Jump To Jump To Transcript A Gay Man's Journey with Prostate Cancer December 17, 2019 Is a gay man’s experience with prostate cancer different from a heterosexual man’s? As a husband, father, prostate cancer awareness advocate, and a man who embraced his diagnosis with remarkable openness, Chris Hartley sheds light on his unique experience, addressing how being gay influenced his cancer journey and the challenges he encountered in regaining his sexual life on track.Listen Transcript Expand All Transcript Jamie Bearse: Hello, and welcome to Prostate Cancer Uncensored, a podcast produced by ZERO Prostate Cancer. I’m Jamie Bearse, CEO at ZERO. This podcast series is about sex. In other recent episodes, we’ve spoken to two heterosexual men about their experiences; one married, and one in the middle of a dating scene.But today, we’re talking with a gay man about his journey with prostate cancer. Is it really all that different from the heterosexual experience? Chris Hartley, who is one of our champions at ZERO, joins me now for an open and candid discussion about this topic. Chris, thank you very much for joining me today on Prostate Cancer Uncensored, I appreciate it. Welcome.Chris Hartley: Thank you for having me. I look forward to it.Bearse: Terrific. Now just a little background on Chris. Chris is a 45-year-old man from Austin, Texas. He’s a husband, and a father of two sons. He does marathons, and he’s a prostate cancer survivor. Chris, we’ll talk about sex and intimacy in just a minute, but I think it’s worth noting first that as we record this podcast, it’s been about two years or so since your initial diagnosis. How’re you doing now?Hartley: That is correct. I’m coming up on my two-year anniversary of my diagnosis in December. Now on the other side of treatment, I think more than anything, I’m just really grateful. You know, on the other side of treatment, and for me, that included surgery, prostate removal, radiation, and hormone deprivation therapy. So, I’ve been through quite a bit in the last two years.But, I’m happy to report that my PSA is now undetectable and stable. I’m very optimistic about my future and I’m thrilled that I’m back on the road to recovery. I feel very fortunate that I had an amazing, amazing support group during this last two years. My friends and family were by my side every step of the way. Everything from making sure that we had food in those early days coming home from the hospital, to a close friend of mine from college coming into Austin to run the first 13 miles of last year’s Austin marathon, which was just a few months following my hormone deprivation treatment. It was really meaningful.I was also lucky to have an amazing group of doctors who answered my endless questions. I’m never short of questions during my doctor appointments. They also just showed unwavering support through my highs and lows over the past two years. Especially some of the lows that I experienced during that hormone deprivation treatment.Then, finally, the support from my ZERO family. I was able to connect with ZERO and meet other prostate cancer survivors through the mentorship program, a community 5K, and of course, the annual summit.ZERO has really helped build a community of supporters, both survivors, and caregivers. I met some amazing people through the organization that I’m sure will be lifelong friends.When I received my diagnosis about two years ago, I couldn’t imagine that I would be at this point in my life. I could say now, I’m happy, I’m healthy, and I’m very optimistic about the future.Bearse: I think that you’re an amazing person that inspires many of our advocates and champions who participate in a lot of our programs. I find you personally inspiring, just already from hearing what you went through.A lot of people don’t know this, but not only do you have to recover from surgery, but you had mentioned going through radiation treatments and that is, I don’t know your specific case, but that’s every day, right. You’re going in getting radiation treatment to make sure that they’ve gotten all of the prostate cancer, right.Hartley: That is correct. It’s several weeks of radiation treatment, daily visits to the doctor. I’m fortunate to live in Austin so it was not that much of a burden on me. I have heard from other survivors that have to drive hours to their local hospital for treatment.I try to stay very positive about my own experience. There’s definitely a lot of opportunities that I had just living where I live, having the support around me that I had, and that’s not always the case. So, that’s why I think it’s important to have organizations like ZERO, where you can connect with other survivors, and really put your own experience into perspective.Bearse: We also have a blog series at ZERO and you had authored, actually one of our most read and most candid blogs we ever produced for Journey to ZERO, which is the name of our blog series. I encourage all of our listeners to check that out at zerocancer.org.But, Chris, I was reading through that, and you had stated in your blog that there was an embarrassment associated with your diagnosis. Why is that? Is that around sexuality, or what is that about?Hartley: You know, I’ve given that a lot of thought, especially as I mentor newly diagnosed prostate cancer survivors. I find that I’m not alone in that initial embarrassment. It’s not embarrassment surrounding the diagnosis itself, so much as it is the potential side effects, which can include things like, incontinence, erectile dysfunction. Even the inability to ejaculate with orgasm can be overwhelming for most men.I think that I would categorize it correctly that most of us did not discuss these topics around the dinner table, right. So, how do we discuss them now? How do we approach it openly with our doctors as we attempt to navigate all of the finer points of what it means to be diagnosed with prostate cancer?How do we discuss them openly and honestly with our family as we’re facing questions of our own mortality at that point? And then, how do we discuss them with courage with our partner? And what the diagnosis could mean for our sexual relationship?For me, personally, what I came to realize is what I was experiencing wasn’t really about embarrassment, rather, it was that I had no experience or context of how to navigate the sensitivity around these topics.I decided to take a very medical approach to discussing my concerns with the side effects of treatments. Because when you think about it, biology is just that, biology. Right, there’s nothing to be embarrassed or ashamed about.What I found was, the more open I was about discussing all of my concerns about various treatments, the more open that other survivors were, the more open and comfortable my doctors became. And if you’re embarrassed or you’re hesitant about discussing these topics, I can tell you from my own experience, my doctors never blinked an eye at my very direct questions. I mentioned that I ask a lot of questions.I was very specific about my concerns. I do find myself fortunate to have doctors that made me feel comfortable discussing these topics. It certainly helped. So, you want to make sure that you find a medical team that you feel like you can communicate to, and that are very open and honest with you and don’t make you feel embarrassed or ashamed.Also, surround yourself with a team that can also navigate your emotional state. There’s two sides, really, I think, to prostate cancer treatment. There’s certainly the physical and medical aspects of the disease. And then there’s also the emotional state, which I know we’ll get into later. But, for many men, it’s the first time that we really call our manhood into question. It’s really about finding that support group that can help you navigate the sensitivity around all of these topics.Bearse: So true. And I also think what I hear you saying, Chris, is that it was helpful to you to think about what you were going through from a very clinical or medical or scientific standpoint. Which really helped take the embarrassment out of the experience a bit or the embarrassment out of some of the questions that you had. Is that what you’re saying as well?Hartley: That’s right. When we first think about the potential of erectile dysfunction, for example, or incontinence, I think as men we are hesitant to approach those topics sometimes because what that does mean about our manhood. It’s the first time, again, that that’s really being called into question.When you take the emotions out of that and realize that it is just clinical, it is biology, you need to ask your doctor about recovery, what to expect, exercises you can do to aid in recovery. I found it easier to have those discussions.Bearse: That’s very great advice for everybody out there listening. That’s terrific. You mention manhood, many men who are going through prostate cancer think about their manhood. I know it’s obviously your experience, too, as you just said. But, is there some perspective that makes it different as a gay man?Hartley: I would say first that I believe there are more experiences that bind us together as prostate cancer survivors, than separate us. But being gay is part of my identity, but it doesn’t define me as a person. Just as prostate cancer alone, doesn’t define who I am.However – and there’s a big however – like most things, our individual experiences can shape our perspective, right. So, how do we manage or navigate different life events, whatever they may be. As a gay man, specifically, my thoughts about prostate cancer and manhood are likely very different than my straight prostate cancer brothers.I don’t think it’s a stretch to say that most men equate their manhood or masculinity with sexual function. With that said, prostate cancer is likely the first time a straight man’s masculinity has been called into question. We start to think, am I less of a man if I can’t get an erection. Am I less sexy or less of a man if I have to wear an adult diaper or urinary pad?As a gay man I had to face questions