trousers, they now wore skirts and dresses. A woman’s weight also often enters into identity issues and becomes symptomatic. Weight loss and gain are then unspoken means to reclaim a changing body. Women usually refer to weight loss associated with illness as an invested, positive result, as it allows the woman to approach current standards of beauty: ‘‘In the end, the silver lining was that the radiotherapy made me lose weight. So I already feel better. Even if, unfortunately, as I say, it wasn’t a good way to lose weight because it was down to not eating. But, at the end of the day, it meant that I feel better about myself having gone through this stage and having lost weight.’’ (patient no 16, T2). In this instance, a return to the aesthetic body is supported by weight loss even though weight loss is indicative of the terminal risk of the illness. Thus, the possible confusion between a health indicator and an aesthetic indicator allows the patient to attribute a narcissistic value to her weight loss and reap a morbid aesthetic beneﬁt. Research also shows a libidinal balance between sexuality and investment in social activities. Women who disinvest their internal femininity and overinvest in their outer appearance also seem to disinvest from sexuality or sexual activity (with penetration) and reinvest in a social exterior. Thus, rather than a narcissistic fallback, the libidinal balance may tend towards a social and object’s investment. As such, women, forced to turn away from their femininity and their internal sexuality, invest, with equal fervour,
in a social ‘‘exterior’’ composed of, for example, humanitarian projects, travelling, and so forth. The study reveals that some women, after having undergone a hysterectomy, particularly those in maternal roles (whose representations are strongly associated with symbolic values associated with the mother) refocus on children, and in parallel, abandon married life, to which they no longer want to make their ‘‘sexual contribution’’: ‘‘I’d rather be alone, me and my children; that’s what’s important’’ (patient no 7, 42 years old, 6 children). The image of motherhood is exacerbated as though the maternal female were easier to maintain than that of the erotic female. Some social codes are exacerbated too, often through a shift towards a new social representation. One of the women interviewed explains how, since the disease, her desire to have children has become central to her life, while her husband and her relationship have become secondary, with the maternal representation being exacerbated here. For postmenopausal women, the senses invoked promote another type of sexuality, and, notably, a return to the body as a whole rather than on the genital body whose eroticism is external rather than internal. During the natural feminine time following the onset of menopause, women can experience a revived love life and sexuality. When desire fails to return after a certain amount of time, women attempt to reconnect with normality via an idealized anterior image into which sexuality is integrated. Patients often plan to undertake ordinary life projects during the course of their illness. A desire to materialize the future emerges, as if to create distance from the disease, with, for example, the planning of a wedding, renovating or decorating the home, or travelling. This desire for normality also serves to perpetuate domestic roles by underlining status and normality in the home. Conversely, for other women, the disease and the status as patient serve to reduce social duties (for example by using home help) and to justify nonaction and/or non-support. For one of the patients, the illness allows her to no longer be able to take care of her elderly motherin-law who lives with her: ‘‘What’s changed is that I have more freedom. We can go out and come back home late–and this is a level of freedom we didn’t have before. We won’t have her back here [referring to her mother-in-law who is now in a retirement home] even if I feel better - I feel like I’ve done enough. I looked after my disabled fatherin-law for seven years before this. Before this, her brother didn’t want to help, my husband’s sister-in-law didn’t want to help, so we agreed to it. We looked after her [her mother-in-law], but now she’s there and she’ll stay there until her dying day.’’ (patient no 9, T2). Sometimes, a new found freedom in a relationship appears as secondary beneﬁt of the disease, particularly when it helps to alleviate family duties. As such, women demonstrate a range of responses and solutions when faced with the changes resulting from the disease. 4. Conclusion The way that women undergo treatment for gynaecological cancer reveals issues that are both physical and mental, visible and invisible, objective and subjective. It appears that the boundary between these contrary notions becomes more blurred and less obvious at the time of illness. The experience of gynaecological cancer reveals the complexity and subjectivity of representations of the illness and its treatment, as well as the body, femininity and modesty. The illness disturbs the relationship a woman has with the world, and exacerbates processes that contribute to ‘‘being feminine’’, such as modesty. The experience of these new feelings and perceptions linked to an internal intervention craves representations, especially the lack of representation of the external body and notably of the female reproductive organs by reviving archaic anxieties of internal
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destruction which is often expressed through changes in sexuality, particularly a fear of penetration. As such, sexuality becomes an interface between the self and the world, with a break in sexuality being the ultimate expression of the impact of the illness on a woman’s life and of the social and psychological changes she is subject to. Whilst the patient’s affected internal body results in anxieties coming to the fore, paradoxically, her femininity may be revived via external signs (e.g. jewellery, increased interest in appearance), supporting an identity that is suffering and used in an attempt to link the patient with her current experience. As such, the patient may invest energy into areas such as losing weight, work or travelling, which contrast to the lack of investment in the libido and the internal body damaged by the illness. Thus, in conclusion, surgical procedures can cause scarring which can impact the visible physicality of the patient, whilst also affecting their body image and sexual identity. Treatments are too often associated with aesthetic visible appearance and the physical body, and neglect questions of subjectivity. In this case, the duration of the disease is a time during which the patient appears to invest in their external body, while divesting from the internal. Through the study, we can understand why these issues arise and what the solutions are. This research is exploratory and is currently being further continued by the FECAPSE 22 study in order to reﬁne the concept of visibility of the affected pelvic organ (vulva-vaginauterus-ovaries) and conﬁrm certain results. Disclosure of interest The authors declare that they have no conﬂicts of interest concerning this article.
2 FECAPSE 2: longitudinal study of the experience of women with pelvic cancer: impact on sexuality and intimate relations. Comparative and exploratory study of female patients’ experience of gynaecological cancer (cancer of the cervix, corpus uteri, ovaries, the female pudendum and the vagina); with a view to creating a suitable information programme and recommending speciﬁc medical care. November 2011–December 2014.
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