**4. Conclusion**

This study examined changes to sexuality following the diagnosis and treatment of cancer, as well as the impact of such changes on psychological well-being, for informal carers who were the partner of a person with cancer. The mixed method design allowed for the extent and impact of changes to sexuality post-cancer to be measured using quantitative measures, and subjective experience of changes to sexuality to be evaluated using open-ended questionnaire items and interviews. Within a Critical Realist epistemological standpoint, each methodology is treated as equally valid in providing insight into the phenomenon under investigation.

 The majority of participants reported that the cancer experience had impacted on their sexual relationship, resulting in a cessation or reduction of sexual activity, with only a minority renegotiating sexual intimacy post-cancer. This supports previous research which demonstrated that the impact of cancer and cancer treatment extends beyond the person with cancer (Baider et al., 2000, Gurevich et al., 2004, Juraskova et al., 2003, Maughan et al., 2002, Rolland, 1994, Walsh et al., 2005), reinforcing the need for acknowledgement of the sexual and intimate needs of partners, as well as of people with cancer. Rather than restricting our sample to partners caring for person with cancer affecting the reproductive areas of the body, we examined changes to sexuality post-cancer across a range of cancer types. The majority of participants who were providing support to a person with prostate, breast or gynaecological cancer cited an impact, confirming previous research (Maughan et al., 2002, Harden et al., 2002, Sanders et al., 2006). However the finding that a high proportion of partners of a person with 'non-sexual' cancer also reported changes highlights the pressing need to attend to and further investigate the sexual concerns and needs of all partners who care for a person with cancer.

The finding that partners who reported changes in sexuality post-cancer reported significantly higher levels of depression and anxiety than those who reported no sexual changes, adds support to the notion that sexuality is associated with cancer carers' quality of life and psychological well-being (Foy et al., 2001). Depression and anxiety may be a cause, or a consequence, of changes in sexuality post-cancer; further research is needed to examine this issue in more depth, looking at the factors which may moderate and mediate changes to the sexual relationship in cancer carers and their partners, as well as the consequences of such changes for the couple. Future research would also benefit from examining changes in sexuality and their impact across cancer stage, which was not possible in the present study due to the low numbers participants caring for someone with early stage cancer.

Whilst gender was not a significant moderator of impact of changes to sexuality on psychological well-being, there were some gender differences in the accounts of the nature of changes to the sexual relationship post-cancer. Reports of complete cessation of sex were more common for women than men, and very few women gave accounts of developing

just sitting there (…) That was the end of the discussion.

*bereaved.* 

**4. Conclusion** 

under investigation.

partners who care for a person with cancer.

it's not properly addressed by the medical profession, it is just completely glossed over. And I can remember, you know, we were sitting when the diagnosis came through and the guy said well, you know, you'll get these hormone pills and we'll give you an injection into your stomach and of course that will be the end of your sex life; and we're

*67 year old woman who cared for 85 year old husband with prostate, bowel, and lung cancer,* 

This study examined changes to sexuality following the diagnosis and treatment of cancer, as well as the impact of such changes on psychological well-being, for informal carers who were the partner of a person with cancer. The mixed method design allowed for the extent and impact of changes to sexuality post-cancer to be measured using quantitative measures, and subjective experience of changes to sexuality to be evaluated using open-ended questionnaire items and interviews. Within a Critical Realist epistemological standpoint, each methodology is treated as equally valid in providing insight into the phenomenon

 The majority of participants reported that the cancer experience had impacted on their sexual relationship, resulting in a cessation or reduction of sexual activity, with only a minority renegotiating sexual intimacy post-cancer. This supports previous research which demonstrated that the impact of cancer and cancer treatment extends beyond the person with cancer (Baider et al., 2000, Gurevich et al., 2004, Juraskova et al., 2003, Maughan et al., 2002, Rolland, 1994, Walsh et al., 2005), reinforcing the need for acknowledgement of the sexual and intimate needs of partners, as well as of people with cancer. Rather than restricting our sample to partners caring for person with cancer affecting the reproductive areas of the body, we examined changes to sexuality post-cancer across a range of cancer types. The majority of participants who were providing support to a person with prostate, breast or gynaecological cancer cited an impact, confirming previous research (Maughan et al., 2002, Harden et al., 2002, Sanders et al., 2006). However the finding that a high proportion of partners of a person with 'non-sexual' cancer also reported changes highlights the pressing need to attend to and further investigate the sexual concerns and needs of all

