Sexual Function in Serious Illness: Areej El-Jawahri, Sharon Bober, and Don Dizon

Eric 00:00

Welcome to the GeriPal podcast. This is Eric Widera.

Alex 00:03

This is Alex Smith.

Eric 00:04

And Alex, who do we have with us today?

Alex 00:06

We are delighted to welcome back Areej El-Jawahri, who’s an oncologist at Massachusetts General Hospital who specializes in blood cancers. And she gave a talk about research in sexual health and cancer at the state of the science meeting a few months ago. I was in the other room, but heard laughter coming from that room and heard great things about her talk, so invited her to join us today. Areej welcome back to GeriPal.

Areej 00:34

Thank you so much for having me back. It’s a great topic to be talking about, and humor is the best way to talk about this topic.

Alex 00:41

I will tell you we’re looking forward to this. We are also delighted to welcome Sharon Bober, who’s a clinical psychologist and founding director of the sexual health program at Dana Farber Cancer Institute. Sharon, welcome to Jerry Powell.

Sharon 00:55

So nice to be here. Thank you.

Alex 00:57

And we’re delighted to welcome Don Dizan, who is an oncologist who specializes in pelvic malignancies and is founder of the Oncology Sexual Health First Responders program at Rhode Island Hospital and Brown University. Don, welcome to GeriPal.

Don 01:11

Thank you so much.

Eric 01:13

So we got a lot to cover today on sexuality, sexual health and serious illness. But before we do, Sharon, do you have a song request for Alex?

Sharon 01:23

Oh, gosh, a song request. Well, I can never go wrong when I think of Lady Gaga, so maybe something in that domain.

Eric 01:33

Alex, you got a lady Gaga song you’re ready for?

Alex 01:36

Well, I love Lady Gaga as an artist, and we don’t think we’ve ever done Lady Gaga on this podcast. So this is the first time we’re doing Lady Gaga. And so it seemed like bad romance is a fitting tune. Here’s a little bit. Ra ra ra ra.

Alex 01:58

(singing)

Areej 03:13

Wow. That was fantastic.

Eric 03:15

Sharon, I gotta ask you, why lady Gaga and how did you feel about the song pick.

Sharon 03:23

You know, like I said, I just don’t think you ever can go wrong with Lady Gaga. She’s an amazing artist, and, you know, I guess it was kind of topical for the podcast today, so good choice.

Eric 03:37

I’m going to start off. So we got a lot to cover on sexuality, sexual health, and serious illness. Arish, I missed your talk. The state of the science. Tell me, what did you talk about?

Areej 03:50

So at the state of the science, I was actually presenting a study that was focused on addressing sexual health concerns in transplant survivors, and I actually told the story of the state of the science for those of you who were there. But as you know, I’m a palliative care researcher and supportive care researcher, so never in a million years when I started sort of working in the clinic thought, would I ever be doing sexual health work. And it actually came up during a clinical encounter that I had. So I was taking care of a young woman who was 31, had leukemia, had a stem cell transplant, and I had seen her for her two year follow up visit, and she was doing actually great. She was off immunosuppression, her disease was in remission.

So it was more of a social visit. And here I am considering myself all palliative care or supportive care. You know, I address all the supportive care needs of my patients. And as I was walking, literally outside of the room, she said, doctor Aljawari, can I ask you one question before you leave? And I said, sure. And she’s like, is it okay for me to kiss my husband now? So this is about two and a half, three years out from leukemia diagnosis. And I had that mortified look on my face of God. We haven’t really talked about this. We haven’t even talked about your sexual health, your intimacy. I didn’t realize you haven’t been kissing your husband for the past two and a half, three years. And I work right next to Don at the time. So I went right next door, and I was like, don, we don’t talk about this. He was like, yeah, tell me about it. Here are some articles that Kira and I have written about the topic, and that’s really how my interest in addressing sexual health concerns started.

Eric 05:33

Yeah, how about you don’t? How did you get interested in this?

Don 05:37

You know, I was actually quite lucky, I suppose. I trained in the, what I like to call the early two thousands at Sloan Kettering. And the service that I was on was gyn oncology. And we shared the floor with the department of Gynecology, and within the department of Gynecology was the sexual health program, which was co lead by a psychologist as well as a gynecologist. And they would actually come in and we would chat a lot just about being faculty at Sloan Kettering. But at one point, I was asked my opinion about a rash that appeared on a woman’s vulva while she was on chemotherapy. And this rash on this chemotherapy called liposomal doxorus, and typically happens on the hands and the feet.

