Episode 8: On Cancer Survivorship, Sexual Health and Mindfulness

Dr. Lori Brotto chats with Nicole about her research on cancer survivorship, sexual health and mindfulness. She shines a light on sexual health and sexual difficulties/dysfunction gynecologic cancer patients might experience during the course of their treatment and survivorship. Dr. Brotto also shares how healthcare providers can have more engaged conversations about sexual health with their patients and how patients can start integrating mindfulness into their sexual health. Dr. Brotto is a Professor at UBC's Department of Obstetrics and Gynecology and the Executive Director of the Women's Health Research Institute at BC Women's Hospital.

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Website - https://brottolab.med.ubc.ca/

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Transcript

Introduction

Thanks for listening to the GOSH podcast. GOSH stands for the Gynecologic Oncology Sharing Hub, an open space for real and evidence-based discussions on gynecologic cancers. We'll share the stories of gyne cancer patients and survivors and hear from researchers and clinicians who are working behind the scenes to improve the lives of people with gynecologic cancers. 

Our podcast is produced and recorded on the traditional, unceded territories of the xʷməθkʷəy̓əm (Musqueam), Sḵwx̱wú7mesh (Squamish), and səl̓ilwətaɁɬ / sel̓íl̓witulh (Tsleil-Waututh) nations. It is produced by the Gynecologic Cancer Initiative, a province wide initiative in British Columbia with the mission to accelerate transformative research and translational practice on the prevention, detection, treatment and survivorship of gynecologic cancers. Hi, I'm Nicole Keay, and I'm Stephanie Lam and you're listening to the GOSH podcast. 

Nicole

Welcome to the GOSH podcast. Today. I'm really excited to be speaking with Dr. Lori Brotto, who is a professor in the University of British Columbia's department of Obstetrics and Gynecology and a registered psychologist. She's the executive director of the Women's Health Research Institute at BC Women's Hospital and she is part of the Gynecologic Cancer Initiative steering committee. Dr. Brotto holds a Canada Research Chair in women's sexual health. She is the director of the UBC sexual health laboratory where research primarily focuses on advancing the science of psychological and mindfulness based interventions for women's sexual health. Her research program focuses on quality of life, bio psychosocial correlates of health, intimacy, and sexuality primarily in women. She's led a series of efficacy studies evaluating face to face as well as online interventions to address and improve sexual health in gynecologic cancer survivors. Welcome to the podcast Lori, thanks for joining.

Lori

Thank you so much for having me here. Nicole, I'm really looking forward to this conversation.

Nicole

I am as well, this is something that has impacted me greatly. So I'm really excited to have you here and to share more with our listeners. Why don't you start off by telling us a little bit more about your research program? 

Lori

Okay, thank you. So, by training, I'm a registered psychologist. And my home is the UBC department of Obstetrics and Gynecology and it actually makes a lot of sense to have a psychologist and a psychological researcher in a department of that's focused on women's health because very often, there are psychosocial and psychological aspects of women's health conditions, including gynecologic cancer, that can have lasting effects on on women, long after the kind of medical surgical aspects of care have been successfully completed, and women quote unquote, resume their lives. So the focus of my work is really on establishing evidence for psychological and mindfulness based and we can certainly talk more about mindfulness and its role, but for sexual health concerns across a variety of different populations of women, including survivors. So we've designed and led large, randomized trials evaluating different kinds of psychological treatments, to is to determine how effective are these treatments for addressing sexual health concerns, including pain, genital pain? And then who are the women to benefit most from these kinds of treatments so that when women might be talking to a family doctor or another care provider, that clinician would have some informed evidence to be able to say, yeah, you would do really well in this psychological support system versus this one. So that's, in a nutshell, the focus of our work. 

Nicole

Such important work. So your research is on sexual health but also includes work on sexual difficulties. So you can talk a little bit about what kind of difficulties are common for women?

