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Abstract

Background:

Breast cancer survivorship is often associated with a negative impact on sexual function and sexual well-being. Given that sexual well-being contributes to quality of life—including for breast cancer survivors—it is important to address survivors’ sexual worries during the treatment process.

Objective:

This study explored factors that contribute to changes in sexual functioning and sexual well-being after breast cancer diagnosis and treatment in otherwise healthy patients.

Design:

Narrative qualitative study using thematic analysis.

Method:

We included 25 breast cancer survivors without severe comorbidities for individual interviews (N = 16) and 2 focus group discussions (N = 4 and N = 6). One participant attended both an individual interview and a focus group discussion.

Results:

After the diagnosis of breast cancer, a sudden shift emerged in relation to life before and after breast cancer. A thematic analysis resulted in the identification of one high-level theme: asymmetry. This asymmetry was experienced in the following domains: (1) physical asymmetry in the chest region after surgery and radiotherapy, (2) sexual asymmetry; differences in how the body and mind react to sexual stimuli due to residual physical side effects and the effects of ongoing treatment: a lack of sexual desire, severe vaginal dryness and/or dyspareunia, and lack of vaginal arousal response during sexual activity, (3) life asymmetry in time- and self-management, which deprives patients from experiences that make someone feel good about oneself, (4) asymmetry in the experience in invulnerability: the reality of the sexual side effects of treatment and expectations of these side effects after being informed by a healthcare professional, and (5) relational asymmetry: asymmetry between the partners in their relationship due to role confusion and role changes.

Conclusion:

Breast cancer diagnosis and treatment have a distinct impact on sexual function and sexual well-being. Changes in social relationships due to the diagnosis and the physical side effects of treatment are associated with a decline in sexual well-being, which should receive more attention in research and clinical care.

Plain language summary

Sexuality after breast cancer treatment: an experience of asymmetry

Most breast cancer patients experience sexual side effects when they are treated for breast cancer. These side effects may negatively impact their sexual well-being. This study explores what changes in sexual function and sexual well-being during breast cancer treatment in otherwise healthy patients. The information from this study can be used to better address sexual worries during and after treatment.

Twenty-five participants who were treated for breast cancer less than 5 years ago, shared their experiences with sexuality in an individual interview or focus group. The questions that guided these interviews and focus groups were based on a framework describing the link between illness and sexuality.

We learned that patients experienced an asymmetry when compared with their life before their breast cancer diagnosis.

Asymmetry was experienced in the following domains:

1. Physical asymmetry: physical changes in the breast area result for some in the fact that this area is no longer an erogenous zone.

2. Sexual asymmetry: differences in how the body (e.g., a lack of sexual desire, severe vaginal dryness, pain with intercourse, and a lack of vaginal arousal response during sexual activity) and mind (e.g., willingness to experience intimacy and sexuality) react to sexual stimuli as a consequence of the side-effects of (ongoing) treatment(s).

3. Life asymmetry in time- and self-management: breast cancer is a turning point in life demarcating of a life before and after, and in the ‘after life’ the inability to plan one’s own work (time management) or fun activities (self-management) deprives patients from experiences that make someone feel good about oneself.

4. Asymmetry in the experience in invulnerability: the difference between the reality of the sexual side effects of BCT and the expectations of these side effects based on the information about these sexual side effects by healthcare professionals undermines the sense of invulnerability or invincibility

5. Relational asymmetry: asymmetry between the partners in their relationship due to role confusion and role changes

We believe that it is important for healthcare professionals to be aware of the negative effects of breast cancer treatment on sexuality: to better inform patients who start treatment. If you, as a healthcare provider or as a patient, are aware of the negative effects of breast cancer therapy on sexual health, it may be easier to discuss alterations in sexuality during and after the treatment.

