Sex & Sexuality
Undergoing treatment for breast cancer can change the way your body looks, feels and responds to physical intimacy. Breasts may be partially or totally removed. Some people choose to have reconstruction while others do not. Radiation can damage the skin and cause swelling or a loss of feeling. Chemotherapy and hormone therapies can trigger menopause, causing side effects such as hair loss, vaginal dryness, hot flashes, night sweats, joint pain and loss of libido (loss of interest in sex). These physical changes often affect how people see themselves and how they deal with intimate relationships.
Mastectomy, Sexuality, and Body Image
For many individuals, having breasts is an important part of feeling sexual and attractive. Some of the people we spoke with described a sense of loss after surgery. Alice remembers her breasts “always made me feel sexy…they were one of my erogenous zones. And…there are places that I don't even feel anything anymore.” Denise felt she was “not pretty at some times because I'm all cut up” and said, “I'm a new me…I have—just have to accept it. Sometimes it's hard.” Others spoke of adjusting to the changes in their body and finding new forms of sensuality.
Janet S. explains how important her breasts are to her sexuality.
Janet S. explains how important her breasts are to her sexuality.
As far as having my breasts removed, that did kind of, I don’t want to say hit my sexuality, but it kind of tinged it a little bit. You know, I mean as we as women, you know, that’s one of the things that, I mean there’s a lot of difference between men and women. But maybe that’s how I self-identified with my sexuality and being a woman was through my breasts. And the fact of not having them bothered me a little bit.
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I can remember saying to [NAME] I said, “I want to be the same size that I was before all this got started.” You know, that is what I was. That is how God made me. That is what I am used to seeing in the mirror. I want that back. I do not want to have to go change bra sizes, or shirt sizes, or anything like that. I don’t want anything to be different about my physical appearance because of breast cancer. I just, I don’t want it, meaning cancer, I don’t want it to have that kind of control over my life. It’s dictating how I live, lead my life for a period of time, but when this is all said and done, and this is in my rear-view mirror. I want to be able to visually present myself as just anyone else on the street.
Sarah’s breasts are still sensual after mastectomy.
Sarah’s breasts are still sensual after mastectomy.
I've spent so much time with breasts there... Metaphysically, they're still there. And I can honor that. There is surprising sexual sensation that I thought was going to be gone because the nipples gone. So, it is still a very sensual area. I'm just really, really coming to peace and accepting that metaphysically they're still there and being OK with that. Not telling my brain that it's lying to me, you know, but accepting that that's a fact.
Some people we interviewed worried that the absence of nipples would be an issue for their sexual partners. Sharon said she “can't imagine a man looking at [my reconstructed breasts] and being disgusted by them because I think they look great, but I'm also nippleless.” Lisa J. was also concerned, but discovered, with her new partner, that "it wasn't like missing a nipple, you know, was any deal breaker. In fact, it was like, ‘well, what can I do to help you heal, you know, and not to focus on that either?’”
After some time, Michelle chose 3D tattooing to replace her nipples.
After some time, Michelle chose 3D tattooing to replace her nipples.
One thing that I forgot to talk about, which is so important to me, I was tattooed. So, after my mastectomy, I did not have any nipples left because, just, they could not save them for me. For some people, they can. But for me, they didn't.
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And I knew from the beginning that I wanted to have nipples back. I had considered getting them reconstructed, but I did not want a hard nipple all the time. And, so, in my young survivors' group that I go to, everyone shows off their boobs because the new people want to see the scars and see what's going to happen. And I had seen a woman who had her nipples tattooed, and it's amazing! They're—3D nipple tattooing is unreal.
Treatment Side Effects and Sexuality
The side effects of chemotherapy and hormone therapy affected people’s sense of themselves and their intimate relationships. Kerry said, “it’s a big deal when you used to have long hair, and you felt beautiful. And then you feel less beautiful when you're bald.” Amy said, “it totally sucks to be a 37-year-old who has no sexual desires…30s are supposed to be the rock-and-rolling time for women…and I spent most of my 30s dealing with cancer.”