about my own manhood in the context of my sexuality at a very early age. So, by the time I received my prostate cancer diagnosis, at the age of 43, I’d already come to terms with the fact that my sexuality, my manhood, were independent of each other.I knew going into the diagnosis that I was no less of a man because of prostate cancer. But don’t get me wrong, that doesn’t mean that it was any easier for me. As a 43-year-old man, sex was still very important to me and my husband. As you said at the top of the call, I was also an athlete, so the idea of potentially needing an adult diaper was very intimidating, to say the least.I told myself, regardless of the outcome of treatment, that I would still be the same man that I was before diagnosis. What I want men who are facing prostate cancer to know is that they are not any less of a man because of this disease. Erections don’t define us as men. Sex and sexuality does not define us as men. How we care for those around us and how we choose to battle this disease are more defining attributes of our manhood.Bearse: Right. As you go through this journey, intimacy, I think you just sort of hit on this, but, sexuality and intimacy can be two different topics. I mean, there’s certainly concentric circles that overlap each other, but there’s a lot within that intimacy space that really doesn’t have to do with physical sex that doesn’t go away and probably is even bolstered even more by going through this experience, because you’re drawn closer together emotionally with your partner and your family to some respects. Would you say that’s true?Hartley: That’s absolutely right.Bearse: Speaking of your partner; you have a husband of 20-plus years. First off, congratulations, that’s amazing. Marriages are very hard work. So you get upwards of 20 years that’s incredible and amazing. So congratulations. That’s huge.What were his thoughts when…actually I was going to say, what were his thoughts when you first heard that erectile dysfunction could possibly be a side effect of surgery and your treatment? Why don’t you just take me through, for a minute, of what was it like to hear you have prostate cancer. I think from the blog, or from other stories that you’ve told us, that he was right there with you side-by-side, hand-in-hand to hear the news. Is that right? What was that like?Hartley: That’s absolutely right, yes. This February will be our 26th anniversary. In a lot of ways we are very similar, but I would classify myself as a realist. I take a very practical approach when faced with issues. My husband, however, I would say, he considers himself an optimist. I would classify him as someone who avoids any potential negativity. He was right there by my side, and I think we balanced each other out beautifully throughout this experience.I would say he was convinced from the very beginning that I would have a full recovery, with no long-term side effects. And that was from day one of diagnosis. Now hearing those words from the doctor that yes, you do in fact have prostate cancer. And as we went down the list of treatment options and side effects, he was really unfazed by the whole thing.He clung to the fact that otherwise I was healthy. In fact, that December I was well into my training for the Austin marathon which was that February. So, I was probably in some of the best shape of my life at that point.He never allowed himself to consider, for even a minute, that I would have long-term erectile dysfunction. He dismissed any long-term side effects. Always telling me, you’re young, you’re healthy, we don’t have to worry about this, in your particular case.So, he was right by my side at all of those diagnosis appointments with the doctor, where we went through everything in detail. He never questioned my ability to overcome those side effects. The only question he had is, how long would it last?It turns out he was right. I mean, I have made a full recovery, I’m happy to report. But what I learned through the recovery is that the ability to achieve an erection is just as much mental as it is physical. And I think you touched on this earlier, right. It really wasn’t until I started to relax and stop stressing over every failed attempt, that we started to see true results.It’s difficult in those early days, but just…I tell men, just try to relax. I know that’s easier said than done. Just take it one day at a time and work very closely with your doctors.Bearse: So your husband is an optimist and saying, things are fine, you’ll get through this, and we’ll get right back in having a normal life, as much as you can with raising two boys. Speaking from personal experience there. But, with you being a realist, what was your first reaction of hearing that erectile dysfunction could possibly be a side effect of going through your treatment?Hartley: I wanted to work as hard as I could on my recovery from day one. I took a different view. And maybe it’s because I was the one that was going through the treatment itself. Maybe it was because I am more of a realist and I wanted to always face the fact that I could have long-term side effects.I was not as convinced, in the early days, that I would make a full recovery. I forced him into having some discussions prior to surgery, you know, what would our life be like if I’m not able to have an erection. And that led us to having really meaningful conversations as a couple, as well as, exploring alternatives with my doctor.Now, my doctor was very careful to introduce topics when he felt like they were appropriate. So, from time to time he would say let’s take it one day at a time, we’re getting a bit ahead of ourselves. Because it can be overwhelming, especially in the beginning of diagnosis.Bearse: That plays into what you were saying about the stress, right. Like, you know, keep it in the moment or keep it in the day, that just adds more to that stress around when will it come back, when will I be better, why doesn’t this work the way I want it to.Hartley: I think my doctor recognized that with my personality, he didn’t want me back in the office after three, four, five failed attempts, asking for the next treatment. The conversations we had were, if erectile dysfunction is a long-term side effect, there are a multitude of options available to men with prostate cancer, or even as we age, unfortunately erectile dysfunction, incontinence can impact men across the board, whether you have prostate cancer or not.There are alternatives for each of those issues. He just touched on the fact that we’re going to try medication. There are injections, there are penile pumps. There are several things that we can look into if this is a persistent issue. But let’s give your body time to recover and let’s just take it one day at a time. And that’s what we did.Bearse: Right. You said that, I think I heard you say that you’re happy that you made a full recovery over these past couple of years. And for some patients it doesn’t…it takes longer for some of the side effects to fade and achieve a sex life again.I also appreciate you being a mentor. We have a mentor program at ZERO where we match prostate cancer survivors and patients up with newly diagnosed patients who are having a similar experience. So you can connect and share the same experience, strength and hope around your journey. What do you say to some of your mentees or some folks that you come across that it’s sort of taking longer than it had taken you to overcome some of the side effects, like erectile dysfunction?Hartley: In terms of recovery, I knew I was given a specific time frame and I think everyone’s case is different. I was otherwise healthy. The doctor was very honest about potential issues that could arise during surgery, which could impact my recovery time. We always had a target of around six months or so before we would start looking at alternative treatments or do further investigation of why I wasn’t responding to treatment.In the moment, even though I had that number, that time frame in my head, it didn’t take long before I started to question whether or not I would make a full recovery. My advice is really around patience, which I’m very short of. It’s good to surround yourself with a support group who will keep you in check. With every failed attempt, my husband would say, we’re not there yet, it’s going to take more time. Let’s not stress about this.My doctor was there, also reinforcing the same message. My treatment path, my recovery plan, six months was sort of the milestone to see where we’re at. So, at two months, when I was frustrated that I wasn’t able to achieve an erection, it was that support group reminding me that I needed to give my body more time. That’s ultimately what I needed, right. I needed to give my body time to recover. When you think about what’s involved with prostate cancer surgery, it’s very traumatic to your sexual organs. It’s not something that for most of us is going to bounce right back.Bearse: Let’s be open and honest, Chris, on this next one, as much as we can. So tell us how did the first sexual experience, post-surgery or post-treatment, go?Hartley: Honestly, it was not great. But, fortunately, I went into that experience with very low expectations. I would say, realistic expectations about what sex would be like in those very early days post-surgery.Now my approach to sex, post-op, was…Bearse: Sorry to stop you there, but tell us in a little more detail, if you can, because I’m sure that there are guys out there listening, and it doesn’t matter, if they’re heterosexual or gay or whatever, it really is an issue that hits every man. What was it like, can you be more specific? I can imagine that there are guys out there listening, okay, well I went through this, did he go through that, too. Or I’m about to go through surgery, what should I expect if I’m a realist?Hartley: I would say, first of all, my advice before we get into my experience, which I’m happy to do, is that it helped me to have those in-depth discussions with my partner, and my doctor. So, as I