Sex and Cancer

Transcript of Episode 2: Sex and Cancer
The Thing About Cancer podcast, Cancer Council NSW

[Series intro]
[woman] The very essence of all cancers is a change in the way that cells divide.
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[man] I remember sitting in there thinking, you know, it’s not happening, it’s not real, it can’t be real.
[woman 2] It’s something that we don’t talk about
[woman 3] This feeling of being overwhelmed − it will get better once you have a plan and you know what to expect and what’s going to happen.
[woman 4] It’s not going to be like this all the time
[various voices] The Thing About Cancer: A podcast from Cancer Council NSW.
Information and insights for people affected by cancer.

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Julie McCrossin: Hello, I’m Julie McCrossin, and today, the thing about cancer is that it can really muck up your sex life. When you’re first diagnosed with cancer, sex could well be the furthest thing from your mind. But over time you might start to have questions about what intimacy will be like during and after treatment.

Jane Ussher: Sex is also something that’s not spoken about in the context of cancer ¬– it’s a bit of a taboo and therefore it’s a really important issue to actually raise and to get on the agenda.

Julie: That’s Jane Ussher, Professor of Women’s Health Psychology at Western Sydney University, and in the course of her research Jane has talked to many men and women about sexuality after cancer, and later in the episode she’s going to answer lots of our questions about sex. We’ll be having a frank and forthright discussion, so if you’re listening right now with kids or you’re somewhere public, you might want to save this episode for later.

Just to be clear, this podcast contains general information only, so we recommend you talk to appropriate professionals about your individual situation. You can also call Cancer Council 13 11 20 if you have any questions.

Before we get back to Jane, here’s David talking about his cancer treatment and how it affected the intimacy between him and his wife.

David: We’re still trying to get back the intimacy as far as the bedroom – and I’m not necessarily talking about the sex, just the pure touch and feel and – I mean, I am talking about the sex, but not specifically, I guess. And for a while there I think we, well maybe I, just put dealing with it in the too-hard basket.

Julie: As you heard at the start ,Jane Ussher from Western Sydney University says that sex is a bit of a taboo. But do people with cancer really want to talk about sex?

Jane: Well, probably immediately after diagnosis, it’s the last thing on people’s minds, but in the long term it can be a major issue, and shortly after diagnosis it can be a major issue if people find out that their cancer treatment has a significant impact on their sex life, which it often does, and they don’t know about it. And what we know is that that actually can have a really big impact on people’s quality of life and on their relationships. Talking about sex is a taboo in many ways in society generally, like we have lots of sex around in magazines and newspapers, in the media, but actually people talking about their own sex lives is a bit taboo. So, actually talking to a clinician or to somebody in your own life about oh my god my sex life is really changed, I don’t feel I can do what I used to be able to do with my partner, actually is quite difficult. So, it’s taboo from that personal level, but it’s also taboo from the point of view of clinicians, and what we know is that many clinicians are embarrassed to talk about sex, are embarrassed to tell people that cancer treatment can affect their sex lives and they don’t know what sort of information to give. So, it can be a topic that’s potentially the most important and, for some people, the most significant negative effect of cancer treatment, but also the most silent.

Julie: And when you say clinician, what do you mean? Does that mean doctor or does that mean other people as well?

Jane: It can be across the board and doctors are actually less likely to raise sex with the patient ironically, and in fact it’s the doctors that the patients want to hear from the most, but other clinicians as well – so nurses, allied health professionals like psychologists, or social workers – all of them can have issues around raising sexuality, but at the same time all of them can be really helpful in providing information, getting sex on the agenda and actually helping people through really difficult changes that can be occurring to their sexuality after cancer.

Julie: You know many doctors may be untrained or just personally inhibited or uncomfortable, so what should the patient or their family members do in that circumstance?

Jane: Well, the most important thing is to be able to raise the issue yourself if you feel your clinician doesn’t raise it. Some clinicians don’t see it’s important. Some clinicians don’t know what to say, so avoid the topic. Some clinicians think, oh it’s not relevant for certain people – so that might be single people who they think aren’t having sex, or it might be people who are older than them. For example, in our research with talking to clinicians about sex and cancer, we found that many said: if someone’s the same age as my parent then I can’t possibly talk about sex with them because that would just be too embarrassing. And some clinicians feel with people from different cultural groups from their own that it’s not an issue they feel they can raise without embarrassment. Or people who are not heterosexual. So, all those groups of people find that they’re less likely to get information from a clinician about sex.

