Changes to Sexual Well-being and Intimacy After Breast Cancer

Jane M. Ussher, PhD; Janette Perz, PhD; Emilee Gilbert, PhD

Disclosures

Cancer Nurs. 2012;35(6):456-465. 

In This Article

Result

The Impact of Breast Cancer on Sexual Well-being and Relationships

In answer to a question on the impact of breast cancer or breast cancer treatment on sexual well-being, most of the 1956 participants reported a decrease in frequency of sex (78%), energy for sex (76%), sexual arousal (74%), feeling desirable (73%), interest in sex (71%), sexual pleasure (64%), satisfaction with sex (62%), and intimacy (60%) (Table 3). No change was reported by most participants in the areas of "partner interested in sex" (64.3%) and "communication with partner about sexual needs" (50.5%); however, a considerable proportion of the sample also reported decreases in these areas. Only 7.2% of the sample noted an increase in the area of "communication with partner about sexual needs," with this being the largest recorded increase.

Of 1954 participants who described which aspects of breast cancer or breast cancer treatment were perceived to have affected sexual well-being (Table 4), the most frequent responses were tiredness (71%), vaginal dryness (63%), hot flushes (51%), and feeling unattractive (51%). When asked what had been tried to deal with changes to his/her sexual well-being after the onset of breast cancer, the most common response, reported by 61% of 1598 respondents, was talking to partner/husband, followed by lubricant (57%), exercise (45%), reading information booklets/leaflets (31%), talking to a health professional (26%), antidepressants (20%), psychotherapy/counselling (16%), sex aids (14%), medications (11%), and books (11%).

Of 1999 respondents who described the impact of breast cancer on their sexual relationship, 24% said it was affected "dramatically"; 26%, "considerably"; 32%, "somewhat"; and only 15%, "not at all." Of the 1348 participants who answered a question asking whether their partner had experienced any negative consequences because of their breast cancer, the most common reports were fear of hurting me during sex (52%), lack of interest in sex (37%), difficulties in communication (34%), tiredness (28%), and change in role (seeing me as a patient) (20%). Table 5 illustrates these reports, as well as the other reported effects. The pattern of these proportions in all of the above items did not differ according to age, relationship status, sexual orientation, or current stage of cancer treatment. More than 400 participants (n = 413) responded to an item inquiring into the influence of cancer upon their ability to enter into a new relationship, with 57% indicating that it had had an impact. The most frequently identified issues were related to feelings around appearance and the perceptions of others with "body image/attractiveness concerns," noted by 77% of the subsample, followed by "lack of confidence" (66.5%), "not feeling desirable" (65%), and "fear of rejection" (46.5%). Of these concerns, "not feeling desirable" and "fear of rejection" were more commonly reported by women seeking new heterosexual relationships (63.8% and 45.4%, respectively) compared with women seeking a new same-sex relationship (14.3% and 0%, respectively). The most common physical effects reported were fatigue (46.5%), vaginal dryness (42.9%) and upper body or other pain (22.8%).

The Subjective Experience of Changes to Sexual Well-being After Breast Cancer

A total of 1259 participants, all women, provided answers to an open-ended question asking about subjective experience of changes to sexual well-being after breast cancer. The most common responses related to emotional consequences, physical changes, feeling unattractive or lacking femininity, reconciliation of self to changes, concerns about impact on partner or relationship, and partner support and relationship improvement, outlined below.

Devastation, Depression, and Sadness: Emotional Consequences. More than a third of the 1259 open-ended question respondents (n = 439) described negative emotional consequences of changes to sexual well-being after breast cancer. The most commonly reported feelings were "devastating" and "depressing," with other descriptors including "confusing," "disturbing," "soul destroying," "shocking and unexpected," "frustrating," "traumatic," and "demoralizing." For most women, these feelings were associated with a loss of interest in sex or not experiencing pleasure during sex, as illustrated by the following accounts: "I find that I have no desire for sex. When I have sex I find that it was not enjoyable which then made me feel guilty" (47-year-old woman, locally advanced breast cancer, 2 years postdiagnosis); "Very upsetting. I love my husband very much and our relationship is very good. My physical body does not arouse or respond like it used to" (51-year-old woman, early breast cancer, 3 years postdiagnosis).

