Talking To A Partner About Sex After Breast Cancer

This podcast is made possible, in part, by Pfizer.

Welcome to The Breastcancer.org Podcast, the podcast that brings you the latest information on breast cancer research, treatments, side effects, and survivorship issues through expert interviews, as well as personal stories from people affected by breast cancer. Here’s your host, Breastcancer.org senior editor Jamie DePolo.

Jamie DePolo: Hello, as always. Thanks for listening. Many people struggle with being intimate during and after breast cancer treatment. Surgery can change the way you look and feel about yourself, as well as change the sensations your breasts feel. Hormonal therapy can lower your libido and make sex uncomfortable. You may be afraid that having your breasts or other areas touched will be painful, and you may be fatigued and feeling exhausted. Talking to your partner about all this can feel overwhelming.

Our guest today is Dr. Stephanie Ross, a clinical health psychologist and the founder and director of Illness Navigation Resources. She’s going to help us break down this complex topic, and offer tips on how to start a conversation with your partner about sex. Dr. Ross is also an assistant clinical professor of psychiatry at the Feinberg School of Medicine at Northwestern University.

She’s especially interested in helping patients and families with a genetic mutation linked to cancer, particularly breast, ovarian, and colon cancer, as well as Lynch syndrome.

Dr. Ross, welcome to the podcast. This is such a sensitive topic. Thank you so much for helping us.

Stephanie Ross: I’m happy to be here, Jamie.

Jamie DePolo: So, to start at the very beginning, with just talking about sex and intimacy, just the talking part is really uncomfortable for a lot of people. So, if they can’t talk about it, then they’re never going to be able to ask for what they want and what they need. So, how can people get more comfortable just talking about sex?

Stephanie Ross: Well, you make a great point. It’s very ironic that so many people struggle more talking about sex and intimacy than actually engaging in sexual activity. So, the basis for most great or even good sex, in general, is communication. Not an easy task, for many, especially in the context of a current, recent cancer treatment and recovery. The roles in a relationship have often changed, and that makes this conversation even harder.

We’ve sometimes divided roles into patient and caregiver. So, there is often a disconnect between what might have been a good sex life, it has been medicalized in some way. So, getting back to just reestablishing being a couple, being partnered, and bonding in ways outside of the bedroom. So, I think the most important way, in terms of getting back, or even getting close to being able to talk to each other about something that might be so private, and might have been something you just did and never talked about, even in the context of a very long relationship.

The most important advice I can give is to recreate the bond, and to build the bond between the partnership, and this is done, usually, through non-sexual activity. It is simply taking the time, after a cancer diagnosis, where all things besides surviving, treatment, making sure, perhaps if you have children, that your kids are okay, that you keep your job, that you don’t default on your mortgage, all of the things that come with cancer and its aftermath, oftentimes, it’s the relationship that has completely been on the back burner.

And so, it’s really important to get back to building that bond. And that can be done in many ways, and we have to understand where patients and families are at. Building a bond does not have to be complex. It can be as simple as committing to have 30 minutes together alone, uninterrupted time, and it does not have to be physical. It can be watching a show together, exercising together, taking a drive together, taking a walk together, turning off our phones and our computers and just reestablishing that connection as partners. I think that’s really critical.

Jamie DePolo: That makes really good sense. I’m curious, though, what happens if the partner is really uncomfortable, too, and say the person who’s been diagnosed gathers enough courage, enough education to bring it up, and the partner just says, no, I can’t talk about that? How do we deal with that?

Stephanie Ross: Well, we are fortunate to live in an era where we have so much access to expert advice, and I call this indirect communication. So, while we may not be able to talk about this with our partner, we can certainly share resources, and we can send a link to an expert who’s talking about this subject, and there is so much written about this topic. So, it may be sharing a link. It may be sharing a book. It may be sharing a podcast, such as this one, in an indirect way of just acknowledging that this is an issue.