Keywords

breast cancer breast cancer treatment sexuality qualitative research quality of life

Introduction

A growing population of breast cancer survivors has been observed in Belgium. This population is expected to increase because of new diagnoses and an improved survival rate. In Belgium, more than 11,000 patients were diagnosed with breast cancer in 2022 as is seen in Cancer Fact Sheet 2022 of the Belgian Cancer Registry.¹ Breast cancer treatment is dependent on breast cancer subtype, stage, and patient characteristics. Most patients are currently treated with an individual multimodal therapy involving surgery with or without radiotherapy for local control, followed or preceded by systemic therapy (e.g., chemotherapy, endocrine therapy, immunotherapy, and targeted therapy).²

Although patients receive individually tailored treatment, breast cancer survivors share common experiences of confrontation with a life-threatening illness and with specific iatrogenic complications. Breast cancer treatment often causes sexual problems or may make preexisting sexual problems worse.^3
–10 Breast cancer survivors report differences in the experience of sexuality before and after breast cancer due to psychological, physiological, physical, and behavioral changes related to breast cancer diagnosis and treatment.¹¹ For instance, although many breast cancer survivors report extreme vaginal dryness resulting in painful coital sex, it has been shown that some (hetero)sexual patients continue to engage in painful coital sex to remain an “adequate woman” that can fulfill their partner’s sexual needs.^12,13

Sexual experiences of women occur in a personal relational context and might be affected by different changes during life, such as having children or natural menopause. A diagnosis of breast cancer adds to these changes, which do not only affect the patient but also their partner, their existing or future children, family, friends, and their professional life.^14,15 As a result, not only their personal attitudes to and coping with changes affect sexuality but also the attitudes and coping of the other affected persons influence the experience of sexuality after a breast cancer diagnosis and treatment.

Sexual side effects of breast cancer treatment often remain unnoticed and not discussed because patients and partners report barriers to discuss sexuality with healthcare professionals.^16,17 Nevertheless, if the sexual side effects of breast cancer treatment remain undiscussed, this may negatively impact a patient’s sexual well-being because sexuality and sexual health are important indicators of quality of life.^9,18
–22 Moreover, alterations in sexual functioning and/or in the experience of sexuality may impair a patient’s adherence to therapy.⁴ Therefore, it is important to discuss sexuality related issues with breast cancer patients and their partners, before, during, and after treatment.

Other qualitative analyses on sexuality after breast cancer therapy were conducted in other countries where —compared to Belgium — there are differences in the organization of the healthcare system and other cultural/socioeconomic conditions. These studies were also conducted before the availability of new treatments and improved survival rates.^7,9,23
–26 These studies found that breast cancer therapy may result in an altered sexual self-image. For many women, the breast is a body part that makes them feel sexually attractive because breasts are a part of their sexual identity and for many it is also an erogenous zone that is sensitive to sexual touch. After treatment, the sexual experience related to the breasts is changed due to differences in the (lack of) sensitivity in the breast region. Therefore, it is important to help patients and partners to renegotiate and rediscover sexuality and to discuss the need for a new sexual routine.

But as aforementioned, breast cancer treatment has improved in the last decades. Surgical options are improved and have less impact on a patient’s body image (e.g., breast-conserving procedures, oncoplastic procedures, and autologous reconstruction).^2,27,28 Today, radiotherapy is individually tailored to each patient²⁹ and various chemotherapy schemes and immune therapies are available. For hormone receptor-positive breast cancer, guidelines recommend prescribing endocrine therapy for 5–10 years to prevent breast cancer relapse.

Objectives

There is a need for new qualitative research regarding the sexual experiences after breast cancer treatment in an era in which patients seek to be better informed about the impact and may be longer exposed to the negative sexual side effects of breast cancer treatment.^19,21,22,30 We use a qualitative research method with thematic analysis to explore factors that contribute to changes in sexual functioning and sexual well-being after breast cancer diagnosis and treatment in otherwise healthy patients.

Design

This narrative qualitative study using thematic analysis explored factors that are associated with changes in the experience of sexuality during and after breast cancer treatment in patients without severe comorbidities. We used a mixed methods approach as this study combines narrative interviews with an online survey with validated and unvalidated questionnaires. This article is reporting only on the qualitative component.