The finding that partners who reported changes in sexuality post-cancer reported significantly higher levels of depression and anxiety than those who reported no sexual changes, adds support to the notion that sexuality is associated with cancer carers' quality of life and psychological well-being (Foy et al., 2001). Depression and anxiety may be a cause, or a consequence, of changes in sexuality post-cancer; further research is needed to examine this issue in more depth, looking at the factors which may moderate and mediate changes to the sexual relationship in cancer carers and their partners, as well as the consequences of such changes for the couple. Future research would also benefit from examining changes in sexuality and their impact across cancer stage, which was not possible in the present study

Whilst gender was not a significant moderator of impact of changes to sexuality on psychological well-being, there were some gender differences in the accounts of the nature of changes to the sexual relationship post-cancer. Reports of complete cessation of sex were more common for women than men, and very few women gave accounts of developing

due to the low numbers participants caring for someone with early stage cancer.

alternative sexual practices if intercourse was no longer possible. This could be attributed to women being more likely to assume that they should subordinate their own needs to the needs of their partner (O'Grady, 2005), and to cultural constructions of normative heterosexuality which expect men to initiate sex (Ussher, 1997b). Previous research has found that partners are reluctant to initiate sexual intimacy if the person with cancer does not initiate (Maughan et al., 2002), and that heterosexual women partners do not wish to initiate sex, or discuss alternatives to coital sex, for fear of emasculating their partner if he can not 'perform' through sexual intercourse (Boehmer et al., 2001). This is consistent with research that has demonstrated that sexual performance is positioned as central to heterosexual constructions of 'manhood', with failure having negative consequences in terms of a man's sense of self (Tiefer, 1994).

Equally, the 'male sex drive discourse' which positions men as 'needing' sex (Hollway, 1989, Potts, 2002), may result in the sexual needs of male partners being classified by either or both members of the couple as being 'important enough' for sex to continue post-cancer, or for alternative sexual practices to be developed, in contrast to women partners who were more likely to report that re-negotiated intimacy was non-sexual. The phallocentric bias evident in the research and clinical literature on cancer and sexuality (Hyde, 2006), which serves to reinforce the notion that 'normal' sex = coitus, and emphasises sexual 'functioning' with little attention to alternative practices, needs to be challenged, as this potentially plays a significant role in the construction of truths about sexuality which people with cancer and their partners take up, limiting their exploration of alternatives to coitus post-cancer. However, in the present study, four of the six lesbian partners all reported complete cessation of sex, suggesting that even couples positioned outside of a heterosexual matrix (Butler, 1990) can experience changes to sexuality post-cancer.

Whilst previous research has attributed changes in sexuality and intimacy post-cancer to the physiological effects of cancer or cancer treatment, a finding confirmed by many of the accounts in the present study, our findings also showed that the caring role also had an impact on the sexual relationship (Hawkins et al., 2009). Participants who reported changes in sexuality post-cancer reported significantly higher scores on the disrupted schedule sub-scale of the Caregiver Reaction Assessment Scale, suggesting aspects of burden of care were associated with such changes. In the interviews and open ended questions, these participants also associated sexual changes with stress, fatigue and exhaustion, revised prioritisation centred on coping and survival, and a redefined status as carer rather than lover. Past research that has explored carers' experiences of stress and exhaustion primarily focuses on the impact upon carers' general health and well-being. For example, Brown and Stetz (1999, p. 186) found that the initial period of 'becoming a caregiver' is particularly stressful, as carers are focused not only on their new role, but also have to 'face the present', negotiate their choice/or lack thereof to care, develop competency around their caring tasks, and evaluate their future. It is important to further investigate how the stresses involved in being a caregiver impact upon a carer's sexuality, and how this may in turn impact on quality of life (Foy et al., 2001). The finding in the present study that women were more likely to report that exhaustion had an impact on sexuality is in line with previous research which found that women cancer carers experience greater personal costs from caring (Lutsky et al., 1994, Ussher et al., 2008). As these personal costs have been found to be associated with higher rates of depression and anxiety, as well as lower life satisfaction and quality of life ratings, (Hagedoorn et al., 2000, Bookwala et al., 2000), it is a serious health issue.

