Undergoing treatment for breast cancer can have an impact on women's sexuality and intimate relationships in a number of ways. Physical changes related to treatment, as well as emotional effects related to treatment, sense of self and relationship dynamics, are common. While some women, especially those with early stage breast cancer, may experience less impact on their sexuality or may adjust fairly easily after treatment, other women may experience more substantial or long-lasting effects. Moreover, dealing with the effects of breast cancer treatment on sexuality, identity and intimate relationships can be challenging because information about this subject is often difficult to access. The range of perspectives shared by women we spoke to, from limited to more substantial impact, are summarized below.
Limited impact on sexuality, identity and intimate relationships
Several of the women we spoke to did not feel that treatment had a big impact on their sexuality, femininity or the status of their intimate relationships. Sometimes this was because they were single, were not looking for a relationship and did not experience emotional or physical impacts that otherwise affected their sexuality or identity. Likewise, some of the women who were married or in relationships were relatively unaffected. Having supportive partners and not feeling that their surgery diminished their femininity were common elements for many of these women.
For example, Deann did not experience any negative impacts on her sexuality. As she explained, “My husband was very good about it … he was great … They said I had cancer and … I was like, “Well, you know, it’s only a boob, you know really right? … It may affect some people but it didn’t affect us.” And interestingly, cancer did not prevent Nalie’s relationship with her current partner, which actually started shortly before she received her diagnosis.
His being supportive was really important. I just feel I could be...I don’t know, the ugliest kind of cartoon character, (the) Ugly Duckling and he wouldn’t care, that’s how I feel. And that’s really important because, I don’t know, jeez, I’m sure everyone’s experiences are really different and but I can’t imagine it being any different than that and it’s incredible.
Other women experienced some negative impact on their sexuality and intimate relationships but were able to manage this and get back to normal over time.
More substantial impacts on sexuality, identity and intimate relationships
Women experiencing more substantial impacts on their sexuality and intimate relationships talked about being affected in a number of ways. These included changes to their identity or body image, physical pain or discomfort during intimacy and their partners having fears of hurting them or fears of spreading the cancer. During treatment women described a loss of interest in sex because of fatigue.
After surgery, a number of women noticed changes in the way they felt about themselves or their sexuality. For instance, the loss of one or both breasts and the resultant scarring sometimes left women feeling that they had lost their femininity. Debbra described how she felt that she lost part of her sexuality.
As far as the sex part goes, I felt not very feminine. Of course, when I had no breasts at all, I felt self-conscious of my scars and everything. So I talked to my sister about it, just so she just kind of helped me go through it. And I’m, he won’t even touch my scars. I didn’t know if he was grossed out by them or what he thought but I think he just didn’t want to pay any attention to them. And so, there was a bit of, kind of, difficulty. He’s like "Yeah, I don’t care, I don’t mind." But it’s not like I want him to fawn over my scars or anything but just have it not be affected. And so, I think that I felt like there was, it just, I didn’t feel sexual. I think the Tamoxifen kind of did that too. Also the Effexor as well, all of those things made me feel not sexual for a while. Just giving birth. I was heavier and just the lack of sleep. So there was, there’s a period of time where things were very difficult for us as a couple. We both dealt with it in our own ways. And for me, I couldn’t sleep and I think I drank more alcohol at that point in time too. Just because, I just wanted to feel numb. I just didn’t want to feel crappy so... or I wanted to be able to get to sleep at night.
And now, I don’t find, now we have a great relationship and we have for a few years. I do think having the breast put back on, but I can’t tell how much of it was how I felt about myself or how he felt about me. I know that he loves me and he loved me and all that kind of stuff but you still want to feel desirable to your partner too.
The loss of sensation after mastectomy was another widely-discussed issue.