Julie: Can you give me some nitty-gritty examples of exactly how I could raise the topic with my doctor, with the nurse, with the social worker – whoever I’m dealing with while I’ve got cancer – how do I raise the topic?

Jane: Well, it depends on what the issue is. So, let’s take a specific example: so you might be a woman who’s got breast cancer and you’ve had hormonal treatment and as a result of that you’ve got vaginal dryness and that’s actually making it really difficult for you to have sexual intercourse with your husband. So, you might just say to the clinician, I’m finding it difficult to have sex, or you might find, I’ve got vaginal dryness –just really raising it in terms of the factual issues around the body. Other people find that they have changes in terms of their desire or their pleasure during sex, so that you might just mention that to the clinician, to the doctor. If you find it really difficult to say the words – and some people find it difficult to say vagina or to say penis – actually say: things are more difficult in my intimate life with my partner. So, using more general terms.

Julie: And if the person you’re talking to, whether it’s a doctor or a nurse, looks uncomfortable and rushes onto another topic, what’s your advice? What do I do if the person is unresponsive or insufficiently responsive?

Jane: Well, the first thing I’d say is go along, have it written down what you want to get out of that discussion with a health professional and what the questions are that you want to have answers to. Whether it’s specific physical problems you’re having or whether it’s more emotional problems or whether it’s more relational issues in terms of what’s happening with your partner sexually. Go along with those questions in mind and then ask the doctor or ask the nurse – if they’re not helpful and they seem to be pushing it aside, say, “Is there anyone else I can talk to?” or “Is there any written information that you have?” And we know that there’s lots of really good written information out there. The Cancer Council have a really good booklet that’s based on extensive research. In fact we’ve been involved in that research and putting that booklet together. There’s also lots of information you can get on the web, which actually if you just google “cancer and sexuality”, there are other sorts of resources and that also includes the sorts of questions you can ask clinicians. So, you can actually hold (the information). The other thing is to go along with those sorts of booklets to your doctor and say, “I’ve read this, can you give me a bit of information about how that’s going to affect me?”

Julie: Well, that Cancer Council booklet is called “Sexuality, Intimacy and Cancer”, and you can get a copy by calling Cancer Council 13 11 20 or you can read it online – you just go to cancercouncil.com/podcasts and select this episode to find the link. Are there any straight-down-the-line safety issues when you’re in treatment? You know, having chemo or brachytherapy?

Jane: The most important thing is talk to your clinician about this, who will tell you the specific issues for you. It’s often recommended that women after vaginal cancer or gynaecological surgery don’t have sex for at least six weeks. It’s recommended that some men use a condom when they’re having sexual intercourse if their partner’s having cancer treatment. It may or may not be an issue for you, but you really need to talk to your doctor about it. I think one of the issues is that many people fear that you can’t have sex when you’re, when you’ve got cancer or your partner’s got cancer, because they feel they’re going to catch it. And that’s actually not the case.

Julie: Let’s get down to how it may affect your sex life. So, can you give me some of the examples of some of the classic issues that people who have had a cancer diagnosis raise about sexuality?

Jane: Well, cancer treatment can have an effect on your body. So, for women with breast cancer or with cancers that are hormonally treated, it can result in vaginal dryness. If women have a mastectomy, it can result in removal of breasts, it can result in scarring, and that can actually change how people feel about their bodies. For men, cancer treatments often result in difficulties in terms of gaining an erection or maintaining an erection. And for both men and women there are changes in terms of sexual desire, sexual satisfaction. Also cancer treatment can affect people in terms of putting on weight or hair loss or hair gain, which can affect how people feel about their bodies sexually.

Julie: Now, Jane, I’m going to be frank with you, that’s a very hard message to hear, all those problems. What’s the good news about sex and intimacy and cancer. Is there any good news?

Jane: Well, I think there’s very good news, and we’ve interviewed and worked with a lot of people, both people with cancer and their partners, around sexual issues, and what we found is quite a significant number of people say that their sex lives are better after cancer. It’s sort of paradoxical because one of the reasons is that many people can’t engage in the sexual practices that you used to engage in. And what we know is that many adults in long-term relationships start having sex in a particular way, and that’s the way we do it for the rest of our lives. Nothing wrong with that. And it can be quite nice. It can be a bit boring but that’s what people are like. When something happens to you that affects the way your body works or the way you feel about yourself, that can actually result in you finding new ways to be sexual, new ways to be intimate.

Julie: What about when a cancer treatment has affected a man’s ability to get an erection?

Jane: Well, you can have sex and you don’t need a penis and a vagina functioning together to have sex, I think is the first thing to say, and that what we need to do is think outside of that particular box.