Lori

Yeah, it's been a question of, I'd say recent interest, mostly thanks to the success of the blockbuster erectile dysfunction medication Viagra. So in 1999, when Viagra was approved in Canada, the the world suddenly said, Oh, what about women's sexual health concerns? Thanks Viagra for that. So really since then, so about the last 20 ish years, there's been a lot of research focused on what are the kinds of sexual concerns that women expres?. What form do they take? What would be the kinds of risk factors or predictors that would lead a woman to have a sexual concern? So since then there have actually been quite a number of very large population based studies that have tried to quantify this. And in general, we know that about a third of women, so I'm lumping all women together across ages, across demographics, across whether they have medical issues and chronic health conditions or not, but about a third of women will have significant sexual issues lasting at least three months or more in a given year. That's across ages. And for most of those, age doesn't play a huge role. And that really runs counter I think, to a lot of societal myths, which is every everyone's having loads of happy, fun sex, and then you hit menopause, and things change, and women are no longer interested because sex hurts. And actually, the data don't support that at all. They show, and we've certainly seen this as well, pretty distressing sexual concerns, including pain with sexual activity, lack of interest, no desire for sex, even in very young women.

Nicole

Mm hmm. And is that like, if we look at the equivalent in men? Is it more typical in age? Or does it spread across age groups as well?

Lori

That's a really good question. So when we look at the more functional kinds of sexual response, so let's say like erectile function, which, you know, the data would argue that it relies more so on blood flow and internal physiology than say, social and contextual and psychological factors. So erectile dysfunction is very much related to age, we see an increase in how common that is as as men age. But sexual desire, on the other hand, in men, low desire is actually not age related. And in my clinical practice, I just as I see a lot of women with low desire, I also see a lot of men, young men with low desire. I can say one more thing about that. And I think so first of all, women are more likely to have sexual concerns than men. So, you know, whereas low desire affects about 15% of men, like I said, we see about 30% of women. So, you know, is that because of their their sex and their biology? Or is it because of their gender and their roles and their tendency to take on a lot. And all of which we know are risk factors for low desire and proneness to stress, etc. So there is that gender difference with women being more likely to have sexual concerns than men. And then the second thing that's really, really important is that there are a lot of medical treatment options for men's sexual concerns, low desire or premature ejaculation or erectile dysfunction. And for women, there really isn't. It's not in part, it's because of the lack of research. But the other part of it is, there's probably more complexity there with women's sexuality and it being less dependent on nerves and blood flow and, and that sort of thing.

Nicole

Yeah, that makes sense. Well, if we want to talk specifically about gynecologic cancer patients, why is sexual health specifically important to this group?

Lori 

Yeah, it is so important to this group. I was first introduced to this concept of sexual dysfunction in gynecologic cancer survivors when I was a fellow doing a research fellowship at the University of Washington in Seattle. And what had an opportunity to do some research at Seattle Cancer Care Alliance, working with the team of surgeons who were doing surgery and and they noticed that, in particular, the women with cervical cancer, that, you know, they had terrific outcomes from the surgery. Were very, very happy with the success of the surgery. And yet at the same time, these women were reporting really lasting sexual concerns, low desire, lack of feeling, sensations, or genitals, feeling disconnected from their body, feeling betrayed by their body. All of which was really invisible to the outside, right? Invisible to a physical exam. And so I had this incredible opportunity to really work with and learn from these survivors and have them teach me about what was what was the how did they experience these sexual concerns. At the same time, as I was doing that research, I was introduced to mindfulness and was very intrigued as because I was a stressed, burnt out fellow and and really needed something to give me a concrete skill to practice to manage my own anxieties, etc. And it struck me at the time that what I was learning through my my, my personal mindfulness practice and connecting with myself and my body, I had this thought one day that could this be useful in any way to these survivors, who told me that they felt very disconnected and betrayed from their body. So we essentially work together, and together with a group of survivors, we put together a treatment program, we tested it out and then tested it refined, it tested it out in a slightly larger group. And it really formed the basis for, I'd say, most of my research after that, after that time point, and I think one of the most striking things that I learned and that they learned from doing this work, is that mindfulness could absolutely allow them to tune into their bodies again, in a way that they had sort of accepted was no longer possible. And it was, it was striking for me, and, and I, I still remember that day back in 2003, when I said, I need to understand this, because if this small group of women are benefiting from this, we need to figure out a way to make this more available. 

