1. Department of Medical Oncology, Prince of Wales Hospital
2. University of Sydney
Improved survival from cancer treatments has lead to an increasing focus on issues related to long-term survivorship. Research concerning the sexual impact of cancer treatment and the psychosocial aspects of parenthood after cancer are growing areas within the psycho-oncology literature. The impact of these issues are especially important in light of their potential to influence treatment decision-making and thereby survival. This article reviews new Australian and international research and innovative initiatives addressing sexuality and fertility after a diagnosis of breast cancer. It identifies current gaps in the literature and directions for future research.
Approximately 27% of all new breast cancer diagnoses occur in women who are pre-menopausal at diagnosis, 6-7% of diagnoses occurring in women aged 40 years or less.1,2 For these women chemotherapy and endocrine therapies may have reproductive implications that are distressing or discordant with plans for childbearing. For women of all ages, both the diagnosis and resulting treatments for breast cancer can have an impact on a woman’s body image, sexuality and sexual function. These important quality of life issues can be difficult for a woman to raise with the treating team, may increase in adverse outcomes over time and can have an impact on her relationship with partners.
A number of the treatments for breast cancer can have either a direct or indirect impact on a woman’s fertility and hormone function. Chemotherapy causes direct toxicity to the ovaries and may cause either temporary amenorrhea or early menopause.3-7 Rates of amenorrhea and early menopause following individual chemotherapy regimens vary according to type of chemotherapeutic agent, the duration and cumulative dose, and the woman’s age at time of treatment.8,9 Menses and ovulation may continue during treatment with tamoxifen however, there is a need to delay childbearing during treatment with tamoxifen due to its unknown mutagenic effects.5,10,11 Suppression of ovarian function induced by goserelin is potentially reversible, however women will be unable to conceive during treatment, resulting in the need to delay pregnancy. Radiotherapy is not directly associated with ovarian dysfunction,7 however it may reduce the ability to lactate from the irradiated breast should the woman become pregnant and wish to breastfeed following treatment for breast cancer.12-14 Surgical oophorectomy as a method of ovarian suppression causes a rapid and permanent cessation of menses and is a treatment option for some pre-menopausal breast cancer patients with hormone receptor positive disease.15 Oophorectomy may be the preferred method of ovarian suppression for women with a family history of hereditary breast and ovarian cancer.
Early menopause for young women diagnosed with breast cancer is associated with a loss of childbearing capacity and may be accompanied by ‘hot flushes’, vaginal dryness, sexual dysfunction, a sense of loss and/or isolation from one’s peers16 and prolonged exposure to the risks associated with menopause, including cardiovascular disease, osteoporosis, genitourinary problems, weight gain, psychological distress and possibly cognitive impairment.5,10,11,17 Treatment-induced early menopause may be experienced as more debilitating than those associated with a natural menopause due to a more rapid decline in oestrogen levels.3
More women are delaying childbearing for personal, educational or professional reasons18 and breast cancer in women who are childless is becoming more common. Current evidence suggests that pregnancy following breast cancer does not increase a woman’s risk of developing a recurrence following a diagnosis of early breast cancer, perhaps even conferring a protective effect.19-24 Rates of birth defects in the children of women treated for breast cancer are not significantly higher than those in the general population.12,21,23,25,26 There are however methodological problems inherent in research on the outcomes of pregnancy among breast cancer patients, most notably, the inability to control for factors such as the self-selection of patients with good prognoses.3,25 While a past diagnosis of cancer does not influence most cancer patients’ childbearing aspirations,27 it does appear to influence childbearing behaviour. It is estimated that in only 3-7% of women become pregnant following a breast cancer diagnosis.7,19,28,29
Psycho-oncology research into the psychosocial aspects of fertility and cancer is in its infancy. To date most of the research has focused on understanding patient and health professional attitudes towards information provision, identifying current and preferred methods of fertility and menopause-related information provision, the majority involving samples of breast cancer patients.
A multi-centre Australian study by Thewes and colleagues30 surveyed 228 young women (aged 40 years or younger at diagnosis) with a diagnosis of early stage breast cancer about fertility and menopause-related information needs. Seventy-one per cent of participants recalled discussing fertility-related issues with a health professional as part of their breast cancer treatment and 86% recalled discussing menopause-related issues. Consultation with a fertility or menopause specialist and a fertility-related treatment decision aid were the most preferred methods of obtaining fertility-related information. Receiving fertility-related information was rated as most important at time of treatment decision-making, but became important again in follow-up care. Predictors of higher perceived importance of obtaining fertility-related information included a general preference for more information, plans for childbearing at diagnosis and having no children at diagnosis. Interestingly age, psychological distress or severity of disease (eg. nodal status, stage) were not significantly related to perceived importance of receiving fertility-related information.
As part of a longitudinal qualitative study of experiences of young women with breast cancer (diagnosed at 40 years or younger) Connell et al33 interviewed 13 Australian women at three time phases about their concerns about fertility, contraception, pregnancy and breastfeeding after breast cancer. Perceptions of fertility changed over time among women in this sample. Contraception issues were raised together with recurrence fears related to pregnancy and breastfeeding after breast cancer. Decisions related to unplanned pregnancies and breastfeeding were described as particularly onerous.