Methods

Study participants were recruited via different ways: (1) at the consultation site of the University Hospitals Leuven (UZL)—by distributing posters and leaflets promoting the study, (2) via notification on the website of Think Pink Belgium (https://www.think-pink.be)—a nonprofit organization that supports survivors, and (3) through word-of-mouth. Inclusion and exclusion criteria are presented in Table 1.

Table 1.

Inclusion and exclusion criteria.

Inclusion criteria	Exclusion criteria
Dutch as primary language Non-metastatic breast cancer <5 years prior to selection >18 years of age Sexual identification as hetero-, homo-, or bisexual No severe comorbidities	Comorbidities: multiple sclerosis, brain injury, Parkinson’s disease, spinal cord injury, amputation, second primary malignancy, most psychiatric diseases treated with medication, chronic pain, severe arthritis, and abuse of/dependence on drugs Medications: insulin, biologicals for arthritis, SSRIs, antipsychotic medication, antiepileptic medication, cholinesterase-inhibitors, and medication against ADHD and Alzheimer’s disease

Inclusion criteria

Exclusion criteria

Dutch as primary language
Non-metastatic breast cancer <5 years prior to selection
>18 years of age
Sexual identification as hetero-, homo-, or bisexual
No severe comorbidities

Comorbidities: multiple sclerosis, brain injury, Parkinson’s disease, spinal cord injury, amputation, second primary malignancy, most psychiatric diseases treated with medication, chronic pain, severe arthritis, and abuse of/dependence on drugs
Medications: insulin, biologicals for arthritis, SSRIs, antipsychotic medication, antiepileptic medication, cholinesterase-inhibitors, and medication against ADHD and Alzheimer’s disease

SSRI: selective serotonin receptor inhibitor; ADHD: attention deficit hyperactivity disorder.

When a possible participant indicated an interest in participating in this study, she was contacted on the consultation site of UZL or via telephone and if eligible was purposively selected. The participant was informed about the goals of the investigation. When a participant was eligible according to the inclusion and exclusion criteria, we discussed an informed consent. There was time to consider participation in this study, and if someone was willing to participate, a written informed consent was obtained before participation.

Between August 2021 and November 2023, individual interviews and two focus groups were organized. During the interviews and the first focus group, we used semi-structured interview questions (Supplemental Material 1) that covered sexuality/intimacy, breast cancer history and treatment, partnership, side effects of treatment, and information regarding these side effects, contributing factors that concern the relationship. These questions were inspired by a conceptual framework on the link between illness and sexuality and on the sexual response cycle by as described by Masters and Johnson.^11,31 The developmental process of the interview guide was based on an analysis of the literature on the impact of breast cancer on sexuality combined with our clinical experience with breast cancer patients, and further fine-tuned based on discussions with patients in the clinic.

We aimed to include 15 participants, but realized that due to the sensitive nature of the topic, we were dependent on the target group’s willingness to participate. During the recruitment period, 32 patients showed interest to participate, 26 were eligible after screening, of which 25 women participated in this study. Data saturation was reached after conducting 14 individual interviews, which were followed by to extra interviews to confirm that no new information came up. Hereafter, we started to recruit participants for focus groups specifically.

We began to include participants for focus groups specifically. Nine women participated in a focus group, among them one participant who also participated in an individual interview (see Figure 1). The inclusion of this one participant in an interview in a focus group was not to share her story again with others, but was based on her request to be able to connect with others and hope to recognize herself in the group’s experiences. We believe that, due to her interest in the topic, her willingness to listen to others and her personal openness to share her experiences, her participation in both an individual interview and a focus group did not affect or skew the results.

Figure 1.

Process of inclusion in this study.

One week prior to the interviews, participants completed an online survey that included validated and unvalidated questionnaires; in this way, we gained an impression on the demographics of this group and their sexual well-being, sexual functioning, and general- and relational well-being. Information regarding these details and socioeconomic background, surgical, and current medical treatment of our study group were collected using a questionnaire developed by the first author. Sexual function and sexual well-being were measured using the Female Sexual Function Index³² and the Female Sexual Distress Scale-Revised,³² well-being was assessed using the World Health Organization–Five Well-Being Index,³³ and relational well-being was measured using the Dyadic Adjustment Scale.³⁴ In Supplemental Material 2, you may find a supplement of the questionnaire(s) used in this study.