A significant proportion of women reported sadness and loss because of sexual changes, with one saying "I feel a sense of loss, as if part of me has died," and another saying, "I felt like my heart had been ripped out. Very empty." Many women also told us that they "miss the sexual aspect of my life," as illustrated in the following account.

I feel as if an integral part of my life is no longer well within my reach. Although I am getting older and therefore might be expected to lose interest in sex to a certain degree, sex has been an important component of my life until I started receiving treatment for breast cancer. I worry about my loss of interest in sex and I miss the sexual aspect of my life (65-year-old woman, early breast cancer, 3 years postdiagnosis).

A substantial number of women told us that they experienced feelings of loss because of the changes in their relationship with their partner, feeling that a "door was being closed" and they could not always discuss it. The "totally unexpected" nature of changes to sexual well-being was also a source of distress for many participants, who told us that they had been given no information about what to expect: "Terrible! I am young and had not expected the side effects sexually that come from menopause and treatments…very sad" (26-year-old woman, early breast cancer, 3 years postdiagnosis); "Devastating. A complete shock, no one tells you that it ruins your sex life" (61-year-old, secondary breast cancer, 3 years postdiagnosis).

Painful Sex and Absence of Desire: Physical Changes to Sexual Well-being. Approximately one quarter of the 1259 open-ended question respondents (n = 249) described the changes to sexual well-being after breast cancer in terms of physical changes, including vaginal dryness or prolapse; absence of sexual desire, arousal, or orgasm; erectile dysfunction; and absence of breast sensitivity or breast tenderness: "Enjoy the sexual experience but very conscious of my breast and the fact they have no feeling. Weight put on the breast can be painful" (48-year-old woman, early breast cancer, 2 years postdiagnosis); "Main problem is lack of interest and vaginal dryness. Husband VERY supportive but doesn't initiate sex as often because he doesn't want to be pushy as he knows I just can't be bothered a lot of the time" (50-year-old woman, early breast cancer, 3 years postdiagnosis).

Vaginal dryness or prolapse can lead to painful coital sex. This was an experience commonly reported by women, which can sometimes lead to avoidance of sex: "Sexual intercourse is very painful. We can get pleasure from mutual masturbation, but penetration for me is very, very painful. It is almost like my husband is wearing a condom with cut glass attached to it" (65-year-old woman, early breast cancer, 6 years postdiagnosis). A number of women gave accounts of dealing with these physical changes by renegotiating coital sexual activity after breast cancer, primarily through the use of lubricants. In some instances, this was positioned positively, as an effective solution: "Breast cancer diagnosed Oct 2008. Met new partner (widower) Jan 09 and commenced sexual relationship Feb 09. No probs except dryness due to Arimidex (use lubricant)" (67-year-old woman, early breast cancer, 3 years postdiagnosis). In other instances, lubrication was described as "messy" and as interrupting the spontaneity of sex: "The only way to have sex is with lubrication which is messy and I find it extremely frustrating and annoying for not only me but for my husband as the first thing I reach for is my bottle of lubricant" (38-year-old woman, early breast cancer, 9 years postdiagnosis). Masturbation was also described as a solution, with one 75-year-old woman with locally advanced breast cancer, 1 year postdiagnosis, telling us: "As a still attractive older woman no sexual partner means masturbation an option on occasion." These accounts of renegotiation were in the minority, however, with most women reporting that they had ceased sexual activity or endured uncomfortable or painful sex to please their partner. As one woman commented, "There is physical and emotional pain involved in having sex—I worry that I only doing it to keep him happy, not at all for myself." Women also reported that the physical consequences of cancer or cancer treatment, including tiredness, nausea, feeling "sore" or "uncomfortable," and weight gain, affected their sexual well-being: "Sex is the last thing on your mind when your chest hurts, you lose all your hair, you are tired and feel very unattractive—you just want to survive and get through" (35-year-old woman, secondary breast cancer, 1 year postdiagnosis).

In contrast, a very small number of women reported increased sexual pleasure or desire, "increased libido," or that sex was a way of feeling "real and alive" during treatment: "I went from not feeling a desirable woman to feeling the more sexually interested and excited I have ever been" (50-year-old woman, early breast cancer, 2 years postdiagnosis); "I am shocked that my libido has increased" (35-year-old woman, early breast cancer, 2 years postdiagnosis). These cases may be in the minority, but they suggest that detrimental effects of breast cancer on sexual well-being cannot be assumed to be the case for all women.