said, the first experience was not great, but I went in with a clear understanding of what to expect, and I took a very clinical approach to those early days, just as I had those discussions pre-op.So, it was important for me to define what I would consider successful in respect to my sex life, post-op. Not only the long-term goals but what were the short-term milestones that I wanted to achieve. And set realistic goals for recovery, right. You shouldn’t expect that you will have necessarily penetrated sex within days following surgery. I think for many us, that’s just simply not the case.It’s important to keep lines of communication open with your partner. Let them know what you need, let them know what you’re going through, and make sure that you’re communicating. And then be open and honest with your doctor as well. Your doctor needs to know how you are performing, how your body is responding in those first few days.Now, for me, that first experience, my doctor recommended daily masturbation. And my husband and I seriously called it my physical therapy. Because that’s really what it was. It wasn’t sexual in nature, so much as it was trying to engage a muscle memory.I started my physical therapy the same week my catheter came out. So that’s about two weeks post-surgery. And I wasn’t able to achieve an erection. But I forced myself because it wasn’t pleasurable in my case, but I forced myself to tackle this therapy as I would any other type of recovery.I mean, I had leakage during the early days of masturbating, and it was quite a bit at first. It did diminish over time, but that was one of the challenges. So, a lot of urinary leakage during masturbation. As you can imagine, I didn’t feel sexy. It wasn’t something that I looked forward to. It was purely just a medical exercise for me.I took a practical approach. I locked myself in the bathroom. I performed the therapy in the shower because of the leakage. And what I can remember about some of the first attempts is that it was the first time I had orgasmed without an erection. That’s not something I’d ever experienced before. Which then did make it a bit more pleasurable. So, it felt less like a daunting task that I had to perform. So, I was able to orgasm even without the ability to get an erection.Physically, the first time was uncomfortable, to be quite honest. I would categorize it as even slightly painful. But that’s something that my doctor told me could happen.Bearse: So, completely normal, he would say.Hartley: Completely normal. But it was important that I had those discussions, like I said earlier, because when it happened, and in the moment, I thought to myself, oh this is what the doctor was talking about. This is the discomfort he was talking about could happen in these early orgasms, right.When you think about it, most men haven’t experienced orgasm without an erection. They probably never had that much urinary leakage during masturbation. So, it feels very foreign to you.The first thing was, really just getting to know my body again. Just getting comfortable with my own penis again. Emotionally it was challenging in those early days, right. Nothing I said seems very comfortable and it wasn’t.With each attempt, I got more comfortable with my body, I would see less urinary leakage. I would experience less and less discomfort with organism, until it got back to “kind of normal”.Bearse: It sounds like you went through really a whole array of emotions during that recovery. You said that you are sometimes challenged with having patience. So, perhaps you were frustrated at different stages of that recovery. Any other emotions that come to mind, that you went through?Hartley: A lot of frustration, for sure. As I attempted, as my husband and I attempted to have sex, and it took us several weeks post-op before we even made our first attempt. But with every attempt, and every failure to achieve an erection, I was growing increasingly frustrated. I wanted my recovery to happen a lot quicker than it did, so definitely impatience.Like you called out, though, I think that overall it forced my husband and I to be intimate in different ways. And at the end of the day I feel like we’re closer than we’ve ever been because we’ve had to think about sex in our relationship in a different way than we did before prostate cancer.Bearse: Now take me through some of the examples of that. Because you hit on just what I was about to ask you, is, you’re married for, I think you said 26 years, so, tell me, being in a long-term committed relationship, a marriage of 26 years, obviously is a huge help in creating the foundation of your support system to go through your prostate cancer journey. But tell us, how that helped regain your sexuality again by achieving, I don’t want to project for you, but I would bet that it probably achieved new heights of emotional intimacy with your husband.Hartley: It certainly did. And I think that came out of how he handled the recovery. And what I mean by that is, he was there, he was the patient one, as we attempted intercourse in those early weeks and months. Like I said, it was weeks before I felt comfortable even attempting to have any type of sexual relationship with my husband.I was dealing with the emotional side of that physical therapy. How would urinary leakage, for example, impact our ability to be close. I sort of took a very practical approach to this as well. We did things like, we bought a crib sheet, so that we could lie in the bed together and if there was leakage, we had the crib sheet there.We discussed different techniques that we could introduce to help heighten the ability to have an erection. So everything from focusing more on oral sex, as a way to stimulate an erection, vibrating cock rings, we even tried the old tried and true visual stimulation of introducing pornography into our sex life. Anything that we felt like could aid in that recovery.At that point, medication wasn’t working for me. I was still taking the full dose. I was on 100 milligrams of on-demand sildenafil at that point. And in those early months nothing was happening. This is another example of really needing patience.For us, when we found success was actually around five months into recovery. And we had taken a trip to Mexico with a large group of friends. I think there were small winds that week, that certainly helped. Since we were in Mexico and we were on the beach all day. I was spending most of my time in a swimsuit. And I didn’t have any issues with incontinence, which certainly helped my confidence and self-esteem. Right.I had started working out again. I was getting back in shape slowly, starting very slow in the gym, and getting back to sort of a normal routine. It was on that trip that I had my first erection with 60 milligrams. So I wasn’t on the full dose anymore, but still taking quite a bit of sildenafil. We were thrilled with the fact that I was actually able to achieve an erection and maintain an erection for penetrative sex.And when we got home, so, on that trip we thought, wow, everything is back to normal, and it wasn’t. When we got home there were good days and bad days. Erections were not consistent even with medication. They were more frequent, but they weren’t guaranteed. For us it took about seven months altogether to consistently achieve an erection with medication.My doctor was right on his timeline where he said, let’s give it six months. Unfortunately, for me, it took us seven months to get back to consistent sex. It was in November, just a few months later that we found out that my PSA had started to rise again. That’s when I underwent several rounds of radiation and hormone deprivation therapy.I know we’ve talked about surgery, but I think it’s also important to note that with radiation and hormone deprivation, that brought on a new set of challenges. Right. We had new side effects that we were confronted with. Hot flashes. I had mood swings, which aren’t always great for initiating sex. I had fatigue, and then at points of my recovery, I had a complete lack of sex drive. We also continued to have sex during this recovery period as well.As my testosterone bottomed out though, I started to think of sex more as a job, a task that had to be checked off of the list. Something to aid in my overall recovery. My doctor had recommended that we continue to have sex, one to maintain intimacy that we had built back together, but also just as importantly, muscle memory.Bearse: How did your husband handle that, with going through those feelings of sex sort of feels more like a job to me right now, as I go through this next round of treatments. How was that on him?Hartley: We had a lot of hard conversations about it. I had typically been the one in our relationship to initiate sex and I was no longer doing that. Sort of the style in which we had sex had changed. I was much more emotional. I would actually have bouts of depression where I not only wasn’t in the mood to have sex, but I was actually quite depressed during sex, and really wasn’t in the mindset to be intimate in that way. But he was very honest with me and said, you know, this is something that we work through, we’ve been working through this for seven months, I don’t want to give up sex and I think it’s important for your recovery.Bearse: And from other patients…sorry go ahead.Hartley: I was going to say, it wasn’t always satisfying for either of us, to be completely honest. But it was something that we did work through together.Bearse: I was going to say that, from other patients that I’ve talked to and other doctors, that going through hormone therapy, that, that’s almost some of the byproduct that comes with it too, of sort of battling that depression and having the low sex drive. So, from your experience, obviously from your personal experience, and the conversations that you’ve had with your doctor about sex and going through hormone therapy regarding prostate cancer, and depression and low sex drive, that is also common and normal. Would you say that’s true?Hartley: I