shows the demographic and disease characteristics of the focus group participants. There were more female than male participants (due to the composition of targeted groups by diagnosis). There was broad representation across treatment trajectory, cancer sites, and age. We did not ask participants about sexual orientation; however, two female participants shared that they were lesbian or bisexual. Participants had experienced a wide variety of treatments including surgery, chemotherapy, radiation therapy, hormonal therapies, molecularly targeted agents, and multimodality treatments.
Participant Characteristics (n = 67)
Importance of the topic
Multiple factors affected how important sexual functioning and intimacy were to people. For both men and women in active treatment, sexual activity was described as less important than issues of mortality, but it was still a significant aspect of quality of life for many. As one woman described, “For me, I think part of going through the diagnosis and the treatment is you want to reaffirm everything that you can do. You’re acutely aware of what you can’t do or the compromises to your other functions because of the chemo. So, for me, it [sexual activity] was like an affirmation that I was still normal in other regards.” Feeling sexually attractive was considered more important than frequency of sexual activity for women. Men viewed decreased sexual frequency more negatively and discussed it more often than women did; descriptions of loss of sexual functioning among men ranged from “frustrating” to “disappointing” to “devastating.” However, not all men thought sexual functioning was essential to quality of life and reported positive effects of dysfunction on relationships and intimacy (described in greater detail below). A few men placed the greatest importance in sexual activity on pleasing their partners. For women with partners who wanted to be physically intimate, sexual function was considered important; however, when both partners had medical conditions that made sexual activity difficult, its importance diminished.
shows the themes discussed by the participants overall, and by diagnosis- and sex-specific group.
Themes Discussed During Focus Groups, Overall and By Group (n = 109)
Interference from cancer
There was considerable discussion in all groups regarding how specific symptoms from cancer or side effects from its treatments affect sexual functioning and intimacy. The most common symptoms reported were fatigue or lack of energy (11/16 groups), treatment-related hair loss (10/16 groups), weight gain (9/16 groups), and organ loss or scarring (8/16 groups). Such symptoms affected both physical (sexual response, 16/16 groups) and psychological (body image, 16/16 groups) aspects of sexual functioning and intimacy. For example, radiation and surgical treatments on or near the genitals (mainly for prostate, colorectal, and gynecological cancers) often severely compromised sexual functioning. Radiation treatments also caused sexual problems for people with other cancers, such as for the participant in active treatment for breast cancer who stated, “The radiation burned so badly and my chest wall was damaged so it was like the left side of my body could have sex but the right side was off limits.” The main physical complaint attributed to chemotherapy was fatigue, which was most often blamed for decreased desire for sexual activity as well as decreased stamina. One participant undergoing chemotherapy said, “My brain was kind of going there, but then my body was just sort of slacking.” Some participants in post-treatment follow-up said sexual desire eventually returned, but this was not true for everyone, even years after treatments were over.
Disease- and treatment-related problems with genital function were common. For women, vaginal dryness was the chief complaint, again, primarily related to the treatments received (hormone, radiation, and chemotherapy were all mentioned). For most, using personal lubricants solved the problem, but a minority of women experienced such painful sex and/or tearing or bleeding from dryness that they avoided intercourse entirely. Participants with gynecological cancers said hormonal therapies (e.g., estrogen replacement, progesterone cream) helped with dryness, but two women in this group said dryness was so bad they experienced bleeding just from daily activities such as walking, let alone sex. Some women from post-treatment follow-up groups said eventually their natural lubrication came back.
For men, erectile dysfunction was the biggest concern, leading multiple participants to describe sexual activity after cancer as “work,” that is, it required extra efforts to get or maintain an erection. Men described numerous therapeutic treatments for erectile dysfunction and their varying successes with them, (e.g. “with drugs, it’s pretty successful now” and “the pump kills desire for me”).
For participants who could achieve orgasm, most thought it was unchanged. However a minority thought it became easier to achieve or became more intense because of uncertainty about mortality, e.g., “there’s a desperation now.” Both dry and retrograde ejaculation were major changes in orgasm for male participants who had had prostatectomy.