Merle wishes they had been referred to sexual health services for support.
Merle wishes they had been referred to sexual health services for support.
And I started using they/them pronouns, but for most of my life, I was cis-identified. I was really actually comfortable in my body before cancer. But I started to find that losing estrogen, my body has changed shape. I mean, just like most people who have gone through menopause, might be able to identify with, that things are not the same. My libido is not the same. My desire is not the same. But I think that—I, I describe to people that being on, say, letrozole, which is the endocrine therapy drug that I'm on that, like, sucks as much estrogen out of my system as possible, it's kind of like going through menopause plus. Like, you know, and that's where I think the intersection of my age really matters. And I think that the medical system doesn't do a very good job of supporting people who are younger through an estrogen-receptor-positive breast cancer diagnosis. Again, I had to be the one to look up a lot of resources for myself. At [LOCATION], there is actually a center for sexuality right there, in the same place where I was seeing my nurse and doctor and health psychologist. But I had to be the one to find that place. People should be referring people to the center. It's a huge resource. And it's really important-- for people of all ages, but I think especially younger people who would otherwise, you know, like, be kind of in their sexual prime, you know. And for me to go through menopause early, as well as just like, when you're not feeling well, that also has effects on just the whole mental aspect of that too.
Amber describes how she coped with the side effects of treatment.
Amber describes how she coped with the side effects of treatment.
So, there's, you know, no libido, like, feeling anymore, unfortunately. But you still have it. You know, we've been together for 10 years. So, he has been a huge supporter. And the doctor I see and I can't remember her name up there.
She gave me some creams because vaginal dryness is also another side effect and that helped immensely. And so, there is still, you know, sex life is still there. You know, it may not be as often as what it was, but it works for him and I.
John explains that men with breast cancer are also affected by hormone therapy.
John explains that men with breast cancer are also affected by hormone therapy.
And there is a side effect for men that causes a lot of men to stop taking it. And that's ED, Erectile Dysfunction. And a lot of men will stop taking it. Personally, I wouldn't let that stop me because I don't want to have cancer. I really don't.
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I do have some of the side effects from the medication, the ED aspect of it. And a lot of men will stop taking it because of that. I'm not going to do it. But that's OK. That's something that my wife and I can deal with. It's only a temporary thing really because about another year and a half of it and then I'm going to be stopping it. So, it’s just-- you could call it a bump in the road. It's just one aspect that you manage it. And it's not forever. But it's never caused me to step away from anything or anybody. It doesn't really, you know, create a problem in my life because it's not a forever thing.
Learn more about the side effects of Hormone Therapy on the people we interviewed.
Sex after Breast Cancer
For some of the people we spoke with, intercourse was an important part of their intimate relationships. Intercourse after treatment for breast cancer can be challenging because of pain and dryness or, for men on hormone therapy, erectile dysfunction. Several of the people we spoke with found products or treatments that made vaginal intercourse more comfortable. Amber, for example, found that creams for vaginal dryness suggested by her doctor “helped immensely.”
Alice says that more people need to know about vaginal lubricants and moisturizers.
Alice says that more people need to know about vaginal lubricants and moisturizers.
I went to a conference on survivorship and it was so interesting because they were talking about the BRCA gene, different treatments and meditation, and they had all just this panel of these totally distinguished medical professionals talking about all of these different things. And the one that I just loved was the gynecologist. She was so good and so, you know, she was just use it or lose it, you know? You just, you have to, so that was one of my lists. I'm going to have as much sex with my husband as I can. He's, I’m going to wear him out.
[LAUGHING]
But she was also very practical, you know? She said, “Not just lubricate, but moisturize.” Who knew? I was like, really? There’s-? And sure enough, I go to the drugstore. And there's a whole section of vaginal moisturizer. And I thought, “Well, how did I miss that?” Because it's something that people don't talk about, and I was with one of my teammates and she was the same way. She was, like, “oh.” So, we've been expounding the necessity of moisturizer.