I think that more needs to be done in terms of working with the couple for the intimacy factor and stuff like that. I know I never had any discussions about it with my GP (General Practitioner) or anything like that. I think it’s something... where do you go and talk about this stuff? There’s really not a lot that’s said. You’re on drugs that dry all your estrogen which means that you know you have a whole bunch of other things that are happening. Your arousal, all that other stuff doesn’t happen and you still want to be... you might want to be but you also don’t feel attractive. You’ve lost your hair, I didn’t really feel very attractive being bald and there’s no hair anywhere. That part, I think is hard for them, because not only are they losing parts of their wife they’re losing the intimacy factor. And maybe other couples are different and they manage around it differently but I know that was a struggle.
A number of women opted to have reconstructive surgery after mastectomy. However, while this often provided psychological improvement it didn't restore sensation.
Some women also experienced impacts on their sexuality from other forms of treatment. For example, extreme soreness after radiation therapy was a common though usually short-term effect that limited physical intimacy. Tina described a period of two years of recovery from soreness before the intimacy returned back to normal.
But, sex no. I don’t have sex, no because some... there was some damage there.
Interviewer: Oh so you had to stop?
I’m celibate yeah! jeez...
Interviewer: Because of the treatment?
Yeah because of yeah, which is horrible because nobody tells you that. It doesn’t stop you from being loving and doing other things but not actual intercourse. I remember when I had my pap test a year after, and she said "Oh intercourse is out." I said "What!" She says "No you can’t." I say "Why?" She says "Because you’re a mess in there." I say "Well what do you mean?" She says "Well you must have had radiation for cancer down there." I said "No." So I never got to the bottom of that, how that happened and it’s too painful.
The loss of estrogen due to chemotherapy or hormone therapy meant that many women experienced loss of libido (sexual desire) and vaginal dryness which can make intercourse painful. Women experiencing these effects described these challenges in varying degrees. One woman spoke how her interest in sexual activity was totally gone after losing her breasts.
Others maintained their interest in sex but had to find ways of managing their symptoms, for example, through the use of lubricants to make intercourse more comfortable. However, while this allowed these women to have sex, for some it was not as spontaneous as they once had been.
When you were talking about the physical changes everything is dry. Everything is dry. We were, well we both were fairly intimate people, and very spur of the moment. Now it’s like... you’ve got to plan to have sex and it’s really...
Interviewer: To kind of prepare yourself?
Because I had to prepare, yeah! So that’s a bit frustrating and my husband is so sensitive. He’s always afraid he’s going to hurt me. That’s... it just changes everything, but we’re still working on it 4 years later. We’re still dealing with it, it’s like "Honey it’s okay. I don’t want to hurt you." I had went through those, the ectopic pregnancies as well, which was... that was a little off for sex. But oh yeah! it’s definitely affecting us that way. I don’t think it’ll, well not that I don’t think they’ve told me nothing’s going to change. This is the new you and you’re going to learn to live it. You’re going to have to learn to live with it. It’s not the breast thing, that intimacy, that’s not what I’m talking about at all. It’s the effects of the drugs on lubrication.
Impacts on partners and relationships
While the most obvious and direct effects of treatment on sexuality were experienced by the women, they also spoke about the impact on their partners and, more generally, on their intimate relationships. A number of women noticed that their partners needed reassurance as they were avoiding physical contact for fear of hurting them. Debbra felt that there needs to be more recognition of the impact on men since "they have no support system and also feel that they have to be strong … when they watch somebody that they love … and they have no ability to come up with a solution … it's really, really difficult for them."
Other women found that, although their partners did not complain or put pressure on them to have sex, the dynamic between them had changed. Several women talked about this experience as a significant loss.
My partner is not… Either he doesn’t show it, but he is not… No, it does not bother him. No, he never made me feel this. So it is more… I am the one who has a problem… my breast will never come back! So I would be surprised that… It would take an adjustment period. Yes, may be with a… But no, even with a reconstruction, your breast lose all the sensitivity… it is a big loss at the intimacy level, yes, yes. The breast, yes it is a big loss. There is grieving to do after concerning this.
