Sexuality and Breast Cancer: Overview of Issues
Authors: Kerry V. Harwood, RN, MSN, and Anne P. O'Connor, RN, MSN
Innovations in Oncology Nursing
Copyright © 1994, Meniscus Health Care Communications
Kerry V. Harwood is an Oncology Clinical Nurse Specialist, Duke University Medical Center, Durham, NC, and Anne P. O'Connor is Oncology Nurse Specialist, Pittsburgh Cancer Institute, University of Pittsburgh Medical Center, Pittsburgh, PA.
Innovations in Oncology Nursing, Vol. 10, No. 23, 1994
Reprinted with permission of the publisher
IntroductionWhat is the impact of breast cancer and its treatment on women's sexuality? Practicing nurses are looking for concrete areas where intervention may improve quality of life. We look for answers to this question in order to educate patients choosing between reasonable treatment alternatives, e.g. mastectomy versus breast conservation, reconstruction versus no reconstruction, adjuvant chemotherapy versus no chemotherapy. We also look for answers to anticipate common antecedents to sexual problems in hope of prevention or early intervention.
The study of sexuality after breast cancer is evolving. Insight can be gained from a limited number of studies addressing sexual aspects of life after breast cancer. However, interpretation of available findings is hampered by methodological limitations of the studies. Anecdotal insights are available through the lay literature, detailing the experience of women with breast cancer and their partners. The impact of breast cancer on sexuality can be considered with the context of:
- goals for sexual health
- normal sexuality
- the impact of specific treatments for breast cancer on sexuality
- the impact of chronic illness on sexuality
Goals for Sexual HealthWhat is healthy sexuality? This emotionally charged issue will be defined by both client and caregiver within the context of factors such as gender, age, personal attitudes, and religious/cultural mores. It has been a commonly held belief that sex is a physical activity that begins when intercourse commences, and that heterosexual coitus, and coitus alone, constitutes sexual activity.
At the other end of he spectrum, Kitzinger, drawing from women's own experiences, describes sexuality as more than biologic and as involving the entire context of women's lives, relationships, and emotions . Valid research and appropriate intervention in the area of sexual health require that the practitioner appreciate the complexity of the interaction among factors that influence sexuality. One model is the World Health Organization (WHO) definition of sexual health: "Sexual health is the integration of the somatic, emotional, intellectual, and social aspects in ways that are positively enriching and that will enhance personality, communication, and love." 
Patient goals for sexuality are highly individual and may be incorrectly defined if assessment is based on stereotypes. For example, one should not assume that older women are not interested in sex. Most women over age 65 remain interested in their body image and are sexually active. Until a patient's feelings about sexuality are known, an older woman's concerns should be addressed in a manner similar to that for a younger person. Older women may be experiencing equal loss but not be as comfortable in expressing these feelings. Similarly, no blanket assumptions can be correctly made regarding sexual health goal in women who are not married or women whose physical appearance deviates significantly from the caregiver's stereotype of sexual attractiveness.
Human SexualitySexual behavior is made up of many elements beyond intercourse.  The first is the development of one's sexual self-image and acceptance of one's sexuality. A woman's sexuality is influenced by many factors and may change significantly throughout her life. It may or may not be linked to her ability to have children. One's view of sexual attractiveness in general, and one's self-perception, may be primarily rooted in appearance or more strongly associated with personality characteristics.
Another component of sexual behavior is choosing a partner. The major task of young adulthood is developing intimacy, learning to give and receive love, and choosing a partner. Sex can be a significant part of that intimacy and can serve as a way of communicating and expressing trust in a relationship.  In discussing sexuality with patients, it is important to remember that the sexual partner may be male or female. Fantasy, masturbation, and foreplay are also elements of normal sexuality.
Each of these elements, e.g. sexual self-image, partner selection, and sexual activity, has the potential to be disrupted by breast cancer.
Within the context of sexuality lie the specifics of the physiologic sexual response. Figure 1 depicts the normal female sexual response curve. Understanding the stages of female sexual response facilitates awareness of illness and treatment issues that can affect progression in sexual response.
Stages of Female Sexual Response
- Excitment Phase: The process typically begins with excitement in the mind. The mental initiation may be prevented by overriding worries, distractions, or relationship problems. Physical stimulation increases psychological excitement, with erectile events occurring in the clitoris, the labia, and the lower third of the vagina. The lower third of the vagina also secretes a lubricating fluid. This lubrication is often lost because of the reduced estrogen levels accompanying either natural or induced menopause. Lack of lubrication may be interpreted as lack of sexual excitement, prematurely ending the sexual encounter. Penetration without lubrication, either natural or artificial, is painful and results in total loss of sexual excitement.