Michelle reflects on the challenges of having sex and solutions she had found.
Michelle reflects on the challenges of having sex and solutions she had found.
When you're going through the whole cancer process and the surgeries, and they're doing everything—you're taking away your breasts and expanding them, and then reconstruction and a hysterectomy—sex is the farthest thing from your mind. But then you get to the point where you're like, "Okay, I want to be intimate again." And your body's like, "Mhmm, no." And we're working to get that back and it's challenging. But I have found, my tattoo artist also has another company where she has made natural lubes and they're made of hemp oil and grape seed oil. And she also has a caplet which you insert every night, which also helps keep your vagina lubricated. That has helped. Also, I've found local estrogen suppository, which does help. You take that once a week, and you just—I joke with my husband. I'm like, "Well, practice makes perfect." And it's not always easy. And it still can be painful, but you make progress because we, you know, want to get back to a good place. I went out and purchased dilators, which I use because I want to feel better. But doing all that, it seems so—it's work.
Linda describes a costly laser treatment that helps some women.
Linda describes a costly laser treatment that helps some women.
So, that whole first year, I would go into the oncologist every three months and I literally would say to her, “What do you suggest I do? OK. This is what's occurring.” And my poor husband's sitting there and I'm just blurting this all out. And I'm telling her, “This is not fair. This is not fair.”
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And so finally, that third time in office, she leaned back in her chair and she said, “Have you ever heard of Mona Lisa Touch?” And I went, “What?” I said, “Write that down for me.” So, she did. She wrote it down on a prescription pad and she handed it to me, and she said, “This is something that is fairly new-, new to our city, and there's only a handful of doctors who are doing it.”
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It's a laser procedure that makes tiny little laser holes in your-, the walls of your vagina, which causes immediately-, it irritates it. It causes it to immediately make—it sends a lot of blood and it makes new tissues because it's got more blood flow to it. So, you irritate it and then it begins to heal itself. And in the healing, you get this new result.
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So, I went ahead and had the three treatments done. Now, your insurance will not pay for this, but it was worth every penny that we paid. The first treatment, you have to go eight weeks, and I really didn't see any change at all. Talked to the doctor about it. She said, “Not uncommon.” We did the second treatment. By the time I got back to her, I was like, “Hey, this is pretty good.” By the time I came back after the third treatment, I told her, “Guess what? We're having a little honeymoon here.” And she was delighted.
Maintaining Intimacy
Some of the people we spoke with were married or in a variety of intimate relationships, and ranged in age. They talked about the challenges they faced maintaining intimacy while dealing with breast cancer and also how “life-affirming” and important sex can be. Alison worried about taking medications that would “trash her sex life.” Sally was amazed by the “extents you have to go through just to have a sexual relationship with your husband.” Amy found that, “things take a lot more time... It takes all the spontaneity out of it.” Carrie said, “It’s hard to carve out that time” to do what was recommended at a workshop she attended on cancer and sexuality. Janet S., who had felt these same concerns, noted that after some time passed, sex with her husband went “back to the way we used to be.”
For Kawanna, rebuilding physical intimacy required patience and persistence.
For Kawanna, rebuilding physical intimacy required patience and persistence.
We just ran into a lot of instances where it was just, there was, the pleasure aspect of it was gone.
For you.
For me which, in turn, he can't enjoy it because it's just like he felt like he was hurting me or just creating more pain or whatever. And, so it, and that's even been a struggle now. Energy has a lot to do with that because even though I don't have the same fatigue from going through the actual treatments, that has now transferred into I'm gone all day. And yes, I worked before this, and it was the same amount of hours, but my body handles it differently.
Yeah.
So, we’re trying to rediscover that. It was very painful for a while, so I'd like to think it was almost like being a virgin again. So, that was hard to get past. So, it's infrequent, but we're working on it.
Alice says sex with her husband is a life-affirming force of joy.
