In January 2019, a doctor diagnosed Dave* with aggressive prostate cancer. The news hit him and his wife of 37 years, Grace,* hard not just because of the struggles of navigating any form of cancer, but because of the serious negative effects this cancer and its treatments would have on their vibrant and valued sex life.
An attempt to surgically remove Dave’s cancer last spring severed one of the nerves to his genitals, leaving him impotent with only a 50-50 chance of regaining natural erections. Within months, it became clear that the surgery had not removed all of his cancer, and that it was still growing. Dave started radiation, which ran through December 2019 and damaged his remaining genital nerve—it's not currently known how long this effect will last. He also started androgen deprivation therapy (ADT), which will run through February 2020, and which “eliminates all testosterone production,” as Dave puts it, killing his libido. The ADT will have progressive, negative effects on his sexual desire and performance, his doctors tell him, for at least the next three or four years. Even if his cancer fully vanishes, his and Grace’s sex life will almost certainly be forever changed.
Stories like this are unfortunately common, not just among prostate cancer patients, but among all cancer patients and their partners. Pelvic cancers of all sorts and their treatments can affect blood flow to, and nerve function in, patients’ genitals, leading to erectile dysfunction, vaginal dryness, and other sensation and functioning issues. Treatments like radiation can also toughen delicate tissues, making them less sensitive and prone to tears, and create scar tissue around the anus and vagina, causing discomfort during certain sex acts. Mastectomies for breast cancer eliminate nipple sensation and can lead to body image issues that affect one’s desire and sense of desirability.
Chemo for any cancer can make yeast infections, flare-ups of genital warts, and STI contraction more common, as well as artificially induce temporary-to-long-term menopause, which often affects libido and lubrication. And almost any cancer treatment, can negatively affect patients’ energy levels, body image and self-confidence, and overall sense of mental health and wellbeing, all of which affect their sex lives. Most of these effects fade within weeks or months of a course of treatment. But some can linger for years, or even for life, depending on the specifics of a patient’s cancer or their treatment.
By most estimates, the majority of cancer patients experience some kind of negative impact to their sex lives during or after treatment. And about one third of all people will be diagnosed with cancer in their lifetimes.
We don’t often hear about cancer’s effects on people’s sex lives because popular belief seems to hold that sex is irrelevant when one is dealing with this disease—that people will be too worn down, too focused on the fight for life, to think about something as trivial as sex. All too many doctors seem to absorb and reinforce this narrative, reportedly deprioritizing discussions about sexual side effects and patients' sex lives during clinical visits, or telling patients that most of their peers just don’t think about or express interest in sex during treatment. Studies suggest only 14 percent of physicians talk to cancer patients about sex, and only 13 percent of cancer patients experiencing sexual issues as a result of their disease or treatment get help from their doctors.
But people with cancer are not sexless beings. Sure, some may choose to sideline sex during their treatments. Many more may not always feel up to sex, and may at times need to lay off sexual play to give their bodies time to recover after a treatment—especially surgery. But even if one is not game for sex, that does not mean that their desire or interest is fully extinguished. A number of cancer patients actually find sex or other expressions of their sexuality a powerful affirmation of their lives and selves during an often all-consuming illness. Many patients say they just need more information and support than they're getting from their doctors or more general medical resources in order to navigate sex while ill.
There are some good guides these days advising patients to, among other things, carve out time in their lives just for sex, masturbate to figure out what works for their bodies now, and explore low-intensity, often non-penetrative sexual play. But most sex advice for cancer patients concerns limiting health risks and potential fertility issues—not finding life-affirming pleasure and fostering a vital sense of intimacy with a partner.
Every experience of cancer and treatment is unique, so there is no single guide to managing sex and sexuality. But often just hearing about how one couple has found a satisfying sex life within an ongoing saga of illness and treatment can be a useful affirmation of the possibility of doing so one’s self. To provide just such an example, VICE recently talked to Dave and Grace, who are using pseudonyms, about their experiences with cancer, treatment, sex, and sexuality.
Dave: I hadn’t thought about how cancer would affect my sex life before my diagnosis. It’s kind of funny because my father had prostate cancer…and he didn’t talk about that kind of stuff at all.
Grace: I did know that prostate cancer created incontinence and impotence.
Dave: Pretty much right after my diagnosis, the doctors were telling us what the effects would be on our sex life. Although certainly I think that doctors tend to, you know…
Dave: Yeah. But from what we were reading, it was clear that no matter what [treatment] route we chose there would be an impact. It would just be a matter of when and how severe.
