Sexual Concerns of Women Diagnosed With Breast Cancer-Related Lymphedema

Caleb J. Winch1, Kerry A. Sherman2, Louise A. Koelmeyer1,

Katriona M. Smith1, Helen Mackie1,3, John Boyages1

1Macquarie University Cancer Institute, Australian School of Advanced Medicine, Macquarie

University, New South Wales, 2109, Australia

2Centre for Emotional Health, Department of Psychology, Macquarie University, New South

Wales, 2109, Australia

3Mount Wilga Private Hospital, 66 Rosamond Street, Hornsby, New South Wales, 2077,

Australia

Corresponding author: A/Prof Kerry Sherman, PhD, Centre for Emotional Health,

Department of Psychology, Macquarie University NSW 2109 Australia. P: +61 (2) 9850

6874, F: +61 (2) 9850 8062, E: Kerry.Sherman@mq.edu.au

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The final publication is available at Springer via http://dx.doi.org/10.1007/s00520-015-2709-6

Abstract

Purpose: Lymphedema is a common side effect of breast cancer treatment that may

negatively impact on a woman’s physical and psychological wellbeing. This study aimed to

understand the impact of breast cancer-related lymphedema on women's sexual functioning,

and to identify key concerns of these women regarding sexual issues.

Methods: Purposive sampling recruited 17 women aged 38-67 years with mild to severe

lymphedema. Telephone interviews concerning sexual issues were transcribed verbatim and

thematic analysis undertaken.

Results: Women perceived sexual concerns arising from lymphedema to exacerbate concerns

arising from breast cancer. Four interrelated factors determined the extent of lymphedema’s

sexual impact: a) swelling severity and location, b) needing to wear a compression garment,

c) body image concerns raised by lymphedema and breast cancer treatment, and d) their

sexual partner's acceptance and supportiveness. In particular, a supportive partner was

instrumental in assisting women to overcome sexual issues caused by severe swelling and/or

body image concerns. Few women reported being asked about sexual issues by any health

professional, and most women indicated that they were unwilling to discuss sexual concerns

with health professionals, friends or family.

Conclusions: Lymphedema had the potential to accentuate sexual issues caused by breast

cancer, but most women were reluctant to discuss issues with anyone other than their partner.

These findings are relevant to health professionals designing breast cancer psychosexual

interventions and future research addressing lymphedema-specific sexual concerns.

Keywords: Lymphedema; sexual function; sexuality; oncology nursing; body image; chronic

illness

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Introduction

Breast cancer-related lymphedema affects 17-21% of women following breast cancer [1],

occurring when lymphatic fluid accumulates in the affected limb or trunk area [2]. The

underlying pathology is poorly understood, but lymphedema is strongly associated with

damage to lymph nodes or vessels during cancer diagnosis (e.g. sentinel lymph node biopsy)

or treatment (e.g. axillary dissection and/or radiation) [2]. Because lymphedema may lead to

chronic, progressive, and incurable swelling in affected areas, it is a feared complication

following breast cancer diagnosis [3,4]. Lymphedema negatively impacts physical and

psychological function of affected individuals, who frequently report impaired quality of life

and lymphedema-related psychological distress [5,6]. However, although breast cancer is

recognized to raise significant sexual issues [7-14], the contribution of lymphedema has

attracted little research.

The sexual impact of breast cancer itself has been reviewed repeatedly [7-13]. Physical

problems associated directly with intercourse (e.g. pain during intercourse, decreased arousal,

inability to orgasm, etc.) are linked with chemotherapy-induced menopause and aromatase

inhibitors [7,8], but not with radiotherapy or more extensive surgery [7,9]. However, breast

cancer also entails challenges to emotions and body image, raising sexual concerns [7,8,15].

Loss of a breast, hair loss, and medicine-induced weight gain/loss are associated with body

image disturbance, feelings of unattractiveness, and loss of femininity [7,8,11,12]. Feelings

of unattractiveness in particular are longitudinally associated with reduced sexual satisfaction

[7]. Therefore, challenging emotions and body image disturbance must be studied alongside

physical problems to understand breast cancer’s impact on sexual concerns [7,8,10-12].

It is plausible that breast cancer-related lymphedema independently contributes to sexual

concerns. Upper-limb lymphedema is commonly painful, associated with symptoms of

aching, heaviness, and reduced arm function [1,16], which may physically compromise

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sexual enjoyment. Lymphedema can result in an enlarged, heavy arm which is likely to

negatively impact on a woman’s self-image. Even controlled swelling may require women to

wear a visually obvious compression garment. Thus, while women report sexual concerns

due to mastectomy/scarring following breast cancer treatment [7-12,14], women with

lymphedema may experience additional emotional and body image concerns related to the

appearance of their arm.