would say it’s true. These were all explained to us going into…specifically the hormone deprivation, which was optional in my case. That was something that after having conversations with both my radiation oncologist and my urologist, they weren’t on the same page at first. We decided because of my age, and my particular facts in my case, that we would be as aggressive with treatment as we could. That we felt that starving the cancer of the testosterone it needed during the radiation would be ideal in my case.I took a three-month shot, so it’s basically in your body for a period of six months, as you ramp down testosterone and then it ramps back up. And we knew full well going in that it’s very much like menopause is for women. It’s all about hormonal imbalance. That I could expect night sweats, hot flashes, mood swings, depression and complete loss of sex drive.Hearing it and going through it were completely different things. But having that understanding going in certainly made it much easier for us to navigate the complexity of what that meant and the reality at the moment, which was there were weeks, I’d say even a couple of months where I had zero sex drive.It just wasn’t something that was even on my radar. And that impacted, not only, our physical relationship, but our emotional one as well. Because I also wasn’t initiating any type of affection. I wasn’t giving a hug as I came in the door. I wasn’t giving a kiss on the check. It just wasn’t even in my sphere of consciousness at that point.I was really in a deep depression at that state as well, which played into it. Having a husband that would speak up and say, you don’t initiate sex with me anymore, and that’s an issue. Or you’re not showing affection, forced me to do those things, even if it didn’t feel natural at the time.Bearse: It’s almost like practicing or if you bring the body, the mind will follow, or in this case, if you bring the body, then the emotions will follow, you say.Hartley: That’s exactly the advice we got from our doctor, was, one-on-one with my doctor without my husband in the room, he said, there’s a few things I want you to realize. You’re going to hit bottom, and you are not going to necessarily want or think about sex. And he said, it’s important for you now as a husband to recognize what that’s doing to your partner.From a purely medical perspective, I want you to have sex because the last seven months you’ve been fighting so hard to get back to a place where you could achieve an erection. We want your body to remember that it has that function. We don’t want to go months where you’re not using that muscle. As an athlete I understood that, right. I know that when I’m running and training my body responds. When I back off of running it can be difficult. It could take weeks, months, to get back to that same physical place.He wanted to explain it to me in those terms. Continue to have sex, if nothing more, just to maintain that muscle memory. He’s like, you will come out of this as your testosterone starts to build back up. You’ll want to make sure that you haven’t impacted your relationship in a negative way by not recognizing how your hormones are impacting your relationship. And physically you want to make sure that your body is prepared.I will say, as that testosterone came back, I almost had the opposite effect. Meaning, I felt like a teenager again. When the testosterone started to build in the early days, so when it went from like 21 back to 600 in just a couple of weeks, it felt like I wanted sex all of the time. I was thinking about it all of the time. My body had to then, recalibrate and adjust to what it was doing now with all of this “new” testosterone that I had been deprived of for six months.So, it was quite interesting to see the…you know, look back and think about the very low lows and then sort of the very high highs, that came throughout the rollercoaster that is hormone deprivation therapy.Bearse: I was just going to call it just that, it sounds like a rollercoaster ride. Now, reading through your blog, Chris, something struck me. You said that there’s an upside to being gay with prostate cancer. Now why is that? Does that go back to what you were talking about earlier around manhood of having to be, I don’t know if I’m using the right word here, confronted with your manhood and your sexuality early on in your life, and having people react to that. Is that because you encountered that and then that experience strengthens who you are, it makes you more resolute and confident in who you are. The past experiences sort of prepare you for what may come later on in life. Is that what you’re referring to?Hartley: That’s absolutely right. It all does boil down to perception of manhood. As I stated earlier, as a gay man I was faced with questioning what manhood meant, especially in the context of sexuality, around the same time that you go through puberty. So, 12, 13, starting to question am I less of a man because I am gay. Is sexuality inherently tied to masculinity? Can you be both masculine and gay? And sort of navigating that in my early teens.I think that, that experience made me much more accepting of the prostate cancer diagnosis and specifically the side effect of prostate cancer. The potential side effect, even long-term side effect would not define me as a man. I made that decision very early on in my diagnosis. Also, my sexuality itself is a big part of defining who I am. And as a gay man, I think, I’m more apt to discussing sex in an open, honest way without shame.So, it’s not something, again, that we discussed around the dinner table. I didn’t have all of the skills necessary to navigate some of these conversations. Some of them were very new but I went into them, I think, more open, in discussing them both not only with my husband, but also my doctors, who I’ve known for a very short time. It can be very uncomfortable having conversations about what your sex life is post-surgery and then techniques to get you back to that same place, right. And you’re having these conversations with virtually strangers.With my ability to, I think, have discussions about sex so candidly, that helped me get through my concerns about treatment, make a plan, try alternatives. We were very open about different alternatives to enhance our sex life in those early months, and ultimately aided in me making my full recovery.Bearse: That’s great. And then finally, we know there are gay men listening to this podcast right now who may be recently diagnosed and extremely nervous about what it could mean for their sex lives, their intimacy. What do you want them to know, and what was one mistake that you made, that you might do differently, looking back?Hartley: I think gay or straight, men who are faced with this diagnosis, face the same questions. Will I be able to have sex after treatment? Will sex be different after treatment? Will I need an adult diaper, or a urinary pad? Even, what is an orgasm like without ejaculation? That’s not something that we’ve experienced.I think gay or straight we face those same questions, right. I was again, 43 at diagnosis, sex was something that my husband and I did several times a week. It was very important to our relationship. We wanted to make sure that we could get back to the same place after surgery.Then there’s the whole question of your mortality, right. It was the first time I had ever been faced with mortality. Cancer, alone, hearing those words, that yes you have cancer, is overwhelming.My one mistake was really not accepting what recovery would be like. I had those conversations. I had the right…I should have had the right expectations, but again, in the moment, I was very impatient. And it’s something that’s easy to say. I can say as a prostate cancer survivor, I empathize with men who are in treatment now, because it can seem that you won’t be able to get back to where you were. That sex may not be something that will be the same.What I would say is, it may not, it may not be the same. But you have to find ways and solutions to move past that. I would say that my sex life isn’t necessarily the same as it was, but it’s great. It’s just different. And it’s coming to terms of accepting those differences that being a prostate cancer survivor brings to the table, that will help you get past it. And to accept what your life is, not just around sex but physical activity, relationships, what’s that like after treatment.Bearse: That’s a great answer. Chris, thank you for being with us today, and for the candid, open discussion. Very wise words, I think. There’s a lot of answers you had that I can tell is going to help a lot of guys, regardless of their sexual orientation.I appreciate you being open and honest and gay forward with your journey with us today. It’s terrific. Thank you for joining us.Hartley: Well, thank you for having me, and I truly appreciate everything ZERO is doing to bring these topics to the forefront. I find that as I engage with men who are newly diagnosed, sometimes they avoid these conversations and I think they truly are important. So, thank you for everything that you’re doing.Bearse: Terrific. Thanks, Chris. Again, I encourage everyone to head over to zerocancer.com. Or zerocancer.org to read Chris’ Journey to ZERO blog, and to download other podcasts in this series. I’m Jaimie Bearse, the host of Prostate Cancer Uncensored, and thank you all for listening. More Multimedia About Prostate Cancer From our video library to our entire lineup of podcast episodes, learn more about prostate cancer by watching and listening. Podcasts Podcasts Prostate Cancer Uncensored is our podcast featuring unfiltered discussions with researchers, caregivers, patients, survivors, medical professionals, and more. Subscribe to ZERO on YouTube Subscribe to ZERO on YouTube Subscribe to ZERO's channel to receive alerts whenever new videos are posted, watch videos on-demand, and view playlists on topics like sexual health, health equity, and more. Videos & Webinars Videos & Webinars Register for upcoming webinars, view past presentations, and search through our full library of webinars on-demand. Podcasts Contributor Chris Hartley Chris Hartley is a prostate cancer survivor and ZERO Champion living in Austin, Texas with his husband and two children. An avid runner, Chris was diagnosed with prostate cancer in 2017 at the age of 43. Chris found ZERO a year after his radical prostatectomy and is now part of ZERO’s MENtor program, which offers peer-to-peer support for men facing prostate cancer. Chris stresses the importance of prostate cancer screening and wants to encourage and inspire those facing a prostate cancer diagnosis through his story.