Julie: So, example?

Jane: So, you can have other sorts of sex in terms of touching each other, kissing each other. You can still engage in oral sex without having an erect penis, whether you’re the person who gives the sex, gives the oral sex, or receives it. Many heterosexual couples talk about the man learning to give digital penetration to his wife, so his fingers in her vagina rather than his penis. Actually learning to spend more time on sex. A lot of couples have said that before cancer sex was over and done within a couple of minutes. But after cancer we’re actually spending much more time, it’s much more like when we were teenagers, that’s sort of what we used to call foreplay. They’re actually engaging those sorts of practices using sex toys – they’re really easy to get these days. We encourage couples to go into a sex shop because people work in sex shops are really good at giving advice if you’re suffering any sort of sexual problem – and many people we’ve talked to have done that and felt they’ve got permission to do that. But you can also access sex toys through the internet very easily and that can help.

Julie: So, you’re basically saying, open and honest discussion, adventurous exploration, and if this is all new, who does help with this sort of idea? Is it your everyday psychologist, is it your everyday social worker or are there people called sex therapists? What are the sources of help?

Jane: Well, many everyday psychologists and social workers will actually give that sort of advice. If you can, also go and get advice in terms of written advice, as I said previously the Cancer Council booklet has lots of this sort of advice in it. Going along to a sex shop, you’ll get that sort of advice. And there are sex therapists – sex therapists tend to work with people who have more prolonged sexual problems and sometimes problems where there’s an issue in the relationship as well. And what we found is a lot of couples just need permission to actually try and explore their relationship differently. But the key word as you said yourself is communication. The biggest, in a way, sexual tool that you can have with your partner, is to talk to them, to tell them what you want, what you don’t want, what’s different, and to actually try and explore different issues. And we’ve actually researched over a thousand individuals with cancer and we found the key issue in terms of developing a positive sex life after cancer is communication. The second is actually feeling physically well, because if you feel physically unwell you don’t really feel like having sex

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Julie: You’re listening to The Thing About Cancer, a podcast from Cancer Council NSW. I’m Julie McCrossin and I’m talking to Jane Ussher from Western Sydney University about managing the impact of cancer on your sex life. If you have any questions about this topic or you just want to talk to someone about your concerns, you can call Cancer Council 13 11 20. For links to more information or any of the services we’ve mentioned – or to listen to more podcasts – visit cancercouncil.com.au/podcasts. We’ll go back to Jane in a moment, but now we’re going to hear from David again. He’s talking about how cancer treatment changed what it was like to be touched.

David: And I also got to the stage where I didn’t… the sense of someone else’s touch. Sort of I think it was just the pressure on the skin, the pressure like from a hug, although they’re great to have, just wasn’t comfortable, it was uncomfortable – which I mean at the time you don’t realise that’s what you’re doing but because of that I didn’t realise that I was actually pushing my wife away in the intimacy side of things. So yeah, so that’s sort of carried on through to after treatment, basically pushing her away from intimacy, from the touch. I mean, as far as the, I guess, the verbal intimacy was there because she knew how I was feeling. I knew, I think, a fair idea how she was travelling, except for how she was feeling about me not cuddling her, I guess. It wasn’t a priority for me at the time but it’s a bit like if I knew then what I know now, I think I would have pushed through that a bit more.

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Julie: Jane, when people are being treated for cancer, we’re often touched in lots of different ways, some of which hurt.

Jane: I think it’s a really normal experience for both men and for women, and some people also say that their body feels physically much more sensitive all over, so that touch can actually be really quite uncomfortable, and also the way we feel about ourselves can be quite different. The most important thing is to talk to your partner about it and if you don’t want to be touched, to actually say it, or, I don’t want to be touched in a particular way. Some people find that can be touched outside of their clothes, that that’s actually more acceptable than being touched when they’re naked. So that can be one way of starting to have touch again. Or it might be really simple touch like holding hands or it might be being intimate in a way other than a physical intimacy. So it might be sitting opposite your partner and having a romantic dinner, or sitting with your partner side by side on the sofa and watching the TV or watching a movie if that’s the sort of thing you like to do. So, actually finding ways of being physically intimate without that physical touch that we associate with sex.

Julie: And just so important for couples to know this is normal. This is part of how people respond to the challenge of cancer.

Jane: It’s very normal and it doesn’t necessarily last forever. And I think it’s about finding ways of slowly introducing touch again when you feel that it’s okay, and building up to more intimate touch if that’s what you both think that you’re able to. And knowing that you can say no, or you have control over those boundaries of what’s okay and what’s not okay, which means you’re able to actually feel safe in what’s happening between the two of you.