Sexuality and Intimacy in the Context of Cancer 89

result, may experience sadness, anger, and isolation (Gilbert et al., 2008), as was reported by

A number of methodological issues need to be considered when evaluating the findings of this research. Firstly, the issue of selection bias needs to be examined. The present study used self-selection in response to advertisement or information sheets distributed by cancer organisations or clinics, and thus may not have tapped a representative sample of informal cancer carers. Indeed, as noted above, future research in this field needs to systematically examine sexuality post-cancer across cancer stage. However, there was a good distribution across cancer type, gender and age-group, in contrast to many previous studies of cancer and sexuality which focussed solely on cancers affecting the sexual organs. Equally, as the participants were recruited for a general study on cancer caring, answering questions on sexuality as part of a broader questionnaire or interview, it could be argued that we have recruited individuals who would not usually respond to requests to take part in a research study on sexuality, and thus have obtained a broader sample for our research. Secondly, this study did not use standardised measures of sexual functioning, sexual or relationship satisfaction, but rather focussed on subjective reports through open ended questionnaire items or interview. Future research in this field could usefully adopt these standardised measures along side qualitative measures, to allow for greater triangulation of data, in evaluating of the extent and impact of changes to sexuality post-cancer. Thirdly, the cross sectional design meant that all assessment of change were retrospective. A longitudinal design would more effectively allow for the evaluation of changes to sexuality across cancer

stage, and allow pre-post cancer treatment changes to be evaluated more thoroughly.

In conclusion, sexuality and intimacy are central aspects of quality of life that have often been neglected in examinations of the well-being of partners of a person with cancer. The findings of the present study add further support to the suggestion that sex should not be positioned as 'inappropriate' or 'trivial' in the context of cancer care, but rather be recognised as an aspect of couple relationships which is associated with well-being (Cort et al., 2004). Having health care professionals legitimate sexuality by 'giving permission' for couples to be sexually active or physically intimate when undergoing and recovering from treatment for cancer is one of the key strategies that could assist in this repositioning (Schwartz et al., 2002). The positive consequences of this may include increased feelings of well-being on the part of the partner carer, and closeness between the couple, which will have positive consequences for the physical and psychological well-being of the person with cancer (Hodges et al., 2005), the central aim of professional cancer care. There is thus no justification for sexuality and intimacy being ignored or dismissed: partner cancer carers are telling us that it is important, it is time for health professionals to recognise this need and to

The larger cross sectional project evaluating the needs and experiences of informal cancer carers, from which this study was drawn, was funded by an Australian Research Council Linkage Grant, LP0560448, in conjunction with the Cancer Council New South Wales, Westmead Hospital, and Carers New South Wales. The chief investigators on the project were Jane Ussher and Phyllis Butow, the partner investigators were Gerard Wain, Gill Batt and Kendra Sundquist, Janette Perz and Emilee Gilbert were associate

many of the participants in the present study.

act accordingly.

