Hosts Joseph Ischia and Victoria Cullen, along with special guest Richard Wassersug, discuss the impact of ADT on the sex life of patients with prostate cancer. Victoria Cullen is a Sexuality Educator and PhD candidate at RMIT University. She obtained her Bachelor’s degree and Masters in Cognitive Psychology from University College London. In 2015, Victoria co-founded the world’s first sex toy design course in an academic setting at RMIT University and in 2017, she partnered with Urology Surgeon, Professor Declan Murphy, to deliver complimentary consultations to private prostatectomy patients. She offers free online resources for sexual recovery post Prostate Cancer Treatment through her website www.atouchysubject.com.
Richard Wassersug is a research scientist and also a prostate cancer patient, based in Vancouver, Canada, where he holds the position of Honorary Professor in the Faculty of Medicine at the University of British Columbia. He has authored or coauthored over 300 academic papers in fields as diverse as human sexuality and amphibian biology. However, a major focus of his research for the last decade has been on the psychology of androgen deprivation. An over-arching goal of Dr.Wassersug’s work is to develop ways to help men and their partners recognize and overcome the side effect burden from androgen deprivation therapy, which is the primary treatment for systemic prostate cancer. This research led to the 2014 book “Androgen Deprivation Therapy: An essential guide for prostate cancer patients and their loved ones” for which he is the lead author. A 2ndedition was published in 2018, and the two editions together have sold ~70,000 copies. Dr. Wassersug is a Co-lead for Canada’s Androgen Deprivation Therapy Educational Program.
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Talking Urology podcast transcript
So You’re Gonna discuss the impact of ADT on the sex life of your patients
Joseph: Hello, I’m Joseph Ischia and welcome to another episode of So You’re Gonna, our new podcast series from the team at Talking Urology where we get excited about helping doctors and allied practitioners develop a deeper understanding of the literature so that we apply the right evidence to the right patient. We really enjoy doing the landmark papers but we know that you also want to hear some hard-core facts, tips and tricks about conditions you see every day in your practice. Today we have a fantastic podcast on how to deal with the impact that androgen deprivation therapy is having on the sex life of your patients. Now, if you’re like me, you just had this sinking feeling of I am so busy and that is a can of worms I do not want to open in a 10 minute consult. But this is something that is really bothering a lot of our patients and we do them a disservice by not acknowledging it, and they may often feel too embarrassed to bring it up. So to help me uncover my deficiencies today, and hopefully only the communication ones, I have the pleasure of being joined by my co-host Victoria Cullen, a sexologist from Melbourne who co-founded the world’s first and only sex toy design course at RMIT University. Her current PhD research focuses on designing sexuality solutions for prostate cancer patients. She runs a website at www.atouchysubject.com, which offers free education and medical grade products for sexual recovery after Prostate Cancer Treatment. Welcome Victoria.
Victoria: Thank you Joseph. It is an absolute pleasure to be here chatting about this important topic with you
Joseph: Can I just come back to the RMIT course on sex toy design. Because back in first year medical school, if I had had a choice between an introduction to disease or an introduction to dildos, I may have had a much more enjoyable year. What kind of students do you get in your course?
Victoria: That is a great question Joseph. It was a wonderful course, offered to 3rd year industrial design students for their thesis so they had the choice of applying their design skills to a different context. Some did agriculture others were doing zoology and there there were those that said, look I’ll do dildos that’ll give me something to talk about with my friends about my thesis that I wouldn’t have otherwise and it was marvellous. We learnt a lot together.
Joseph: Well very interesting. Getting back to men and their problems on ADT and helping us bring the literature to life today is Prof Richard Wassersug from the University of British Columbia in Vancouver, who is world expert and has published extensively on sexuality for men and their partners on ADT. Let’s start with the fact that 1 in 7 Australian men will be diagnosed with prostate cancer in their lifetime, there are many different treatment pathways, but today we are focusing in on androgen deprivation therapy, specifically on the sexual health and wellbeing side effects. Considering ADT is often called ‘chemical castration’ it’s important we address this topic. Even if you’ve had no training in sexual health, by the end of this conversation you will feel comfortable talking to anyone about their sex life, and possibly even your patients. The way I see it, you’ll be the most accidentally in demand conversational partner at all future social events. Does that accurately describe your life as a sexologist, Victoria?