She had it on her vulva, and it was quite horrific. And we ended up writing up that case. So when I left Sloan Kettering for Brown, I realized that not a lot of people had access to a gynecologist who specialized in cancer, nor did anybody have any access to sexual health counseling like I had become accustomed to having being at Sloan Kettering. And that really is what prompted me to get certified as a sexual education provider. And then I subsequently entail, yeah, it was interesting. I actually went to planned parenthood of Rhode island, and as a practicing oncologist, sat with folks, some of who had just graduated high school, others who were nurse practitioners, and they started from the very, very basics of pelvic anatomy. And, you know, every time I was like, who wants to show us where the mom’s pubis is? And everybody would look at me, I was like, no, no, no. You should answer the anatomy questions. But it was a really an exciting thing. Although I do this work in cancer, it was also a real opportunity to study sexuality and anatomy without that lens of cancer. So that when I went back into my work, I didn’t see things only in that lens of cancer.

I could actually see it as sexuality and then see how cancer was impacting sexuality rather than the other way around. Yeah, but that’s how I started. And since then, I started a program at the first hospital, as at women in infants hospital, and then I started one at Mass General, where I worked together, and we cross refer to Sharon Bober all the time. And then I started one here at Rhode island. It’s purposefully called the first responders clinic, and not for the patients who are referred to, it’s for my colleagues. And Aryse can talk about this a little bit about her work. But once you establish the service, it’s literally you take the panicked phone calls from people who don’t know what to do with it. So the first responder is a nod to my colleagues who are not able willing, comfortable to talk about, so they can pick up the phone, call me, and I can take care of that visit down the line.

Eric 08:57

That’s fascinating, and we’ll get more to that. But Sharon, I want to hear kind of your origin story when it comes to sexual health.

Sharon 09:05

Well, my origin story really goes back around the same time frame as my colleagues. I came to Dana Farber to, at the time, primarily work with adult survivors of pediatric cancer. So I was working with young adults and who looked good and were long term survivors, and people were thrilled at how well they were doing. And as part of my general assessment, I would ask about sexual health, and everybody looked at me and said, you’re the first person to ever ask me that question, and it’s terrible. And to be honest, my first gut instinct was that, you know, maybe this was like a New England problem, because, like, I’m not from New England. And I quickly realized that this was not a New England problem, but that really started what was then a very long multi year process of education and training, because, as I often mentioned to my colleagues, despite having done a PhD in clinical psychology with a heavy bent on developmental psychology and family systems and a postdoc and clinical work, I did a year of postdoctoral work with, literally family and marital therapy. I learned nothing. I had 2 hours of conversation about sexuality at some point ten years earlier, and I learned nothing about this. And it’s a little crazy, right, when you think about that.

So that was really what got me started. And I was very grateful, because when I went to my, ultimately to my colleagues in senior leadership at Dana Farber, and I said I wanted to do this, sort of looked at me and were like, well, that just sounds nutty because we don’t have that problem and nobody’s going to come. And. But they were like, you know, so let’s take yourself out if you want to, you want to try that for a couple of hours a week, you know, whatever. And, you know, but I think we all have had the same experience, right. You realize that once you open that door, there’s an avalanche of need, and people are very grateful. So I think it’s, you know, we all sort of share in a lot of ways that basic story.

Eric 11:19

Well, that brings up two things, is that what’s the need out there? And also, how do you bring it up with patients? I’m going to start off with the need question, what do we know about sexual health and cancer, cancer survivors, people undergoing cancer treatments? Arige, I’m going to start off with you.

Areej 11:35

Yeah, I mean, you know, to be honest with you, this is one of the most, if not the most prevalent issue affecting cancer survivors at large. And the population I care for, it’s certainly the number one prevalent issue affecting cancer.

Eric 11:48

Number one.

Areej 11:49

Number one by far.

Alex 11:51

Wow.

Areej 11:52

And so, you know, it’s up there with fatigue, as you could imagine, as one of the top, top issues affecting cancer survivors. The challenge with all of it, Eric, is actually also related to how often we ask. How do we ask, are the prevalent data really? They’re probably underreported, to be honest with you, just given a lot of the perceived sort of stigma around talking about this topic. So we’ve seen that in even our studies. Who asks about sexual health and intimacy? Whether it’s our research coordinator, what is interesting, the transplant physician or the transplant app or the transplant nurse, you get different answers. And so clearly it matters how you bring up the topic, who brings up the topic, and probably the timing when this comes up for patients and families, just like we think about conversations about illness and prognostic understanding, I wish there was a good prevalent state data on how big this is of a problem in serious illness at large.

I think this is a topic we don’t talk about as much in the context of serious illness. But I can tell you, even beyond survivors and people living with metastatic cancer and patients living with serious illness, this is a prevalent issue in part because also the dynamic between partners changes as a result of disease. There is a patient caregiver relationship that evolves over time, and there’s less of a focus on intimacy in that relationship. So there’s a lot of factors that contribute beyond the biology, if you will.

Eric 13:26

And I can imagine sexual health is a huge topic from, I mean, we’re bringing up words like intimacy to, it could encompass a lot of different kind of needs, I wonder, from, I guess it’s hard to pinpoint prevalence data, but do we have a sense of, like, what are the most common things that are coming up, either people getting cancer treatments or survivors when it comes to sexual health?