One study has specifically examined sexual concerns due to breast cancer-related

lymphedema, suggesting the potential for considerable negative impact in emotional/body

image domains. Interviews with 11 women indicated two impacts, “feeling unsexy” because

of the swollen arm, and “being embarrassed” about having to accommodate the arm during

sex [17]. However, as this study predominantly sampled women over age 60, research is

needed to determine whether younger women have similar concerns. One quantitative study

examining breast cancer-related sexual function also reported negative impacts of

lymphedema on sexual interest at 3-, 6-, and 12-months post-surgery [18]. However, the

diagnostic criteria for lymphedema were overly inclusive (a difference of 1cm diameter

between limbs at any one of several specified distances from the elbow). This potentially led

to overestimation of lymphedema diagnoses and, consequently, biased underestimates of

lymphedema impact. In contrast, another quantitative study of women diagnosed with breast

cancer found no evidence for negative impacts of lymphedema on sexual concerns (desire,

vaginal dryness, avoiding intimacy) [19]. However, no lymphedema diagnostic criteria were

reported, nor were demographic and treatment variables controlled statistically, so this result

may reflect methodological limitations. Moreover, no study has examined whether sexual

concerns result from lymphedema per se, or in combination with breast cancer impacts.

This study aimed to understand the sexual concerns experienced by women with breast

cancer-related lymphedema. Whether women had discussed these concerns with health

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professionals, family members or friends was also explored. A qualitative one-to-one

interview method was deemed most appropriate, given the limited existing research,

sensitivity of the topic, and lack of lymphedema-specific sexual assessment tools [20].

Materials and Methods

Recruitment

Women were eligible to participate if diagnosed by a doctor or lymphedema therapist

with breast cancer-related lymphedema according to International Society of Lymphology

guidelines [21]. Further requirements were: 1) persistent swelling, or continuing active

treatment required to control swelling (e.g. compression garment); 2) ≥12 months post-

completion of radiotherapy and/or chemotherapy; 3) had no surgical treatment for

lymphedema (e.g. liposuction); and, 4) ≥18 years old. To minimize selection bias, the study

invitation and consent form explicitly welcomed women of all ages to participate, whether

currently single or in a relationship, and whether or not lymphedema affected them sexually.

Additionally, purposive sampling ensured a range of ages were represented. Macquarie

University Human Research Ethics Committee approved the research.

Recruitment (August 2013 to July 2014) occurred in Sydney, Australia at a private

hospital lymphedema rehabilitation department, a surgical clinic for lymphedema, an

occupational therapist’s lymphedema practice, and a physiotherapy clinic. Staff provided

potential participants with an invitation package during consults or by mail. Interested

women posted demographic details and a consent form to the research team. No incentive

was offered to participate.

Participants and Procedure

As part of qualitative research into lymphedema-related sexual concerns in women

with breast cancer, gynecological cancer, and primary lymphedema, approximately 120

invitation packages were distributed to clinicians. Completed consent forms and demographic

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details were received from 39 women, 19 having breast cancer-related lymphedema; two

were subsequently excluded, due to inability to be contacted and a breast cancer recurrence

before interview. Demographics for the remaining 17 women interviewed are presented in

Table 1 (35% of the sample were aged under 60).

Telephone (n = 17) or face-to-face interviews at Macquarie University (n = 1) were

conducted at the participant’s convenience by one of two women trained by the research

team. Interviews lasting approximately 30 minutes were audio-recorded and transcribed

verbatim for analysis.

Measures

The demographic survey documented age, marital status, menopausal status,

lymphedema history (date of diagnosis, location, side affected), cancer history (date of cancer

diagnosis, date and type of surgery, date finished chemotherapy/radiotherapy, type and

duration hormonal therapy, and an open-ended item regarding other cancer diagnoses), and

lymphedema treatment characteristics (type, class, and frequency of compression garment

use, other lymphedema treatments [skin care, exercises, laser therapy, lymphatic drainage,

bandaging, other]). One item assessed perceived lymphedema severity: “Overall, how severe

has your lymphedema been in the last month?”, rated on a 4-point scale (“no problem”,

“mild”, “moderate”, “severe”).

Interview Schedule

Interviews were conducted using an open-ended semi-structured protocol. Participants

were first asked to describe their cancer and lymphedema history. Subsequent questions

concerned sexual topics. Women were asked, “How would you rate your sexual relationship

and intimacy before cancer compared to now?” and “What extra effect has lymphedema had

on the intimate and sexual part of your life?” and allowed to direct the conversation. Where

conversation lapsed, the interviewer prompted the following topics (sub-prompts in brackets):

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1. “Do you have physical symptoms that affect being intimate?” (Such as pain or

heaviness? Do they distract you from intimacy? Do they lower your libido?)

2. “Does your lymphedema make you feel embarrassed when you are being intimate or

sexual?” (Have you discussed these feelings with your partner? What was your

partner’s reaction? Do you avoid intimate situations because of these feelings?)

3. “Does your compression garment get in the way when you are being intimate?” (Do

you take the garment off at social events; or when meeting new partners?)

4. “Have you made changes to maintain your intimacy and sexual relationship?” (If

comfortable, give some examples).

5. “Have you spoken to anyone about problems with intimacy or sexual relationships?”

(Such as your partner? Why do you think this is so, or not so? What about friends,

family, lymphedema support networks, health professionals [if so, whom], or a

psychologist/counsellor?)

6. Single women were asked, “Do you think lymphedema affected you in finding a

partner?” (How has lymphedema affected your ability to form new romantic or sexual

relationships?).