So, we don’t have to start with sitting down and talking face-to-face about sex, especially in the context of relationship where that was never, ever part of the sexual relationship.

Jamie DePolo: That’s interesting, that’s very good, and I’m so old, it reminds me of when people would write into advice columnists, and then cut the clipping out of the paper and put it on whomever that they wanted to talk to about the subject, but couldn’t bring it up, put it on their dinner plate, or put it on their fridge. So, it’s kind of the current version of doing that.

Stephanie Ross: And for many couples, it’s easier to text or email than it is to talk face to face. So, even if you want to directly address the topic, sometimes, even if you’ve been in a longstanding relationship, communication that’s hard to have in a face-to-face context, we have these electronic methods to use, as tools, not as the sole way of connecting.

Jamie DePolo: Right.

Stephanie Ross: Maybe as part of the warm-up.

Jamie DePolo: Got you. This topic is so huge, and I guess I’m wondering, so, say somebody’s like, okay, I’m going to do this. Does it make sense for them to kind of think about what’s important to them first, and like, focus on one or two things, because I feel like once the conversation starts, it could be a ten-hour conversation, and obviously, that may not be helpful to everybody, because it would be, like, too much all at once. So, is that something that the person who wants to bring it up should kind of think about, too?

Stephanie Ross: I think it’s a series of conversations, and a series of conversations that begins with foundationally reconnecting, talking about other things, and really working up to these issues that may be much harder to talk about. So, the expectation that we’re going to sit down at this designated hour, and we’re going to hash out all the details of our sex life, is really unreasonable for most people, and probably not the most effective. Most long-term couples have what we call a sexual script.

We may be conscious or unconscious of how that works, but sometimes a good example of this is, it may start with a subtle touch, or a nod, or it may be it’s Friday night or Saturday night, whatever the usual night of the week is. There may be a certain time of day, and it may go in a certain order. And when you have a cancer diagnosis or any illness, or any life disruption, frankly, it’s time to put that sexual script away, and create a new one, or modify what already exists.

Jamie DePolo: Okay, that makes sense. That make sense. Again, since the topic is so large, the way I thought we might approach this is, I’ll bring up some of the issues that have been mentioned the most in our community, and maybe you can offer some tips, or some advice on how couples might deal with these issues that you’ve seen in your practice. And if I’m missing one that’s really obvious based on what you’ve heard, please let me know.

But I know one of the big ones is body image and feeling unattractive, and I don’t look the same as I did before, and perhaps the partner was, you know, if somebody’s had a mastectomy or a double-mastectomy, maybe the partner found the breasts very attractive, and now the breasts are not the same, or they’re not there anymore, you know, depending on what kind of surgery anybody’s had. So, what are some ways to work through that? How can people work through that? What tips do you have?

Stephanie Ross: One tip I have is that we have to remember that we are often operating against a cultural norm that invalidates those realities. They’re very real for the patient. Their body is not their own. There’s grief involved in losing body parts. Two-thirds of cancers in women directly affect sexual organs. So, losing breasts, breasts are a sexual organ, so if nipple-play was a large part of your sexual script, or something that you both enjoyed, and it’s not there anymore, we have to acknowledge that.

And our culture oftentimes does such a disservice, because what do we say to our friends and family members who are going through breast cancer that’s radically altering their body? They say things like, oh, I love the shape of your head, bald is so beautiful, you pull it off so well, or a woman who’s had a double-mastectomy and reconstruction, they’ll say, oh, your breasts are so perky, I wish mine were like that, too. So, it's really, does a disservice, and invalidates what a person may be feeling, and also what their partner may be feeling.

So, this is something that does not necessarily have to be worked out in the context of a couple. So, we’re talking about how to have these conversations as a couple, but what really might help is to have these conversations individually. So, a patient and a partner may have these conversations separately, and perhaps with a counselor, with a therapist, in a support group, somewhere safe, where they can have their feelings validated in some way, and they can recognize that a lot of this is universal feelings, and that they can be comfortable enough, having processed it on their own, to bring it up to their partner.