Grace: At the time of Dave’s initial diagnosis, it was like a period of mourning for us. Our sex life had always been spontaneous and playful and joyful. We knew that his cancer was aggressive and needed to come out. But we [worried about] what our sex life would look like on the other side.
We researched a bunch of things to try to avoid surgery and hormone therapy and radiation… mostly out of concern for our sex life. But after we learned [how severe Dave’s cancer was], surgery seemed to be the best option for a cure, if that was possible, or extended life. If radiation fails, it takes longer for them to figure that out—and if he were to have had surgery after radiation, that would have pretty much guaranteed incontinence for the rest of his life. There are just no good options with prostate cancer, period. None.
Dave: My surgeon was on board with trying to maintain some kind of sex life. Doctors tend to give hope that you’ll be able to get an erection after treatment, whether naturally after a year or more or with different interventions. But he mentioned that, ‘you know, you can have an orgasm without an erection.’ It was like, okay, I’ve never really thought about that. I was kind of surprised.
After surgery, I had to have a catheter in for about a week to allow for healing. But once it was removed, his goal for us was that I would have an orgasm within three days.
Grace: He said our first step would be taking Cialis or Viagra, which probably wouldn’t give Dave an erection, immediately, but would improve blood flow… They don’t want that penile tissue to harden up. And if that didn’t [create an erection], they said, there are shots. And if that didn’t do it, you could have an implant if it came to that. They looked all the way down the road.
Dave: We’ve read that, over the long run, pills and injections become a wear and people end up opting for an implant. Going into this, I couldn’t ever see myself going there. But over the course of our experimentation, it’s like, well, that wouldn’t be so bad.
Grace: It’s expensive. And he’s a few years away from Medicare, which mostly covers it. We’re not at a point of making that decision. But in the back of our minds, it’s not been rejected.
Dave: My perception of Cialis and Viagra had been that they were kind of like magic pills: If worst comes to worst, you just pop one and everything’s fine and dandy. The reality is that these things are not a magic cure for everybody, regardless of whether they have cancer or whatever.
Grace: I had never thought about that, because Dave had never had a problem [with erections].
Dave: I also remember when I was first reading about injections being like, yeah, I don’t think so. But on the other side of surgery, when reality came in, it was like, yeah, let’s maybe give that a shot. But [just getting the dosage of Trimix right] has been a whole learning process. I looked at it, again, like, okay, this is going to be the magic thing—you give yourself a shot and have an erection and away you go. But the doctors say to start out at a low dose because you don’t want to end up in the emergency room with an erection you can’t get rid of. So I did and after a certain point it seemed like my penis should be firm enough for penetration. But I would try to penetrate and the blood would get forced out of the penis, so I wouldn’t be able to. [Eventually] they changed up the formula and I found I was able to have an erection I could have penetration with at a low dose. But the side effect was that my penis just became very achy and it was no fun.
Grace: It kind of defeats the purpose.
[But we didn’t get much counseling on navigating sex beyond erection talks.] They were just like, "okay, try for an erection and an orgasm and hope for the best."
I did immediately buy a book online from a couple who’d gone through this as well. We hated that book. The people were just icky and weird. So I bought another, and one on just straight-up sex.
Dave needed to be walking 10 minutes out of every hour after his surgery as well, so we got in a pattern of walking around the neighborhood. And when we did, all we’d talk about was this.
Dave: Grace was just very open and accepting of our new reality. For one thing, after the surgery, you get incontinent [until you] learn to control your bladder again. We’d read that you can have leakage during sexual activity. So we were prepared. And Grace wasn’t totally turned off by it, which made me feel more comfortable. It was like , if it’s going to happen, it’s going to happen.
Grace: My concerns after the surgery were that Dave would feel emasculated and frustrated and depressed. And that I wouldn’t know when to push and when to back off. But his attitude has been really good. He’s been open to non-penetrative sex and the clumsiness of trying new things.
Dave: Yeah, clumsiness. That’s ongoing. Part of not being able to get an erection is being like: In the past, penetration was a big part of our sex life. I know that’s something Grace is missing. So if I can’t get a natural erection, how do we try to get to a point where we can have penetration—not necessarily every time, but as an option? I was trying to research different penis pumps, looking at vibrators. We were never really into toys and that kind of thing. Looking into that, going to sex stores—it felt awkward walking into those places. But the people there were always very nice and good at answering questions. You quickly learn that you don’t have to feel awkward there.
Grace: Our online searches had been overwhelming. When it came to something like choosing a pump, there were so many different price points, so many crazy claims—some just bogus. And reading the medical stuff, well okay, we don’t have medical degrees, so it was kind of difficult.