Julie: Can I come to people who might be single or are quite young and not have much sexual experience. What’s our advice to them who really are approaching this challenge, this new journey, without the pre-existing emotional bonds of having shared a life together before cancer?

Jane: I think that is a real issue. And younger people who’ve never had a relationship are particularly vulnerable because they’re not only entering into their first sexual relationship, which is potentially scary for anybody, they’re also having to explain that they’ve got cancer and potentially the cancer might have had an impact on their bodies. And many young people do anticipate that with anxiety, but one of the things to do again is to talk. So, talk to the person who you might be considering having an intimate relationship with.

Julie: Give us an example. What am I saying? I’m out I’m in a café, I’m in a bar. We’ve been out two or three times and things are looking good and I have something really unusual about my body that they don’t know about yet.

Jane: You might tell them – so, I think the first thing is important in terms of what you said: it’s the “two or three times”, so it’s probably not the thing you say on the first day and within the first five minutes of the first date. You’d say it to somebody when you’ve got to know them, and you feel you like them, and you feel like you want to be intimate with them. Now for some people that happens pretty quick in a relationship, so you might need to say it pretty earlier on, but for other people it might be after a few dates, so it would actually be about saying, look there’s something I’d like to talk to you about and that actually a few years ago or a few months ago, depending on when it was, I’ve actually had an experience of cancer. You might find that the person that with you is a bit surprised at that but actually staying calm about it, normalising and then saying: well that’s affected me in terms of, you know, I’ve got a scar on my breast, or that’s affected me in terms of, you know, it might take me longer to get an erection, if it’s a young man. So, actually just being quite commonplace and normal about it. And what we’ve found with individuals who are able to do that, if the person that they’re in a relationship with likes them, they’re generally okay about it.

Julie: So, intimacy, arousal, pleasure, is about relationship and liking a person, and not just physicality. Is that right?

Jane: It is for many people, but I think we also have to acknowledge for some people it’s about sex, and some people want to couple and get into relationship with other people because they want to have sex. And that’s also something that needs to be communicated if there’s changes to the body. We found in some of our research, for example with gay men, who talk to us about how pre-cancer they’ve had a lot of casual sexual relationships, that’s a normal part of their life, a very accepted part of gay male culture, that actually it’s more difficult for them to find a new partner after prostate cancer when it has an impact on their erectile functioning because they have to explain it at the first encounter. So, but many men do do that and many men find that it’s actually okay. And in fact some of the men that we’ve interviewed have said again that their sex life is much better because they’ve developed new sexual practices or they’ve used sexual aids that actually allowed them to maintain an erection for a longer period.

Julie: I’d like to go now to perhaps to someone who has been in a long-term relationship and where the person with cancer may be having advanced illness, possibly even the prospect of early death. What does your research tell us about intimacy, sexuality, sex, in that group of people?

Jane: It’s really important. And when we think about end of life, when we think about palliative care, sex is in some ways even more taboo than it is when people are in a cancer survivorship stage. But what we know is that intimacy is really important. And it might not involve penetrative sex, but it may involve kissing, hugging, touching. It’s really important in terms of people being able to maintain a sense of themselves as a person, their identity as a woman or as a man, and also really importantly, their relationship with their partner. That sense of having something, if they have a partner, having something between them that’s important, that’s personal, that actually is maintained. And I think one of the things that is important in this is also thinking about the partner’s needs, that they’re potentially facing bereavement, they’re facing not having the person that they love with them. So that intimacy is really vital.

Julie: I’ve tended to talk about husband and wife or man and woman but obviously gay people, transgender people, get cancer too. Is there anything particular to say about those groups of people or is a lot of this a common human experience?

Jane: Well, many of the changes are common across genders and across sexualities, but what we do know is that the sexual changes are more difficult for many gay men and they have more sexual anxiety around the changes, more anxiety and stress around the sexual changes. And one of the explanations for that is that sex is more important for many gay men than it is for heterosexual men. Conversely, we know that many lesbian couples actually cope with the sexual changes much better and are more able to cope with it and more able to accept the changes in terms of the woman’s body.

Julie: Look, when someone in a relationship has cancer, it’s often their partner who ends up being their carer, and it can involve intimate physical care that you wouldn’t normally have done before cancer. So, how do you make the transition back to romance when perhaps you’ve been helping someone who’s vomiting or incontinent or goodness knows what?