In the US, Duffy and colleagues31 interviewed 166 pre-menopausal women diagnosed with stage 0-III breast cancer and receiving chemotherapy about their experience of receiving information about the reproductive effects of chemotherapy. Sixty-eight per cent of women recalled receiving information about menopause-related issues and 34% recalled receiving information about fertility-related issues. Predictors of recalling menopause-related discussions were receiving hormonal therapy and having earlier-stage disease. Difficulty communicating with the medical team significantly increased the odds of women recalling discussion of fertility-related issues and being older or having greater anxiety in medical situations significantly decreased the odds of recalling such discussions.
Partridge and colleagues reported the results of a web-based survey of 657 survivors of stage 0-III breast cancer who were members of an internet-based survivors group.32 Respondents were self-selected and the response rate was 38%. The majority of respondents (62%) were within two years of time of diagnosis. Greater concern about fertility issues was significantly associated with a desire for children at time of diagnosis, number of prior pregnancies and prior difficulty conceiving. Twenty-nine per cent of women in this study said that fertility issues influenced their treatment decision-making, 72% of respondents reported discussing fertility issues with their doctors and 17% had seen a fertility specialist. Only half of all respondents (51%) believed that their fertility-related information needs were adequately met. Many women in this sample over-estimated their risk of permanent infertility. Nearly 50% of women aged 30 years or younger believed that they had a greater than 40% chance of entering menopause. Eighteen per cent of respondents said that they did not want any future pregnancies or were unsure if they would consider a future pregnancy. Of those women who were not considering pregnancy and those who were unsure about it, 36% believed that having a child would increase their risk of breast cancer recurrence.
The above research suggests that among young women with breast cancer there are unmet needs for information about fertility-related issues and that misperceptions about risks of becoming menopausal and the influence of pregnancy on recurrence are common. Overall, breast cancer patients report a strong preference for obtaining specialist information from gynaecology and fertility specialists, although only about a third of patients access these services.30,32 Some Australian clinics have incorporated these specialists into the multi-disciplinary team when treating pre-menopausal breast cancer patients. (Personal Communication – Prof C Saunders)
No studies to date have explored health professionals’ attitudes to providing breast cancer patients with fertility-related information, although one study has examined oncologists’ attitudes toward providing male cancer patients with information about sperm-banking.34 Time spent in consultations with oncologists is often brief and there are competing demands for information provision. Other health professionals, such as nurses, may have a role to play in the delivery of fertility and menopause-related information.35 However, studies of general nurses’ attitudes towards fertility-related information for cancer patients suggest that while nurses acknowledge they have a role in supporting patients with sexual and fertility concerns, they avoid discussing these topics because of a perceived lack of knowledge, experience and resources.36 Further work is needed to identify the education needs of all members of the treatment team in this area.
The burgeoning growth of assisted reproductive technologies (ART) and their application to the cancer setting has meant a growing number of fertility preservation methods are available or are on the horizon for cancer patients and increasing numbers of patients are requesting further information about them.37 Currently the most widely available ART to women treated for breast cancer is cryopreservation of embryos and reimplantation using standard in vitro fertilisation (IVF) procedures. This method of fertility preservation requires a committed partner, may delay the start of treatment and is generally not suitable for women with hormone receptor positive tumours. A number of other options, such as the cryopreservation of oocytes or ovarian tissue are still experimental, are not widely available and have only limited success in humans. The use of concurrent goserelin during chemotherapy in premenopausal women with hormone receptor negative breast cancer as a method of fertility preservation is currently being investigated in an international clinical trial.38 There has also been increased focus on providing breast cancer patients access to clinically proven strategies for managing menopausal symptoms following cancer treatment.39 Despite increasing availability of fertility preservation options and strategies for managing menopausal symptoms, there remains a dearth of comprehensive and widely available information tools to inform cancer patients about these issues. Further development of high-quality, fertility and menopause-related information for young women with breast cancer has been identified as a priority area for research by consumer advocacy groups and health professionals alike.40
The impact of breast cancer on sexuality and sexual function can vary greatly between women, with both the diagnosis and treatment having a significant impact on this aspect of well being.41-42 This impact can include altered sexual function,43-52 poor self-image,43,16 loss of libido43-47 and relationship problems.43,53 Much of the research in this area has historically focused on limiting the impact of surgery (breast conservation versus mastectomy; sentinel node biopsy versus axillary clearance), maintaining the breast form (prosthesis and reconstruction) and more recently managing the impact of premature menopause.37 While this work has led to important recognition of approaches to reduce the psychological and physical consequences of breast cancer treatment, it tends to focus on a single aspect in isolation from total experience of a woman. It does not acknowledge the complexity in meaning of “sexuality” for the woman with breast cancer, nor the differing levels of clinical intervention required in response to this varied meaning. The recognition of the existential nature of sexuality, where wholeness of body, not solely the breast, is needed to be truly functional,53 and the interplay between psychological concerns, physical symptoms such as fatigue and changes in body image is an area that has yet to be addressed. Similarly, the impact of consequences such as lymphoedema on sexuality and sexual function has received very limited attention.