I'M not Really a Woman Anymore: Feeling Unattractive and Lacking in Femininity. Approximately one-fifth of the open-ended question respondents (n = 212) reported feeling unattractive or lacking in femininity after breast cancer and told us that, as a consequence, they felt that this affected their sexual well-being. Thus, women described themselves as being distressed because of "negative feelings about my body" or because "I don't feel attractive at all anymore."

When first diagnosed, I was alone, so sex not important, now it is naturally more important, and having no breasts now sometimes makes me feel less feminine considering my fiancé was always a "boob" man (41-year-old woman, early breast cancer, 6 years postdiagnosis).

Other women provided more pejorative comments about themselves, feeling "old and ugly," "maimed," "grotesque," "mutilated," a "freak," "damaged goods," "like an old has been," "undesirable," and "deformed," feelings that were associated with breast scars, reconstruction, hair loss, and weight gain: "I hate to look at myself. I can't look in the mirror. I can't even touch myself to see if the lump is still there. I can't stand to be looked at or touched. A hug is all I can bear" (48-year-old woman, locally advanced breast cancer, 1 year postdiagnosis). These feelings led many women to hide their bodies from their partner, saying "I don't want my husband to see or touch my breast" or "I don't feel like exposing my breast and have partner touching it and seeing it." Many women also reported feeling "like I was a different person," "my femininity was ripped off overnight," "not really a woman," "less womanly," "less of a person," or "an inadequate partner":

Horrible!! I'm 28 and have been married for 9 months and have had sex probably 4 times in that time. I used to enjoy it very much and now have no physical pleasure from it and barely ever do it. This has impacted on my identity as a woman and as a wife, has made me consider my partner having an affair because I am not able to satisfy him sexually (29-year-old woman, early breast cancer, 1 year postdiagnosis).

In some instances, this feeling was associated with partner rejection, which confirmed the woman's fears, as is illustrated in the following accounts: "Husband avoided my reconstructed breast, which made me feel it wasn't a 'normal' thing"; "he says I have 'mutilated my body.' It isn't a pretty sight, and I don't like it either, but I'm stuck with it." In contrast, other women described partner support as alleviating their fears about being "unattractive" or "deformed" or of their partner helping to address their lack of "confidence in body image":

Initially, I felt that I was unattractive, even deformed. I worried that my husband wouldn't love my body as before. He tells me over and over that he loves me even more now so… I have to get over it and just believe him (60-year-old woman, early breast cancer, 1 year postdiagnosis).

Partner support or acceptance did not always alleviate women's negative feelings about their body or femininity, however, as illustrated in the following account: "although my husband says he has no problem with my body as it now…I have a problem with it!…I just can't get passed [sic] this feeling. This affects our intimacy greatly!" (47-year-old woman, early breast cancer, 2 years postdiagnosis).

It Really Hasn't Worried me: No Change or Reconciling Self to Changes in Sexual Well-being. Approximately one-tenth of the open-ended question respondents (n = 123) described having experienced no change in sexual well-being or having reconciled themselves to such changes since the diagnosis of breast cancer: "It really hasn't worried me all that much"; "This is something we have both come to terms with and manage accordingly"; "I was too tired to care." Others positioned changes in sexual well-being as temporary and looked forward to improvements in the future: "I hope I will 'get back to normal' after I finish treatment. I feel I need to conserve my energy for healing at this time."

At the same time, for a small number of participants, the cessation of sexual activity was welcomed: "now I have a reason to say no"; "In some ways a relief"; "Being over 70 and never very partial to sex it was fine." For other women, sex was positioned as unimportant or as less important than other aspects of health since the diagnosis of breast cancer, which meant that changes to sexual well-being were accepted: "Other things seem more important and my partner has been so caring that sex seems quite unimportant"; "Find I am focused on how my health rather than sex." A few women commented that sex had never been important: "after so many years of marriage we have become very good friends, so sex is not that important"; "did not have sex before and not having it now"; "the need for sex was no longer part of my life."