Nicole

Yeah, absolutely. That's, I think that's a really interesting point, I've, you know, when I share my story, I often leave this piece out. And I think, you know, that comes to maybe a bit of like, I'm uncomfortable talking about it, or, you know, there's a bit of an embarrassment there. But I think when I have talked about it, it's been more in relation to the pain. And that seems like a comfortable, okay thing to share that, that you know, having post surgery, being in menopause now, it makes sense. But the the rest of it, the disconnection that you're talking about, that feeling of like betrayal, that, you know, my body's let me down in some way. And that just, you know, I don't want to say it's a loss of desire, but it's really just like, I think, throughout the cancer journey, and my partner's been in a long that is, we're talking about my vagina in a very matter of fact way. And it becomes really unsexy. And how do you then move on to go back to have this normal type of relationship and in and out of treatments, there's periods of, you know, where you had to abstain from sexual intercourse. And so it just becomes very irregular. And then it's come into this pattern where it's just, you know, it is what it is, but a lot of what's going on has nothing to do about the pain anymore. It's so much more. It's so much bigger than that. And there's a lot of psychological factors that I think are in there. But how do we get more women, and even their partners, more comfortable about talking about this? And I would say even maybe on on the healthcare providers side, how do we get this conversation going? Because I think it's so so important to your overall health?

Lori

Yeah, well, first of all, thank you for for sharing that personal perspective. And I think, you know, the beauty of a podcast is, is the storytelling and that, that there will be people listening to this, who really resonate with what you've just shared. So this is one way and it is how do we bring these stories and these experiences out into mainstream and media? First of all, yeah, so that people feel like they can ask for help, if they're not doing well. And, you know, I alluded earlier to some of the really harmful societal stereotypes about sex, especially sex and young people. And we know that a lot of women who have who with cervical cancer are young women, that again, from the outside, the rest of the world would assume, oh, they're young, they're healthy. They must have a great sex life. There's no concerns there. And so that just compounds the sense of whether it's embarrassment or shame or awkwardness or feeling like oh, my gosh, I'm so alone. How can I talk about this? On top of that, I think there's an additional layer of, you know, gratefulness, that I've survived this, right. I should just be grateful sex is just a frivolous activity. I can live without it. And that's really unfortunate because we know that sexual health is part of global health. It's a core part of quality of life, regardless of whether you're in a relationship or not. 

And so the second part of improving the conversation is really at the healthcare provider level. We need to make sure that our cancer Doc's that, that the surgeons that you're seeing and follow up, the radiation oncologists, etc, that they're checking in and asking about sexual health and creating a safe space so that women can say things are not going well, I need help. And so part of that involves educating those care providers. So what I always say to them is just have a book on your shelf that is a sex friendly book, and that that that in and of itself will communicate to your patient that yes, you can talk about sex in this office. So they need to find some way of improving their own knowledge and comfort on the conversation. But then also having the tools at their disposal for the event when someone says, yeah, I'm really struggling, where can I get help?

Nicole

Yeah, absolutely. And this is something that, you know, if you think of the cancer journey, is, you know, if we look at when a cancer patient should be concerned about this, it doesn't necessarily have to be at the end of their treatment. It could be right from the start that they could be engaging in this conversation, could it not?

Lori

100%, we did a study a few years ago, where we asked a variety of gynecologic cancer survivors that very question it was, at what point along the journey would you have wanted someone to address sexual health? And like 90% of them said as early as possible. Now, there's a lot of information that that the patient is facing, yeah, immediately after diagnosis, and all the pamphlets and paperwork and lots to read and lots to digest. But it can be a conversation that happens over multiple visits with even a piece of paper or even a brief mention. ‘Hey, just so you know, sexual health is important. It's an important part of the journey. If and when you ever want to talk about this, please know that we would invite you to do that here.’ And for some women, they actually want to get started early on, like even before treatment. They want to know what vaginal dilators are, they want to know, what are the safe kinds of lubricants that they can use after radiation therapy. They want to start practicing skills that they can use during their treatment, and after that also would be relevant for improving their sexual health. So we need care providers need to be really careful that they're not making assumptions that, you know, ‘oh, I shouldn't talk about this, because it's too early.’ It's not It's not too late. It should be it should be an ongoing conversation.

Nicole

Yeah, I totally agree with that. So can you share more about some of the the psychological and the mindfulness based interventions that you work on? For those who are experiencing sexual health difficulties?