Information on sexuality and sexual outcomes associated with cancer treatments is crucial at time of diagnosis and decision making. A meta-analysis of research on breast conservation versus mastectomy concluded that breast conservation leads to improved psychosexual outcomes;54 women with breast conserving surgery having better body image, earlier resumption of sexual activity55 and maintained breast caressing during sexual activity.56 For some women this information can be as important as survival figures when considering treatment options. While qualitative studies have identified the variation in the importance women place on this aspect of quality of life, these studies also highlight that this variation is not influenced by age, menopause status or whether the woman is in a relationship or not. There is, however, initial research suggesting that women with breast cancer who have invested significantly in body image as a source of their sense of self-worth adjust poorly following treatment.57 Women with heightened perceptions of body image pertaining to either attractiveness or wholeness are at an increased risk of poor psychosocial adjustment following treatment for breast cancer.58
Access to information on the consequences of treatment on sexual function has been identified as problematic, with women identifying limited or no discussion in this area.59 Similarly, both women and health professionals have identified this as a sensitive and difficult area to raise in discussions, with a lack or clarity about the best time for this topic to be raised.59
With the increase in conservative breast surgery and increasing support for reconstructive surgery for women undergoing mastectomy, there can be an assumption that sexuality and body image concerns are being addressed. However, women who experience a breast cancer diagnosis continue to identify this as a neglected area of research and focus in their recovery. Partners’ needs, approaches to providing information and accessing support in this area require further research to determine how to best support women in this aspect of quality of life.
An Australian project is currently underway which aims to compare the efficacy of a fertility-related decision aid to usual care among young women with a diagnosis of early breast cancer. (Personal Communication – Dr B Meiser) Another multi-centre Australian project is developing an information tool to improve patient education about the menopausal side-effects of adjuvant therapies for young women with a diagnosis of breast cancer. The information tool will be developed in consultation with existing information sources (eg. Australasian Menopause Society, Jean Hailes Foundation, National Health and Medical Research Council (NHMRC) and North American Menopause Society) in accordance with NHMRC guidelines. The information tool will also address the efficacy and safety of available treatments for menopausal symptoms following breast cancer and implications of treatments for sexual functioning. (Personal Communication – A/Prof M Hickie)
In the US a novel randomised control trial is currently underway which aims to explore the efficacy of a peer counselling intervention for African-American women with a diagnosis of breast cancer. The intervention under investigation includes individual counselling sessions about fertility issues with specially trained peer counsellors who are guided by a purposely-designed workbook.35
The Fertility and Breast Cancer Project60 aims to evaluate the impact of an internet-based information and support tool that provides comprehensive information about the impact of breast cancer treatment on fertility for women with breast cancer who have fertility concerns.
Further research is needed to explore the psychosocial issues of parenthood after cancer among patients with more heterogeneous diagnoses. A greater understanding is also required of the motivations for attempting or not attempting pregnancy following breast cancer. More research is required to explore health professionals’ attitudes toward providing cancer patients with fertility-related information, and to identify and overcome potential barriers facing the wide-spread dissemination of fertility-related information to those who require it.
A breast nurse led intervention to provide information and appropriate referral is currently being trialled in two states in Australia. This project, funded by the National Breast Cancer Foundation and conducted by White, Butow, Saunders et al will examine if the intervention leads to improved access to information, improved outcomes related to sexuality and sexual function and earlier referral to specialist services if required.
These innovative research projects currently underway in Australia and internationally are likely to play an important role in improving education about fertility preservation methods, sexuality and management of menopausal symptoms, as well as facilitate treatment decision-making to help women balance the survival gains of adjuvant therapies with their childbearing aspirations.
22. Gelber S, Coates AS, Goldhirsch A, Castiglione-Gertsch M, Marini G, Lindtner J, et al. Effect of pregnancy on overall survival after the diagnosis of early-stage breast cancer. J Clin Oncol. 2001.19(6):1671-1675.
30. Thewes B, Meiser B, Taylor A, Phillips KA, Pendlebury S, Capp A, et al. The fertility- and menopause-related information needs of younger women with a diagnosis of early breast cancer. J Clin Oncol. 2005.23(22):5155-5165.
37. Oktay K, Buyuk E, Davis O, Yermakova I, Veeck L, Rosenwaks Z. Fertility preservation in breast cancer patients: IVF and embryo cryopreservation after ovarian stimulation. Hum Reprod. 2003.18(1):90-95.
58. Carver CS, Pozo Kaderman C, Price AA, Noriega V, Harris SD, Derhagopian RP, Robinson DS, Moffat FL, Jr. Concern about aspects of body image and adjustment to early stage breast cancer. Psychosom Med. 1998. 60(2):168-174.