Is a gay man’s experience with prostate cancer different from a heterosexual man’s? As a husband, father, prostate cancer awareness advocate, and a man who embraced his diagnosis with remarkable openness, Chris Hartley sheds light on his unique experience, addressing how being gay influenced his cancer journey and the challenges he encountered in regaining his sexual life on track.Listen
Transcript Expand All Transcript Jamie Bearse: Hello, and welcome to Prostate Cancer Uncensored, a podcast produced by ZERO Prostate Cancer. I’m Jamie Bearse, CEO at ZERO. This podcast series is about sex. In other recent episodes, we’ve spoken to two heterosexual men about their experiences; one married, and one in the middle of a dating scene.But today, we’re talking with a gay man about his journey with prostate cancer. Is it really all that different from the heterosexual experience? Chris Hartley, who is one of our champions at ZERO, joins me now for an open and candid discussion about this topic. Chris, thank you very much for joining me today on Prostate Cancer Uncensored, I appreciate it. Welcome.Chris Hartley: Thank you for having me. I look forward to it.Bearse: Terrific. Now just a little background on Chris. Chris is a 45-year-old man from Austin, Texas. He’s a husband, and a father of two sons. He does marathons, and he’s a prostate cancer survivor. Chris, we’ll talk about sex and intimacy in just a minute, but I think it’s worth noting first that as we record this podcast, it’s been about two years or so since your initial diagnosis. How’re you doing now?Hartley: That is correct. I’m coming up on my two-year anniversary of my diagnosis in December. Now on the other side of treatment, I think more than anything, I’m just really grateful. You know, on the other side of treatment, and for me, that included surgery, prostate removal, radiation, and hormone deprivation therapy. So, I’ve been through quite a bit in the last two years.But, I’m happy to report that my PSA is now undetectable and stable. I’m very optimistic about my future and I’m thrilled that I’m back on the road to recovery. I feel very fortunate that I had an amazing, amazing support group during this last two years. My friends and family were by my side every step of the way. Everything from making sure that we had food in those early days coming home from the hospital, to a close friend of mine from college coming into Austin to run the first 13 miles of last year’s Austin marathon, which was just a few months following my hormone deprivation treatment. It was really meaningful.I was also lucky to have an amazing group of doctors who answered my endless questions. I’m never short of questions during my doctor appointments. They also just showed unwavering support through my highs and lows over the past two years. Especially some of the lows that I experienced during that hormone deprivation treatment.Then, finally, the support from my ZERO family. I was able to connect with ZERO and meet other prostate cancer survivors through the mentorship program, a community 5K, and of course, the annual summit.ZERO has really helped build a community of supporters, both survivors, and caregivers. I met some amazing people through the organization that I’m sure will be lifelong friends.When I received my diagnosis about two years ago, I couldn’t imagine that I would be at this point in my life. I could say now, I’m happy, I’m healthy, and I’m very optimistic about the future.Bearse: I think that you’re an amazing person that inspires many of our advocates and champions who participate in a lot of our programs. I find you personally inspiring, just already from hearing what you went through.A lot of people don’t know this, but not only do you have to recover from surgery, but you had mentioned going through radiation treatments and that is, I don’t know your specific case, but that’s every day, right. You’re going in getting radiation treatment to make sure that they’ve gotten all of the prostate cancer, right.Hartley: That is correct. It’s several weeks of radiation treatment, daily visits to the doctor. I’m fortunate to live in Austin so it was not that much of a burden on me. I have heard from other survivors that have to drive hours to their local hospital for treatment.I try to stay very positive about my own experience. There’s definitely a lot of opportunities that I had just living where I live, having the support around me that I had, and that’s not always the case. So, that’s why I think it’s important to have organizations like ZERO, where you can connect with other survivors, and really put your own experience into perspective.Bearse: We also have a blog series at ZERO and you had authored, actually one of our most read and most candid blogs we ever produced for Journey to ZERO, which is the name of our blog series. I encourage all of our listeners to check that out at zerocancer.org.But, Chris, I was reading through that, and you had stated in your blog that there was an embarrassment associated with your diagnosis. Why is that? Is that around sexuality, or what is that about?Hartley: You know, I’ve given that a lot of thought, especially as I mentor newly diagnosed prostate cancer survivors. I find that I’m not alone in that initial embarrassment. It’s not embarrassment surrounding the diagnosis itself, so much as it is the potential side effects, which can include things like, incontinence, erectile dysfunction. Even the inability to ejaculate with orgasm can be overwhelming for most men.I think that I would categorize it correctly that most of us did not discuss these topics around the dinner table, right. So, how do we discuss them now? How do we approach it openly with our doctors as we attempt to navigate all of the finer points of what it means to be diagnosed with prostate cancer?How do we discuss them openly and honestly with our family as we’re facing questions of our own mortality at that point? And then, how do we discuss them with courage with our partner? And what the diagnosis could mean for our sexual relationship?For me, personally, what I came to realize is what I was experiencing wasn’t really about embarrassment, rather, it was that I had no experience or context of how to navigate the sensitivity around these topics.I decided to take a very medical approach to discussing my concerns with the side effects of treatments. Because when you think about it, biology is just that, biology. Right, there’s nothing to be embarrassed or ashamed about.What I found was, the more open I was about discussing all of my concerns about various treatments, the more open that other survivors were, the more open and comfortable my doctors became. And if you’re embarrassed or you’re hesitant about discussing these topics, I can tell you from my own experience, my doctors never blinked an eye at my very direct questions. I mentioned that I ask a lot of questions.I was very specific about my concerns. I do find myself fortunate to have doctors that made me feel comfortable discussing these topics. It certainly helped. So, you want to make sure that you find a medical team that you feel like you can communicate to, and that are very open and honest with you and don’t make you feel embarrassed or ashamed.Also, surround yourself with a team that can also navigate your emotional state. There’s two sides, really, I think, to prostate cancer treatment. There’s certainly the physical and medical aspects of the disease. And then there’s also the emotional state, which I know we’ll get into later. But, for many men, it’s the first time that we really call our manhood into question. It’s really about finding that support group that can help you navigate the sensitivity around all of these topics.Bearse: So true. And I also think what I hear you saying, Chris, is that it was helpful to you to think about what you were going through from a very clinical or medical or scientific standpoint. Which really helped take the embarrassment out of the experience a bit or the embarrassment out of some of the questions that you had. Is that what you’re saying as well?Hartley: That’s right. When we first think about the potential of erectile dysfunction, for example, or incontinence, I think as men we are hesitant to approach those topics sometimes because what that does mean about our manhood. It’s the first time, again, that that’s really being called into question.When you take the emotions out of that and realize that it is just clinical, it is biology, you need to ask your doctor about recovery, what to expect, exercises you can do to aid in recovery. I found it easier to have those discussions.Bearse: That’s very great advice for everybody out there listening. That’s terrific. You mention manhood, many men who are going through prostate cancer think about their manhood. I know it’s obviously your experience, too, as you just said. But, is there some perspective that makes it different as a gay man?Hartley: I would say first that I believe there are more experiences that bind us together as prostate cancer survivors, than separate us. But being gay is part of my identity, but it doesn’t define me as a person. Just as prostate cancer alone, doesn’t define who I am.However – and there’s a big however – like most things, our individual experiences can shape our perspective, right. So, how do we manage or navigate different life