Alice says sex with her husband is a life-affirming force of joy.
I went to a conference on survivorship and it was so interesting because they were talking about the BRCA gene, different treatments and meditation, and they had all just this panel of these totally distinguished medical professionals talking about all of these different things. And the one that I just loved was the gynecologist. She was so good and so, you know, she was just use it or lose it, you know? You just, you have to, so that was one of my lists. I'm going to have as much sex with my husband as I can. He's, I’m going to wear him out.
[LAUGHING]
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For me, it's absolutely like a life-affirming force of joy and being able to be intimate with my husband, who’s been through so much. It's just, I highly recommend making the time and even if, I mean, how many things do you do that you may not necessarily want to do, but you feel so good afterwards? So, think of it that way.
Sarah says she feels less secure in her relationship than she did before.
Sarah says she feels less secure in her relationship than she did before.
Even though my wife is amazing and has never made me feel less than, I struggle with, “Am I still attractive?” So, I struggle with that sometimes.
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It has made me a lot less secure. I've always been very secure in my sexuality and my sensuality. And it's created this instability that I don't, this insecurity that I don’t, that I haven't ever struggled with before. So that's a whole new thing for me. It has, it's forced us to talk a lot. It has it’s forced us to check in with each other a lot more, “Is this OK? Is this not OK? How do you feel about this?” So, it's a lot, it has been a lot of navigating.
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I find myself envious of breasts. You know? Sometimes, like either having them or then feeling like, “oh, maybe my wife wants to touch other breasts because I don't have them now.” So, I'm sort of insecure like that.
Communicating about Sex
Several of the people we spoke with underlined the importance of good communication in maintaining their relationship while dealing with breast cancer. Good communication allowed people to slowly resume physical intimacy and avoid misunderstanding. It also allowed them to explore what else was important to them in being close to their partner.
With good communication, Asante is restoring her sexuality.
With good communication, Asante is restoring her sexuality.
I feel like my sexuality has changed. My sexuality has been compromised, and I'm just building back. Building back. I have very little desire because I don't have any lady parts. But I feel like there are other intimate things that you can do with your partner that have very little to do with sex, and I think what's really sexy to me is great communication. And I feel like we will get back to where we were it's just not now.
Michelle says good communication helped avoid misunderstandings.
Michelle says good communication helped avoid misunderstandings.
And sexuality after cancer is hard enough. But then when you're trying to be intimate again, and you're tired, and your parts are different—my husband used to love to touch my breasts. And for the longest time, he didn't want to again because he was afraid that he was going to hurt me. And I had to sit down and tell him, “Look, you're not hurting me, but I also don't want you to ignore them. I know you feel differently because, you know, I don't have much feeling in my breasts anymore. But I don't want you to avoid a certain part of my body, because that felt even more obvious than just, kind of lightly touching them, or whatever.” It was different, and so we had to have discussions on that.
Nikki finds many different ways to be close with her husband.
Nikki finds many different ways to be close with her husband.
The desire piece of it, didn't have a lot of that.
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Even though I don't have that feeling, love isn't just a feeling. Right? So, it's being very intimate. And with my husband, and we would talk. And we would just, I mean, we, we have forever, we do date nights still all the time. We go on dates. And, I mean, the thing I love is that our kids always see us. Like when we’re on a, when every, if we watch TV, he and I are on the big couch, and we are always cuddling. And when we are in public, we are always holding hands, even at a basketball game. And anywhere we go, he opens my door. Like we're just, we're that tight. And we’re, and like our kids know love is in action, and love is your words. And if I don't, if we're upset with each other, or we don't agree about something, that’s not, it doesn't mean that we're not in love. You know, it’s, it's more than that piece. So, we're still intimate, absolutely. But we now, our foreplay, I guess, is very different. Like we talk about how much we love each other. And we talk about fun memories. And we're very, very silly. I’m very, I should say I'm very silly. So yeah.