He said: “I need to vent, it will make me unwind, I need to vent” because I mean life is not the same. It is completely… I would say that he is a roommate instead of being… he is not affectionate anymore, he is not loving or he still is but in another manner. And me as well, you know life has… completely… I wouldn’t say that it destroyed our life as a couple. That’s not it, he is still with me, but it is at another level… I saw this a little bit in the books that I had. Living with cancer, having sexual intercourse during chemo – forget it! Forget it! It takes everything from you. You do not sleep, you are in a bad mood, you are… Well in my case anyway. I was walking at 4 a.m. and he was hearing me; he had a hard time to sleep. I was trying not to disturb him. At one point I was trying to snuggle up to him because I was not sleeping well. And “You wake me up, you are bothering me.” Then I was getting up with my “security blanket”, I was going to the living room and telling myself: “Poor girl, what were you expecting? You have no more hair, you have no more eyebrows, you are green/yellow, and you are not sleeping because… You are trying to snuggle up, you have no breast. What do you want? What were you expecting? Go to the living room and leave him alone! Leave him alone!” So it was pfff… it was a sequence of all kinds of things. We started making love again few times, and because of the vaginal atrophy I am unable to. It is because of that, I am not able anymore, and the hormone as I told you. There is a hormone at the level of… that acts locally.
While the impact of cancer and treatment on relationships could be substantial, many couples were able to work through these difficulties. Sometimes they were able to get back to normal as it had been before diagnosis and treatment. Others had to adapt and find a new normal.
My husband was a neat freak, so he was scared chemo and stuff like that. Of course, so intimacy goes and it’s just after my radiation. But he’s very kind, very supportive; when I didn’t want him he gave me a lot of space. There were days when he wanted to hold me, I’ll just say I need my space. He was very understanding, very... he would not impose himself on me and he gave me that space.
My boobs were an important part of my sex life and I miss that one for that reason. In terms of intimacy, erotic reasons, I guess, but other than that, if anything, it’s deepened our relationship. So it’s not an issue, my other breast is different now. I don’t really know what that’s about but, no, I wouldn’t say in the big scheme of things it makes a difference. One way or the other.
Impact of treatment on dating
Some of the women we spoke to were single and were faced with the prospect of having to disclose their illness and the effects of treatment to potential partners. Ginette, for example, wondered how she would deal with this kind of situations, she has no idea yet.
I’ve just been single ever since 2009 and I think I am nervous about that because now I’m lopsided. They’re not even, and sometimes I don’t like it but I just... I don’t know, I think now, I’m "Oh well I’m different on both sides like who...?" Even two sides of a face are different.
Accessing information about the impact of treatment on sexuality and intimate relationships
While the women we spoke to shared a wide variety of experiences related to the impact of treatment on their sexuality and intimate relationships, there was broad agreement that information about these potential impacts had not been freely offered by their healthcare providers. Several women felt that their doctors had avoided or glossed over the subject. As Kathryn put it: "They don't ask. You have to say it which is bad because some people are shy, they're intimidated, they're embarrassed and so a lot of things are swept right under the carpet."
I bought a book. I read another book called Intimacy After Breast Cancer. Because it’s an issue and no one talks about it, it’s a big deal. Part of the reason I feel so sorry for my partner, I was 29, he’s 29. I couldn’t have sex, who wants to have sex with chemo girl, like no one. I tried talking to my doctor about it, but he’s an old man and he doesn’t even...
I, never read anything, so maybe there’s a way, maybe there’s a sex therapist that can give some views on how to change the intimacy process when you’re missing parts. Because, that’s what... you feel you’re missing parts. Especially as a double, you don’t have any stimulation on the breasts anymore and you don’t feel a lot depending on how your scars heal and how much scar tissue you have and stuff like that. So it’s even with big ones, they don’t feel the same. That kind of stuff. So something, and I don’t even know whereabouts to go to get that information, because I never thought to look it up. But I think it should be something that is discussed and something that’s brought up sooner rather than later. Because if you can ease into it, then it doesn’t become such an issue later on.