events, whatever they may be. As a gay man, specifically, my thoughts about prostate cancer and manhood are likely very different than my straight prostate cancer brothers.I don’t think it’s a stretch to say that most men equate their manhood or masculinity with sexual function. With that said, prostate cancer is likely the first time a straight man’s masculinity has been called into question. We start to think, am I less of a man if I can’t get an erection. Am I less sexy or less of a man if I have to wear an adult diaper or urinary pad?As a gay man I had to face questions about my own manhood in the context of my sexuality at a very early age. So, by the time I received my prostate cancer diagnosis, at the age of 43, I’d already come to terms with the fact that my sexuality, my manhood, were independent of each other.I knew going into the diagnosis that I was no less of a man because of prostate cancer. But don’t get me wrong, that doesn’t mean that it was any easier for me. As a 43-year-old man, sex was still very important to me and my husband. As you said at the top of the call, I was also an athlete, so the idea of potentially needing an adult diaper was very intimidating, to say the least.I told myself, regardless of the outcome of treatment, that I would still be the same man that I was before diagnosis. What I want men who are facing prostate cancer to know is that they are not any less of a man because of this disease. Erections don’t define us as men. Sex and sexuality does not define us as men. How we care for those around us and how we choose to battle this disease are more defining attributes of our manhood.Bearse: Right. As you go through this journey, intimacy, I think you just sort of hit on this, but, sexuality and intimacy can be two different topics. I mean, there’s certainly concentric circles that overlap each other, but there’s a lot within that intimacy space that really doesn’t have to do with physical sex that doesn’t go away and probably is even bolstered even more by going through this experience, because you’re drawn closer together emotionally with your partner and your family to some respects. Would you say that’s true?Hartley: That’s absolutely right.Bearse: Speaking of your partner; you have a husband of 20-plus years. First off, congratulations, that’s amazing. Marriages are very hard work. So you get upwards of 20 years that’s incredible and amazing. So congratulations. That’s huge.What were his thoughts when…actually I was going to say, what were his thoughts when you first heard that erectile dysfunction could possibly be a side effect of surgery and your treatment? Why don’t you just take me through, for a minute, of what was it like to hear you have prostate cancer. I think from the blog, or from other stories that you’ve told us, that he was right there with you side-by-side, hand-in-hand to hear the news. Is that right? What was that like?Hartley: That’s absolutely right, yes. This February will be our 26th anniversary. In a lot of ways we are very similar, but I would classify myself as a realist. I take a very practical approach when faced with issues. My husband, however, I would say, he considers himself an optimist. I would classify him as someone who avoids any potential negativity. He was right there by my side, and I think we balanced each other out beautifully throughout this experience.I would say he was convinced from the very beginning that I would have a full recovery, with no long-term side effects. And that was from day one of diagnosis. Now hearing those words from the doctor that yes, you do in fact have prostate cancer. And as we went down the list of treatment options and side effects, he was really unfazed by the whole thing.He clung to the fact that otherwise I was healthy. In fact, that December I was well into my training for the Austin marathon which was that February. So, I was probably in some of the best shape of my life at that point.He never allowed himself to consider, for even a minute, that I would have long-term erectile dysfunction. He dismissed any long-term side effects. Always telling me, you’re young, you’re healthy, we don’t have to worry about this, in your particular case.So, he was right by my side at all of those diagnosis appointments with the doctor, where we went through everything in detail. He never questioned my ability to overcome those side effects. The only question he had is, how long would it last?It turns out he was right. I mean, I have made a full recovery, I’m happy to report. But what I learned through the recovery is that the ability to achieve an erection is just as much mental as it is physical. And I think you touched on this earlier, right. It really wasn’t until I started to relax and stop stressing over every failed attempt, that we started to see true results.It’s difficult in those early days, but just…I tell men, just try to relax. I know that’s easier said than done. Just take it one day at a time and work very closely with your doctors.Bearse: So your husband is an optimist and saying, things are fine, you’ll get through this, and we’ll get right back in having a normal life, as much as you can with raising two boys. Speaking from personal experience there. But, with you being a realist, what was your first reaction of hearing that erectile dysfunction could possibly be a side effect of going through your treatment?Hartley: I wanted to work as hard as I could on my recovery from day one. I took a different view. And maybe it’s because I was the one that was going through the treatment itself. Maybe it was because I am more of a realist and I wanted to always face the fact that I could have long-term side effects.I was not as convinced, in the early days, that I would make a full recovery. I forced him into having some discussions prior to surgery, you know, what would our life be like if I’m not able to have an erection. And that led us to having really meaningful conversations as a couple, as well as, exploring alternatives with my doctor.Now, my doctor was very careful to introduce topics when he felt like they were appropriate. So, from time to time he would say let’s take it one day at a time, we’re getting a bit ahead of ourselves. Because it can be overwhelming, especially in the beginning of diagnosis.Bearse: That plays into what you were saying about the stress, right. Like, you know, keep it in the moment or keep it in the day, that just adds more to that stress around when will it come back, when will I be better, why doesn’t this work the way I want it to.Hartley: I think my doctor recognized that with my personality, he didn’t want me back in the office after three, four, five failed attempts, asking for the next treatment. The conversations we had were, if erectile dysfunction is a long-term side effect, there are a multitude of options available to men with prostate cancer, or even as we age, unfortunately erectile dysfunction, incontinence can impact men across the board, whether you have prostate cancer or not.There are alternatives for each of those issues. He just touched on the fact that we’re going to try medication. There are injections, there are penile pumps. There are several things that we can look into if this is a persistent issue. But let’s give your body time to recover and let’s just take it one day at a time. And that’s what we did.Bearse: Right. You said that, I think I heard you say that you’re happy that you made a full recovery over these past couple of years. And for some patients it doesn’t…it takes longer for some of the side effects to fade and achieve a sex life again.I also appreciate you being a mentor. We have a mentor program at ZERO where we match prostate cancer survivors and patients up with newly diagnosed patients who are having a similar experience. So you can connect and share the same experience, strength and hope around your journey. What do you say to some of your mentees or some folks that you come across that it’s sort of taking longer than it had taken you to overcome some of the side effects, like erectile dysfunction?Hartley: In terms of recovery, I knew I was given a specific time frame and I think everyone’s case is different. I was otherwise healthy. The doctor was very honest about potential issues that could arise during surgery, which could impact my recovery time. We always had a target of around six months or so before we would start looking at alternative treatments or do further investigation of why I wasn’t responding to treatment.In the moment, even though I had that number, that time frame in my head, it didn’t take long before I started to question whether or not I would make a full recovery. My advice is really around patience, which I’m very short of. It’s good to surround yourself with a support group who will keep you in check. With every failed attempt, my husband would say, we’re not there yet, it’s going to take more time. Let’s not stress about this.My doctor was there, also reinforcing the same message. My treatment path, my recovery plan, six months was sort of the milestone to see where we’re at. So, at two months, when I was frustrated that I wasn’t able to achieve an erection, it was that support group reminding me that I needed to give my body more time. That’s ultimately what I needed, right. I needed to give my body time to recover. When you think about what’s involved with prostate cancer surgery, it’s very traumatic to your sexual organs. It’s not something that for most of us is going to bounce right back.Bearse: Let’s be open and honest, Chris, on this next one, as much as we can. So tell us how did the first sexual experience, post-surgery or post-treatment, go?Hartley: Honestly, it was not great. But, fortunately, I went into that experience with very low expectations. I would say, realistic expectations about what sex would be like in those very early days post-surgery.Now my approach to sex, post-op, was…Bearse: Sorry to stop you there, but tell us in a little more detail, if you can, because I’m sure that there