But you know, when we talk about body image, feeling unattractive, it’s really important for the patient to work on ways to restore the feeling that the body is not the enemy. We think about it, our bodies, if we go through a serious illness, are the enemy, and sex in and of itself is one of the greatest joys that our body can produce. So, this works against each other.

Jamie DePolo: That’s true. That’s true, I never thought about it that way, but that’s very true.

Stephanie Ross: Yeah, so, you know, in terms of body image, it’s the recognition that things are different, and then working with what is there, and what will help with that, and there is no shame. I’ve worked with so many patients who are more comfortable wearing lingerie, and they may cover their breasts initially, during sex, and that makes them more comfortable, and can really take away some of their feelings until they can build back, or not build back.

And this isn’t always a bad thing, you know? When you’re in a long-term relationship, some form of spicing it up was often indicated well before a breast cancer diagnosis. Other ways that, you know, we can help women to restore their body image is by seeing what the body can still do. So, that’s why things like exercise, and we have so many wonderful resources for exercising safely post-mastectomy, post-radiation, with lymphedema, but showing the body’s power, that it can still do things.

And that can help one to feel better, but I have patients, and I have seen many women who have never had their spouses see them without their wig, without false eyelashes, without their top on, and it’s really a personal choice. We should not stand in judgment. These are some of the most wonderful, meaningful relationships that I’ve witnessed in my career. So, whatever works for women, in terms of getting that feeling back, but acknowledging that it is there.

And again, it doesn’t have to be this big talk, and the partner oftentimes will default into, I love you anyway, I love your body however it is, and the patient who’s not feeling that way themselves completely will just turn that off.

Jamie DePolo: Okay.

Stephanie Ross: So, a partner and a patient are not always in the same place at the same time.

Jamie DePolo: And is it kind of up to the partner to modify, adjust, to sort of get to the same place as the person who’s been diagnosed? Is that helpful, or can it go on if they’re both in these different places?

Stephanie Ross: I think it really depends on the preexisting relationship, and again, I will go back to rebuilding the bond, and really taking this opportunity to sort of reset, and reestablish a relationship. I mean, there are many relationships, we know, that do not survive a serious illness. And so, really committing to the relationship, beyond the bedroom.

Jamie DePolo: Okay. Another big one I know, and I’m kind of going to put these two together, but maybe they shouldn’t be, is painful sex. A lot of women who are taking hormonal therapy, like tamoxifen or an aromatase inhibitor, there’s painful sex, and then there’s also loss of libido. So, and I kind of put them together because I know that the hormonal therapy medicines can cause both of those things, but there can be also other contributions, like, just being exhausted is certainly not going to make you feel very sexy. 

So, and maybe I shouldn’t put them together, so, let’s talk about painful sex. Like, what can people do, because it’s very hard to, I would think, for somebody who’s, you know, just finished treatment, and sex is painful, and their partner’s trying very hard, and they feel like they’re hurting them. So, this, to me, seems like a very sensitive and sort of fraught topic.

Stephanie Ross: It is, and here’s the place where communication is really key, so that it can be seen as a temporary, perhaps temporary place. Where a lot of couples run into trouble is they try it once, it didn’t work, and we’re never doing that again. I don’t want to hurt you, I don’t ever want to be perceived as hurting you, or the person who is feeling pain with intercourse, perhaps, they will be avoidant. When something hurts us, the brain automatically shuts down and says, I never want to do that again.

Jamie DePolo: Right.

Stephanie Ross: So, really, where we start is with education, and learning to speak up with our healthcare team. Many of these symptoms can be treated, and in an ideal world, we hope that our healthcare providers bring all of this to our attention, that you may experience, besides hair loss, nausea, loss of sensation, these things, but that our teams are also talking to us about things that are important to quality of life, like pain with intercourse.