Don 13:50

Well, you know, I think one of the issues, though, when you ask about prevalence data, especially, say, in the oncology world, not only does it matter about how you ask the questions, but because it’s such a complicated topic, people may infer very different things as to what you’re talking about. So if I asked 100 people say, treated for, you know, treated for breast cancer, are you having issues with intercourse? Are you having pain with intercourse? And they say, no, right? Then I’ll say, okay, well, there’s no sexual health issues at all. But if I say, you know, is the, how are you? Are you having issues with emotional intimacy? With your partner, you might get 99%. So again, you know, it’s not just is your sexual health, has it been impacted by cancer or not? Especially if you think about how, you know, sexual health operates in cisgendered women, right. It’s more of multiple domains that all play together at the same time. It’s, you know, it’s the experience of touch.

It’s the experience of how someone sees themselves in terms of body image, the desire, arousal, and they all feed upon each other, you know, whereas post, to say men, traditionally, you know, sexual health, in men, it’s an on and off switch, either if you have an erection, then you want to be intimate because they’re sort of all merged together, which, you know, I argue that it’s totally not the case, but, you know, a very complicated thing. But most surveys, it’s like as low as 40% to almost 100% and really depends on how you ask the questions.

Sharon 15:21

Right. So I think that Don’s making a super important point here, which is that in contrast to other side effects of all kinds of illness, right. When we talk about fatigue or nausea, you know, what sexuality means is essentially a much richer multifactorial experience. Right. It’s just simply not a one dimensional thing. So, you know, in addition. So, absolutely, I agree with what Don said. And so when we think about. When we say, how do you ask the question? It really is like, there are so many things that we. You ask a question, like, how about pain, about nausea? It means it’s a pretty one dimensional construct. And sexuality is exactly the opposite of that. Right. It sits at the intersection of emotion, interpersonal, physical, psychological, cultural. So, you know, if you don’t ask in a sort of open ended way, you don’t even. You can’t even.

You may not even be getting at the issues. I’m thinking a lot about all these young adults that I work with who have never had sex, right? Like, if you’re. Things have been sort of gotten off track for you when you’re a teenager or a young adult, right, where you’ve never dated. Right. And everybody else has sort of gone on and done all kinds of things in terms of developmentally exploring themselves, partners, whatever. And now you are 29 years old and you’ve literally never kissed someone and you feel completely out of sync with your peers. If you were just to ask somebody a question, how’s your sex life? They might just be like, fine. Cause it doesn’t even begin to get at the kind of complexity of issues that have been disrupted.

So I think that’s actually one of the real issues we have to deal with also as a field, because I would say on one hand, there’s great news that there’s a lot of people interested in this topic, and I think there’s more tension now than ever. But on the other hand, when we look at sort of how we address it and the kind of words and questions and queries, they’re often super limited. And I think we often just don’t even, as Don was saying, we don’t even get at the problems.

Eric 17:28

So on one hand, you could say, this is so complex, it’s overwhelming. I’m just not even going to bring it up because it’s so complex and overwhelming. But I’m guessing you all bring it up, and I wonder.

Don 17:42

We are seeing the people after it’s been brought up by somebody else.

Eric 17:46

Well, how do you train them, the frontline people seeing these patients, healthcare providers, geriatricians, oncologists? What questions should we be asking when it comes to sexual health if the patient’s not bringing it up with us, which oftentimes they’re not?

Don 18:05

Well, I think Sharon has a really nice model on how to do this, and there’s certainly other models, but I’m of the. And I think a reason I remember talking to you about this as well, sort of, you know, if you just build it in to the first times, multiple few times, you’re seeing a patient. We’re not talking about a sexual history of, you know, how many partners have you had in your life?

Eric 18:25

You, med school?

Don 18:27

What sexual positions do you like? Did you ever use a condom? Have you ever been? That’s not what we’re talking about, but what we are talking about, especially. It could be cancer, it could be end stage heart disease. You know, it’s more about, you know, a lot of folks may have issues when it comes to sex as well as intimacy, when they’re dealing with getting so sick. Is this something you want to talk about? And the point of that is that so many people, in my experience, and I’m sure it’s the same initial diagnosis of cancer, that’s the last thing that I want to talk about. A lot of people, and we have some data to say that you might have distress, but sex is not one of the reasons for your distress when you’re first diagnosed. But people remember, they will remember you asked that question. And when they’re ready to approach it, they’re probably, I don’t share. I think they’re less likely to be, you know, intimidated by it, because they will remember you asked me about it once. And that’s what I just keep, you know, whenever I talk about that, I’m like, just build it in. When you’re getting to know somebody, just mention, hey, if it ever happens to you, I’m okay talking about it. Because when they’re ready, they’ll do it.