Victoria: Pretty much yes Joseph, once your friends know you can have comfortable conversations about sexual issues you get an instant get-out-of-jail-free card to skip the small talk, it’s my favourite occupational hazard. I even once got a free Uber ride after listening to a driver looking for advice on how to have sex after a circumcision had left him feeling particularly sensitive – I gave him a sample of my go-to hypoallergenic lubricant for sex sensitivities – which is called Uberlube, with no association to the taxi company but a fun coincidence in this instance! On a genuine note though, I feel the topic of talking about sexual side effects with patients is so important, and not just for the patients’ quality of life, but because I believe healthcare providers are missing out on experiencing the gratitude someone feels when such a sensitive topic like sexual function, that is often loaded with shame and worry, is treated comfortably in a clinical setting. It can be quite transformative simply by confidently asking someone about their sexual health.
Joseph: There you go, we’ve already learnt how to ensure a five star Uber rating, now I’ve also read that this topic is important, but particularly for patients on ADT. It appears that education around the sexual and psychological effects are still the most unmet educational needs that patients report, that latest research coming from a Melbourne patient sample by Helen Crowe and colleagues in 2018. But this is particularly tricky because other studies suggest this population of patients are not likely to bring the matter up themselves. This is an amazing stat: Gilbert and his team in 2016 found 70% of male cancer survivors based in Sydney stated they wanted their provider to initiate a chat about sexual health, and only 6% of patients initiated the chat themselves if it was not initiated by their provider first. I cannot think of any other issue in urology that would have such a large gap between what our patients want and what they are prepared to mention. So, Victoria, what education do patients need when it comes to sexual side effects of ADT?
Victoria: They need to know that everyone is different, it is difficult to tell what side effects they will experience ahead of time, but we can say what they should expect to happen so they are prepared. Erectile dysfunction is very common, in one study by Fode & Sonksen, 2014, only 19% of patients were able to maintain an erection during sexual activity on ADT, and for most of those patients rigidity was still an issue. Patients also need education around what erectile dysfunction looks like in this scenario. Some people hear the word ‘dysfunction’ and think – so it’s here one minute, gone the next, like a dysfunctional teenager. Whereas in this instance, ED is likely to happen over time on ADT and it may eventually not be possible to achieve an erection with any rigidity at all, even when aroused, which can be disconcerting to men who thought it might just be inconsistent. Other sexual function changes also occur over time on ADT, such as a reduction in ejaculation, genital shrinkage and lowered libido. In fact, lowered libido is reported as the most distressing side effect of ADT for many patients.
Joseph: Wow, that’s quite the list. And likening the distress to a dysfunctional teenager has really brought home the pain for a lot of doctors! But I digress. I’ve also read that sexual wellbeing becomes impacted by other side effects from the lack of testosterone, such as hot flashes and weight gain, which can in turn also affect sexual identity. Hearing all that it’s got to make our listener’s wonder whether men and couples do in fact keep going with sexual activity when on ADT? Especially when there’s a lack of motivation for sex altogether. Victoria, how do couples keep their sex life going? All puns intended here, but it must be tempting to put sex in the ‘too hard slash not hard enough basket’.
Victoria: It’s a great question, and again I think this can be a barrier to clinicians bringing up the sex questions in appointments down the line if the assumption that lack of sex drive means lack of sexuality. And luckily we have some research on just that question. Lauren Walker and John Robinson (2010) over in Canada looked at whether couples tried to remain sexually active after ADT, and then later research in 2012 on how those who tried managed to succeed. They found that many couples on ADT were trying to remain sexual, but those who succeeded tended to use the strategy of attitude reframe, consciously choosing a new way to approach sexuality. Couples accepting the changes and adapting the newness in order to achieve feelings of closeness, sexuality, intimacy, even if it looked different to before tended to do better than those who didn’t. Rigidity is often what men with erectile dysfunction are asking for, however ironically the research suggests that rigidity in terms of the ideas about how sex is supposed to be leads to suffering and challenges. I know that Richard talks about intimacy strategies in his workshops and I’d be interested to hear some practical ideas he shares with participants…
Richard: When we talk about sexuality and sexual recovery, we make it clear that we’re not simply giving some sort of rah-rah sex positivism. Everybody should be sexual even if they’re in ADT which is a hell of a burden to push on a couple. But at the same time, we want to let them know their options. We do discuss options here and we know for instance that PDE5 drugs are not particularly effective if you have no libido, we acknowledge that. The erectile vacuum erection device is a possibility. I mean, it will still work for a patient on ADT, but it may seem very unnatural if they have no real libido. What we do encourage is communication in physical contact. This is not sexual per se, but what sadly happens so often with couples on ADT is, he’s lost his libido and he used to have some sort of motion, some non-verbal social sexual, psychosexual script which involves sort of maybe touching his wife on the shoulder, a kiss on the neck or something when he came home and he’s now lost his libido and he forgets to do it. She’s now abandoned and that’s appalling.