So, having the conversation with your healthcare provider, and that could be your oncologist, it could be your gynecologist, it could be in the context even of a support group, or…it’s really important, because there are many things that are now available, and tested, and safe. And again, this may have to make you change up your sexual script, if you need to go slow, or you need to stop, or you need to use a certain kind of lubricant, or you need to build up to intercourse, this may change.

But it really starts with being educated. I mean, some of the medications that we actually use, not just the aromatase inhibitors and tamoxifen, but we also talk about things like antidepressants, commonly prescribed to help with the anxiety and depression and management of mood, that’s so critical during, after treatment. These have sexual side effects in and of themselves, such as…they may. Not all of them do, and not everyone experiences them, but simply the knowledge that this can happen, and that there are steps that we can take, that your healthcare team can take to minimize that.

So, it’s really about everyone being more comfortable with the conversation. In my field, there’s often called a doorknob conversation, where you will have a wonderful session with a patient, or if you have a visit with your gynecologist, and go through, is everything okay, and the checklist of everything, and the level of shame and embarrassment that some people have around this issue, they wait until they put their hand on the door to open the door and leave, and then they’ll turn around, and they’ll say, one more thing, instead of this being a primary thing.

Jamie DePolo: Okay. So, we have to have the courage to bring it up, and as you said, there are strategies, there are lubricants, there are moisturizers, there are different things that people can try, that can help. And I’m also wondering, you know, if maybe, could you not have penetrative sex, and would that be okay, too? You know, is that a good substitute? I don’t know.

Stephanie Ross: That’s a hallmark of sex therapy, is really, you know, culturally, penetrative sex is the goal. That is how we have been socialized, and there are so many other ways of both giving and receiving pleasure. There also are things like hand-holding, and foot-rubbing, and scalp massage, that can be inherently pleasurable, and build the bond, and work up, ultimately, to perhaps more of maybe what you used to do, or how you used to operate.

This is really an opportunity for couples to pause and explore, and it shouldn’t take a cancer diagnosis to do that. We’ve never lived in a time where we have more access to sex education. So, you know, there are wonderful sex educators, and some of them work in boutiques that sell sex toys, and lubricants, and they are phenomenally educated to teach patients and their partners. So, being open to…maybe you’re not open to talking to your doctor, but maybe you have the courage to walk into a boutique that caters to somebody needing this kind of knowledge, cancer or no cancer.

Jamie DePolo: Sure.

Stephanie Ross: And we’re also able to avail ourselves of wonderful ways of educating ourselves through podcasts. There are a couple of podcasts that…well, there are many podcasts that deal in the area of sex, and love, and relationships. So, two that come to mind are, there’s a podcast called Sex With Emily, and she’s incredibly popular, and she’s incredibly educated, and perhaps on a drive, just popping on a podcast, wouldn’t recommend it if you have young children in the car, but setting the scene, setting the tone, opening up a conversation about…and one thing that Emily does very well is talking about just that, non-penetrative sex.

And so, there are ways to start this conversation, and there are people who can help you to do that.

Jamie DePolo: Excellent. All right, so, let’s go back to loss of libido. And to me, that seems really tough, because, you know, as you said, the brain is a sexual organ, and if the brain is like, I don’t want to, there’s nothing going on, how do you overcome that? That seems really hard to me.

Stephanie Ross: It is very hard, and it can take a lot of work, and it also is emotionally fraught, because if one partner has a loss of libido, and this is not specific to breast cancer, it can happen with aging, it can happen with other types of cancers, in both men and women. It can happen with menopause, whether it’s surgical menopause, chemo-induced menopause, or just plain old menopause. Loss of libido can also be caused by massive amounts of stress, and cancer is inherently stressful in all that comes with it.

So, really trying to pinpoint where is this coming from, being radically honest, and again, this is something that sometimes is best understood in an individual counseling context. Discussing where it might be coming from, whether it is something that we would consider more organic, like a side effect of a medication, or something that may be more induced by stress and emotional things. And so, and then, building back up. So, first finding out, are there things that are possible that can increase libido?

