Dr. Sharon Bober explains that prostate cancer treatment does not mean the end of a satisfying sex life. She discusses how surgery, radiation, and hormone therapy can affect sexual function and desire, while emphasizing that recovery is possible through proactive care, communication, and support. She also encourages couples to redefine intimacy beyond intercourse and reminds patients that treatments, sexual health specialists, and counseling can help them maintain fulfilling relationships after treatment.
Dr. Alisha Morgans:
Hi, I'm so excited to speak today with Dr. Sharon Bober, who's a senior psychologist, a sexual health expert, and the director of the sexual health program at Dana-Farber Cancer Institute. Thank you so much for being here with me today.
Dr. Sharon Bober:
No, it's a pleasure to be with you. Thank you for having me.
Dr. Alisha Morgans:
Well, wonderful. You have a unique set of expertise that I really want to highlight for patients and make sure that they're aware of, because really when we're talking about sexual health after prostate cancer treatment, this can be really challenging and complicated. And many men think that their sexual health days are kind of over after they have treatment, regardless of what that treatment is for their prostate cancer. Can you speak to that? Does a diagnosis of prostate cancer mean that your sexual days are over?
Dr. Sharon Bober:
So thank you for the question. And the short answer is absolutely not the case, but I do think there is an enormous amount of, I would say, mythology and misinformation when it comes to prostate cancer and sexual health. It is absolutely true that many of our treatments, whether it is surgery or radiation or hormone therapy, can have a profound impact on erectile function and sexual function.
But the idea that people just have to pay this high price as the cost for saving one's life is really in overreach because we know that there are many ways where men and couples can get help, can get support, and we know that sexual recovery is available. Unfortunately, I think we're often stuck with the dilemma that people don't get the information they need and people are often left with a number of assumptions, including the fact that their best days are behind them when it comes to sexual function and that there isn't really a way to talk about this.
Dr. Alisha Morgans:
So let's talk about it. We'll focus on several different types of treatment because each of them can affect these patients in different ways. I think the one that is most commonly discussed and considered by patients at least is a prostatectomy and the loss of erections after surgery. Even when people say they're having nerve sparing surgery, a lot of times the erections they have after that surgery procedure are not going to be as robust, not as durable. So is that something that they have to live with? Does that mean that they're really not going to be able to have sex in the future?
Dr. Sharon Bober:
So first of all, I noticed you said how it affects an individual. And I just want to say that from my perspective, when we think about prostate cancer treatment, I often assume that this is an impact on a couple as much as an individual. And that is to say that how we, and this goes in the reverse, when women have cancer, often again, we think of when anyone is in a partnership, it really is an experience that a couple goes through together. And so for men after surgery, to your point, sometimes people are told, "We're going to try to do nerve sparing surgery" and it's not always possible.
Under a best of circumstance, the majority of men still have some erectile dysfunction. And sometimes there are changes that people didn't completely anticipate. So maybe that's loss of length, maybe that's just the experience is not what one is expecting. And I think that in many ways when couples are, I would say, used to a repertoire of sexual experience that they've been engaged with for however many years and things are all of a sudden upside down, right? You can't get an erection naturally or you can get an erection, but not a full erection and not enough for penetration.
So it often means for many couples like, "Okay, so we'll just wait and maybe it'll get better over time." I mean, I think that's the first concern that people often hear about is they think, "Well..." They say recovery will take a couple years. It could take two years or three years, but we actually know that it is important to help to not just preserve recovery, but to encourage. It shouldn't be passive. So the first thing I would say is that just understanding that whatever men can do to encourage blood flow, can get more stretch or elasticity to tissue so that we sort of lower risk of atrophy over time.
Just basically waiting to see if things get better over time is probably not a great perspective. And the other thing is in the context of recovery, however long that takes, many couples often find that they do, that they sort of put a pause on all sexual activity, right? On intimacy in general, because if it's not like how it used to be, often couples aren't sure how to talk about this, how to communicate about this. It's normal for men to feel a sense of loss. It's normal for couples to feel a sense of grief and loss that things are no longer spontaneous in the same way or that men may understandably be concerned about performance.
But this is where I think from a whole person perspective, it's really important to appreciate that good sexual health and good sexual function is not only about erectile function. Right? It's about how one feels, how one feels from the perspective of being a whole person, how one feels when there are body alterations that are different than they used to be. And there may not be a way to talk about that. If you don't feel like a man in the same way, if you're not feeling like yourself and you think your partner, for example, may be disappointed, that might be enough of a reason to postpone or to avoid any kind of intimacy.
And that's a great example because often partners are waiting. Right? So a partner might think, "Well, I don't want to disappoint him." And a partner might be thinking, "Well, I don't want to dissipate her or him." And then all of a sudden there's a kind of a stalemate. And really, so I think the main point here is that there needs to be good communication.