7. The interview concluded with “Is there anything you would like to say about these

topics that I have not already asked about?”

Data Analysis

The study aims called for a broad and rich investigation of sexual issues, features

which are strengths of thematic analyses [22]. Therefore, thematic analysis following the six

phase instructions outlined in Braun and Clark [22] was conducted, with specific reference to

their 15-point checklist for good thematic analysis. The research team adopted an

essentialist/realist epistemology [22], developing themes focused on the experiences and

reality of participants. The research team acknowledges that all qualitative research reflects

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researcher-driven interpretation [22], and therefore explicitly viewed thematic analysis as an

active method of abstracting patterns across participants, establishing reliability and validity

of themes, and the relationships between themes, through consensus coding and constant

comparison with the underlying interview data [23].

NVivo 10 was used to link verbatim text extracts from the interviews to themes. Two

reviewers (CW, KMS) independently coded data, with differences resolved through

consensus and discussion with a senior researcher (KAS). The themes are narrated in text

with parentheses (table number [.] quote number) indexing supporting quotes represented in

conceptually clustered matrices (Tables 2-4).

Results

Characteristics of interviewed women are summarized in Table 1. Most were in

longstanding marriages (82%), average length 30 years (range, 5-46). Compression garment

use was frequent (88%). Most women reported some current sexual concerns: four were not

currently sexually active, two due to lack of libido and two due to relationship breakdown.

Six were currently sexually active, but experiencing concerns related to libido and body

image. The remaining seven women reported no sexual concerns. These included two

widowed women uninterested in a sexual relationship but retained for analysis because

aspects of sexuality extend beyond intercourse to issues such as body image [7-12,14]. The

other five were included to gain comparative insight into potential protective factors.

Sexual Impact of Breast Cancer

Breast cancer was responsible for ongoing sexual concerns (Table 2). These were

related to the impact of chemotherapy and hormone therapy on libido (2.1), loss of breast(s)

(2.2-3), and body image and beauty concerns due to surgical scarring (2.4-5). Given the focus

on lymphedema in the present study, care was taken to understand whether the women

perceived separable effects of breast cancer and lymphedema on sexual concerns. When

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asked, women presented one of two equally frequent views: that sexual concerns were

attributable to breast cancer alone (2.6-7), or that lymphedema compounded concerns

attributable to breast cancer (2.8).

Lymphedema Severity and Location

Women identified the severity and location of lymphedema as potential determinants

of sexual concerns (Table 3). The most significant disruption was described by a woman

whose dominant hand lymphedema prevented her from masturbating or manually stimulating

her husband (3.1). Less disruptive impairments were described by several others, including

restricted movement and painful lymphedematous areas such as the arm or trunk (3.2, 3.11).

However, this theme most commonly arose in interviews with women who, while

acknowledging that their lymphedema was currently too mild to cause problems, felt that

sexual consequences might arise if lymphedema worsened (3.3-4). One woman’s experience

pertained to this situation: she had entered a relationship with unilateral mild lymphedema,

and believed she would have been too embarrassed to embark on a new relationship with her

current severe bilateral lymphedema (3.5). Overall, then, some women described substantial

severity-related disruption, and many viewed lymphedema as a threat to sexual concerns.

Compression Garment

Women described the potential for a compression garment to interfere with sexual

enjoyment irrespective of lymphedema severity (Table 3). One woman found that the

garment acted as an impediment to sexual spontaneity because it had to be removed (3.6).

Another described the garment’s texture as forming an unpleasant barrier if not removed

(3.7). Most commonly, though, the compression garment was a focus of self-consciousness

about body image (3.8-10) because it marked women publicly as having lymphedema, even if

their swelling was not noticeable without the garment, consequently drawing body image-

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defeating comments from strangers (3.13). This final sub-theme overlapped substantially with

the general body image and beauty theme.

Body Image and Beauty

Body image and beauty concerns were prevalent in the interviews (Table 3),

manifesting in one or more sub-themes for each woman. First, numerous women held a

personal sense of feeling ugly, especially in relation to how severe lymphedema could look

lumpy or like body fat (3.11-3.12). They described this in the context of sexual or revealing

situations such as wearing lingerie, a swimsuit, and/or during sex. Most of these women also

described negative body image due to their mastectomy/scarring (2.4-5).

Second, and more commonly in this sample, women described negative social

reactions which implied a loss of social status as beautiful. Several described how

lymphedema was mistaken by the general public as being fat, such as one woman who was

asked whether her compression garment was to hold her fat in (3.13). Others described being

treated as injured/disabled, especially in reaction to the garment (3.14-15). These women

perceived there was no public awareness about lymphedema, leading to the body image-

defeating comments from strangers. While some were outspoken in rejecting such judgment

(3.15), many described feeling self-conscious about their lymphedema in public. This gave

rise to the third sub-theme, dressing for lymphedema, which was near-universal in this

sample. This entailed efforts to disguise and conceal swelling due to lymphedema and/or the

compression garment (3.16). Accordingly, women reported feeling unable to wear singlets,

strapless dresses, short sleeves, and certain items of jewelry (3.17). Numerous women

commented on how these concerns affected their decisions during clothing shopping.