Participants were allowed to choose the location of their interviews: a conference room in the hospital, at the participant’s home, or online via Teams. A participant was informed who was going to interview her. The investigators that conducted the interviews had no prior relationship with the participants. Four interviews were conducted by PE (male interviewer, certified marital, and sex therapist) together with NW (female, gynecologist) for training purposes and to evaluate the usability of the interview guide. During these interviews, we tested the semi-structured interview guide and found that no additional questions were needed. After the training interviews which were also seen as a test-phase for this study, all other interviews were one-on-one with the main researcher (NW). Interviews lasted typically between 90 and 120 min. Field notes were made during these interviews. The participants’ responses were guiding for the next interview questions. Additional questions were asked to improve and guide the interview: for example: “Can you further explain that?” and “Were you prepared for that?” No repeat interviews were conducted.

We analyzed the individual interviews and decided to organize the first focus group. During the recruitment of participants, participants were able to choose whether they wanted to participate in interviews or in a focus group discussion. The participants who participated in the focus groups were those who expressed willingness to participate in a focus group. For this focus group, we used the same semi-structured questions as during the individual interviews. This focus group (N = 4) was conducted at the hospital by PE and NW and lasted 120 min. We then analyzed the transcript of this focus group and found that no new original themes originated. As such, we organized the second focus group (N = 6) as an alternative kind of member check. Although normally a member check is organized with participants who already participated in a study, we choose to include new participants to check whether they found their experiences reflected in the outcomes of our analysis. All these “new” participants had previous experience with discussing sexuality-related issues in group in the context of clinical care. This patient validation strategy was organized to discuss various aspects of our research data, and the participants could help us to verify the accuracy of our research outcomes.³⁵ This focus group was conducted by PE and NW online via Teams and lasted 135 min.

All interviews and focus groups were recorded using an audio recorder.

Data analysis

All data was analyzed thematically.³⁶ After each interview, a verbatim transcript was generated by the first author (NW) and checked by another author to improve-, or correct the transcript if necessary. Analysis began after the fourth interview, when two researchers (PE and NW) read the these manuscripts and coded these manuscripts independently and created a first set of open labels. These labels were discussed with the other researchers (PN and SH). After all individual interviews and the focus group were conducted, new codes were added. We organized these codes in Excel. Then NW and SH used axial coding to identify overarching themes. To ensure this study’s rigor these themes were agreed on by all researchers. The main themes were presented during focus group 2. The focus of this discussion was not only to find agreement with these themes but also to find paradoxes or disagreement in these themes.

The reporting of this study conforms to the COREQ statement.³⁷

Ethical considerations

This study was approved by the Ethical Committee of University Hospitals Leuven (number S65315).

Results

Composition and current sexual well-being of the research participants

Our research group consisted of 25 women with a history of breast cancer. All participants were in a relationship with a mean duration of 18 years (range: 1–47 years), 24 had a heterosexual relationship and were married or living together, and one was not living together with her partner. The mean age of the participants was 44 years (range: 27–70 years). All participants underwent a surgical treatment: 12 had breast-conserving surgery, and 13 had unilateral or bilateral mastectomy, of which 4 also had autologous reconstructive surgery. Most participants (20/25) were premenopausal before breast cancer treatment. At the time of the interview, the majority of participants reported intermediate or poor general well-being and appeared to be in distress-free and good partner relationships. Almost all participants struggled with sexual function, all participants met the criteria for hypoactive sexual desire disorder.

Qualitative analysis

Thematic analysis resulted in the identification of one high-level theme, that is, asymmetry. Asymmetry refers to a “lack or absence of balanced proportions between parts of a thing” (National Cancer Institute, s.d.).³⁸ Participants shared that the diagnosis of breast cancer confronted them with a sudden shift in their life; a shift that marked a turning point with a life before and after this diagnosis; a life that differs from their life before breast cancer and that was characterized with different experiences of asymmetry in different domains of their life.