Joseph: Fascinating, so in a clinical setting, Richard, when a clinician might only have a few minutes to discuss sexual recovery with a patient, how do you recommend they go about it to get this message across?
Richard: In my scenario, the way it would go is the patient comes to the doctor concerned about erectile dysfunction, asked about taking whatever, say, a PDE5. The doctor says, “I’ll tell you what, if are you willing to come back with your partner?” The patient says, “yes.” The patient and patient come back to see the doctor several weeks later and the doctor turns to the partner and says, “My patient here is interested in trying Viagra. How do you feel about that?” And if a partner says, “Well, I’m okay with that.” The doctor then says, “Well, I’ll tell you what, I’m going to write a script.” He writes out the script and he hands her the script and says, “Now, if he’s really nice to you, you can give him one of these little blue pills.” So that little story we’re saying that we really do have to engage the couple.
Richard: There could also be other sex aids, vibrators and so forth, that can be shared in a certain way that really raises the erotic interest for both of them. But considering the depression of his libido, the partner has to be brought in. She is the best erotic aid that could be a part of his recovery, and if she’s not part of it, full recovery of sexual interest and sexual function from virtually any urological treatment that impedes sexual function is going to be very difficult.
Victoria: Yes, I’ve seen that too with my clients, continued affection and closeness is crucial to help keep sexuality alive during ADT treatment. In fact, studies that have looked at whether exercise can help libido found that actually the social impact of men exercising with their partners had the biggest self-reported impact as it encouraged connection. They even found for single men, exercising with other men gave them opportunities for conversations about their side effects, which in turn helped raise wellbeing. I think the message is to give couples agency over their sex life and sexual changes, give them the options on how they could do this and normalise the idea that sexuality is adaptable if they want to maintain a sexual relationship, and can still be fulfilling even if it looks different post treatment.
Richard: One of the stories I know from a sex therapist here in Canada who was looking at the sexual practice of elderly couples and she asked, “Well, what is sex like?” And one of them wrote her and she loves this story, they said, “When we’re planning on sex for the weekend, it begins with what we plan for dinner. We plan that on Thursday night.” So, they turn the whole weekend into a sexual event in their minds and whether it has coital sex or not I don’t know, but it does imply that that they are taking their lives and essentially eroticizing them. That I think is essential, but I can’t prove it because we really don’t have real solid data. It’s all anecdotal at this point,
Joseph: Great examples of how sexuality can be maintained on ADT. So we know what sexual side effects need addressing and including the partner and relationship is crucial. However, not many doctors feel they have the expertise, or equally prohibitively, the time to deal with this. We know from studies such as Amanda Hordern’s work on clinical sexual communication, that a barrier clinicians face is feeling under-qualified in having these conversations. Now, this clinical sexual communication: that’s not sexting, is it.
Joseph: Good to clear that up.
Victoria: It wasn’t ambiguous to start with.
Joseph: For you, maybe. Alright, let’s get back to talking about patients. What do we do if a couple isn’t getting along, or one wants to try a sexual aid but the other doesn’t? I certainly know there wasn’t a sex counselling module in my training. Where’s the line where a referral is appropriate or should every clinician be fielding this?