Partner Reaction and Supportiveness

The role and support of their partner was the most significant theme participants

raised in discussing the sexual impact of breast cancer and lymphedema (Table 3). Partner

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supportiveness was viewed as a continuation of the support received during and after

treatment for breast cancer, and any sexual issues that arose from that point onwards.

Women highlighted an accepting and validating partner as being important to

confronting sexual concerns arising from lymphedema (3.18). When husbands were verbally

supportive, such as using flattery and validation to alleviate their wife’s body image

concerns, their efforts were generally appreciated (3.19). A husband’s participation in

therapeutic lymphatic massage was felt to be a sign of acceptance, and for some women a

form of intimacy (3.20). One woman with severe lymphedema had embarked on a new

relationship shortly before her breast cancer recurred, and attributed her continued sexual

relationship to her husband’s frank desire for her despite her mastectomy and lymphedema

(3.18). However, another woman described her how her appreciation for her husband’s

reassurances co-existed with enduring doubts about her sexiness (3.21).

Nevertheless, many in this sample reported they had overcome challenges to sexual

enjoyment by lymphedema and breast cancer. When asked how, women most commonly

discussed the stability and longevity of their relationship (3.22-23). Several spoke about the

importance of a husband who was sexually patient during and after breast cancer treatment,

particularly following chemotherapy (3.24-25), with one attributing their husband’s attitude

to the quality of their pre-cancer sexual relations (3.25). Another discussed the importance of

her husband’s acceptance to her ability to cope with her loss of libido following breast cancer

treatment (3.26). Two women had separated from their partners during cancer treatment.

While neither identified sexual concerns as a cause of the relationship breakdown, both had

painful experiences involving their ex-partner’s unrealistic sexual expectations (3.27-28).

Support Sources

Few women were asked about sexual issues by any health professional, and most

were unwilling to discuss sexual concerns with health professionals, friends or family (Table

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4). Although some women discussed exceptions, most believed they would be dismissed or

face discrimination if they discussed lymphedema-related problems (4.2-3). Women who had

discussed sexual concerns with health professionals had mixed experiences (4.4-5). Women

regarded lymphedema support groups and peers very positively as sources of support (4.7-8),

although few had found such support, and those who did found it by accident rather than

through the recommendations of health professionals. Therefore, for this sample, limited

support for sexual issues had been received.

Discussion

This study explored sexual concerns raised by breast cancer-related lymphedema. The

sample commonly reported sexual concerns, attributing them to breast cancer alone or in

combination with lymphedema. The severity and location of lymphedematous swelling,

wearing a compression garment, and body image all contributed to sexual issues. However,

even where these factors were present, a supportive and accepting partner afforded some

protection/buffering against sexual concerns. Conversely, an unsupportive or sexually

impatient partner was associated with poor sexual outcomes. Importantly, few women

reported positive experiences in seeking support for sexual concerns, whether from health

professionals or others.

These results support and extend previous investigations into sexual concerns

associated with breast cancer-related lymphedema. The present sample contained younger

women than past qualitative research [17], yet overlapping concerns arose, particularly in

relation to being ugly/unsexy due to swelling. However, women in the present study

elucidated broader body image concerns associated with the public perception of their

lymphedema as fat or an injury, and their consequent efforts to disguise lymphedema and

their compression garment by changing their style of dress. Similar themes were reported in a

very large (N = 1257) qualitative study of women’s sexuality after breast cancer (no

12

lymphedema) [14], which is consistent with the perspective presented by the present sample

that lymphedema potentially exacerbated body image concerns raised by breast cancer. The

support of a male partner was important in this research but not a theme evident in previous

lymphedema research [17]. It is, however, consistent the aforementioned non-lymphedema

qualitative study [14] in that women placed high value on partners’ acceptance and support,

although such support did not necessarily alleviate body image concerns.

The present sample also discussed the potential for severe lymphedema to interrupt

physical sexual function. Previous quantitative research [18,19] has identified lymphedema

status as a predictor of sexual interest problems [18], but not pain during intercourse, vaginal

dryness, or menopausal symptoms [19]. This is consistent with the current results, because

apart from one woman who was unable to masturbate, and several who discussed

pain/awkwardness related lymphedematous areas, the majority of the sample described

sexual concerns deriving from body image and relational factors. Thus, future quantitative

research studying breast cancer-related lymphedema sexual concerns should address body

image and relational concerns in addition to physical function [11,12].

This study identified lymphedema severity, compression garment use, body image,

and partner support as interrelated themes associated with lymphedema’s impact on sexual

concerns. However, because the research is qualitative, it is not possible to draw conclusions

about the relative importance of these themes, nor their distribution in the population of

women with breast cancer-related lymphedema [22,23]. Nevertheless, data saturation was

achieved in the present sample, indicating that the full range of factors perceived by women

to influence lymphedema-related sexual concerns was captured [22]. Furthermore, as the

sample was recruited from treatment sites, conclusions can validly be generalized to women

with diagnosed lymphedema currently seeking treatment. Caution should be applied in

generalizing to women not receiving treatment, as sexual concerns could be more severe for

13

women with uncontrolled lymphedema. Furthermore, while several interview prompts

concerned lymphedema symptom experience (e.g. heaviness, pain), a standardized

multidimensional assessment would have improved understanding of the impact of

lymphedema severity and location. Including such a measure in future research might

delineate symptoms of particular concern to women. The realist/essentialist epistemology of

thematic analysis adopted, while suited to portraying participants’ experiences, limited the

opportunity to reflect on socio-cultural forces that affect sexuality in women with breast

cancer [7]. Further research, possibly in a social-constructivist paradigm with a theory-based

approach, would complement and extend these findings. Finally, single women seeking

partners and homosexual women were not represented in the current sample. These groups

have specific additional concerns worthy of study [11].