Asymmetry was experienced in five different areas: (1) physical asymmetry, (2) asymmetry in sexual scripts (or sexual routine), (3) asymmetry in time—and self-management, (4) asymmetry in the anticipation of- and reality of the sexual side effects, and (5) asymmetry in the partner relationship.

Because of the diagnosis itself, the impact of breast cancer treatment, and the physical alterations that remained after breast cancer treatment, the participants stated that their sex lives were never the same. “Uhm. . . you have a life before breast cancer and a life after breast cancer, and that life before breast cancer will NEVER come back. You have to learn to deal with that” [Participant 14, 47 years].

Physical asymmetry: changes in the breast region after surgery and radiotherapy

This kind of asymmetry is literally and physically visible when patients undergo breast surgery with or without radiotherapy. A physical asymmetry in the breast region is created and visible in, for example, breast volume or experienced in difference in temperature or sensory sensation.

“In the beginning, I was very aware that people could see that [asymmetry]. . .” “At first, I couldn’t touch that scar myself. It made me physically uncomfortable because it was numb. It’s just like touching a dead body.” [Participant 1, after mastectomy, 42 years]

“I do find it strange, though, that so many months now after radiation, that breast is still much warmer than the other. I do find that strange. Yes, you are always reminded of it.” [Participant 8, after breast conserving surgery, 33 years]

Although most patients testified being unaware of the asymmetry as long as it was covered (e.g., underneath clothes or when using a breast prosthesis or adapted lingerie), they were worried that their asymmetry was potentially visible to others. Therefore, they pursued to regain symmetry in their chest region. For some participants, this physical asymmetry of the breasts was a barrier to enjoy sexuality given their avoidance of the breast region. Some participants shared that their partner was not allowed to see or touch their breasts or chest region.

“I had, I really never showed cleavage. but I didn’t want my prostethic to come peeping above my blouse or something, I thought, I really don’t want that. . . .” [Participant 11, after mastectomy, 46 years]

Sexual asymmetry: differences in how the body and mind react to sexual stimuli

After completing surgical or systemic treatment with chemotherapy, some participants felt comfortable enough to reinitiate sexual activity. During this reinitiating, participants reported to start experiencing sexual dysfunction, such as a lack of sexual desire, severe vaginal dryness and/or dyspareunia, and a lack of vaginal response during arousal. These sexual experiences were completely different compared with those before breast cancer. Due to these altered sexual experiences, some participants shared that they needed to adapt to a new sexual routine (e.g., the use of lubricants and moisturizers) to prevent dyspareunia.

“You then fumble with lubricant and put a towel on the bed, so much lubricant, your sheets get dirty and smeared, then it is no longer romantic, not real sex, not without worries. . .” [Participant 4, 46 years]

Although some patients took necessary measures—with and without advice of a healthcare professional—to prevent dyspareunia, they still experienced superficial and deep dyspareunia.

“But if it. . . hurts and it bleeds. . . yes then. . . then. . . then. . . I don’t think even my gynecologist would continue.” [Participant 14, 47 years]

Given the lack of desire, the need for lubricants, and the presence of dyspareunia, sexuality, and sexual intercourse had to be planned and prepared, which for most participants was still perceived as less enjoyable sex.

“But yes, really just sex like before, just brash. That is no longer there and I think that is a great pity.” [Participant 13, 28 years]

Participants wanted to follow a sexual routine similar to that before breast cancer (e.g., with vaginal penetration) to have the same sexual experience, for themselves as well and for their partners.

“He didn’t expect that from me, but I wanted to give it to him because I think it’s important myself.” [Participant 8, 33 years]

Life asymmetry: asymmetry in the naturalness of life

Before breast cancer, our participants experienced that they had a well-balanced distribution of time (i.e., being able to make one’s own planning), tasks (i.e., having the capacity to perform various daily activities), and focus (i.e., being able to concentrate on certain tasks). During and after treatment, this distribution of time, tasks, and focus is different, which created an experience of asymmetry on a nonphysical level. During the well-balanced distribution of time, task, and focus, the desire for intimacy and sexuality arose during the day and was fueled by pleasant experiences as a person, a partner or a professional. One participant mentioned:

“Before breast cancer, . . . I really liked to have sex and it all went very well and there was nothing to worry about; sexuality was something that was ‘just there.’” [Participant 3, 47 years].