Letting my Partner Down: Concerns About Impact on Partner or Relationship. For a number of women, approximately one-fifth of the open-ended question respondents (n = 190), the impact of changes in sexual well-being for their partner was their major concern: "It made me feel as though I was neglecting my husband but I just don't feel the same about sex as I use to."

I'd say I've had less than 5 orgasms in 12 months and I am not even bothered which is not how I use to be. I worry about how my partner must feel as I struggle to appear interested when we have sex. We are close but I know he would like more from me (34-year-old woman, early breast cancer, 1 year postdiagnosis).

Approximately 10% of the open-ended question respondents (n = 126) told us that their relationship had experienced difficulty, or broken down, because of changes to their sexual well-being after breast cancer. Comments included the following: "It was all very difficult, and placed a big strain on my relationship"; "my husband had affairs behind my back…our marriage is all but finished although we are still together"; "my husband did not react well and subsequently left." A number of women also told us that existing relationship difficulties had been exacerbated by the occurrence of breast cancer: "he does not seem interested anymore in sex at all. It had been a bit of a problem previous to my diagnosis and has got much worse since"; "my diagnosis just exacerbated problems that already existed in my marriage. A non communicative relationship just got worse."

Most respondents attributed these relationship changes or breakdown to their own disinterest in sex: "I went from a high libido to no libido or interest at all, my husband replaced me in less than 2 months"; "pre diagnosis sex was fun but now I have no desire. My relationship with husband is strained and stressed. He still wants sex but I am not aroused." For other women, these relationship changes were attributed to their partner becoming their "carer," "brother," or" housemate" and thus no longer their lover. As one woman told us, "I feel the relationship with my husband has become like housemates rather than husband and wife." Difficulties in communication were also described as causing relationship tension: "Very hard to come to terms with since my partner isn't good at communicating and in denial about my health issues"; "Devastating, communication became very strained for the first time in our relationship."

We're Closer Now: Partner Support and Relationship Improvement. A small proportion of women, approximately one-tenth of the open-ended question respondents, described feeling closer or experiencing greater intimacy with their partner since the diagnosis of breast cancer: "Whilst the act of sex has decreased the intimacy between us has increased in other ways"; "Our relationship has moved to another level of loving without sex"; "I actually feel more secure in my relationship postdiagnosis." Breast cancer was also described as offering an opportunity to renegotiate intimacy to meet a woman's needs, often addressing needs that had been there before breast cancer. One woman described this as "freedom" from sex, whereas another described increased "flirtiness and warmth," which resulted in a richer relationship with her husband, with whom she had developed "a deep unspoken bond that is much richer than the earlier sexual moments." Better communication since diagnosis was also reported by a number of female participants: "we communicate our needs much better than before my diagnosis"; "I found that we communicated better regarding issues during treatment and since." Having a supportive partner who accepted the changes the woman was experiencing and who exerted "no pressure" for sex or was "willing to wait until I'm willing" was also described as a "the most important thing" by a number of women:

At diagnosis we were both so devastated and I felt that I would never be able to have sex again but as time goes on and acceptance happens our sex life has improved thanks mainly to my partner's attitude that he loves me and does not find anything different about me (65-year-old woman, early breast cancer, 1 year postdiagnosis).

Having a secure relationship before breast cancer was described as important for a number of women, allowing the couple to cope with changes in sexual desire or activity: "we are very secure in our relationship and agreed that intercourse was not high on the list of needs. Support, sharing conversations and just being together was more important." Equally, a number of women described new relationships developing since diagnosis and treatment for breast cancer, sometimes after a previous relationship had ended after cancer: "I have found a very considerate amazing beautiful partner. I also still feel sexy and whole and goddess like."

When I was first diagnosed, I went through a terrible time of feeling undesirable, fearing disfigurement and seeking affirmation. I felt very needy. I sought reassurance and was firmly rejected. Although upsetting at the time, this was paradoxically helpful in forcing me to face up to my future independently and take ownership of what was happening to me. The effect of the surgery was much less disfiguring than I'd feared, and my confidence has returned. I've since had an affirming sexual relationship (62-year-old woman, early breast cancer, 1 year postdiagnosis).

These accounts suggest that relationship difficulty or breakdown does not mean the end of sexual relationships for women with breast cancer, as new relationships can develop and can be rewarding both emotionally and sexually.

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