are guys out there listening, and it doesn’t matter, if they’re heterosexual or gay or whatever, it really is an issue that hits every man. What was it like, can you be more specific? I can imagine that there are guys out there listening, okay, well I went through this, did he go through that, too. Or I’m about to go through surgery, what should I expect if I’m a realist?Hartley: I would say, first of all, my advice before we get into my experience, which I’m happy to do, is that it helped me to have those in-depth discussions with my partner, and my doctor. So, as I said, the first experience was not great, but I went in with a clear understanding of what to expect, and I took a very clinical approach to those early days, just as I had those discussions pre-op.So, it was important for me to define what I would consider successful in respect to my sex life, post-op. Not only the long-term goals but what were the short-term milestones that I wanted to achieve. And set realistic goals for recovery, right. You shouldn’t expect that you will have necessarily penetrated sex within days following surgery. I think for many us, that’s just simply not the case.It’s important to keep lines of communication open with your partner. Let them know what you need, let them know what you’re going through, and make sure that you’re communicating. And then be open and honest with your doctor as well. Your doctor needs to know how you are performing, how your body is responding in those first few days.Now, for me, that first experience, my doctor recommended daily masturbation. And my husband and I seriously called it my physical therapy. Because that’s really what it was. It wasn’t sexual in nature, so much as it was trying to engage a muscle memory.I started my physical therapy the same week my catheter came out. So that’s about two weeks post-surgery. And I wasn’t able to achieve an erection. But I forced myself because it wasn’t pleasurable in my case, but I forced myself to tackle this therapy as I would any other type of recovery.I mean, I had leakage during the early days of masturbating, and it was quite a bit at first. It did diminish over time, but that was one of the challenges. So, a lot of urinary leakage during masturbation. As you can imagine, I didn’t feel sexy. It wasn’t something that I looked forward to. It was purely just a medical exercise for me.I took a practical approach. I locked myself in the bathroom. I performed the therapy in the shower because of the leakage. And what I can remember about some of the first attempts is that it was the first time I had orgasmed without an erection. That’s not something I’d ever experienced before. Which then did make it a bit more pleasurable. So, it felt less like a daunting task that I had to perform. So, I was able to orgasm even without the ability to get an erection.Physically, the first time was uncomfortable, to be quite honest. I would categorize it as even slightly painful. But that’s something that my doctor told me could happen.Bearse: So, completely normal, he would say.Hartley: Completely normal. But it was important that I had those discussions, like I said earlier, because when it happened, and in the moment, I thought to myself, oh this is what the doctor was talking about. This is the discomfort he was talking about could happen in these early orgasms, right.When you think about it, most men haven’t experienced orgasm without an erection. They probably never had that much urinary leakage during masturbation. So, it feels very foreign to you.The first thing was, really just getting to know my body again. Just getting comfortable with my own penis again. Emotionally it was challenging in those early days, right. Nothing I said seems very comfortable and it wasn’t.With each attempt, I got more comfortable with my body, I would see less urinary leakage. I would experience less and less discomfort with organism, until it got back to “kind of normal”.Bearse: It sounds like you went through really a whole array of emotions during that recovery. You said that you are sometimes challenged with having patience. So, perhaps you were frustrated at different stages of that recovery. Any other emotions that come to mind, that you went through?Hartley: A lot of frustration, for sure. As I attempted, as my husband and I attempted to have sex, and it took us several weeks post-op before we even made our first attempt. But with every attempt, and every failure to achieve an erection, I was growing increasingly frustrated. I wanted my recovery to happen a lot quicker than it did, so definitely impatience.Like you called out, though, I think that overall it forced my husband and I to be intimate in different ways. And at the end of the day I feel like we’re closer than we’ve ever been because we’ve had to think about sex in our relationship in a different way than we did before prostate cancer.Bearse: Now take me through some of the examples of that. Because you hit on just what I was about to ask you, is, you’re married for, I think you said 26 years, so, tell me, being in a long-term committed relationship, a marriage of 26 years, obviously is a huge help in creating the foundation of your support system to go through your prostate cancer journey. But tell us, how that helped regain your sexuality again by achieving, I don’t want to project for you, but I would bet that it probably achieved new heights of emotional intimacy with your husband.Hartley: It certainly did. And I think that came out of how he handled the recovery. And what I mean by that is, he was there, he was the patient one, as we attempted intercourse in those early weeks and months. Like I said, it was weeks before I felt comfortable even attempting to have any type of sexual relationship with my husband.I was dealing with the emotional side of that physical therapy. How would urinary leakage, for example, impact our ability to be close. I sort of took a very practical approach to this as well. We did things like, we bought a crib sheet, so that we could lie in the bed together and if there was leakage, we had the crib sheet there.We discussed different techniques that we could introduce to help heighten the ability to have an erection. So everything from focusing more on oral sex, as a way to stimulate an erection, vibrating cock rings, we even tried the old tried and true visual stimulation of introducing pornography into our sex life. Anything that we felt like could aid in that recovery.At that point, medication wasn’t working for me. I was still taking the full dose. I was on 100 milligrams of on-demand sildenafil at that point. And in those early months nothing was happening. This is another example of really needing patience.For us, when we found success was actually around five months into recovery. And we had taken a trip to Mexico with a large group of friends. I think there were small winds that week, that certainly helped. Since we were in Mexico and we were on the beach all day. I was spending most of my time in a swimsuit. And I didn’t have any issues with incontinence, which certainly helped my confidence and self-esteem. Right.I had started working out again. I was getting back in shape slowly, starting very slow in the gym, and getting back to sort of a normal routine. It was on that trip that I had my first erection with 60 milligrams. So I wasn’t on the full dose anymore, but still taking quite a bit of sildenafil. We were thrilled with the fact that I was actually able to achieve an erection and maintain an erection for penetrative sex.And when we got home, so, on that trip we thought, wow, everything is back to normal, and it wasn’t. When we got home there were good days and bad days. Erections were not consistent even with medication. They were more frequent, but they weren’t guaranteed. For us it took about seven months altogether to consistently achieve an erection with medication.My doctor was right on his timeline where he said, let’s give it six months. Unfortunately, for me, it took us seven months to get back to consistent sex. It was in November, just a few months later that we found out that my PSA had started to rise again. That’s when I underwent several rounds of radiation and hormone deprivation therapy.I know we’ve talked about surgery, but I think it’s also important to note that with radiation and hormone deprivation, that brought on a new set of challenges. Right. We had new side effects that we were confronted with. Hot flashes. I had mood swings, which aren’t always great for initiating sex. I had fatigue, and then at points of my recovery, I had a complete lack of sex drive. We also continued to have sex during this recovery period as well.As my testosterone bottomed out though, I started to think of sex more as a job, a task that had to be checked off of the list. Something to aid in my overall recovery. My doctor had recommended that we continue to have sex, one to maintain intimacy that we had built back together, but also just as importantly, muscle memory.Bearse: How did your husband handle that, with going through those feelings of sex sort of feels more like a job to me right now, as I go through this next round of treatments. How was that on him?Hartley: We had a lot of hard conversations about it. I had typically been the one in our relationship to initiate sex and I was no longer doing that. Sort of the style in which we had sex had changed. I was much more emotional. I would actually have bouts of depression where I not only wasn’t in the mood to have sex, but I was actually quite depressed during sex, and really wasn’t in the mindset to be intimate in that way. But he was very honest with me and said, you know, this is something that we work through, we’ve been working through this for seven months, I don’t want to give up sex and I think it’s important for your recovery.Bearse: And from other patients…sorry go ahead.Hartley: I was going to say, it wasn’t always satisfying for either of us, to be completely honest. But it was something that we did work