**5. Acknowledgements** 

The impact of the re-positioning of the person with cancer as 'patient' or 'child', rather than as 'lover', is an important issue which requires further investigation. The finding that the physical symptoms of cancer, or the physical tasks associated with cancer caring, makes it difficult for many carers to continue to see their partner as a sexual person, confirms patterns found in other spheres of health care (Parker, 1990, Pope, 1999). This assignment of individuals with cancer with a 'sick' or 'childlike' identity, which is antithetical to an identity as a person with sexual desires and needs, can significantly impact on the sexual and intimate relationship of a couple facing cancer (Kelly et al., 1996). Sex can be positioned as 'inappropriate', or as a 'frivolous activity' (Holmberg et al., 2001), resulting in carers experiencing guilt in the face of their own sexual needs or desires, and the avoidance of any discussion or re-negotiation of sexual practices, as was reported in the present study. This could be seen as one aspect of a broader practice of self-silencing in cancer carers, where the needs of the carer are repressed, because the person with cancer has to be put first (Ussher et al., 2010). However, it is also associated with cultural discourses which position people with cancer as having limited sexual needs, or as asexual (D'Ardenne, 2004, Schildrick, 2005), resulting in a different set of norms being applied to what is acceptable behaviour (Wellard, 1998). The finding that male partners were more likely to report an impact of re-positioning the person with cancer as a patient may result from the role of carer being a more unfamiliar position for men to take up, given the congruence between femininity and the caring role (O'Grady, 2005). It may thus be more difficult for men to eroticize a partner with cancer who is in need of care. This matter is worthy of further investigation in future research.

As the majority of partners positioned these changes to their sexual relationship as problematic, confirming previous research (Kuyper et al., 1998, Perez et al., 2002, Reichers, 2004, Soothill et al., 2003, Thomas et al., 2002), this suggests that education and information about sexuality post-cancer which challenges myths and provides a framework for renegotiation of sexual relationships, needs to be included in supportive interventions for partner carers. At present, there is a dearth of research in this area, with no published research examining cancer carer interventions with a sexual component (see Harding et al., 2003). The finding in the present study that some partners reported increased closeness and intimacy emphasises the importance of helping couples to re-negotiate intimacy and sexuality post-cancer, as well as the importance of recognising, and reinforcing, the rewards of cancer caring (Hudson et al., 2005, Sinding, 2003).

Whilst it has been recognised that health professionals need to discuss issues of sexuality and intimacy with patients in cancer and palliative care (Initiative, 2003), the findings of the present study confirm previous research which found that these discussions are not taking place for the majority of people with cancer or their partners (Stead et al., 2002), particularly for those outside the sphere of prostate cancer. Even when sexuality was discussed, this was not at a level which was satisfactory to the majority of participants in the present study. This confirms recent Australian research which reported mis-matched expectations and unmet needs in relation to communication about sexuality between health professionals and individuals with cancer (Hordern et al., 2007a, Hordern et al., 2007b), suggesting that further education and training of health professionals is required, in order that they will be able to advise couples affected by cancer on issues of sexuality and intimacy, and address their unmet needs in this arena (Rees et al., 1998). Without the legitimacy of being able to discuss potential or actual disruptions to the sexual relationship with a health care professional, partners may feel that they cannot discuss such issues with the person with cancer, and as a

The impact of the re-positioning of the person with cancer as 'patient' or 'child', rather than as 'lover', is an important issue which requires further investigation. The finding that the physical symptoms of cancer, or the physical tasks associated with cancer caring, makes it difficult for many carers to continue to see their partner as a sexual person, confirms patterns found in other spheres of health care (Parker, 1990, Pope, 1999). This assignment of individuals with cancer with a 'sick' or 'childlike' identity, which is antithetical to an identity as a person with sexual desires and needs, can significantly impact on the sexual and intimate relationship of a couple facing cancer (Kelly et al., 1996). Sex can be positioned as 'inappropriate', or as a 'frivolous activity' (Holmberg et al., 2001), resulting in carers experiencing guilt in the face of their own sexual needs or desires, and the avoidance of any discussion or re-negotiation of sexual practices, as was reported in the present study. This could be seen as one aspect of a broader practice of self-silencing in cancer carers, where the needs of the carer are repressed, because the person with cancer has to be put first (Ussher et al., 2010). However, it is also associated with cultural discourses which position people with cancer as having limited sexual needs, or as asexual (D'Ardenne, 2004, Schildrick, 2005), resulting in a different set of norms being applied to what is acceptable behaviour (Wellard, 1998). The finding that male partners were more likely to report an impact of re-positioning the person with cancer as a patient may result from the role of carer being a more unfamiliar position for men to take up, given the congruence between femininity and the caring role (O'Grady, 2005). It may thus be more difficult for men to eroticize a partner with cancer who