Lori

Yeah, and, you know, there are there are some unique aspects of being a survivor. That, that that maybe wouldn't apply to all women who are struggling with sexuality. So for example, fear of cancer recurrence, right, which is very real, and very palpable, for a lot of women. Especially, you know, when those regular visits to their doctor or the cancer center are finished. Suddenly, survivors experience a spike in anxiety and, and and it is irrational. The under the underlying belief is, oh my gosh, because I'm not going anywhere, my chances of recurrence have increased, which is, there's no link there. But the anxiety is real, even if even though it's irrational, it is a real palpable anxiety that affects the muscles of the body, the neurotransmitters, cortisol, which is the stress hormone, and then other thoughts and feelings as well. So that kind of hyper vigilance, you know, maybe hyper scanning of the body can create an anxiety in and of itself, even in a person who has no history of anxiety. So that's a real, a real kind of psychological consequence that lends itself really well to a mindfulness based approach, which is, you know, rooting the person in the moment. It's this kind of tendency to fear the worst in the future, that is creating the anxiety. So the skill of mindfulness which is present moment, non judgmental awareness is a really good antidote to that tendency to be catastrophizing about what's going to happen in the future. We also know that there might be sadness, depression, feelings of loss, feelings of guilt, etc. And, and for some women, even a full fledged depression as well which can directly impact sexual function all different aspects of sexual function, pain, desire, ability to reach orgasm, ability to feel in general. And we also have a lot of evidence at mind that mindfulness can be a really important tool for combating depression and improving mood in general. So those are just two of the different ways that mindfulness improves those two psychological symptoms. But in turn, when those improve, then we see also improvements in sexual health.

Nicole

Yeah, absolutely. So if if one was gonna embark on using mindfulness, what would that look like?

Lori

Yeah, so low hanging fruit is usually the rule of thumb. So start easy, start five minutes a day, download an app, there's lots of really good apps that deliver customized, you know, 10 minute guided meditation sessions every day. So for example, the Calm app, you can indicate if you want it for sleep, or for anxiety or for something else. So the first and foremost is establishing a regular practice and implementing it in your regular life, not just when you're feeling bad, or not just when you're feeling stressed. There are lots of online mindfulness groups. And right now, because of COVID, and we're not able to have those face to face groups, a lot of those meditation groups, or mindfulness based cognitive therapy, or mindfulness based stress reduction have moved online.

And then for women who really want to integrate this into their sexuality, that's usually where I recommend seeing a qualified professional, a sex therapist, or a psychologist with expertise in sexual health and mindfulness that can fold this into the work that they're doing. My book, ‘Better Sex With Mindfulness’ walks women through all the exercise, and it's really based on the science of us running these groups with women. And because, of course, our science stays buried in medical journals. That can be very difficult to read, I was convinced that I had to write a book. So there's that option that's available.

Nicole

Amazing. And, you know, if a patient goes to their healthcare provider, or is that a good resource as well, to get pointed in the right direction, and who to get in contact with or?

Lori

Yeah, it, you know, I would say yes, that everyone should talk to their healthcare provider. But of course, not all healthcare providers have the information necessary in order to adequately assess sexual function, nor do they all know the resources that are out there. So if you're unhappy with the response from one care provider, try and talk to another one. Certainly a gynecologist. We know that that gynecologist more likely than not have had training and sexual health and know the available treatments, even if they're not delivering it themselves. They can certainly point women in the right direction. And then they're like I mentioned there are sex therapists or psychologists that specialize in sexual health. Those tend to be in, like private clinics, and private practices and that sort of thing.

Nicole

Right. Okay. So the help is out there. You might just have to do a little digging on your own. So is there any new research that you're working on related to this topic right now?

Lori

Yeah, I mean, one of the teeny, tiny silver linings of COVID has been our moving all of our groups online to digital. And so since essentially March, mid March 2020, we were just about to start running a study with breast cancer survivors, comparing mindfulness to pure education alone, and we had the women lined up ready to go, the group was about to start the next week. COVID hit. Literally, the women were like, No, we can't not go to groups. So we just moved it online. And we've been running the study online ever since with breast cancer survivors from across the province. And the the silver lining has meant that we are able to access women from all reaches of the province, not just not just those who can get who can pay for parking and drive to our center. So it's really led us to explore, can we take all of the interventions that we had been doing face to face and modify them to an online platform? So we've been building a program called ‘E-scence.’ We got some funding this year to really evaluate the platform. So it's not with a healthcare provide, E-scense. But we created quite a number of audio guides of our mindfulness as well as videos. So you'll see me talking head kind of explaining the concepts explaining the skills. And then women at a self directed pace work through the eight modules. And we've developed this for mindfulness, so eight modules of mindfulness. And then in parallel eight modules of cognitive behavioral therapy, which is another well established psychological treatment for sexual concerns. And so right now we're just evaluating those two against each other to see what works better for which women and and, and how long are those benefits maintained for? So of course, the the benefit of that is that women could work through it at their own pace as free. They're not paying for parking.