And some of those kind of things can be medications. Some of it can be testing out, and that may be through masturbation, or through things that maybe hadn’t really occurred in the context of a long-term partnership, to really explore why, why what, because a lot of people who complain of loss of libido are actually thinking about the trauma of having, perhaps, painful intercourse, and one fuels the next. And so, really being able to identify what is, what is causing this. That really can lead to a better treatment, if there is one.

Jamie DePolo: Okay. Okay. That sounds good. So, I’m also, I’m going to group a couple here as well, because I feel like they go together as well, fatigue, and then also, you’ve mentioned a couple times anxiety, depression, the inability to relax. So, all those, I’m kind of putting under you’re tired, you’re stressed, sex seems like the last thing you want to do. So, how do you, like, how do you explain that to your partner, that, you know, I’ve got all this stuff going on, or how do you…and once you’ve talked about it with your partner, like, how do you overcome that? I mean, it seems like those are things that are just inherent to any cancer diagnosis.

Stephanie Ross: Absolutely. The cancer diagnosis, and in the survivorship. Also, very common pre-cancer, just because a cancer diagnosis may heighten this, but in the context of our busy lives, these things may have been present before. So, again, it’s really important to sort of parse out what it is that is preventing the interest, and if it is something like fatigue, we often talk about having to change things up, and to modify what our sexual schedule is.

Most people have a time of the day that they do feel most energetic. So, if fatigue, and fatigue is a major side effect, and fatigue does not stop the day that treatment ends. So, oftentimes it’s about adjusting expectations first, which is that perhaps a patient has gone through extensive radiation, that on the last day of radiation, oftentimes, everyone expects them to pop up, because radiation is over. But the fatigue, cancer-related fatigue, radiation-related fatigue, post-surgical fatigue, coupled with all of the stressors that life, general life stressors, can make someone actually extraordinarily tired.

So, modifying. If you were a couple who always had sex late at night after the kids were asleep, or it was your bedtime ritual, but now one of you is going to bed very early, and one late, that’s a problem, but it’s a fixable problem. And I’ve treated many couples who were nighttime people who became morning people, who became, oh, the kids are out of the house, and one partner is going to come home for lunch, people. Now, it’s really listening to your body.

It's also knowing that fatigue, cancer-related fatigue is something that can be treated, if needed. So, again, a mentioning, not knowing that this is part of the deal, but also pointing it out to your team, and really emphasizing how it’s impairing your quality of life, because there are treatments for fatigue, such as use of stimulant medication under supervision. Those things can be used, and should be used, when appropriate, which can help.

Anxiety, depression, let’s face it, if we’re not in a good headspace, it’s very hard to want to do anything, right? And so, there are also treatments, psychotherapy, medication, the combination of both, support groups, getting support, actually acknowledging that this is a major symptom, and it can be expected in a good portion of patients and their partners. We forget, it may not be the patient who’s anxious, and depressed, and fatigued. You may have a partner who’s feeling the weight of that, who’s feeling scared, and frightened, and anxious about their spouse’s condition, or has been picking up the workload for, while this patient has been going through treatment.

So, it does work both ways. So, treating fatigue, recognizing fatigue, recognizing the emotional impact, and then setting aside time to be close, because that is one of the things that actually can help mood. We know this, that connection, that bonding, that engaging in pleasurable activities, whether they’re in the bedroom or out of the bedroom, are some of the biggest mood-boosters that we have. The hard thing about a medical diagnosis is that you are not only dealing with physical symptoms, but often timed you are unable to participate in the very things that give you pleasure. So, reinstating some of those things, slowly, is really important to healing.

Jamie DePolo: Okay. Now, what about loss of sensation in the breasts? I’ve talked to several, a number of women, more than several, and I think part of it was that it was unexpected for them. Their surgeon, or their oncologist, nobody really talked to them and explained that this could happen, or was likely to happen, and if that was something that gave them a lot of pleasure during sex, it was all like, whoa, how do I deal with this?