During treatment, most participants were unable to work, and most daily experiences were breast cancer-related and strictly planned by healthcare professionals. Participants were asked to set aside their own activities and were scheduled for examinations and appointments, depriving patients of their own experiences and self-determination.

“You have to go there, and there, and there and you have no control over your own day and you don’t know what’s going to happen.” [Participant 13, 28 years]

Although this asymmetry in self- and time management provided patients insight into the “breast cancer situation,” some participants shared that the demanding schedule of investigations and treatment resulted in a loss of sexual desire and in feeling less attractive. By being unable to participate in their “life before breast cancer,” “fun” experiences, which sometimes improved self-esteem and provided a basis for sexuality, were taken away for some participants.

“it’s also the contact with people, getting outside, experiencing something. These are also all things that make you want to enjoy life, to enjoy everything.” [Participant 1, 42 years]

“My life is on hold.” [Participant 6, 35 years]

Younger participants had to make sudden and unforeseen decisions regarding future fertility. A decision they had to make under time pressure before ovariotoxic treatment can start, this turned their lives upside down. First, because they had never before thought they would have to use fertility treatments, and second, because they never expected to have to do so in the short term.

“You need to have eggs harvested.” [Participant 12, 42 years]

The patients felt pressure that the preventive fertility treatment had to succeed. Younger patients who underwent onco-fertility treatment sometimes experienced seeing their friends having children. This created a duality—or asymmetry—in emotion: they were happy for their friends but also sad to realize that children might not happen in their own future life.

[during a soccergame] “They were all standing there—with two newborn babies and an one year old child, some mother to be with their babybumps—and they were talking about babies all the time. . . . I really had to go to the other side of the field. And after the game I had to tell them that is was difficult to hear the babytalk. I find that something very difficult.” [Participant 8, 33 years]

Asymmetry was also experienced in the ability to execute certain tasks: patients who received chemotherapy experienced fatigue and nausea during this therapy, and as a result certain tasks (e.g., household and self-care tasks) could not be performed at the same rhythm or with the same concentration (loss of focus) as before the breast cancer diagnosis.

“My children couldn’t stay at home the first few days after chemotherapy; I couldn’t take care of them.” [Participant 6, 35 years]

Breast cancer also created new tasks that were automatically taken over by a partner or a family member.

“I never really had to ask him ‘Would you like to help me with this or with that or with this?’ He just did it.” [Participant 1, 42 years]

Given a new balance in tasks, participants felt less able to perform all tasks in the same way they did before diagnosis. Some felt they were not meeting the expectations they had for themselves before diagnosis. This feeling of not meeting their own expectations led to a feeling that they were also unworthy of sexuality.

Asymmetry in the experience in invulnerability

Although some participants were informed about the potential negative side effects of treatment on sexuality, most participants reported initially to deny or to not focus on the potential sexual impact. Surviving breast cancer seemed more important than worrying about its possible sexual side effects. If no previous sexual problems existed, participants and their partner could not imagine any sexual impact.

“We laughed it off at that moment; it probably won’t be like that for us. . .” [Participant 8, 33 years]

The sexual side effects were incomprehensible to patients, and they often underestimated these effects.

“How do you know what to expect if you’ve never felt it before?.” [Participant 6, 35 years]

Most information provided by healthcare professionals was focused on prescribed allowed sexual behavior rather than genuine conversations regarding sexuality. Participating in this type of conversation can change the behavior of a partner and the sexual script of a couple:

“We fumbled with condoms for the first few weeks, because he had to watch out for infections. Guys, those condoms. . .” [Participant 17, 36 years]

The anticipation of the changes in sexual well-being and the reality of the sexual side effects of treatment was reported as an asymmetric experience given the underestimation of the sexual side effects by participants.