Areej 19:33

And I think Don. I think Don brings up a couple of really important points about this. One is, we’ve talked about this again, there’s a lot of parallels, I think, between talking about prognosis and talking about sexual health, actually, to be honest with you. So we think about prognostic communication as a process. Over time, we stop thinking about it as a one time disclosure. And this is the same idea here. It is helpful to be talking about this over time, that the first time you bring it up, maybe the person is actually not in a place where they want to be talking about it. They don’t feel like this is the topic. They want to talk to their oncologist about the first time they’re seeing them. But knowing that you open the door and bring up the topic in the future is helpful. The second piece, I want to stress that dawn says that I think we do a lot. I think even intimacy is a word that means different things to different people. And so two things that are, I think, really helpful.

One is just normalizing how prevalent this issue is. And Don kind of said that very quickly, but I want to highlight that often. I start the conversation by saying, it’s really common for my patients who’ve gone through this to have a lot of issues affecting their intimacy, both physical, how they’re connected with their partner physically, and, like, touching and doing things. So give examples, concrete examples, but also emotionally feeling distant from their partner if they have a partner. If they don’t have a partner, kind of mirroring that language to be thinking about finding a partner, identifying a partner for. For intimacy or sexual health, like having intercourse or desire for sexual health. So provide multiple sort of concrete examples of what you’re talking about. To provide sort of the domains and normalize it. It’s very common to see this. I want you to feel comfortable talking to me about it. Have you had any issues in any of these domains? If they say no and say, that’s fantastic, please know that I’m here to talk to you about it in the future.

Approach the topic again a few months later and ask the same questions. I find that to be just. I can’t tell you how many times even we see our patients week to week. And sometimes I would ask the question one week and I hear nothing. And the next week they come in to Don’s point and they say, hey, you know, you mentioned this thing last time I talked to IUI. Actually, we should talk about this. So a lot of times it requires a little bit of nudging and giving people space to think about whether they want to talk about it and when they want to bring it up.

Sharon 21:57

Yeah. I also just would add that not everybody is distressed about these changes. Right. So I think it sort of goes hand in or hand in something. I’m not gonna.

Speaker 6 22:08

I don’t know.

Sharon 22:09

I’m an old lady. I don’t remember a damn thing I say. But I mean, that idea of saying, do you want to talk about it? The implication I really want to just sort of make explicit there is that people have lots of changes and they’re not always distressed about them. And that’s fine. I think what’s important here is that to everyone’s point, you want to normalize this. It’s just a part of review of systems, the way we talk about all kinds of things or ask about all kinds of things. But you also acknowledge, you know, the key here is that if there’s something different or change that’s distressing to you, then it deserves attention, you know? And I think that, you know, so implied in that idea you want to talk about it is really recognizing that, you know, there may be changes that are not anything that you’re. That you’re concerned about right now, but that if there’s some distress or some concern, it’s actually a valid thing to be able to address.

And I would just say that I think the least from my point of view, what often happens is the assumption from a patient’s perspective, when it’s not brought up, is that it one isn’t fixable, because the assumption is that if it doesn’t come up, this is just part of what I call the high price you pay for staying alive. The assumption is that it can’t be addressed or that it’s not worthy or that it’s just one of those things that isn’t important enough. Both of those things, beyond the fact that they’re not true. Often it’s not even what the clinician feels, but they’re just. If you don’t have any training and you’re not sure what to say or where to send someone, you’re reluctant to open that door. So I think that it’s really important to be able to give people that feedback just so that they know that these are not just valid issues, but that there’s actually help available.

Eric 23:50

I guess that brings up to one of the barriers for clinicians. And I can imagine the barriers include, a, I don’t know how to bring it up, and b, if I bring it up, what the heck am I gonna do about it?

Don 24:02

Yeah, it’s actually, it’s more about what the hell am I gonna hear? It’s like, literally, I think there’s a fear of opening pandora’s box and saying, oh, my God, these are all freaks. Oh, my God.

Eric 24:17

I’m not sure it’s that versus, like, this idea that, like, as physicians in particular, we’re in a fix it mentality. Like, we hear a problem, we want to fix it. Here’s the problem. Here’s the fix. And it’s so focused on that that I think it also worries us that we’re going to hear a problem that we have no idea for sure. For sure.

Areej 24:39

For sure.

Sharon 24:40

I mean, when we do those surveys and ask physicians the questions or providers, that’s what providers say. I don’t feel confident. I don’t know what to say. So I think it’s actually one of the things I would imagine we all agree on here is that it’s actually not good enough just to say, say, here’s the question. Right? Like, if you don’t actually give people the roadmap for, then what to do when the patient endorses a problem, it’s not actually fair. Right. We actually do need to give people a roadmap. So you need to know, like, what are the basic resources that you have to have available to offer? You know, where do you send somebody who is a pelvic, what is a pelvic floor physical therapist and how do you find them? I mean, I don’t actually think it’s. We sort of set physicians, or I would say we set medical providers up a little bit when we say, you really should us ask, but then we don’t give them the resources or the sense of training about what to do next.