So, you know, obviously, you can talk to your partner about it, but are there tips, or things that can help?

Stephanie Ross: It really, first is acknowledging, and grieving, to a certain extent. Not staying there, but that this is no longer an erogenous zone for you, and it was, and it could have been very important, you know, in terms of sensation, and in terms of a major source of your pleasure. And so, it’s really acknowledging that, and then developing a workaround, and changing the routine, and figuring out what does work.

Well, you can always acknowledge, wow, I have lost a sex organ. I have lost a major source of pleasure, and that can be devastating. We’re very focused as a society on how great reconstructed breasts can look. If a woman chooses reconstruction, we’re not focused…there may be a cursory mention of, well, you won’t be able to breastfeed. 

Jamie DePolo: Right.

Stephanie Ross: But oftentimes, nobody talks about what that feels like, not only to lose one of the most sensitive areas for a lot of women, and it may be part of the sexual script that has developed with a couple, but also the feeling of loss of sensation in general is terribly uncomfortable, that, you know, feeling numbness. A lot of women complain of just general numbness anywhere in your body. It doesn’t have to be in your breast, but anyone who has a numb lip, it’s uncomfortable enough.

So, it is, you know, acknowledging, and then working around, and figuring out what does still work, and maybe even discovering something that you didn’t even know could work, that’s different for you, and that’s where the education really comes into play, is really what I would call expanding your repertoire, and that is easier to do now than it ever was, you know, whether you’re visiting a store, or, that’s dedicated, with sex educators who can help you to buy products, and things that might help to compensate, or to give you new areas of pleasure, or new ideas.

But we also can purchase lots of things, and get educated by using the internet. And so, for people who are less comfortable publicly going out and buying something, they can order from the comfort of their own home. And that is really helpful, but you know, I’ve been pretty wonderfully surprised that, at least where I live in the Chicago area, they sell sex toys at Target.

Jamie DePolo: Really?

Stephanie Ross: Yes. Oftentimes, they are locked up, which can be prohibitive…

Jamie DePolo: Right.

Stephanie Ross: …well, because they’re embarrassed.

Jamie DePolo: Right.

Stephanie Ross: This, to me, as a sex educator, is amazing. It’s no longer shameful, and no longer has to be something that you order, that is something that you, you know, should be worried about anyone seeing, and it makes me happy to walk into Target and see a huge selection of lubricants and vibrators right on the shelf. It’s taken something that used to be hidden and shameful, and brought it right into the mainstream.

Jamie DePolo: That’s great.

Stephanie Ross: Gives me a lot of comfort.

Jamie DePolo: Now, what about if somebody has a partner who is afraid to touch them? It would be hard not to take that as a rejection.

Stephanie Ross: Of course. Really, the key here is communication. And so, it is the person, you know, who may be the patient may have to ask, I’m wondering, be curious. Instead of being punitive, be curious. I’m curious. Are you scared to touch me? Are you scared you’re going to hurt me? Are you, in some way, is it hard for you to see my scars? And not everyone is okay seeing scars, and that shouldn’t make them bad.

It makes them human. So, you know, really being able to ask, and wondering in a curious way, not a punitive way, can really help to start that conversation, and you may find out things that you never knew. I mean, this is really common among pregnant women, where, you know, the woman might be very in tune with what’s safe and what’s not safe because they’re the one carrying the pregnancy, but oftentimes partners are absolutely terrified. 

What’s this going to do to my wife? What’s this going to do to the baby? So, it really has to do with asking the question, I’m wondering what’s going on, and it may be that they’re frightened of hurting the person. It may be that they don’t feel connected. It may be something that they’re less conscious of, like, you know, I see you as a fragile individual in general, I don’t want to ask you for anything else. So, really, you know, trying to communicate.

And again, as we spoke about in the beginning of our discussion, perhaps that’s the time where you can also provide them with some literature, or some links, or some information to disarm them in that way, can be very disarming.