Relational asymmetry

After the breast cancer diagnosis, participants experienced a shock and the attendance of their—also shocked—partner was helpful to better understand this “breast cancer situation.” The shock resulted in an increased need for intimacy, which was consolatory for both partners. Although the need for intimacy grew, it rarely led to sexual intercourse; sexual desire simply disappeared upon diagnosis of breast cancer.

“I had absolutely no desire for sex at that moment. Not at all. My head wasn’t in it either. But I experienced a very. . . deep. . . bond of intimacy there.” [Participant 10, 63]

When the participants looked back at this moment, they realized that they then unconsciously said goodbye to and started to mourn about the sexual life they knew before the breast cancer.

Breast cancer related tasks for the partner were also created (e.g., nursing a scar, driving to the hospital, caring for a sick partner), creating an asymmetry in responsibilities and sometimes a dependence on the partner that could also affect sexuality.

Although some participants experiences dyspareunia due to vaginal dryness, they were nevertheless willing to “offer” their healthy partner “real sex” with which they referred to vaginal penetration.

“I didn’t do it for myself anymore, I did it more for him. Because usually, I didn’t enjoy it at that moment either.” [Participant 8, 33 years]

Some participants realized that their partners were still healthy and thought that their desire for vaginal penetration remained unchanged.

“You are still a healthy man. . . it is totally understandable, that you do want to [have penetrative sex] again. . .” [Participant 2, 51 years]

Discussion

This study shows that breast cancer survivors report important changes in their sexual functioning and in their sexual experiences resulting in poor sexual well-being after breast cancer therapy; they referred to these changes as an experience of asymmetry.

Previous research on the association between breast cancer and sexuality primarily focused on the physical impact on sexuality. There are studies that showed the impact of breast cancer surgery on an altered body-image including its effects on sexual well-being.^{6,26,39
–45} This altered body-image is due to scarring, differences in sensitivity, and changes in skin temperature; in this study labeled as a physical asymmetry. Other studies demonstrated the occurrence of vaginal dryness and dyspareunia.^{4,40,45
–55} These studies show that more than 50% of breast cancer patients suffer the consequences of vaginal atrophy; in this study labeled as an asymmetry in sexual well-being due to vaginal dryness and/or dyspareunia.^{6,26,37
–43} Our study provides additional insights into the overall experience of sexuality after breast cancer on a broader level than the physical changes (i.e., scarring and vaginal alterations) that occur: our participants experienced that sexual spontaneity was lost due to physical discomfort caused by therapy-related side effects. However, this spontaneity was already lost due to the strict scheduling of and incapacity to plan of have an impact on their treatment. The strict scheduling of investigations and treatment resulted in a feeling of loss of autonomy and loss of self-determination, causing other experiences to be missed, an asymmetry in self- and time management. Because of these missed experiences, breast cancer survivors felt even less attractive and felt they had less to offer sexually to their partners.

Our participants experienced that when sexuality was discussed by healthcare professionals, the focus is often on physical discomfort and less on the overall impact of this diagnosis on their sexuality. In the individual interviews, we learned that when sexuality is discussed with a healthcare professional, the focus of this conversation is on physical discomfort (vaginal dryness), and this conversation was mostly initiated by the participant, who already experienced vaginal discomfort several years after initial treatment. Participants shared to discuss the impact on body image with their partner or their friends, but not with a healthcare professional. Recently, the Flemish Cancer Foundation “Kom op tegen Kanker” (Stand up against cancer) published a research report highlighting the unmet needs of patients regarding sexuality: 73% of the group shared they were not informed about sexual sequelae but would have appreciated such a conversation.³⁰ Research shows that only a minority of (breast) cancer patients reported being sufficiently informed about the impact of their (breast) cancer treatment on sexuality.^{5,20
–22,56,57} Our participants did not experience physical discomfort during sexual activity before diagnosis, the counseling provided regarding sexuality was insufficient to inform patients about the actual sexual impact of diagnosis and therapy. The current study highlights the importance to not only inform patients and their partners on the physical side effects of treatment but also on the general impact on their lives, here, summarized in the metaphor of “asymmetry.”