Women in this sample described support received from their male partner as critical

for adjusting to sexual concerns. This finding is echoed in studies of (non-lymphedema)

breast-cancer related sexual adjustment [24-29]. However, all such findings are from the

woman’s point of view; no study has specifically examined male sexual partner’s experiences

in providing support for sexual concerns, either in relation to breast cancer itself or in

combination with lymphedema. Evidence from a general sample of 20 sexual partners caring

for people with cancer (including 6 men caring for wives with breast cancer) suggests good

communication is critical for partners’ sense that sexual concerns were being negotiated

successfully [27]. Less intercourse became acceptable to partners if the couple expanded their

definition of “intimacy” to include practices such as oral sex, massage, and kissing.

Interestingly, these processes were seen in the present sample, where some women reported

partners’ participation in lymphatic massage to be a form of intimacy. However, research

specifically studying partners’ experiences is warranted.

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This research suggests several avenues for future study. Quantitative research could

be conducted to identify the relative contributions of the four themes to sexual concerns,

substantially expanding the range of factors examined by previous research in this area. The

findings underscore the critical role for male partner support in adjustment to lymphedema,

and future research is warranted to understand how male partners themselves experience

breast cancer-related lymphedema sexual concerns, and how they might best be supported.

Finally, these findings identify a preliminary need for intervention, particularly as women in

this sample reiterated the perception that little or no support for sexual concerns is available

to them [30].

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Acknowledgements

The authors would like to acknowledge contributions by the following people: Ms.

Margaret McCaskill, for conducting interviews; Ms. Leigh Murray, for assistance in coding

and interpretation; and Ms. Asha Heydon-White, for assistance in recruitment.

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Conflict of Interest

The authors have no conflicts of interest to disclose. The authors have full control of

the primary data and can allow the journal to review the data if requested.

17

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29. Zee B, Huang C, Mak S, Wong J, Chan E, Yeo W (2008) Factors related to sexual health

in Chinese women with breast cancer in Hong Kong. Asia‐Pacific Journal of Clinical

Oncology 4 (4):218-226

30. Hawkins Y, Ussher J, Gilbert E, Perz J, Sandoval M, Sundquist K (2009) Changes in

sexuality and intimacy after the diagnosis and treatment of cancer: The experience of partners

in a sexual relationship with a person with cancer. Cancer Nursing 32 (4):271-280

21

Table 1. Demographic and medical characteristics of interviewed women

Age, years M (SD) 58.9 (7.9)

Range 38–67

Marital status, n

Married 14

Separated/Divorced 1

Widowed 2

Years since cancer diagnosis M (SD) 9.1 (8.4)

Range 1–27

Breast surgery, n

Lumpectomy 6

Mastectomy 11

Axillary surgery, n

None 8

Axillary dissection 9

Any radiotherapy, n 13

Any chemotherapy, n 15

Any hormone therapy, n 13

Years since lymphedema

diagnosis

M (SD) 7.3 (7.9)

Range 1–25

Lymphedema location

Arm alone 13

Arm and hand 1

Arm and breast 2

Trunk and leg 1

22

Self-rated lymphedema severity

No problem 1

Mild 8

Moderate 5

Severe 3

23

Table 2. Breast cancer’s impact on sexual concerns

Theme Example Quotes

Chemo- and hormone therapy 2.1: I was on, um, Tamoxifen. And now I'm on Femara and

just the combination of those drugs, certainly drops your

sex drive. I mean you're basically trying to get rid of all the

estrogen out of your body, so, um, I just feel like my sex

drive is almost gone down to zero. It's ... it's really hard. I

felt like I'm, um, I ... I felt like my body went numb. I guess

that's the only way I can describe. I used to say to my

husband, my body feels like it's gone numb. I feel nothing

from the waist down (ID16, mid 50s, married)

Loss of breasts 2.2: ... as a woman it is a bit of a part of your sex life as

well and I’ve got no sensation there, it’s just these two sort

of artificial lumps, you know, they’re not breasts in the

sense as my real ones were so that takes quite a bit away

from that side of things as well (ID05, early 50s, married)

2.3: The first time, the breast was still intact … somewhat

warped and disfigured but it was still there, there was still

feeling and sensation but, um, after the [recurrence and

mastectomy] it was obviously totally different, I didn’t want

to know about him looking at that part of my body. He was

okay with it, he was comfortable with, you know, he was

24

alright, there was no problem from his point of view (ID17,

early 60s, married)