Victoria: In terms of providing sexuality advice, I think it’s so important for everyone to know that you don’t need to be a sex therapist to have helpful conversation with someone about sex. One framework to demonstrate this is the PLISSIT Model developed by Jack Annon in 1976, standing for permission, limited information, specific suggestions and intensive therapy. It might even be helpful to write it on a post it note to have in your office as a reminder. Research has shown that most sexual communication with patients only requires the first P – Permission. Simply providing someone with the space to talk openly about their side effects or knowing they can do that is often all you need to do to help. The next steps are providing some specific suggestions as suggested above, then if it gets to limited information, meaning a longer consultation providing underlying education about how arousal works for example, then you might want to refer on. It can indeed become trickier however when the partnership are not on the same page, Richard, what are your thoughts on when is best to refer to a counsellor in this instance?
Richard: I’ll tell you another story along these lines because this is in some of our own research. We looked at how miserable patients were from hormonal therapy, from the androgen deprivation therapy and how their partners assessed how miserable they were. And it turns out, in the couples where the patients said, “I hate these drugs, I feel terribly miserable” then independently or through an online survey, we didn’t have them the room at the same time, we asked the partner how was he doing, and she said, “He’s miserable.” And then we asked each one of them, “How are you doing as a couple?” We look at what’s called dyadic adjustment and it turns out they’re doing fine because they’re on the same page, “We’re miserable” but at least they agreed, so they haven’t come apart. They don’t have to necessarily be happy. They don’t necessarily have to have coital penile vaginal sex but it helps that they’re on the same page and that can only be assessed by asking each one of them what their needs are. The urologist can do that, but then of course, often referral is necessary and I don’t think they should automatically make a referral, but I think they should automatically ask those questions to see whether referral is necessary.
Joseph: So it sounds like often just beginning the sexuality conversation is enough, and then explicitly asking both the patient and then turn to the partner separately and ask them how they are doing and listening for congruence is a good strategy to assess if a referral is necessary. How about men who have male partners Richard, in your experience do they have different needs we need to keep in mind?
Richard: So far, I’ve talked about heterosexual couples both here in Canada and Australia and much of the western world now same-sex couples are part of a common world we live in. Once you have same-sex marriage it’s normalized completely. When I’ve talked about partners who are the wives, this is only because the data we have is primarily from heterosexual couples. What I’ve seen in our book, we have a whole section for gay couples and we also have a section for single couples. Really what I’ve seen, this s sort of more of a personal observation, is that one of the biggest challenges that the gay population has is they’re more likely to be single. If you have erectile dysfunction from prostate cancer treatments and you don’t have a partner, it’s a real tough conversation to start. Many of them don’t know how to start the conversation or are afraid to start the conversation, and in fact, there is a very strong sense and it’s a sad sense that you are dismissed from the gay population if you can’t have erections. Honestly it is a sad and problem that I don’t have a solution for, but we recognize it.
Joseph: Thank you so much, Victoria and Richard. I have been enlightened. If you had to break it down into the fast five facts that our listeners can take away from our chat?
Victoria: Thank you Joseph and Richard, I’m sure we could talk all day about this and create a whole other podcast series called ‘Great Sexpectations’. For now, here is what I’ve taken away. Firstly, make it clear that everyone experience different sexual side effects and these can change over time during treatment. Then give them everything that could happen so they are prepared. Second, define erectile dysfunction and also loss of libido explaining what that can look and feel like. Third, have the partner involved throughout, especially when it comes to what sexual aids they want to try. Forth, ask both the patient and partner separately how their sexual life is going, and listen for congruence. Incongruent answers might indicate referral to a councellor would be helpful. Finally, You do not need all the answers when it comes to the details of sexual side effects and strategies, and you don’t need much time. Remember the PLISSIT model and work through the letters. simply bringing it up is the first P – Permission, then specific suggestions, then limited information then refer to therapy if necessary.
Joseph: So that’s it for today folks. We hope you have enjoyed listening. We also hope that you have learned something new and will join us again next time. Take care. Remember to send all feedback to firstname.lastname@example.org. You can subscribe through Apple podcasts or wherever you get your podcasts, and check out the website at talkingurology.com.au. You can follow us on Twitter @talking_urology to get all the latest news and notifications of past and upcoming podcasts.
You’ve been listening to Joseph Ischia, Victoria Cullen and our special guest, Richard Wassersug. Written by Victoria Cullen and Joseph Ischia. Produced by Joseph Ischia and Cara Webb. And a special thanks to our sponsor of this episode Abbvie.
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