Nicole

They can do it In the comfort of their own home. 

Lori

Yeah. So I'm really excited about that work. And and if it does work, if we discover that it meets women's needs, that it is effective, then we can scale it up and make it available across the province. And maybe across the country, too. 

Nicole

Well, I would imagine there is, you know, not just in, as we talked about, not just in gynecologic cancer survivors, but women as a whole, even if you're just wanting to improve your your sexual health in general, like if you're not even truly struggling, but we go through, you know, how stress affects that you get busy, you get tired. Just having those opportunities and outlets to, to work on that. I'm sure it would be a blessing for a lot of women.

Lori

Yeah, I think so. And that's the feedback we've been getting so far is, you know, do I have to be struggling in order to do this and benefit from it. So there, there's definitely is a demand there. And again, it harkens back I think, to inadequate sex education, myths and stereotypes, the fact that unfortunately, a lot of people get their sex education from pornography. And which, you know, is a very distorted view of  how real sex and real bodies happen. So there there is a need for these kind of general sexual health improvement programs as well.

Nicole

Yeah. You know, and, and even at the school level, you think back to I got very little, if any, education at a school level, so would be wonderful to see some improvements and some improvements there. All right. Well, anything else that you think we should focus on?

Lori

Yeah, maybe that just all I'll make a quick mention about women who are not in relationships. And, you know, sex often takes place in a relationship, but it doesn't always take place in a relationship and, and and my own observation is that single women, whether they're cancer survivors or not, are often kind of neglected when it when it comes to their sex and, and maybe there's a perception that, well, you're not in a relationship, why should a sexual concern even bother you? Why should it matter? First of all, solo sex is a real thing, and it can be a very rewarding part of a person's sexuality. Secondly, sexual concerns might be preventing women from wanting to be in a relationship, and I certainly see a lot of women in my private practice who say, help me fix the sexual issue before I get into a relationship. 

And so, so yeah, we just want to be mindful that, you know, sex occurs in whatever form for every person regardless of age, demographic, relationship status, a built physical ability level, etc. So it's a it's a much bigger conversation than, you know, just people who are in relationships.

Nicole

Absolutely. I mean, even the the concept of solo sex, is that something that you know, for those women who are feeling really disconnected and struggling out with their partner is solo sex a better place to start?

Lori

Yeah. Yeah, we we in our face to face groups that we've run over the years actually now in our online groups too. We have a whole section around we call it ‘self touch’.  Sort of give women permission and and it's important because for some women they they feel very uncomfortable with the thought of masturbating and and the doctor said to go home and masturbate so we call it self touch. And then we walk them through we have an audio guide that actually guides them through so they feel like okay, this is part of my homework.

And for and for a lot of women, you know, It's the first time they've ever used a handheld mirror to look at themselves or gave themselves permission to touch and explore what things feel like, not necessarily for the purposes of arousal or orgasm, but just for pure purposes of getting to know what different parts of the body feel like. So yeah, I think that's another really critical one for women across the board is, is helping them feel empowered and giving them permission to do that really important exploratory work. Who are you? What feels good? What doesn’t feel good?

Nicole 

Yeah, yeah. Yeah, absolutely. I mean, even the concept of the the dilators that they give you after, you know, radiation, I nicknamed mine, the candlesticks. But, you know, is there an opportunity there to bring something in that is a little more pleasurable or comfortable to do some of that exploration with yourself? That might lead you to, to a better place.

Wonderful. Well, thank you so much for joining Lori. Really appreciate having you on the show.

Lori

Thank you. I, it, I'm so glad we had this conversation. Thank you, thank you for giving me the opportunity to talk about it. And I hope that the information is useful to the people who hear it and I hope that you know, it helps a listener or someone to feel like they're not alone. And that they shouldn't have to suffer in silence. And if they want to find out more or want to get in touch with me about research, or you know, where they might get help to absolutely reach out I'm pretty easy to find online, whether it's social media or email, but would be happy to point people in the right direction. 

Nicole

Yeah, or even we can link out in the show notes, any good resources or where to find you on the social networks. So that's a great add to include. Thanks. 

Lori 

Thanks Nicole

Outro 

Thanks for joining us on the GOSH podcast. To learn more about the Gynecologic Cancer Initiative and our podcast, make sure to check out our website at gynecancerinitiative.ca