- Plateau Phase: The upper two thirds of the vagina expand, the
cervix is elevated, and the breasts may change, with nipple erection and/or
swelling of the areola. This is a state of heightened arousal, which may
persist until orgasm occurs or may diminish because of distraction, fatigue,
anxiety about appearance, lack of adequate stimulation, or presence of
discomfort. These factors may necessitate longer periods of stimulation or
changes in sexual practices to allow progression to orgasm, or may disrupt the
woman's orgasmic potential.
- Orgasmic Phase: Rhythmic muscular contractions within the female
pelvis are followed by a profound feeling of satisfaction. Orgasm is not an
assured outcome of every sexual encounter. However, women, unlike men, are
often capable of multiple orgasms within a single sexual experience.
- Resolution Phase: Sexual excitement fades more slowly in women than in men, with potential for further arousal and orgasm.
Impact of Breast Cancer Treatment on SexualityMuch of the research related to breast cancer and sexuality has attempted to describe the effects of specific breast cancer treatments on sexuality and compare the degree of dysfunction among treatment alternatives. These are valid attempts to produce data that would be helpful to women's decision making: however, these data must be interpreted cautiously, given the methodologic limitations of these studies.
Mastectomy Versus Breast ConservationHistorical literature is available regarding women's perceptions of the impact of mastectomy when it was the standard treatment and when many patients underwent the more disfiguring radical mastectomy.  A sizable proportion of women described mastectomy as a mutilating and disfiguring experience. Approximately a quarter of these women described negative effects on sexual adjustment, including decreased frequency of intercourse, decreased sexual satisfaction, and more difficulty in achieving orgasm. Yet the majority of women seemed to cope sexually with the stress of surgery and the loss of a breast, with more than 63% reporting no change in those same parameters; 12% actually described increased sexual satisfaction in their relationship. Other investigators report a significant amount of sexual disruption, which continues beyond the treatment phase. Approximately 30% of breast cancer patients reported dissatisfaction in sexual relationships 2 years after diagnosis. 
Increasingly, women are offered breast-conserving treatment for breast cancer. The principal objective of a breast-conserving procedure is to preserve the integrity of the woman's body image. This involves an additive assumption that such a procedure will be less physically and psychologically disable tan a mastectomy. Yes, when one considers the many facets of sexuality, that assumption may not hold. Does a breast-conserving procedure affect a woman's sexuality in a less profound way than complete removal of the breast?
Two comprehensive reviews have described studies comparing quality of life, including sexuality, in patients receiving mastectomy versus breast-conserving treatment. [9,10] Most quality-of-life outcomes were not difference between the treatment groups. Conserving a woman's breast did consistently improve the ability to preserve body image. Although no differences in sexual functioning between mastectomy and breast-conservation patients was noted in the majority of studies, when studies did detect a difference, the benefit consistently favored breast conservation.
Breast-conserving treatment usually includes both limited surgery and breast irradiation. McCormick and colleagues explored women's perceptions of their treated breast in a group of 74 women at least 1 year after treatment.  Although the vast majority of women were very satisfied, both cosmetically and sexually, significant changes were noted in comparing the treated versus the untreated breast. Of 64 participants who were sexually active, 48% noted increased breast discomfort, 39% avoided the treated breast, and 20% stated their partners avoided it.
Why were not more significant differences in sexuality following the alternative breast surgeries? Schover suggest that factors other than the extent of breast surgery may play a larger role in sexual satisfaction, including overall psychological health, satisfaction with the relationship and precancer sex life.  Another factor in sexual dysfunction following breast cancer may be the impact of systemic therapies utilized in addition to breast surgery.
Breast Reconstruction Versus No ReconstructionMany women are not offered a breast-conserving procedure because of the size, location or multifocal nature of the tumor; confounding medical conditions; lack of access to radiation therapy facilities; or physician bias. Breast reconstruction following mastectomy can be an alternative to mastectomy alone. Ten years ago, about 10% of women who were eligible for reconstruction chose this option.  Most recent assessments indicate that as many as 30% of eligible women opt for reconstruction . Why do some women choose this option and what impact does it have on sexuality?
Reasons commonly cited for seeking reconstruction are to be free of the external prosthesis; to "feel whole again"; to reestablish symmetry; to be less inhibited sexually and reduce self-consciousness about appearance; and to be less preoccupied with the underlying threat of cancer.  Contrary to earlier concerns, women who pursue reconstruction demonstrate positive coping skills and high self-esteem. [15,16] Other factors affecting a woman's choice of reconstruction include other health factors, age, social support network, and availability of third-party reimbursement.
In a recent study of women's response to reconstruction, Rowland and colleagues describe the characteristics and psycho social outcomes of 58 women undergoing delayed breast reconstruction.  Of the women studied, 83% were very satisfied overall with the results. Comparing pre-and post-operative interviews, women were more comfortable with their sexuality, more satisfied with sexual activity, more willing to show others the surgical site, and less concerned about their health without the mastectomy site, which is a constant reminder of cancer. In extrapolating these data, it is important to keep in mind the characteristics of the sample. In this case, the sample consisted of women who self-referred for delayed reconstruction. They were prominently well-educated, employed, married white women with a median age of 42 years. About half described impaired sexual functioning since mastectomy, and participants scored very positively on a scale of self-esteem. The vast majority had not received adjuvant chemotherapy.