is in need of care. This matter is worthy of further investigation in future research.

of cancer caring (Hudson et al., 2005, Sinding, 2003).

As the majority of partners positioned these changes to their sexual relationship as problematic, confirming previous research (Kuyper et al., 1998, Perez et al., 2002, Reichers, 2004, Soothill et al., 2003, Thomas et al., 2002), this suggests that education and information about sexuality post-cancer which challenges myths and provides a framework for renegotiation of sexual relationships, needs to be included in supportive interventions for partner carers. At present, there is a dearth of research in this area, with no published research examining cancer carer interventions with a sexual component (see Harding et al., 2003). The finding in the present study that some partners reported increased closeness and intimacy emphasises the importance of helping couples to re-negotiate intimacy and sexuality post-cancer, as well as the importance of recognising, and reinforcing, the rewards

Whilst it has been recognised that health professionals need to discuss issues of sexuality and intimacy with patients in cancer and palliative care (Initiative, 2003), the findings of the present study confirm previous research which found that these discussions are not taking place for the majority of people with cancer or their partners (Stead et al., 2002), particularly for those outside the sphere of prostate cancer. Even when sexuality was discussed, this was not at a level which was satisfactory to the majority of participants in the present study. This confirms recent Australian research which reported mis-matched expectations and unmet needs in relation to communication about sexuality between health professionals and individuals with cancer (Hordern et al., 2007a, Hordern et al., 2007b), suggesting that further education and training of health professionals is required, in order that they will be able to advise couples affected by cancer on issues of sexuality and intimacy, and address their unmet needs in this arena (Rees et al., 1998). Without the legitimacy of being able to discuss potential or actual disruptions to the sexual relationship with a health care professional, partners may feel that they cannot discuss such issues with the person with cancer, and as a result, may experience sadness, anger, and isolation (Gilbert et al., 2008), as was reported by many of the participants in the present study.

A number of methodological issues need to be considered when evaluating the findings of this research. Firstly, the issue of selection bias needs to be examined. The present study used self-selection in response to advertisement or information sheets distributed by cancer organisations or clinics, and thus may not have tapped a representative sample of informal cancer carers. Indeed, as noted above, future research in this field needs to systematically examine sexuality post-cancer across cancer stage. However, there was a good distribution across cancer type, gender and age-group, in contrast to many previous studies of cancer and sexuality which focussed solely on cancers affecting the sexual organs. Equally, as the participants were recruited for a general study on cancer caring, answering questions on sexuality as part of a broader questionnaire or interview, it could be argued that we have recruited individuals who would not usually respond to requests to take part in a research study on sexuality, and thus have obtained a broader sample for our research. Secondly, this study did not use standardised measures of sexual functioning, sexual or relationship satisfaction, but rather focussed on subjective reports through open ended questionnaire items or interview. Future research in this field could usefully adopt these standardised measures along side qualitative measures, to allow for greater triangulation of data, in evaluating of the extent and impact of changes to sexuality post-cancer. Thirdly, the cross sectional design meant that all assessment of change were retrospective. A longitudinal design would more effectively allow for the evaluation of changes to sexuality across cancer stage, and allow pre-post cancer treatment changes to be evaluated more thoroughly.