Partners need to be able to identify what they might be missing and how they may be able to sort of find a new repertoire for how to connect. And certainly most importantly, not to assume that because things are different, that they may no longer be satisfying or acceptable in terms of being able to sort of have an experience of pleasure and being able to give and receive pleasure both with a partner or for oneself.
Dr. Alisha Morgans:
So to focus on that couple a little bit, and thank you so much for clarifying. It is definitely not an experience many of our patients go through alone. So thank you for clarifying that. Intimacy can actually be expressed and ours in many different ways.
And so what I think I hear is that just because you can't have an erection, you can't perform that particular part of your intimate routine, there might be other things that you can engage in. And can you speak to those briefly? Just what are you thinking about? Besides communication, what are couples looking to?
Dr. Sharon Bober:
Well, first of all, from the point of view of giving and receiving pleasure, it is important to appreciate that having an erection, although that may have been the experience one has really since going through puberty. Right? If someone has an experience of excitement and arousal, you get an erection and there's kind of a clear order of business. All because that is interrupted or no longer the way it used to be, it does not mean that men cannot have a satisfying experience. For example, me are still able to have orgasm with or without erection.
Some men figure that out and some men don't know that. We don't talk about that. Orgasm happens as much in the brain as it does in the genitals and that just by itself for many people is a revelation. Right? Also, from the point of view of partners, partners may assume that if someone can't get an erection, that they're going to feel badly. Right? And it's interesting how often couples get into the situation where each partner is trying to protect each other. Right? By not approaching. And actually just the opposite is really important. Right?
And I don't assume whether it's sort of same sex or opposite sex partner, it's the same often issue occurs where when a partner is assuming what the other is thinking and sort of thinking, "Well, I just don't want to make anyone feel bad so I'm not going to do anything," you often reinforce an experience or reinforce somebody's individual experience of not being touchable, literally not wanting anyone to approach. When often the case is that first of all, people can partner... or sorry, partners are able to pleasure each other with an erect penis, without an erect penis. Right?
We often don't need to have penetrative intercourse for a woman in order to have something that is sexually satisfying. Clitoral stimulation does not necessarily have to happen with an erect penis. So I just think that the idea here is that if couples are able to communicate about their sexual life and couples are able to potentially expand the repertoire of what is available. Right? Both whether that is sort of between the two of them and/or using sexual aids, which may be helpful, there can be a much richer, expansive perspective on what sexual activity looks like.
Dr. Alisha Morgans:
Well, great. Thank you for walking us through that. One thing that often happens in my patients because I use a lot of androgen deprivation therapy or hormonal therapy is that a men's desire changes. We really do a lot. When we suppress testosterone, we often suppress libido.
And I've had some men say, "I'm not even really thinking about sex anymore." And for some men, that's a major change and that in itself can be very distressing. What would you say to those individuals and how do they engage with their partners and even sort of come to terms with that themselves because that can be such a shift.
Dr. Sharon Bober:
I'm glad you brought that up, partly because as you know better than I, we're using androgen deprivation therapy more all the time. So that is an experience that is familiar to many men after prostate cancer, whether that is short term or longer term. The first myth I just want to speak to is this idea that ADT or hormone therapy will necessarily mean a loss of desire. I say this because sometimes I see men in clinic who say to me, "My doctor told me that I wouldn't have any desire, but that I also wouldn't care anymore so it doesn't matter."
That is actually not always true. Right? I would say that first of all, often men miss having a sense of desire. Right? So what does change or what often changes is a spontaneous sense of desire, which is often in many ways hormonally triggered. Right? Or hormonally charged. But what we also know is that desire is not only biochemical. Right? It is not only hormonal. So it is true for some men there is a loss of desire that feels very pervasive, but that's accompanied by a sense of loss. Right? That's again, accompanied by a sense of grief and thinking that, "I miss missing this."
What's interesting is that on the other side of that coin, we know that desire is an experience which can be cultivated. Right? Unlike, or I should say more like an experience. I was actually just having this conversation with someone and I said, "Well, it's kind of like exercise, right? Where if you don't exercise for a long enough time, you sort of feel like who cares? You get out of the habit." But actually when you start moving your body, you might notice that you just feel better, which can then become sort of somewhat self-reinforcing.
And the more you move and the better you feel, the more you want to do that. I really sort of take that perspective when I think about loss of desire in ADT, which is to say that if the focus can be on how to cultivate an experience which just feels pleasurable, which just allows somebody to feel a sense of curiosity or interest or sensation or pleasure in some way without pressure. And I think that's so important because we know the fastest way to lose an erection, to not be in the mood is to feel like you have to perform and be in the mood. Right?