Alex 25:33

Well, you brought up pelvic floor physical therapist, and you said, what is that? I don’t know what that is. Our listeners may be wondering, could one of you describe what that is?

Sharon 25:43

Don, do you want to take that one?

Don 25:44

No, go ahead, Sharon. You could do it. Yeah.

Sharon 25:46

So there’s an incredible subspecialty within physical therapy called pelvic floor physical therapy. So these are folks that have incredibly nuanced specialized training working with the, a huge sling of muscles, essentially, that gird. The pelvic floor, which for men and women, for all people, can be deeply impacted by all kinds of treatments, whether somebody has surgery, pelvic radiation. For women who have the experience of trauma or painful sex, and where they develop a kind of an automatic clenching of that pelvic floor, we call that vaginismus. There’s a name for that. You know, there are all kinds of ways in which the pelvic floor is impacted. I mean, typically, we only think about that if you had a baby and people say, oh, do Kegel exercises, right, where women hear popular culture, clench, clench, clench. You want to make the pelvic floor tighter. But the reality is, you know, when the pelvic floor is impacted by all kinds of treatments for all kinds of people, has a huge impact on sexual function, on capacity for pleasure and whatnot. And there actually is a modality within physical therapy that’s incredibly powerful and helpful. But if you don’t know about it and you don’t have to resource that or access that, that’s important. So just a good example of something that we sort of think of as one of the tools in the toolkit that we often offer.

Don 27:16

Yeah, but I mean, I think one other thing, though, just to keep in mind, it’s not just that we don’t know what to do about it. We just don’t have time. Okay. So most of us in primary care, it’s probably even worse. You may have 30 minutes. I have 15 minutes to see a patient and follow up with cancer. All right, so you run through the things where there is a pill for it. Pain, nausea, here’s a pill. Nausea, here’s a pill. When it comes to sex, there is no pill. And like we just talked about. I don’t know exactly what you mean by my sex life is bad. So you have to sit down and you have to talk to people. I have a separate schedule for sexual health visits. It’s an hour. Okay. I block an entire hour for follow ups as well as new patients. To me, they are very. The TLC required to even evaluate this fully does require a longer visit. Arisa, you were going to say something.

Areej 28:09

Yeah, I mean, I was going to get to that point. I think part of the challenge, and again, to Sharon’s point, like pelvic PT is one of many tools that you have in the toolkit. Right. The reality is a lot of doctors, a lot of clinicians don’t know any of these toolkits, unfortunately. Right. Most of us probably don’t know, any of these toolkits. So part of the issue is, you know, we’re not going to be able to figure out a differential diagnosis for what the problem is and then actually get the right treatment for most patients. So the question is, how do we actually disseminate scale successful strategies to really be able to reach patients that are struggling with this issue? So, you know, I’m lucky when I have this problem in clinic, I could go to dawn, I could call Sharon, and, gosh, we have an incredible sexual health program. I have a psychologist who specializes in this. I have someone who can train me to address these issues. But the reality is most of our patients with serious illness don’t have access to Sean, Don or Sharon to help them address these issues. Right. And so a lot of what, at least the work we’ve been doing together in the context of research is figuring out basic concepts. What are some basic issues affecting sexual health and intimacy that oncologists bread and butter palliative care clinicians can one, ask about, two, potentially address, and three, figure out where there are limitation in terms of being able to address some issues and figure out who to refer to for additional help?

Eric 29:38

Okay, what are those basic ones?

Areej 29:40

So I’ll tell you. So a lot of the work we have been doing has been basically around understanding sort of major biological issues that affect sexual health in both men and women. As you can imagine, in men, erectile dysfunction is very, very common. In women, we have a lot of vaginal alterations, including vaginal dryness. In the transplant world, we worry about vaginal graft versus host disease, both for men and women. We have a lot of loss of libido, loss of physical intimacy as a result of the changing dynamic in the relationship. And so we have basic treatments for these issues that we train oncology clinicians to bring up in clinic practice. These are oncology nurse practitioners. They met with patients, went through, asked the questions that Sharon and Don just talked about, and said, gosh, sounds like you’re having a lot of issues with physical intimacy. Sounds like you’re having a lot of issues with emotional intimacy. And we tried to implement very basic therapeutic strategies to address these issues, including prescribing medications for erectile dysfunction, you know, addressing vaginal dryness, thinking about vaginal estrogen, thinking about all of these basic treatments that many of us can actually incorporate in our practice.