In conclusion, sexuality and intimacy are central aspects of quality of life that have often been neglected in examinations of the well-being of partners of a person with cancer. The findings of the present study add further support to the suggestion that sex should not be positioned as 'inappropriate' or 'trivial' in the context of cancer care, but rather be recognised as an aspect of couple relationships which is associated with well-being (Cort et al., 2004). Having health care professionals legitimate sexuality by 'giving permission' for couples to be sexually active or physically intimate when undergoing and recovering from treatment for cancer is one of the key strategies that could assist in this repositioning (Schwartz et al., 2002). The positive consequences of this may include increased feelings of well-being on the part of the partner carer, and closeness between the couple, which will have positive consequences for the physical and psychological well-being of the person with cancer (Hodges et al., 2005), the central aim of professional cancer care. There is thus no justification for sexuality and intimacy being ignored or dismissed: partner cancer carers are telling us that it is important, it is time for health professionals to recognise this need and to act accordingly.

#### **5. Acknowledgements**

The larger cross sectional project evaluating the needs and experiences of informal cancer carers, from which this study was drawn, was funded by an Australian Research Council Linkage Grant, LP0560448, in conjunction with the Cancer Council New South Wales, Westmead Hospital, and Carers New South Wales. The chief investigators on the project were Jane Ussher and Phyllis Butow, the partner investigators were Gerard Wain, Gill Batt and Kendra Sundquist, Janette Perz and Emilee Gilbert were associate

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**7** 

*Taiwan* 

**Cancer-Associated Immune Deficiency:** 

Chia-Ming Chang1, Chien-Liang Wu2 and Yen-Ta Lu1,2 *1Department of Medical Research, Mackay Memorial Hospital, 2Chest Division, Medical Department, Mackay Memorial Hospital,* 

**A Form of Accelerated Immunosenescence?** 

Cancer (medical term: malignant tumor) is a major global health problem and a lifethreatening disease that accounts for ~13% of all deaths annually. The number of cancer deaths gradually increases year by year, and it is estimated that more than 11 million people will die from malignances in 2030. Various definitions of cancer have been proposed over the last few decades. In general, cancer displays several malignant features including the uncontrolled proliferation of abnormal cells, local invasion of normal tissue, and metastasis to a distant organ via the circulatory or lymphatic system. Environmental and genetic factors are considered to be the major causes of cancer. Cancer is believed to originate from a single normal cell through a multistage transformation that is assumed to take decades of development. Continuous exposure to some environmental factors (e.g., tobacco, unhealthy diet, radiation, chemical toxins, viruses, etc.) can potentially interact with gene changes in our bodies to enhance the formation of cancer (see http:// www.who.int/mediacentre/fac

Conventional treatments include surgical resection, chemotherapy, and radiotherapy. Although these series of interventions can effectively control localized or disseminated tumors, there is still a high rate of metastatic recurrence, thus limiting a patient's survival. Other strategies, such as immunotherapy, cytokine therapy, and adoptive cell therapy, have shown some promising results for malignances in animal models. Unfortunately, several phase I/II clinical trials have shown that most patients still fail to completely eliminate cancer (Aldrich et al., 2010). It is becoming increasingly clear that cancer cells express immunogenic antigens that can induce an effective immune response against tumor formation (Lowe et al., 2007); therefore, during the initial stages of disease, cancer cells could essentially be recognized and rejected by the immune system, which exerts hostprotective and tumor-modeling actions on developing tumors. Nonetheless, cancer cells also have numerous mechanisms to evade immunosurveillance (Burnet, 1970; Dunn et al., 2002), such as the downregulation of major histocompatibility complex (MHC) molecules or the antigen processing and presentation machineries, increasing the secretion of inhibitory cytokines, and the expression of inhibitory molecules to induce apoptosis in tumor-specific T cells (Dunn et al., 2004; Ferrara et al., 2003; Gabrilovich et al., 1996). On the basis of these phenomena, countless studies have confirmed the hypothesis that breaking self-tolerance and priming T lymphocytes are essential to treat cancer. Here, we discuss another possible

**1. Introduction** 

tsheets/ fs297/en/index.html).