Jamie DePolo: Okay. Yeah, because I was going to ask if you treated any couples that way, where the partner was like, you know, I’m very scared, I’m very scared to touch, and how that can be overcome from the partner’s viewpoint. It’s like, I’m really terrified I’m going to hurt you, or you’re fragile, or as you said, I feel guilty about asking you even for sex, because you’re going through so much. I guess I’m wondering, even if the person who has been diagnosed and treated says, no, it’s fine, I’m fine, what if the person just, the partner can’t get over that? Are there tips for that?

Stephanie Ross: It’s a process. This is not one conversation, and it isn’t one invitation to join me in the bedroom. This is a series of conversations, and what we spoke about earlier, which is the build-up is sometimes really just starting with hand-holding, snuggling, touching, scalp massage, not things that could be interpreted as anything more than that, and being okay with that, and asking for that. You know, I’m wondering, oftentimes if someone’s recovering from surgery, they are completely sleeping on the other end of the bed. They may be sleeping in a recliner chair for months, and so, you know, they’re sleeping on the other end of the bed, with the pillow fortress, just to get themselves comfortable. That’s not inviting, in terms of intimacy and touch. It separates, you know, what maybe used to be the place. So, even changing the environment, getting out of town, going to a hotel for a night, without the expectation that we are going to a hotel to restore our sex life, right? Really changing it up, and working up to those things, but with the acknowledgment that things have changed.

And a denial of that is really more dangerous than anything, and people don’t feel safe, oftentimes, acknowledging that, yes, things have changed. My body has changed, your body has changed. Our levels of energy, our levels of being able to perform may have changed. It may be temporarily, it may be permanent. There’s been losses, but really an acknowledgment of that. And I really do recommend that, you know, we can be very focused on fixing a couple problem in couple’s therapy, but oftentimes, couple’s therapy is so much more effective when both individuals have worked individually, and really been able to express, because in the context of couple’s therapy, people are often very fearful of speaking their mind, even with a therapist present.

They’re scared of hurting the other person. They’re scared of saying something that will be forever devastating. So, being able to socialize those things and be radically honest in the context of individual therapy can really make couple’s therapy that much better.

Jamie DePolo: Okay. Well, from my viewpoint, those were the biggest issues I wanted to cover, if that’s okay with you. From what you said, it sounds like the two key things for this conversation, when you’re going to talk to your partner, is honesty and education. Sounds like those are…and rebuilding the bond, as you said, but going into it being very honest with yourself and with your partner, and also educating yourself about what’s going on with you, what’s going on with your partner, and then being willing to try new things.

Stephanie Ross: Absolutely, and doing the work individually to really know where you stand, not just you as a partner. I always say if you were learning to play tennis, you would probably learn to, how to hit the racquet with the racquet, how to hit the ball, what the right stance is, what you needed to work on to get the ball over the net, and then you would go and play with your partner. When one partner is a tennis player and the other isn’t, when one is an expert and one is a novice, and they go out to play together, it often goes very poorly.

Somebody ends up frustrated, somebody ends up feeling inadequate, so, really doing the work yourself to get in touch with what are the barriers preventing me from talking about it, what are the barriers preventing me from wanting to engage? What might work for me being able to know for you what actually might feel good, and then being able to tell your partner that, doing the work individually. So, then, you can both come to the tennis court together.

Jamie DePolo: I like it. I like that analogy, that’s good. Now, I have a question about timing. Is there a best time to bring this up? I am assuming, just because this is the kind of person I am, because I don’t like to wait till things are very bad, I would think earlier is better, but I don’t know if that’s true. Like, is there a best time, or does it really depend on the person, and the relationship, and all that?

Stephanie Ross: I think early and often is really, you know, putting everything on the table, there is so much involved in a cancer diagnosis, so much disruption to the family system, to life in general. And the partner relationship often takes a back seat to all of that, so, really putting it right up there on the agenda, and couples will resist this, you know? If you ask the majority of people who have children, who have come into my office, the only thing, and the most important thing to them, besides maybe getting ample medical care, is, what about the kids?