Jane: I think that can be hard, and it can be hard for both parties, and many of the partners who are carers that we’ve interviewed have talked about that, that not only is it the aspects of care that you mentioned in terms of the physical care, which might be changing a colostomy bag or it might be helping with vomiting, but also looking after someone that they say is like looking after a child. So, when you relate to someone like it’s your child, it’s hard to see them as a sexual partner. But actually finding times and places and ways that you can be intimate with each other outside of that caring context, or looking to a future where you might be able to develop that, I think is really important.

Julie: I just want to ask you about trauma. The impact of the cancer experience for both parties, or the different members of the family and friendship group, can be very traumatic. And for some there’s a kind of “freezing”. So, I guess what I’m trying to raise is, are there some people for whom sex will no longer be part of their life after cancer?

Jane: I think there can be and that’s not necessarily a bad thing. There are lots of people in the community who don’t have sex with their partner, and their relationships are perfectly satisfactory. And if that’s okay for you and for your partner, then there’s nothing wrong with that. And I think my message is not that everybody should be out there having sex all the time, because that would be denying the fact that many people don’t particularly want to, when it’s really not an issue. I think when it becomes an issue is if you want sex and your partner doesn’t, or vice versa, and then that’s something that you have to negotiate, that’s something you have to talk about. And some couples work their way through that and some couples don’t.

Julie: Some women that I’ve met are afraid of losing their partner, that they are physically capable of sex, but they don’t feel like it for quite extended periods of time, and they’re concerned that affection and communication might not be enough to keep their man, if I could just talk bluntly, or their person. Is their reassurance to offer?

Jane: I think there is. And what we’ve found is a lot of women have that fear and they have a fear that their partner won’t desire them anymore, that particularly with male partners that the man will see their body differently and won’t find them attractive. And what we’ve found is that many men are actually saying: I still love her, I still find her attractive, I love her even more in some ways because I faced the thought of losing her. And actually the relationship can sustain the cancer diagnosis, but when you’re dealing with cancer and particularly in the middle of cancer treatment, you don’t necessarily want to have sex. And one of the major issues we found with cancer patients is tiredness. And we did a major survey of over 2000 women with breast cancer and we asked them what was the major factor they felt was affecting their sex life, and it wasn’t vaginal dryness or weight gain, it was tiredness. And when you’re absolutely exhausted, you don’t want to have sex. And also we know lots of partners are exhausted because they’re caring, but that’s the time for people to explore other sorts of intimacy, like being romantic together, like touching, like kissing, that actually don’t involve the physical act of engaging in genital sex.

Julie: As I listen to you, I do feel a sense of optimism, that it’s almost like getting to know each other again. Is it, you know they talk about the “new normal” in terms of when you’ve had cancer, but in a sense one’s sex life is the “new normal”.

Jane: It is, and I think it’s actually about being able to see potential positives in the cancer experience, and that can seem quite challenging to say and I think particularly to somebody who’s early in a cancer journey, to actually say there can be positives in it. But many people talk about having a different perspective on life after cancer because they don’t sweat the small stuff anymore. They can have a different perspective on their relationship and that means some people do leave their partner because they realise they’re not happy with them. But for many other people, they talk about increased relationship closeness, and that can be also involved with increased sexual closeness and increased intimacy or different forms of intimacy.

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Julie: That’s it for this episode of The Thing About Cancer. Thanks to Jane and David for sharing their insights.

If you’re looking for more information, you can ring the Cancer Council 13 11 20 Information and Support Service from anywhere in Australia or go to cancercouncil.com.au/podcasts. If you have any feedback on this podcast we’d love to hear from you. So, leave us a review on iTunes or on our website. If you’d like to subscribe to the show you can do it in Apple Podcasts or your favourite podcasting app.

If you found this episode helpful, you might want to listen to our podcast on coping with fatigue. In that episode I talked to researcher Haryana Dhillon about what is different about cancer fatigue and how you can get your energy back.

Haryana: I think the key thing really is to learn about “pacing”, and pacing is one of those strategies that people can put in place when they are feeling fatigued which helps them to work out essentially how much energy they’ve got in their energy basket and where they’d like to share that around.

Julie: You can hear the rest of that conversation about managing cancer fatigue on our website at cancercouncil.com.au/podcasts.

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The stories and experiences contained in this podcast represent the views and opinions of the speakers. They do not necessarily represent the views and opinions of Cancer Council NSW. This podcast contains general information only and Cancer Council NSW recommends you obtain independent advice specific to your circumstances from appropriate professionals. I’m Julie McCrossin and you’ve been listening to The Thing About Cancer, a podcast from Cancer Council NSW, produced by Jenni Bruce and Miles Martignoni.

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