through together.Bearse: I was going to say that, from other patients that I’ve talked to and other doctors, that going through hormone therapy, that, that’s almost some of the byproduct that comes with it too, of sort of battling that depression and having the low sex drive. So, from your experience, obviously from your personal experience, and the conversations that you’ve had with your doctor about sex and going through hormone therapy regarding prostate cancer, and depression and low sex drive, that is also common and normal. Would you say that’s true?Hartley: I would say it’s true. These were all explained to us going into…specifically the hormone deprivation, which was optional in my case. That was something that after having conversations with both my radiation oncologist and my urologist, they weren’t on the same page at first. We decided because of my age, and my particular facts in my case, that we would be as aggressive with treatment as we could. That we felt that starving the cancer of the testosterone it needed during the radiation would be ideal in my case.I took a three-month shot, so it’s basically in your body for a period of six months, as you ramp down testosterone and then it ramps back up. And we knew full well going in that it’s very much like menopause is for women. It’s all about hormonal imbalance. That I could expect night sweats, hot flashes, mood swings, depression and complete loss of sex drive.Hearing it and going through it were completely different things. But having that understanding going in certainly made it much easier for us to navigate the complexity of what that meant and the reality at the moment, which was there were weeks, I’d say even a couple of months where I had zero sex drive.It just wasn’t something that was even on my radar. And that impacted, not only, our physical relationship, but our emotional one as well. Because I also wasn’t initiating any type of affection. I wasn’t giving a hug as I came in the door. I wasn’t giving a kiss on the check. It just wasn’t even in my sphere of consciousness at that point.I was really in a deep depression at that state as well, which played into it. Having a husband that would speak up and say, you don’t initiate sex with me anymore, and that’s an issue. Or you’re not showing affection, forced me to do those things, even if it didn’t feel natural at the time.Bearse: It’s almost like practicing or if you bring the body, the mind will follow, or in this case, if you bring the body, then the emotions will follow, you say.Hartley: That’s exactly the advice we got from our doctor, was, one-on-one with my doctor without my husband in the room, he said, there’s a few things I want you to realize. You’re going to hit bottom, and you are not going to necessarily want or think about sex. And he said, it’s important for you now as a husband to recognize what that’s doing to your partner.From a purely medical perspective, I want you to have sex because the last seven months you’ve been fighting so hard to get back to a place where you could achieve an erection. We want your body to remember that it has that function. We don’t want to go months where you’re not using that muscle. As an athlete I understood that, right. I know that when I’m running and training my body responds. When I back off of running it can be difficult. It could take weeks, months, to get back to that same physical place.He wanted to explain it to me in those terms. Continue to have sex, if nothing more, just to maintain that muscle memory. He’s like, you will come out of this as your testosterone starts to build back up. You’ll want to make sure that you haven’t impacted your relationship in a negative way by not recognizing how your hormones are impacting your relationship. And physically you want to make sure that your body is prepared.I will say, as that testosterone came back, I almost had the opposite effect. Meaning, I felt like a teenager again. When the testosterone started to build in the early days, so when it went from like 21 back to 600 in just a couple of weeks, it felt like I wanted sex all of the time. I was thinking about it all of the time. My body had to then, recalibrate and adjust to what it was doing now with all of this “new” testosterone that I had been deprived of for six months.So, it was quite interesting to see the…you know, look back and think about the very low lows and then sort of the very high highs, that came throughout the rollercoaster that is hormone deprivation therapy.Bearse: I was just going to call it just that, it sounds like a rollercoaster ride. Now, reading through your blog, Chris, something struck me. You said that there’s an upside to being gay with prostate cancer. Now why is that? Does that go back to what you were talking about earlier around manhood of having to be, I don’t know if I’m using the right word here, confronted with your manhood and your sexuality early on in your life, and having people react to that. Is that because you encountered that and then that experience strengthens who you are, it makes you more resolute and confident in who you are. The past experiences sort of prepare you for what may come later on in life. Is that what you’re referring to?Hartley: That’s absolutely right. It all does boil down to perception of manhood. As I stated earlier, as a gay man I was faced with questioning what manhood meant, especially in the context of sexuality, around the same time that you go through puberty. So, 12, 13, starting to question am I less of a man because I am gay. Is sexuality inherently tied to masculinity? Can you be both masculine and gay? And sort of navigating that in my early teens.I think that, that experience made me much more accepting of the prostate cancer diagnosis and specifically the side effect of prostate cancer. The potential side effect, even long-term side effect would not define me as a man. I made that decision very early on in my diagnosis. Also, my sexuality itself is a big part of defining who I am. And as a gay man, I think, I’m more apt to discussing sex in an open, honest way without shame.So, it’s not something, again, that we discussed around the dinner table. I didn’t have all of the skills necessary to navigate some of these conversations. Some of them were very new but I went into them, I think, more open, in discussing them both not only with my husband, but also my doctors, who I’ve known for a very short time. It can be very uncomfortable having conversations about what your sex life is post-surgery and then techniques to get you back to that same place, right. And you’re having these conversations with virtually strangers.With my ability to, I think, have discussions about sex so candidly, that helped me get through my concerns about treatment, make a plan, try alternatives. We were very open about different alternatives to enhance our sex life in those early months, and ultimately aided in me making my full recovery.Bearse: That’s great. And then finally, we know there are gay men listening to this podcast right now who may be recently diagnosed and extremely nervous about what it could mean for their sex lives, their intimacy. What do you want them to know, and what was one mistake that you made, that you might do differently, looking back?Hartley: I think gay or straight, men who are faced with this diagnosis, face the same questions. Will I be able to have sex after treatment? Will sex be different after treatment? Will I need an adult diaper, or a urinary pad? Even, what is an orgasm like without ejaculation? That’s not something that we’ve experienced.I think gay or straight we face those same questions, right. I was again, 43 at diagnosis, sex was something that my husband and I did several times a week. It was very important to our relationship. We wanted to make sure that we could get back to the same place after surgery.Then there’s the whole question of your mortality, right. It was the first time I had ever been faced with mortality. Cancer, alone, hearing those words, that yes you have cancer, is overwhelming.My one mistake was really not accepting what recovery would be like. I had those conversations. I had the right…I should have had the right expectations, but again, in the moment, I was very impatient. And it’s something that’s easy to say. I can say as a prostate cancer survivor, I empathize with men who are in treatment now, because it can seem that you won’t be able to get back to where you were. That sex may not be something that will be the same.What I would say is, it may not, it may not be the same. But you have to find ways and solutions to move past that. I would say that my sex life isn’t necessarily the same as it was, but it’s great. It’s just different. And it’s coming to terms of accepting those differences that being a prostate cancer survivor brings to the table, that will help you get past it. And to accept what your life is, not just around sex but physical activity, relationships, what’s that like after treatment.Bearse: That’s a great answer. Chris, thank you for being with us today, and for the candid, open discussion. Very wise words, I think. There’s a lot of answers you had that I can tell is going to help a lot of guys, regardless of their sexual orientation.I appreciate you being open and honest and gay forward with your journey with us today. It’s terrific. Thank you for joining us.Hartley: Well, thank you for having me, and I truly appreciate everything ZERO is doing to bring these topics to the forefront. I find that as I engage with men who are newly diagnosed, sometimes they avoid these conversations and I think they truly are important. So, thank you for everything that you’re doing.Bearse: Terrific. Thanks, Chris. Again, I encourage everyone to head over to zerocancer.com. Or zerocancer.org to read Chris’ Journey to ZERO blog, and to download other podcasts in this series. I’m Jaimie Bearse, the host of Prostate Cancer Uncensored, and thank you all for listening.
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