If I meet somebody with a history of sexual trauma and on top of the cancer diagnosis and their relationship, gosh, that’s beyond my ability as an oncology clinician to address and that’s when I reach out to Sharon and try to identify a specialist that can help us address some of these issues. But what we learned from doing this by training oncology clinicians to address basic issues, we can meet about 75% to 80% of the demands of this patient population. That’s a lot, right? That’s a lot. If we’re able to address 75, 80% of the needs and improve sexual health intimacy in this population, we’re actually making huge progress. Not to say that we are replacing the need for specialty sexual health clinics, just like we think about specialty palliative care, if you will. But at least we’re incorporating primary, primary skills that can really be incorporated in survivorship clinic in context cancer care or even in palliative care practice. I would make a vote for us in palliative care to incorporate this in what we do.

Eric 31:50

Is there a good resource for listeners as far as if you want to learn more about the kind of those basic skills and the basic interventions that they could turn to?

Areej 32:01

Well, we have a treatment guide that we are happy to send out to everybody, but also there’s a lot of actually references in that treatment guide, which is a lot of the work that Don Sharon and others in the field have done that we reference. So you’ll have the access to the primary manuscript, but anybody can reach out to me, and I’m happy to send them a summary of some of these recommendations.

Don 32:21

Yeah, I mean, I think, you know, Sharon probably has others, you know, in the, in the cancer specific space a lot. I mean, Sharon has done a lot of this writing. I have as well. But societies have taken up this as something important for patients. So cancer.net has information on this. The American Cancer Society has, has. Has issues on this for other types for.

Eric 32:44

Is there like an guideline on.

Don 32:47

Well, it is covered, right, Jared, go ahead.

Sharon 32:51

Yeah, it is covered. I mean, the guidelines are a little vague, but I would say, you know, it’s interesting. The. But, you know, American Cancer Society actually has a very detailed booklet, right, for, you know, the National Cancer Institute. You know, and there are specialized societies. I mean, there are, you know, the society, the SMSNA, this is a sexual medicine society of North America has a, a patient facing website that’s very rich. So does the North American Menopause Society. I mean, there are many professional societies that all have patient facing resources now with a lot of information around, I would say, sexual health and chronic illness. And that’s really one of the things that is very different now than even ten years ago. I think there’s a lot more good, high quality information available to folks, and.

Alex 33:37

We’Ll link to those in our show notes we just recorded. And our listeners may have heard a podcast about palliative care in kidney failure. And one of the things we did on that podcast, I think our listeners appreciate is talk very specifics, like, for this indication, these are the medications I tend to prescribe. Would it be okay if we talked about that now, for example, starting with erectile dysfunction, like, among the many medications for erectile dysfunction, which do you generally go to first? And if you could use generic names, that’d be great.

Eric 34:12

Or other interventions.

Alex 34:13

Yeah, okay. Aries, why don’t you start and starting doses.

Areej 34:19

Yeah, sure. So, and actually, all of this is actually document, I think what you guys are looking for is more practical advice on sort of management. And all of that is actually outlined in that treatment guide that really summarizes a lot of that literature. But I do think about sort of erectile dysfunction in sort of three different ways. One, I would say, you know, asking patients and getting a sense of how much of an erection arousal they actually get, first of all, to get a sense of how big of the problem they are. And I usually ask them based on, you know, compared to your normal erection, are you at 100%, are you 80%, are you at 50%? Are you at 30%? And then based on that, we can decide on multiple strategies.

One of the things that I do think a lot of men really actually have enjoyed is non medication strategies. A lot of our cancer survivors, in particular, stem cell transplant survivors, the population I care for, are on a lot of medication. So the idea of taking an additional medicine does not appeal to them. So for those of them who actually do have some erectile function, it’s just not optimal. We think about constriction, penile construction rings. And I kind of talked to them about it. It. The way I talk about condoms, I say you have to put it on when you get erect, if you don’t mind putting on condoms. This is a very good.

Don 35:33

I am so proud of you. Oh, my God.

Areej 35:35

I start with.

Alex 35:38

Can I ask, never having heard of this, what does it do? I get the idea, I think, from the name, but just to be clear.

Don 35:46

It constricts the penis.

Areej 35:49

Yes. It’s a whole world out there that.

Sharon 35:52

At the base of the penis, it helps keep blood flow, essentially, in the penis.

Eric 35:56

Blood flow goes in, but I go out.

Areej 35:58

It does not go out. We want it in.

Alex 36:01

Got it.

Areej 36:04

For guys that actually like cock rings, is the other common name for those that people are used to. They come in a lot of flavors. They’re ones that vibrate, they’re ones that really can bring a lot more pleasure for potentially their partners. So they like it, they tend to kind of explore further, and I encourage them to do so. And then on top of that, if that doesn’t do the trick and or if their erectile function is severe enough that they made multiple modalities, we can think of on, on demand phosphodiesterase inhibitors, like Viagra, like cialis. Usually with Viagra, we start at 50 and go up to 100 for patients, and then we think about daily use too. So the other thing that sometimes patients don’t like to take on demand phosphodiesterase inhibitors. And mainly because it kills the mood, if you like to be spontaneous, it takes spontaneity away. We’ve had a lot of success using daily cialis to actually improve sexual function. Most men get about a 20%, 25% improvement in erectile function with just daily use cialis. On top of Cochrane, you can put your hands together and they can all work together.