Body image and beauty 2.4: I’m just filling the paperwork out now to have a breast

reconstruction done... I believe that’s going to make me feel

a lot better once it’s all done and … and not mainly from a

… a sexual point of view, but to make me feel better in

clothes, you know. I’m lop-sided (ID13, early 60s, married)

2.5: … if we’re talking about the general cancer excluding

lymphedema um you know my sex drive isn’t as high as it

was because of medication. Um I don’t feel as sexy because

of ... of the um scarring on myself (ID14, late 40s, married)

Lymphedema’s role compared to

breast cancer

2.6: I can probably categorically say that when getting

intimate I don’t think of [lymphedema], it’s not ... ‘cause

it’s not really ... it’s not really a focal part of ... of being

intimate, your breasts are, you know what I mean? (ID14,

late 40s, married)

2.7: I think that I sort of just relate to it as a whole thing. I

mean I felt ... emotionally sort of shattered to have

[lymphedema] but I ... and, um, because it was an ongoing

sort of thing, like the cancer, the cording, the lymphedema,

all ran into one if you know what I mean. I couldn't dis ... I

25

don't think the lymphedema in itself has made any

difference to me in that way (ID02 mid 60s, married)

2.8: … with the lymphedema, you know, if I’d ... if I’d ...

maybe if I’d had lumpectomies and still have most of my

breasts and nipples and sensation then the lymphedema

would be just a little hurdle to overcome and we would have

worked on that, it would have been fine but it isn’t like that

for me so it has been a bit harder (ID05, early 50s, married)

26

Table 3. Themes and subthemes summarizing lymphedema-based factors impacting on

sexual concerns

Theme Sub-theme Quote

Severity and

Location

Impaired

sexual

function

3.1: I'm very right-handed and mine's in my right arm.

So that makes it quite difficult in other areas like, um, I

can't masturbate at all. Because I don't have any rhythm

in that other ... other hand. So that's a big issue. And the

other thing is that, um, having ... well that's a big issue to

me (chuckling). And having any, um, sort of, constant

movement in my hand in, ah, in my right hand also

makes a difference if you're trying to pull someone off.

So you can't, sort of, get that ... that rhythm to, sort of,

you just ... your arm gives up after about half a minute.

Yeah, so the other way, you know, before I never had

problems with those areas (ID13, early 60s, married)

3.2: [husband] says I’m always whinging “get off my

arm” (chuckle) Yes, because, even though I am a very

active person, there’s lots of positions that you’re

definitely not comfortable in (ID17, early 60s, married)

“If it were

worse…”

3.3: [No sexual effect to date] Probably because it’s not

big. ‘Cause sometimes I see like poor women when I go

to the service at the hospital and I find oh, look at that

woman, that poor woman, and then I see her with a

27

bigger arm and [unclear] and that’s what scares me

because I don’t want mine to get bigger and that make

me do more massaging (ID11, early 60s, married)

3.4 :Um, I’m sure that if I had it even more then I would

feel more uncomfortable about intimacy …But because

it’s not … I don’t know how [therapist] would refer to it,

she has told me this is sub-clinical (ID02, mid 60s,

married)

3.5: … when I first started going out with [husband] and

it was all critical and everything and trying to make a

good impression. I only had the one arm that was

affected. Felt in some ways that I could disguise it. I

don’t think I would have embarked on a relationship

having two arms and two legs impacted. I don’t know

how… I’d … [be] embarrassed (ID12, early 50s,

married)

Compression

garment

Sexual

interference

3.6: The only thing about intimacy about my

lymphedema is that ‘cause you’re wearing your um your

garments all the time it does the kind of ... I don’t know,

kind of puts a little bit of a ... “oh hang on a minute”, and

try ... I’ll try and take my garment off in a ... in a quick

way so it’s not ... not um encroaching on what’s going

28

on. But that’s the only thing that might pause anything

but other than that, no, it’s all good (ID14, late 40s,

married)

3.7: … it’s hard to touch someone else when you’re

wearing, you know, a rough sort of textured garment, it’s

not ... it’s like you’re one-handed, do you know what I

mean? You don’t have two hands to do things that you

would normally do. Sort of it’s not the same touching

someone’s skin with your skin, it’s different, you know

(ID05, early 50s, married)

Cause of self-

consciousness

3.8: … someone just looking at me at a quick glance

wouldn’t even dream that there was something different

about that arm really, I don’t think, if you just looked at

me quickly. Um, but, yeah, certainly when I’m wearing

the sleeve and the glove it does, you know, you’re aware

of it (ID05, early 50s, married)

3.9: I feel as … people occasionally comment on it, but I

feel self-conscious about it (ID09, late 60s, married)

3.10: I don’t wear it shopping or anything, I … I pretty

much just wear it around the house actually, I don’t go

out with it. I used to in the beginning but not now … I

29

don’t want attention drawn to my hand … people ask

what’s wrong? … I can't be bothered so it’s just easier

not to wear it (ID06, late 30s, married)

Body image

and beauty

Feel ugly 3.11: …Well, I just think even if you put on a nice

nightie or anything, or you go to put on anything you just

feel ugly. You know, if you’ve got a … big blobs of fat

or, um, you can’t be touched in certain places … you

know, I’ve got from once … halfway around my body

where my chest is, you know, if it’s touched it’s sore

(ID13, early 60s, married)

3.12: … I don’t actually feel like I can, really, give

myself as fully ‘cause I always worry that he’s going to

feel the lump of fat around … I don’t let go of it …

probably in the post-sex period. You know, he’s giving

me a cuddle, he rubs his hand up my arm and I think, oh

my God, don’t touch that (ID12, early 50s, married)

Treated as

fat, injured,

or disabled

3.13: …the rest of the world don’t see it as lymphedema.