Very infrequently, and mostly in the context of much older and mature relationships, where the kids are long gone, it’s, what about my spouse? What about our sex life? This seems to take a very huge back seat. How is this going to affect our relationship? Not many people are talking about that. And so, putting the relationship right up there with kids, money, logistics, household, is really important. And so, it’s a series of conversations, but putting it right out there, here are some of the side effects that they have said to me in my, you know, oncology education.

And oftentimes, have your partner present for the appointments, so that you can ask the doctor, the nurse, you can ask right there in front of your partner, so that you don’t have to start this conversation. So, most patients are a little bit educated before they go to a reconstructive surgeon, before they start chemotherapy. They have some knowledge, you know, possibly secondhand, of what might be the issues. But even asking the question, is it safe to have sex?

There are many, many people who think it is terribly unsafe to have sex. So, even if the desire is there, at both ends, it’s a safety issue, and that might be the concern, that no one’s expressed. So, being able to talk about it, just like we’re able to talk about, can I drive? Is it safe to drive? Can I work? Is this okay? So, having the opportunity to have the conversation with the medical professional.

Jamie DePolo: That makes sense. That makes sense. It’s almost like you’re having the conversation, what are the side effects, what are the sexual side effects, how is this going to affect my sex life? It just becomes the standard question when you’re meeting with your oncologist.

Stephanie Ross: Yeah.

Jamie DePolo: That’s a great idea.

Stephanie Ross: And you know, ideally, it should be put right out there.

Jamie DePolo: Right. Right.

Stephanie Ross: You know, the oncologist to the patient. That often doesn’t happen, for time reasons and other reasons.

Jamie DePolo: Sure. Okay, now, my one last question. You’re a clinical psychologist, and you specialize in helping people with cancer, and you’re in Chicago. If somebody is in an area, and they don’t have access to somebody like you, are there other professionals that can help with this sex and intimacy issues, like a sex therapist, just a general counselor? Which kind of professionals would you recommend?

Stephanie Ross: My bias is always toward the professionals who have some experience with cancer.

Jamie DePolo: Okay.

Stephanie Ross: Now, a sex therapist can be incredibly helpful. A sex therapist who has some knowledge of what the sexual side effects of breast cancer and the treatments involved for breast cancer is going to be extraordinarily helpful. So, asking through your cancer center, through the local resources for cancer patients, through the American Psychosocial Oncology Society’s web site to identify mental health providers with some experience in cancer. 

I find that to be overarchingly helpful, and a lot of the psychosocial oncology professionals within a cancer center, or who are referred, the cancer center may refer to these individuals in the community, or to even educational groups in the community, are well-versed in the language of breast cancer and all that it brings. But there are also organizations, and I will provide you with some links. There’s the American Academy of Marriage and Family Therapists, there is the AASECT.org, I mean, there are many resources out there.

And also know that telehealth is the greatest thing that has ever happened to our field. So, previously, when people could not reach experts, they now can, and that has opened up a whole new world for getting just some expert consultation and advice, regardless of location. And some people actually prefer that, especially when talking about intimacy.

Jamie DePolo: Sure.

Stephanie Ross: People having a screen between us is most helpful. So, there are a lot of resources out there. It’s really the recognition that this is super-important, and it shouldn’t be at the bottom of the list, after all of the different therapists that people engage to get back to wellness, whether it’s physical therapy, or personal trainer, or lymphedema therapy, or radiation therapy, but also putting the relationship right out there, doing that is also critical.

Jamie DePolo: That’s great. Dr. Ross, thank you so much. This has been so helpful, and I am so grateful that you shared all this knowledge with us, and I will tell everybody, we will post the links that Dr. Ross is going to send. We’ll post them along on the page with the podcast. So, thank you very much, so appreciate your insights.

Stephanie Ross: Very happy to help. Thank you.

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