Eric 37:14

How closely are you looking at the other medicines that they’re being prescribed? Whether it be like the finasterides, SSRI’s, all of those that can affect 100%.

Don 37:24

It’s one of the first things you do. Yep. Yeah. Beta blockers, if they’re smoking, lifestyle changes for sure, but it’s hard. I know you want specific doses and specific recs. It’s not that simple. You would think men have all these options and any of them are working. So let’s use the one that I prefer to do, because I know this drug, that’s not how insurance companies work. So you have to see what’s on their formula, because so much of the access is actually quite restrictive. These drugs are considered lifestyle medications. I think Sharon mentioned you don’t need it to survive, so they’re treated very differently.

Eric 38:07

I want to move on to a couple other ones.

Sharon 38:09

Sorry, can I just add one thing? I just want to say, I think especially in the context of cancer and whether it’s colorectal cancer, prostate cancer, I just want to point out that if men have any kind of nerve damage, if men have any kind of damage, where these drugs, the PDF inhibitors, are not going to work. And I would say that’s, again, a really common misconception, because people just assume you can take a little blue pill and it works. And I can’t tell you how many men I sit with where they feel that’s sort of doubly damaged because everybody can give a pill, right. So that it’s very easy for a surgeon to write a prescription for a pill. It doesn’t work. We know it’s not going to work most of the time, and guys feel incredibly embarrassed.

Right. People feel embarrassed. And then again, because we don’t talk about it, there’s this sort of lack of information that actually we have other options. There really are other things that, that will be effective. And again, it’s a good example of how people often then sort of give up. Right. You just kind of avoid the whole thing because it’s so stressful without actually even having the benefit of realizing that there are actually other options that are available. So I think sometimes, I think there’s.

Eric 39:21

Again, thinking about, like, basic approaches to these really common problems up to date, certainly out there, referrals. But I want to get to a couple others, like vaginal dryness, vaginal pain. How do you think about that from, again? Again, not from your perspective, but if you’re teaching oncologists, nurse practitioners, palliative care doctors, how would you have them think about that?

Don 39:41

Well, actually, it’s one of the things that Aries and I worked on when she started her program at BMT. You have to be able to do a pelvic exam you do for pain or dryness complaints in women. You’ve got to know what you’re treating. You can’t just throw things at people and say, try this and let me know if it works. You have to look for dryness. You have to look for the sources of pain because the pain points may be very different. Sharon mentioned pelvic floor therapy. That’s important if you have, if it’s in the vaginal muscle. So typically when we’ll say with thrusting, it just hurts a lot and doesn’t go away, even as I try to relax versus other people who have pain right at the opening of their vaginal vault called the vestibule. So that’s, they just try and it’s like knives going through my entire body, tearing me apart. Very different approaches are different. You need to start with a pelvic exam. That was the one thing before you start even talking about therapy. If you can’t do a pelvic exam, find someone who can and let them know what you’re looking for.

Areej 40:42

Yeah. I also think it’s really and honestly for us in the transplant population, we also worry about graft versus host disease. So distinguishing vaginal atrophy and vaginal lubrication vaginal dryness, which is the most common issue that women have from vaginal graft versus host disease, require an examination. I think a couple of things that are really important. I would say we’re focused a lot on these really practical biological causes of sexual health and problems in men and women. And I just want to say that in a lot of our studies, what we’ve noticed is that if you’re able to move intimacy, that’s actually the key. What people want is a longing and less loneliness and a connection with others.

And so, you know, if you ask me, like, to what extent, yes, we move sexual health and move sexual function, and to what extent the improvement in sexual function is mediating the effect on quality of life. I would argue it’s actually the improvement in intimacy and feeling connected with their partners that’s making a difference. And a lot of that, actually, you guys, is all about communication that we talk about in palliative care world. And so those are very, very easy things to incorporate. We talk to patients practically about, hey, when was the last time you went on a date with your partner? When was the last time you actually had a conversation? We give them very, very conversation starters, the conversation jar that we give them and say, choose a topic to talk about, make some time for your partner. Why don’t you cuddle and watch a movie?

Eric 42:14

What’s a conversation jar?

Areej 42:16

We have a conversation jar that has basically these topics that bring up that you can ask your partner. They’re fun. They’re primers that you could ask about their day, about something that’s important in their journey. And so it starts a conversation conversation that’s deeper than the everyday things that we deal with. Right. And so, but a lot of time, what happens over time is intimacy is basically blocked away from our schedules. And so a lot of what we’re doing and what we’re coaching them to do is really to integrate intimacy in a small way. I’m talking about emotional intimacy in their schedule, back again in their schedule. And that makes it. And so to me, that intimacy advice is actually probably much more powerful than Viagra and cialis and a lot of tribe and a lot more practical for palliative care clinicians to also incorporate in their practice.