They see it as fat. And just look at me as though I’m fat.

And I even had somebody say to me once, when I had

my … my [compression] sleeves on at work, um, “is that

to hold your fat in?” … And you get a lot of looks and

stares and people telling you about diets (ID12, early

30

50s, married)

3.14: I don’t like having to wear the sleeve in public… I

just don’t want to be defined by something, um … I

mean it … it’s there, I’ve got to … you’ve got to work

with it and … um, and that’s that, just ignore it. It’s like

asthma. So … but that’s just a personal thing. I’d prefer

not to be a … treated like an invalid. (ID09, late 60s,

married)

3.15: … see there’s too much emphasis on what’s

outside and people … people are too busy, um, being

concerned with how they look rather than what’s going

on on the inside … if somebody says something I just

ignore it, because they’re very rude (ID03, early 60s,

widowed)

Dressing for

lymphedema

3.16: And, um, and when ... when I wear clothing

sometimes, um, particularly when ... in the summer

when it gets a bit bigger, um, and the heat, I kind of have

to think, oh should I wear that top, or is that going to

make the arm look too big. I'm sort of conscious of it

(ID16, mid 50s, married)

3.17: I didn’t wear sleeveless things for three years, I’m

31

just starting to again this summer on the days when I’m

not wearing the [compression] sleeve but for a long time

... it’s always looking for garments that cover up the top

of the sleeve or that, you know, cover the swelling. Um,

just even those sort of things, you know … you can’t feel

pretty, you can’t sort of wear bracelets on that side

anymore. They’re only little things, they’re only really

little things but they’re just ... they just do add up a bit, I

guess, yeah (ID05, early 50s, married)

Partner

reaction and

supportiveness

Acceptance

and

validation

3.18: … even when I told him I was ha … had a

mastectomy, he just said to me, oh yeah, I thought that

was probably coming. Like, he … he’s probably the

worst of the husband, kind of, you know, care factor

zero, um, but for me going through what I was going

through it’s been absolutely amazing. I don’t know what

he thinks privately ‘cause he’s d … he’s not a real talker.

Um, but he’s certainly not shy about throwing his leg

over (ID12, early 50s, married)

3.19: I won’t say he makes light of it, but he ... he tries

to make me realize it’s not a huge issue. So I might sort

of, um, I don’t know, complain when I’m putting

something on that doesn’t fit right anymore and it’s

yuck, too tight here and there. And he’ll just sort of say,

32

but you look great, you look fine. And he’s encouraged

me to go out and buy some new clothes that I feel

comfortable in (ID02, mid 60s, married)

3.20: … the lymphatic massage that he’s been doing it’s

probably been the way that we have kept physically

intimate is that... you know, as ... you probably know

what that massage involves ... it’s not just massaging the

arm it’s massaging various parts of the body and it’s a

very gentle light touch ... so that’s been quite a nice way

that we’ve had some physical contact together on a

regular basis. And I think he’s seen it as that, you know

... well, we don’t have the ... the other kind of contact but

at least we’ve got that (ID05, early 50s, married)

3.21: …the kids are away for the weekend so we’re in

the .. having a swim in the pool and I put a bikini on.

He’s loving it but bikini’s small and ... and I see myself

with all this you know all these scarring and the

lymphedema in my arm and I feel that I lose my

sexiness. And he tells me to shut up and you’re looking

gorgeous and I ... it’s very, very hard for me ... well you

just have to swallow it and just think to yourself no, no,

you’re good, you’re good (ID14, late 40s, married)

33

Established

relationship

3.22:.. my husband and I have been married 38 years or

… was it 35 … 35 years (chuckling) … So, um, I mean

he’s been, um, very supportive and I … I … I don’t

honestly think that it has impacted, um, in … in anyway

on our, um, intimate relationship (ID08, early 60s,

married)

3.23: I've got a very patient husband, and, um, I think the

fact that we've had a really strong marriage and a good

sex life all though our marriage … I think that's sort of

been good. I think if we'd had been ... if we'd had

problems along the way this would've made it a lot

harder. But, um, you know, he's just ... [unclear] you

know, things will get better, just got to give it time

(ID16, mid 50s, married)

Sexual

patience

3.24: … my husband, um, said to me once, it’s a good

thing we’re good friends, isn’t it? I said what do you

mean? And he said well, you know, if the only thing we

had in our marriage was sex we’d be pretty shot at the

moment. (Chuckling) I said I hadn’t thought about it like

that but now you put it that way, yeah (ID03, early 60s,

married)