Positive outcomes following breast reconstruction, including self-image and feeling less self-conscious both socially and sexually, have been described to by other investigators as well. [18,19]
Impact of Chronic Illness on SexualityIn describing sexual dysfunction within illness, there are several caveats to keep in mind. First, health care provider characteristics may influence recognition of sexual problems. in a Swedish study, female physicians under age 45 who practiced in an urban environment identified sexual problems up to 10 times more frequently than the typical practitioner.
Second, sexual dysfunction occurs frequently within the healthy population as well. Studies of women with diabetes, chronic alcoholism and epilepsy demonstrated frequencies of sexual dysfunction ranging from 20% to 32%, with none of these groups differing significantly from the control group frequency of 23%.
Several factors may place women at higher risk of sexual dysfunction after breast cancer. Diagnosis in the 20s or 30s is difficult, as developing intimacy, choosing one's life partner, and childbearing are high developmental priorities. Previous sexual problems, poor psychological adjustment, and unhappy relationships or the absence of a committed partner at time of diagnosis may also place women at risk.
Illness can affect sexuality in a variety of ways unrelated to specific effects on sex organs. Concerns regarding mortality and finances can override one's ability to think of anything else. Illness can influence one's self-esteem by forcing a change in roles, inability to continue work, and dependence on others. Depression may sap energy or exacerbate the fatigue caused by various treatments. Pain or other physical discomforts may interfere with progression of sexual response. Chronic illness can bring about feelings of self-involvement that shut out all emotions except the need for "a solution, a cure, a reprieve." One of the first emotions to go in the midst of this self-involvement is the need to give pleasure to another.
Partner IssuesThe impact of a diagnosis of cancer can be as distressing for a partner as it is for the woman with breast cancer. Clinical studies describe the husbands of mastectomy patients as experiencing anxiety and distress at levels similar to their partner's. [22,23] A recent review of the literature describing the impact of cancer on couples affirmed that being the spouse of a cancer patient is as stressful as being the patient.  The distress experienced by both partners can lead to changes in their intimacy. The first concern is fear of the cancer, i.e., the prognosis of illness at diagnosis. Spouses have reported greater concern about the threat of the cancer than with the body image changes of mastectomy.  After mastectomy, some women fear that their partner will be offended at the site of an absent breast. Recent reports indicate more openness among couples and greater acceptance of the surgical site by partners than previously thought.  Kaplan tells us that most men "tune out" their partner's missing breast during lovemaking and focus on the pleasures of the experience.
Partners are concerned about how to express their love physically after breast surgery. Signs of affection such as hugging or fondling the breast may cause pain and discomfort in the post-operative period or even long after radiation therapy. It may take some time before both the woman and her partner feel comfortable engaging in sex. The couple's former patterns of lovemaking may need some adjustments. Alternative types of foreplay, as well as alternative position, may need to be considered.
Practical considerations like medical bills, home finances, and balancing additional home responsibilities with occupational pressures can drain the energy of spouses. These stresses can lead to feelings of powerlessness which may disrupt the frequency, pleasure, and importance of sexual activity for the partner of a woman with breast cancer.
All of these issues -- anxiety regarding the prognosis, fear of causing pain, and the stresses of altered roles and additional expenses -- can alter a partner's willingness to initiate sexual contact. partners may withdraw sexual energy from the relationship as a form of self-protection.  Conversely, some couples find that the intimate bonds forged in battling breast cancer together actually enhance their sexual relationship.
ConclusionsWomen have many choices of treatment for their breast cancer. Further exploration of the impact of breast cancer and its various treatments on sexuality will help women in this decision-making process. Identifying those factors that place women at higher risk for sexual dysfunction will promote earlier intervention. All treatment options have the potential to affect sexuality negatively. The majority of women, whoever, do appear to regain a quality of sexuality satisfactory to them.
The opportunity to participate actively in the treatment-planning process and seek surgical treatment geared toward one's self-esteem/body image may determine satisfaction as strongly as any specific treatment option. The impacts of systemic therapies and patient perspectives on sexuality, discussed in more detail elsewhere in this publication, are also critical areas for oncology nursing practice and research.
Kitzinger, S. Women's Experience of Sex New York, NY; GP Putnam's
Kiebert GM, deHaes JCJM, van de Velde, CJH. "The impact of breast-conserving treatment and mastectomy on the quality of life of early-stage breast cancer patients: a review." J. Clin. Oncol. 1991; 9:1059-1070.