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Theresa Callard-Moore, PhD, LSW, a psychotherapist and certified sex therapist at Cleveland Clinic, joins the Cancer Advances podcast to shed light on the often-overlooked topic of sexual health in cancer patients. In this episode, Dr. Callard-Moore emphasizes the importance of initiating open conversations about sexual health early in the care journey. She also shares valuable insights, practical strategies, and resources to help patients feel heard and supported to address their concerns.

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Breaking the Silence: Addressing Sexual Health in Cancer Patients

Podcast Transcript

Dale Shepard, MD, PhD: Cancer Advances, a Cleveland Clinic podcast for medical professionals exploring the latest innovative research and clinical advances in the field of oncology.

Thank you for joining us for another episode of Cancer Advances. I'm your host, Dr. Dale Shepherd, a Medical Oncologist here at Cleveland Clinic directing International Programs for the Cancer Institute and Co-Director of the Cleveland Clinic Sarcoma Program. Today I'm happy to be joined by Dr. Theresa Callard-Moore, a Psychotherapist here at Cleveland Clinic. She's here today to talk to us about addressing sexual health and patients with cancer. So, welcome.

Theresa Callard-Moore, PhD, LSW: Thank you so much, Dr. Shepherd. I'm happy to be here.

Dale Shepard, MD, PhD: So give us a little bit of an idea of what you do here at Cleveland Clinic.

Theresa Callard-Moore, PhD, LSW: Yes, I am the sexual health specialist. I'm a certified sex therapist and sex addiction therapist. So I'm offering sexual health to all of our patients and educating our caregivers or our staff on how to address sexual health with patients.

Dale Shepard, MD, PhD: Excellent. So when we talk about sexual health, what are some of the issues we think about cancer, patients with cancer? What are some of the things that these patients encounter?

Theresa Callard-Moore, PhD, LSW: So many things. Honestly, we couldn't do an exhaustive list, but patients are going to be permanently affected by this diagnosis and treatment. So it ranges everywhere from the emotional levels of fear and distress and discomfort, anger about being diagnosed, the relationship between them and their partners are significantly impacted and we can't skip over how the partner's emotions are too. So all of those things can play a factor on sexual health, obviously with connection with our partner, but the physical things they go through, obviously it depends on what kind of cancer, what kind of treatments, right? But they're going to go through pain, nausea, fatigue, permanent body changes, some of their organs that would be directly related to sexual health could be affected. For example, losing a breast or testicular cancer. So the body image is probably the number one thing, I would say, is a real issue along with low desire. Those would probably be the two biggest things that I would see the most.

Dale Shepard, MD, PhD: And I'm guessing that this runs the entire span. You mentioned before, these are sort of long-term effects, so I'm guessing that from the moment they're told that they have cancer all the way through survivorship?

Theresa Callard-Moore, PhD, LSW: Absolutely. And all physicians and caregivers are focused on the acute medical care and saving their life and a good treatment plan. So sexual health doesn't usually get addressed right away. And I think even the patient, probably if you brought it up right then, that might not be what's on their mind. Right? But as they come through the treatments and start to focus on their quality of life, and their connection and getting back to quote-quote normal or creating a new normal, then sexual health starts to come right up front and center, and they don't always know what to do or how to talk about it.

Dale Shepard, MD, PhD: And I think you pointed out something you said, maybe it's not addressed at the right time. I guess I would argue maybe not ever. And I guess that seems probably the problem.

Theresa Callard-Moore, PhD, LSW: The way that I'm asking caregivers to bring it up is to introduce the idea, introduce the topic early on. For example, I'll just stick with breast cancer for a moment. So if we're going to do breast cancer surgery and we're going to remove one or both breasts, I just want you to understand that may affect your sexual arousal and functioning. Just introduce it. Just introduce that's one of the things that can happen in this treatment plan. So they understand that that could come up, but they also ... What that does is that gives the patient permission to bring it up and now the doctor has put themselves, or the caregiver has put themselves in a position where we can bring it up, and it's okay to bring up any questions that they have so that we can help them navigate it.

Dale Shepard, MD, PhD: So really much like the treatments we give, setting expectations is important?

Theresa Callard-Moore, PhD, LSW: Exactly. Absolutely.

Dale Shepard, MD, PhD: And so you say early on, what would you provide as guidance in terms of, certainly when you first tell someone, "Oh, you have cancer," too early. You start talking about treatment plans. When does seem to be the best time?

Theresa Callard-Moore, PhD, LSW: Again, I think there's a way we could make this a standard part of our care. And even with a simple brochure ... You know, I feel like when someone's early diagnosed, we just giving them tons of information and things to look at and read and look up. So it could be a brochure in a packet of, "Here's some things you need to ... We want you to know," right? The same way we would offer the fourth angel brochure, right? We're going to bring that up and say, "There's other people who have been through this. Here's this opportunity to get extra support." So we give them that information early on if they're going through any kind of treatment, bringing that up amongst the other things that could happen to them, how this could affect their sexual health.