34

3.25:... I must admit after, ah, well we were intimate

after surgery, but during chemo not so much. And he

was wonderful. There were, you know, no pressure on

me and he ... he just knew. So that was … that was really

great (ID02, mid 60s, married)

3.26:... it’s just, you know, sexual ... um, contact is gone

but, you know, we hold hands, we cuddle, we kiss, so ...

um, you know, we still love each other and ... that’s very

much still there as part of our relationship, which is

great, and I think if you didn’t have that with your

partner I think it would just be that much harder. I don’t

know how I would have coped if I’d had a partner that

was very demanding in that area (ID05, early 50s,

married)

Sexually

inconsiderate

3.27: I moved into the spare room because he [ex-

husband] was inconsiderate sexually. So you’d come

back from chemotherapy and he thought it was okay to,

you know, have sex, you know, that there was nothing

wrong with me. You know, he didn’t… understand that I

was … I was pretty ill. You know, that was never a

consideration (ID13, early 60s, remarried)

3.28: …when he came back from the holiday he sort of

35

said to me … you know, I said I’m not very comfortable

with, you know, having a sexual relationship at this

stage, you know, I still wasn’t very comfortable. And he

said well get yourself fixed. You know. And I thought,

yeah, I’ll fix … I’ll fix you first (ID04, mid 60s,

separated)

36

Table 4. Experiences and attitudes regarding seeking support for general and sexual concerns

Family, friends, and society

Positive 4.1: ... my sister moved in to look after me … ‘cause I had nobody here …

she bandaged it … if I hadn’t have had her I don’t know what I would have

done ... I’ve got family, they’ve been terrific, you know, even my brother …

if my sister couldn’t take me to the, um, oh, like the doctors’ appointments,

my sister in law turned up and she took me …I’ve had the support of family

and ... and some really close friends that I’ve known for years … (ID07, early

60s, widowed)

Negative 4.2: … trying to live a normal life with this stuff … and not be judged, is

horrendous. And … and people’s lack of understanding of what these things

are means that there’s very little compassion … out there (ID12, early 50s,

married)

4.3: … one of the girls said to me, don't wear your sleeve 'cause it will look

like there's something wrong with you and ... you may not get selected [for

Dragon Boat team]. So I did my try out without my sleeve on ... they

wouldn't know to ... to look for anything ... like that, but, um, I felt like it ... if

I wore my sleeve it was telling everybody there was something wrong with

my arm. (ID16, mid 50s, married)

Medical & Allied Health

Positive 4.4: ... about a year ago I went to see my GP ... I have a pretty good

37

relationship with her and she was very supportive to me during, you know,

my dreadful year ... [she] referred me to a book which was ... by Dr Rosie

King, I think ... Where Did My Libido Go ... it was a good read for me

because I guess it was reassuring that, you know, there’s an awful lot of

women for a whole bunch of reasons at various stages of life who are

experiencing exactly what I’ve experienced and that I’m, you know, I’m not

some sort of exclusive weirdo ... [but] I’ve just found that a huge ... huge

hurdle to overcome, so I must admit that hasn’t been terribly successful for

me (ID05, early 50s, married)

Negative 4.5: I have seen a gynecologist and she just ... one day she asked me, she

says, is everything okay, you know, with your sex life and ... I don't know, I

... um, she was ... she was a ... a really lovely lady, but I just thought, well,

what can I say, you know? No ... no, it's not great but there isn't any drugs

that can help me (ID16, mid 50s, married)

4.6: ... I know he’s talked to a few people about it [sex] but we haven’t gone

to sort of see a therapist or anything like that ... We’ve talked about it ... Um,

I don’t know quite why we haven’t. It’s, like, really all too hard ... (ID05,

early 50s, married)

Lymphedema Peers

Positive 4.7: Probably one of the most helpful things that I did and I … and I can’t

believe I did it so late, I’ve only done it in the last six months … I joined, on

38

Facebook, a lymphedema support, uh, group ... I have to tell you, oh, it … it’s

heartbreaking to see everybody else in the same boat ... But it’s lovely to feel

connected to other people who actually know, so when people post they’re

having a bad day and they raise issues, I go, I know what that feels like ...

They understand ... Yeah, and, look, I don’t want to go to, you know, sit in a

hall with a whole lot of people, but … you know, the Facebook thing actually

suits me, suits my life, I can check in when it all gets too much and I want to

disconnect from it, I can disconnect from it (ID12, early 50s, married)

4.8: And, um, these days I actually go to a, um place... it is for cancer people,

most of them have got lymphedema ... Um, and you do all sorts of arty

things. You can do whatever you feel like doing out there ... all the other

women, most of them have got lymphedema, so that’s, um … that’s rather

interesting actually. It’s … it’s … I wish I’d found it a couple of years ago.

Um … Just knowing that there are other people and, um, you hear little hints

from time to time, but, look, it’s just women being women ... Um, it’s just

that they … they all understand … I’ve never been in a group like that before

... I wish I’d … as I say, I wish I’d known about it previously ... (ID09, late

60s, married)

Negative 4.9:... there is a support group and … well there used to be at [hospital]. I did

go there once but I was working and it was in the daytime so I could only … I

couldn’t go (ID10, mid 60s, married)

39