Dave: We’ve used a vibrator on each other. We’ve done oral sex more now than in the past… We just do a lot of experimentation and playing around. I found that after surgery using a pump was painful for me—probably because I was still healing. Eight months later, I could use the pump and it wasn’t painful anymore. But you have to use a ring to keep the blood in the penis.
Grace: [Even with the right size ring, which takes time to find,] the base of the penis doesn’t get engorged, so its movement is different. Also, it is colder. That part doesn’t bother me, although it bothers other people. So you have to try to find new ways of having sex that are comfortable for both of you. And there’s an awkwardness because you can only have the ring on for like half an hour. We’d start with foreplay, stop, use the pump, and then proceed with sex from there.
Dave: When I took Viagra, it wouldn’t give me an erection, but it would engorge the penis more. That was helpful. If there’s no engorgement, it’s difficult to do masturbation or anything. I would get into a position like we’d normally be in while having sex, place my penis against her vagina, and rub it. That gives us a lot of enjoyment and brings us back close together with body contact.
Grace: That seems to be our primary go-to right now, because we know it works and we like it.
Dave: [After a lot of experimentation, my doctors] switched me from Viagra to Cialis [which is a daily drug, and they told me to] try my injection mix again back at a lower dose. We’ve found that has kind of been working. I can get an erection that is good enough for penetration [without the pump] but not get achiness. So it seems like we’ve found a good place for that right now. But that took a couple of months. It just takes time. You have to be willing to give it that time.
[But when, after a while, I had to go on] androgen deprivation therapy, our sex life definitely changed again. That cuts down on libido. I think I was more scared of the ADT [because of that] than I was of the surgery.
Grace: Me too.
Dave: The fear was, okay, there’ll be no interest so maybe we’ll just let sex go by the wayside. We vowed to try hard to just not let that happen. When you’re younger, you talk about scheduling sex and go, we can’t schedule it because it’s got to be spontaneous. But we’ve set a schedule: It’s going to happen every three days. If it’s more, great. But we’re at least going to do it every three days just to keep some blood flow going and give us the best shot at some kind of recovery.
Grace: We were laughing about this in the car yesterday—Dave said I seem randier than I used to. I’m 10 years post-menopause. A lot of people assume post-menopausal women have no interest in sex. But I have found that with our increased [scheduled] activity, I have increased desire.
But one of the effects of the ADT is that Dave hasn’t been able to orgasm. After surgery, it was an effort. But he always got there. Then three, four weeks into ADT, he couldn’t quite.
Dave: When we have sexual activity, there’s a pleasant feeling. It’s just never really intense. A few times it seems like I’m on the verge of getting there. But it’s just not happening now.
Grace: It grieves me that he’s not feeling the pleasure he did before. Part of my sadness is that everything works for me and not everything works for him.
I’m kind of vocal. We have children living at home, so that’s not always good. But he’s not vocal. In the past, before all of this happened, I always knew when he was having enjoyment. He had a [physical] response. Now, I don’t know. So I need a lot more reassurance before, during, and after that he is experiencing pleasure from our sex. I don’t want to prolong things if he’s past that point.
Dave: That’s been one of the biggest learning things for me, is to be able to give her some kind of clue and direction. And I’m not really good about it. I’m still learning on that.
But there’s more to our intimate life than orgasm. That’s just not the goal anymore—at least not right now. I’m hoping that once the ADT treatment is done, that will come back.
Grace: The doctor warned him that things are going to get better immediately after the ADT is finished, but because of the radiation, it’s going to go back down over the next couple of years.
So it’s going to be a constant process of experimentation and change for us.
Dave: What we’ve come through so far gives me hope. Even if it comes down to never being able to [get erect or orgasm] again, at least I know now that is not going to be the end of our sex life.
Grace: We do understand that he will probably never get natural, spontaneous erections again. It would hurt me deeply if he wanted to give up [on our sex life] because of that. But having a more realistic attitude makes it easier for us going forward.
One of the things that’s helped us a lot is the fact that we’ve always been close and open. I’ve been shy about trying new things, especially in the beginning of this [process]. But working through the clumsiness of dealing with a flaccid penis, our humor—the fact that we can laugh at each other and not be offended—has been helpful. Just being connected helps.
Dave: We’re still early on in our experimentation. We know the road ahead is going to be a long one. But we have seen the little lights of day, and had some successes. So that has encouraged us.
Grace: We’ve been able to find pleasure. No matter what happens, we still have that connection. We’ll never have what we once had. That’s just the way it is. But what we have is good.
This article originally appeared on VICE US.