Table 3.
Part 1: Qualitative themes 1–3 and illustrative quotes: patients’ and partners’ experiences of sex and intimacy after MBC diagnosis.
| Main themes and subthemes | Illustrative quotes corresponding to themes |
|---|---|
| Theme 1: Patients’ Experiences of Sexual and Intimacy Concerns after Diagnosis of Metastatic Breast Cancer (MBC)— Significant disease burden amplifies sexual changes and challenges | |
| MBC-related sexual changes and concerns: Cumulative treatments and disease can amplify the severity and complexity of sexual problems, also may complicate responsiveness or ability to benefit from common treatment strategies | …all happened, you know a chemo-induced menopause and I had surgery, then, you know, ovaries out, double mastectomy. I said, like, really quick—at 45, I was saying, “well I’m one operation away from being a man” (Gloria, age 57). – |
| Patients’ emotional reactions to sexual changes: Emotional reactions to the sexual problems often include guilt and pressure, which can further exacerbate distress | …There are ways of being close without the intercourse, you know, without the goal…but again, I think it’s the, you know, you want to be a good partner and so it’s—I think a lot of that is, you know, the guilt part of it (Rose, age 67). – |
| Combined effects of chronic physical and emotional sexual changes: Combination of the persistent and often severe physical and emotional sexual concerns take a significant toll on patients and the relationship by wearing down hope and positive expectations, in snowball-like effect | It never goes away, you know, I mean it’s always like a mountain that you are trying to climb and find, you know, ways to, you know, overcome those obstacles (Kim, age 51). – |
| Theme 2: Partners’ Experiences and Roles— Partners’ experiences of sexual changes, emotional responses, and perceived impact of sexual changes play key role in shaping outcomes for the patient and the relationship | |
| Awareness of MBC-related sexual changes: Partners and patients describe a range of experiences and levels of awareness for partners of the changes in their sexual relationship, including the patients’ problems, their own sexual problems, and changes in the intimacy in their relationship | My husband thinks that’ll work – see, and I think you guys have same [issue] that I do. Men do not feel what we feel so they think that we are moist and we are not. And so I’m trying to say to him, “no it hurts” and he’s like, “I do not know what you are talking about. It’s not dry” and I’m saying; “yes, it really is dry” (Donna, age 39). – |
| Partners’ emotional reactions to patients’ cancer-related sexual changes and concerns: Partners describe substantial emotional effects of the patients’ sexual problems, including guilt at wanting to engage in sexual activity even when painful or not enjoyable for the patient | …the times that we have, you know, been—been intimate, it’s like…she’s not enjoying it [chuckle] and…I’m like, she’s doing it for my benefit, you know, and I feel bad that…like, that I’m making her do this…she’s, like, dry...and like, she’s tried different things, but, like, you know, it hurts... (Paul, age 43). – |
| Partners’ roles in coping with sexual changes and concerns: Partners’ experiences and emotional responses impact the intimacy in the relationship and on patients’ adjustment to their sexual problems (e.g., not wanting to cause pain leads to pulling back from intimacy whereas openness and patients in the partner can enhance the intimacy) | …I’ve found that when we have run into those periods in our relationship, then my husband kind of pulls back too, you know, for a while. And—and does not want to pressure me and does not want to initiate because he does not want to make me feel bad, you know. So, then—then that span of time grows and grows where nothing is—is happening (Kim, age 51). – |
| Theme 3: Context of a Life-Limiting Illness: Viewing the Future through the Lens of a Relationship with an “Expiration Date”— Living with life-limiting disease shapes the experience of sexual and intimacy changes, and responses to these changes | |
| Viewing the relationship as time-limited: The awareness of the life-limiting nature of the disease leads to changes in conceptualizing the relationship in general as a context for the intimacy | And now that I’m, like, deteriorating even further…it’s hard for him to watch this happen and it’s hard for me to watch him watch it happen…because, you know, we always thought we would, you know, retire together someday. It really seems unlikely that I’ll—I will get to a retirement age—ever, you know (Gloria, age 57). – |
| Emotional consequences of life-limiting context for relationship: There is a range of emotional responses and effects on intimacy, which for some couples included feeling closer, and for others, included additional stress changes in the definition of intimacy | …all these different stressors, you know, being able to provide financially, long term health insurance for me, you know, all these different factors play into just the additional stress on the relationship that did not exist before. And taking intimacy just even out of the equation (Kim, age 51). – |
| Balancing life as normal with coping with MBC: Patients and partners described a difficult balance between acknowledging the life-limiting nature of the disease versus living life as normal | Like, I always say, like, I’m—talk about it when it needs to be talked about but, like, especially, like, family-wise, like, with the kids and stuff, but then I sort of just put it on a shelf and it’s there. It’s always there and it can be taken down and looked at and talked about, but it does not need to be every day, and so we just sort of go on living as much as possible (Patricia, age 45). – |