But if we take the pressure off and really just invite an individual or a couple to explore what feels good from the point of view of sensation, from the point of view of both mind and body, often there is kind of more motivation to want to continue. I'll also say that, for example, often I see with couples, a partner will notice, a man will notice on ADT that although they may not have spontaneous desire, when they make a point or schedule some time to have intimacy with a partner and they get their partner turned on, right? They're able to pleasure their partner, that is a turn on for them. Right?
So often it again, may not have anything to do with erectile function. Right? It may not have anything to do with performance in the traditional sense, but it is still enormously satisfying and pleasurable to be able to turn your partner on, to be able to sort of have an experience that feels close and connected. I really want to acknowledge again, this may not be the same as it used to be and that might be short term or longer term and I want to just acknowledge that. But at the same time, it doesn't mean that you can't have a really satisfying sexual experience with the partner or by yourself.
Dr. Alisha Morgans:
Such great points. Thank you so much. Let's talk about radiation. This is the other primary treatment that I think about with prostate cancer and certainly can have its own unique effects, even if not in the immediate time of treatment, sometimes over time.
Dr. Sharon Bober:
I think that's exactly right. I would say that's probably the biggest piece of misinformation. Often men and couples get the feedback that the option with radiotherapy is going to be less problematic in the short term, well, just less problematic than having surgery in terms of sexual function. And what people often unfortunately do not know is that when we look at the prevalence of sexual dysfunction, specifically erectile dysfunction in the years, three to five years post radiation therapy, it's actually often similar to what we see after surgery prostatectomy.
So it is important for people to be aware of that. Most importantly, so they can be proactive about preserving sexual function as much as possible. So that means that again, making sure that people are getting good blood flow to that penile tissue, people are sort of getting blood flow to be able to again, also preserve elasticity and length and to really do what you can to keep as active as possible as a way to reduce as much as you can to reduce that risk of erectile function as you move over time.
Dr. Alisha Morgans:
Absolutely. And you've mentioned a few times using ways to try to increase blood flow. And I just want to comment before we move on that sometimes we use medications, often pills, Sildenafil and others that we think about as individuals, we think, "Oh, that's a drug for erectile dysfunction." Well, part of the way that it works is actually increasing blood flow to the penis. So sometimes the urologist will actually prescribe those after, actually often now after surgery, sometimes with radiation as a daily treatment to try to again, increase blood flow, not necessarily just as needed with erections.
Dr. Sharon Bober:
Exactly. So I think we have growing understanding and data to show that whatever we can do to get rich oxygenated blood flow to that tissue on a regular basis is going to be helpful really for sexual recovery and for good penile health over time. So I would say that it's certainly possible to think about using one of the PD5 inhibitor drugs.
Again, often sort of low dose on a regular basis with or without sexual activity. But it also makes sense for men to be thinking about masturbation, self-touch, just in terms of being able to again, get blood flowing and nerves firing and to do what you can to keep that tissue healthy. It's like exercise for the tissue. So that makes sense.
Dr. Alisha Morgans:
Absolutely. So you have been so helpful in really giving us the basic primer on how to think about sexual health after prostate cancer or while you're living with prostate cancer. But I think it's going to be important too for people to be able to engage locally with clinicians who might be able to help.
And one thing that is distressing that we've sometimes heard is that patients don't even know necessarily that there are experts who can help them with sexual function in their own neighborhoods, in their own backyards, perhaps within their healthcare system. What would your advice be?
Dr. Sharon Bober:
So again, important point that often when we don't know what we don't know, it's like how do you reach out and access resources? I would say first and foremost, I'm just delighted that we now have a growing number of online resources like this. Right? So just that it's not something that now there's more online than ever, just allowing people to have a bit of a roadmap for where to go. In terms of their own community, I would say that finding a urologist who has specialty expertise in sexual medicine is often the kind of go - to person for thinking about specifically the kind of medical intervention that may be useful.
So whether that's a medication that's taken orally, whether that's a medication that may be directly delivered to that penile tissue, that person to go to there would really be a urologist. And then I would say in addition, often it's really not just about the mechanics. Right? It's also about finding the kind of coaching or support that men and couples often need to be able to figure out how to put the pieces together and about how to communicate about this and really use these sexual aids.
So whether that is a psychologist, a social worker at the hospital, whether that's a sex therapist, I think there are a number of people who are again, working in conjunction with the sexual medicine folks to kind of really take a whole person perspective and often give, again, individuals or couples the kind of support and coaching that is often really instrumental so people feel a sense of confidence and confidence about how to use some of the sexual aids that are available and also how to communicate about this with a partner.
Dr. Alisha Morgans:
Absolutely. Well, thank you so much for going through all of this. It was a whirlwind, I have to say, but so helpful for our patients who are listening and certainly their partners. I really appreciate your time and certainly appreciate your expertise.
Dr. Sharon Bober:
It's a pleasure to be here. Thank you again.
This interview was produced with the generous support of Dana Farber Cancer Institute