Dating after Breast Cancer
Some of the people we interviewed were divorced, widowed, or single when they went through treatment for breast cancer. Those interested in a relationship said the prospect of dating after breast cancer could be daunting. Concerns about their bodies after surgery, the impacts of chemotherapy and hormone therapy on sexuality, fertility issues and, for some, life expectancy presented a variety of challenges. The thought of sharing sensitive information about themselves with someone new often felt risky and overwhelming. As Peggy explained, “I haven't really been looking, because I just don't want to deal with somebody's rejection because I was sick or could be sick again or I don't look right.” While these concerns were widely shared, they could be especially difficult for those who had been diagnosed with breast cancer at a young age. A number of people discovered, once they did begin dating, that new partners were non-judgmental. Casey is dating someone now, but was glad he wasn’t at the time, because he feels it “would've been hard to go through it with somebody, like a partner, because they're worried about you. And then you worry about them, worrying about you.”
Despite her worries, Chelsea successfully returned to dating.
Despite her worries, Chelsea successfully returned to dating.
I was 29, I guess, at that point. And, you know, I'm still single. You know, I had no boyfriend at that time. And that was one of the things I was thinking of, is like, "Oh, crap," like, "Everyone says it's awful, it's painful, you don't want to have sex anymore." And I was like, "I am never going to meet someone with all of this baggage." It's not about the cancer and the fake boobs, but now, like, that's a big part of a relationship. So, to sort of take that away, that was very tough for me. It was very overwhelming to think, you know, ‘How am I going to broach all of this, with any man that I'm potentially dating?’ Still working through that. You know, it's tough.
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I should say that now that I've been on this regimen for two years, I'm handling it a lot better than I thought I was going to. You know, there's still challenges, but it's not like the death sentence that I thought it was going to be - end of my social life or dating life, or anything like that. So, it is manageable.
Precious is amused by questions men asked about cancer and was waiting for the right new “special friend.”
Precious is amused by questions men asked about cancer and was waiting for the right new “special friend.”
I'm single and not married and would love to get married. So, I was hesitant about sharing it in the dating community. But you know, it's very interesting what men think about breast cancer, especially metastatic breast cancer. For instance, recently, you know, I went on a date. And it was very interesting because he didn't know a lot about breast cancer and didn't know anything about metastatic breast cancer. And, people, you know, think it was, I've even been asked, well, “can you have sex now that you have metastatic breast cancer?” And quite frankly, I believe sex is for marriage. So, I mean, it's a non-issue for me at this point in time. But yeah, I said, “yeah, I can have a special friend if I wanted to. But I'm not sure if I want you to be my special friend.” But the point is yes, everything works, even though I have metastatic breast cancer. And so, I just thought that was kind of amusing that, you know, men wanted to know, you know, “can you have sex now that you have,” and so yes, you can have sex. And you can have good sex. I'm trying, to have good sex, but I'm waiting for the right person at the right time. And, you know, quite frankly, I used to date online. And so, I was thinking about dating online again. And it's funny because they even have dating sites for people with cancer that want to date other people with cancer. And I'm like, I don't think I want to go there with that, but at least it's available if I choose to.
Lisa J. says dating again after breast cancer is "a whole different reality"-with increased intimacy.
Lisa J. says dating again after breast cancer is "a whole different reality"-with increased intimacy.
I met someone and now I'm dating someone. It's a whole different reality. Like, I think about dating differently now after breast cancer and all, you know, the other co-conditions. And how you share things, it really forces you to share stuff because you can't hide. And even if I think I'm not hiding something, I'll be perfectly fine not discussing my mammogram appointment. And here's someone who's like, "Well what happened? Did you have a doctor's appointment? Like what's going on? Blah, blah, blah, blah." And it's just so foreign for me because it's just not something I've allowed.
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I had to really kind of get some frame of reference for this because it's just not something I've ever allowed to be done. But I have to also have that conversation with myself and say, "You don't have to do this, but you can also try this." Like, this level of intimacy after cancer.