The results of this study describe important factors that are associated with changes in intimacy and sexuality and may facilitate to comprehensively inform future patients regarding the risk factors that may lead to a decreased sexual well-being. For example, healthcare professionals might pay extra attention to discuss family planning, professional activities, and the distribution of tasks within a family (and how this might impact the patient and the partner). Patients prefer to discuss sexuality with a specialist nurse, and this information would be supported with a leaflet or website.^21,22 Possible strategies to inform patients regarding the sexual side effects could be organizing information groups, or to plan fixed moments to discuss this topic during treatment and follow-up appointments.^58,59 It is important to lower the barriers to discuss sexuality by handing out leaflets that inform about the sexual side effects of their therapy when it starts, also by putting leaflets in the waiting room and consultation room, which are indications that the topic is important and can be discussed.

Limitation

There are some limitations of this study: although the recruitment of participants for individual interviews went easily, finding participants for focus groups was difficult. We believe this was because taboos about discussing sexuality may generally persist as sexuality remains an intimate topic to discuss with other people you do not know. The study participants may have been more at ease than the general patient population about discussing sexuality, which may influence study results. Notably, most participants experienced problems in the area of sexuality; as a result, the patients may have felt the need to discuss these issues in an interview. Maybe women who experience fewer symptoms following treatment are less likely to testify about these. Therefore, some selection bias may have occurred. The results in this study may not be applicable to singles, sexual and gender minorities as this group was not represented in this study. Data are generated in retrospect, there may be a memory bias due to the traumatic experience of breast cancer diagnosis and treatment. Also, breast cancer patients are as diverse as the treatment they receive, this treatment may also change over time—so do their sexual experiences.

Most of the participants reported that sexual discomfort and changes in sexual routine affected their partners. However, given the study design, the partners’ views could not be considered. The partner’s view may be an interesting avenue for future research. Because the impact of breast cancer treatment on sexuality may be different for men with breast cancer, we are working to expand this study and include male breast cancer patients.

Conclusion

This qualitative analysis identifies contributing factors that change sexual functioning and sexual well-being before and after the diagnosis of breast cancer compared to sexual experiences before the diagnosis and treatment of non-metastatic breast cancer. Patients described their experience in terms of asymmetry, which has an impact on one’s personal life, sexual functioning, sexual well-being, and partner relationship.

These results suggest that it is important that newly diagnosed breast cancer patients and their partners should be correctly informed about these possible changes in sexuality, which means not only discussing the physical side effects of a proposed treatment that may impair sexuality but also the impact of treatment on other important domains of their personal life. Moreover, this information must be repeated during different treatment stages because a patient is unable to fully understand this information when it is mentioned only before the start of therapy. Given the remaining barriers to discussing sexuality with a healthcare professional, attention should be paid to include sexual health during and after breast cancer treatment in routine care. Healthcare professionals should be able to refer a patient within a multidisciplinary team to discuss these issues.

Future research must focus on identifying those patients who have many contributing factors that negatively change sexuality after treatment. Since vaginal atrophy is a contributing factor that alters the sexual routine, we must also think about preventive options that can decelerate vaginal atrophy that is caused by breast cancer treatment. Importantly, various healthcare providers must be involved in informing new breast cancer patients about sexuality. Information should be offered to all breast cancer patients and partners and individually tailored to each patient’s life and context.

Supplemental Material

sj-docx-1-whe-10.1177_17455057241310271 – Supplemental material for Sexuality after breast cancer treatment: An experience of asymmetry

Supplemental material, sj-docx-1-whe-10.1177_17455057241310271 for Sexuality after breast cancer treatment: An experience of asymmetry by Nynke Willers, Paul Enzlin, Patrick Neven and Sileny N Han in Women’s Health

Supplemental Material

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Footnotes

Acknowledgements

None.

Declarations

ORCID iDs

Nynke Willers

Paul Enzlin

Supplemental material

Supplemental material for this article is available online.

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