Participants expressed that organ loss or scarring, treatment-related hair loss, and weight gain were symptoms that adversely affected body image. These were the most commonly cited factors related to reduced feelings of sexual attractiveness and threats to masculinity or femininity. Women across cancer types and treatment trajectories described how feeling undesirable affected their motivation for sex. Women said they stopped spending time on their looks because of their cancer, e.g., “Sometimes I feel that I’m just not worth fixing up,” while others said they wore more make-up or jewelry to compensate for lack of hair and other physical changes. Women described avoiding sex, for example, one said, “I’ve got this cancer in me. Why would you want to sleep with me?” Men also frequently discussed how weight gain made them feel less sexually attractive. For those who lost erectile function (primarily prostate and colorectal cancers), embarrassment at not being able to perform could be isolating, limiting them in relationships with both women (e.g., “it affects my confidence in the relationship,”) and men (“I’ve gotten together just with a group of men at the weekend away playing golf or whatever, and.... I sit there and I listen, because I can’t contribute [to the conversations about sexual activity]. I [feel] very much inferior, withdrawn from the group.”) One man with a colostomy bag had significant issues with negative body image, “Now, I could stand naked, and women could come in here and look at me, and they’d run out the door. You have that body image.”
Relationships Among Sexual Function, Satisfaction, and Intimacy
While the majority of participants reported that cancer and its treatments affected sexual functioning, there was significant variation in how this affected their satisfaction with their sexuality and intimacy. Participants’ conceptualizations of emotional intimacy within the confines of sexual dysfunction tended to fall into one of four categories:
1) Intimacy declined without sexual activity
For some, loss of function and/or inability to have intercourse was purely negative. Multiple women described feeling guilty about not having sex and letting this interfere with their intimate relationships in other ways. A woman in active treatment for a gynecological cancer said she distanced herself from her husband emotionally because she “felt like a failure” for being unable to have intercourse. Likewise, many male participants talked about pushing partners away and their desire to be alone after they lost sexual function.
2) Intimacy became an alternative to sexual activity
Another subset of participants accepted intimacy as a substitute for sexual activity. For example, a man with lung cancer said, “We can enjoy each other without having sex, and a lot of times, it’s the closeness, the intimacy, more so than it is the actual act of intercourse,” and a woman with breast cancer said, “[Sex] was intended but both of us were so tired that we would lie in bed and hold hands and say, “Oh, is that good for you?”
3) Intimacy was sexual activity
A minority of patients seemed to have broadened their conceptualization of sexuality to include intimacy in the absence of any genital activity. For example, one participant with prostate cancer said, “We never felt that [surgical castration] really hurt our sex life. We didn’t have intercourse, but we hugged and you go down the street and you hold hands.... I think before, you have sex and then you go on about your business and so on. But this way, you’re having sex all the time.”
4) Increased intimacy led to an improvement to sexual activity
Perhaps the most satisfied patients were those who let physical changes provide an impetus to improve their sexual relationships. For example, a male participant with breast cancer described, “My wife and I do more now than ever… we walk, we talk, we go out.... Before, we’d go out to dinner, and I’m trying to get home and get in the sack. Now [with impotence], I’m not in a hurry to get home and get in the sack,” and a woman with lung cancer said, “Actually, it is better than ever. We hug a lot, yes, we kiss a lot. Before, we were so hurried; now we take the time.”
Fertility was discussed in half of the groups overall, more often in groups of women (6/9 groups) than men (2/7 groups). Not surprisingly, it was more of a concern in groups with younger (< age 50) participants. Some participants described designing their treatment course around fertility concerns. The general consensus of participants was that fertility was a separate issue from sexuality.
Communication about sex
Participants indicated that communication with partners and health care providers was very important. Communication with partners was discussed in 13 of the 16 groups, and included sub-themes such as expressing fears of touching, expressing fears of hurting, expressions of desire or compliments, expressions of criticism about appearance, and mutual understanding of sexual changes. Communication with health care providers was discussed in 9 of the 16 groups and included sub-themes such as receiving (or not) information about sexual side effects and available therapeutic aids, asking providers about sexual problems, and including spouses in conversations about sexual issues. These qualitative data are being combined with quantitative data in a separate manuscript specifically about communication.
Some symptom-related effects on intimacy were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers, and incontinence in prostate cancer. Sexual problems related to medical devices were not common across cancer types, but caused significant problems in colorectal cancers especially. One woman in active treatment for colorectal cancer said her husband was afraid of disrupting her ileostomy bag or Vacuum Assisted Closure system (wound VAC) and thus touches her infrequently even while having sex. Another woman in this group described how wearing an oxygen nasal cannula (mask) prevented her from kissing her husband. A woman in active treatment for gynecological cancer said her port gets in the way of sex, because it is sore, she is very protective of it, and is afraid sex will hurt it. Finally, a woman in active treatment for brain (pineal) cancer said having a shunt from the back of her head to her abdomen makes positioning (lying on her back) for sex especially difficult.