Alex 43:07

That’s terrific. And I want to know what starting doses of vaginal estrogen you use.

Areej 43:13

Done.

Don 43:15

So there’s not starting dose.

Alex 43:18

Okay, educate us.

Don 43:21

No. So there’s the mantra I think should be go lower the lowest dose and the least complicated to use. And with that said, there are these vaginal estrogen tablets that I prefer to prescribe. It’s a ten microgram dose, and the instructions I give is to use it every day for two weeks and then back off from there. Very helpful. But they should never be, well, at least in the cancer, for hormone receptor, hormone responsive cancers, which is not leukemia, ovarian, you know, for example, but breast and endometrial may, should never be the first line treatments because you can get the same positive effects from estrogen than you can with continued use of a vaginal moisturizer. A moisturizer can be as good as estrogen. Just you need to use it consistently.

Eric 44:15

Five days a week type of vaginal moisturizer. Like, what are we talking about?

Don 44:19

The one with the best data is a polycarbophilic one that was actually compared against placebo, which, by the way, placebo trials really important in this field. 40% responsible sibo for their sexual health, but polycarbophilic based ones are good. The breast cancer community seems to have coalesced around hyaluronic acid formulations. There’s a vitamin E formulation. There’s a hormonal preparation that seems to have lower estrogen exposures called dhea, dehydra, androstero as well. So there’s multiple types.

Alex 44:56

And Sharon, I want to make sure that we incorporate psychological elements here. Are there any tips from you either in terms of, like, skills that clinicians can learn who are on the front lines, palliative care docs, geriatricians, oncologists, that they could incorporate into their practice, like signals that, boy, if they’re available, this person should be referred to a sexual health psychologist.

Sharon 45:25

Well, I guess I would say I spend a lot of time, both with patients and clinicians, explaining the concept of the anxiety avoidance cycle. Meaning that when there’s something that is really distressing in some way, our natural inclination is to avoid it. And the thing about avoidance is that whenever you avoid something that’s distressing, the immediate short term is relief, right? It is. You just feel better because you avoid it. And there is an enormous amount of immediate reinforcement for avoiding whatever that thing is that’s distressing. The problem is that longer term, you just keep avoiding whatever that thing is because it just starts to feel so distressing and so scary that it becomes unimaginable that you can figure out how to address it. And I would say that has, that happens all the time with patients and people, but that also happens with doctors in the concept of avoiding talking about all this stuff. So from a kind of a psychological perspective, what we call exposure therapy. The reality is that the more you just kind of get used to just asking these questions, and you talk about it in your review of systems, with everything else, you get comfortable with it. You guys learned that from early on in medical school about how you ask about lots of things.

So I would say that from a psychological perspective, that avoided space is just as important from the provider side and really on the patient side is the same issues. People have to be able to tolerate a certain amount of distress in order to be able to have a hard conversation or to try something that they feel a little worried about. But the reality is, the more you avoid it, that is just a huge problem. And lots of patients, when I even just explain that, they go, oh, my God, I didn’t even realize that’s what I’ve been doing. Doing, right. Like, just understanding. There’s a framework, right. For how to be able to sort of look at what you’ve been doing and say, oh, there’s just another way to be able to sort of look at that with a recognition that the long term payoff is really worth it. Right. To be able to do something that might feel hard in the short term, but allow you to then get creative and have more skills and be able to have other ways of connecting with your partner. And I just really want to underscore what are each said about being able to have a more expansive sexual life.

Right. Rather than saying, okay, the goal is to try to figure out what we can do to make things the way that they were ten years ago. Well, nothing is the way that it was ten years ago. Nothing is the way that it was before cancer. But the point is that that’s not the goal. Right. The goal is being able to sort of have a more rich and expansive way of being in connection both within yourself, in your body, and with someone else, if you want that. And I think that, you know, so that’s the goal.

Eric 48:10

And I love that, and I love how that perfectly ends. We can go on for another hour just talking about all of this, but I feel like this is in palliative care. We talk about a lot of hard subjects from prognosis, even when we talk about pain. Again, it’s this multidimensional, it’s complicated, but we talk about it. But the amount of times that we talk about sexual health, intimacy, I think, is super small in real practice. And just, you know, getting out there and doing it just like we do it with prognosis the first time, it feels awkward. I guess that’s a good analogy to sex too. First time, it feels awkward, but the more you do it, the more comfortable it becomes. So I really appreciate all of your input on this. I’m gonna leave off with Alex cause I think Lady Gaga says it the best. Rah rah, ooh la la ra. Something like that.

Alex 49:05

(singing)

Eric 50:27

I want to thank you all for joining us today. Sharon, Areej, Don – thank you very much. So much more we could have talked about, but we will have links to a lot of stuff on our show notes, so check out jerrypal.org dot and thank you to all our listeners for your continued support.