And then letting them know there's resources such as myself that they can talk to at any point in the process. I did draft a survivorship handout or memo that they get in that packet when they come back for survivorship. So now we're trying to catch ... If we give early information and then we catch them in survivorship, and then of course, anytime the patient brings it up, I feel like we'll hit the bases because everyone's going to be handling this differently. But I feel like survivorship is that follow up after treatment has already happened, the core treatment has happened, that that might be the time where they're more receptive and more interested to talk about it further. But I think it's important to point out all the way through.

Dale Shepard, MD, PhD: What do you think are some of the primary barriers to these discussions? Is it patients not wanting to bring it up to their doctors, doctors not feeling comfortable? A little bit of both?

Theresa Callard-Moore, PhD, LSW: A hundred percent of those two things for sure. Patients are afraid they're ... First of all, they feel embarrassed themselves, but they also are afraid they're going to embarrass the physician. So they don't want to do that. I have to start with the basics. There are so many systemic problems here. None of us got good sex education anywhere, anywhere, not even in grade school, high school. And then we didn't get it in graduate school and medical school. So we're coming with this in a sexually repressed society where we're not really supposed to talk about it. It's not polite conversation. We didn't get good data or methods on how to talk about it with our patients. So we have language barriers, right? Patients don't understand their own anatomy or their own sexual health. They don't know how to ask questions about it. Females don't even know what their genitals sometimes look like.

They don't even know the difference between a urethra or the vaginal opening. So there's so many layers of barriers in place here. I did a whole grand rounds just on this one question. The number one research answer when we asked doctors, "What's the barrier?" is they said time. They really don't feel like they have enough time with the patient. And I feel like that's a double-edged sword because I think that doctors are probably afraid of the Pandora's box too. If I do bring this up, tears, all the questions, all the answers they may not know the answers to, so they feel like they don't have enough time to address it. And if they did, we would be doing a therapy session right then and there. I feel like it's really a compounded problem. And one, I think, well, I'm trying to help solve here by teaching doctors that PLISSIT model.

Dale Shepard, MD, PhD: Yep. And that's exactly where I was going to go next. Tell me a little bit about the model that you mentioned in terms of how to address these issues.

Theresa Callard-Moore, PhD, LSW: Absolutely. PLISSIT stands for permission, limited information, specific suggestion and intensive treatment. So I'm working on having all of the caregivers learn this model because you really can navigate the first two to three with the patient. You don't have to know everything, you don't. The most important part is the permission piece, I feel, and that is the comfort level enough say to the patient, "It's okay to bring this up. It's okay to ask any questions that you have." Even if you don't know the answer, you'll know what to do with the question because you can now refer to sexual health or even outside the clinic. So the permission part to me is the biggest piece, and that's just putting the patient at ease to bring up anything they have a question about. Number one.

Limited information is going to be those medical answers. Not to stick with breast cancer, but I'll use that again. So with a removal of the breast, will I feel any sensation in my chest? Will I still have a nipple? When can I get my prosthetic? Do I have to wear a bra with my prosthetic? There's limited information that you know the answers to and you can answer them right then and there. Okay? Then we get into specific suggestion, and there might be some that providers feel comfortable getting into, and that would probably be the time to think, I need to refer this patient for more support to sexual health or sex therapist or a therapist in general. So if it gets into specific suggestions when I'm dealing with someone, I'll just stick with breast cancer to keep it congruent, they're concerned about that prosthetic or not having a prosthetic yet.

And I'll say, "Okay, what's the biggest concern you have? Let's look into lingerie that would maybe cover that area or support a prosthetic. So you feel like you look normal, right? You feel comfortable in your body the way it looks." That might be a specific suggestion. And what I do is I listen for what the concerns are, and my biggest tool in my toolbox is my imagination. I just get very creative with patients and say, "Well, what can we do about that? Let's figure it out." Right? I'm willing to lean in and figure it out with them. So specific suggestion goes into that. And then the IT is intensive treatment, and that would be where someone really is in sex therapy or counseling or couples counseling. And we really are leaning into all the nuances about the dynamics that they're going through, covering all the emotional pieces, the relationship issues, the individual self-esteem issues, body image issues, all the things that really take a lot more time and they need to process.

Dale Shepard, MD, PhD: So you've mentioned a couple of times about partners. How's the best way to sort of address the partner issues and provide the necessary support?

Theresa Callard-Moore, PhD, LSW: That's great. I know for me, in any sessions that I have, I'm always inviting partners to join us because this is affecting them a hundred percent. And for anyone who's been through this, you want to be in caretaker mode. "I love my partner, I want to make sure they're okay. I'm going to go to appointments and support them in everything they have to do." But what that means is the partner usually is bottling up their own fears, concerns, worries, anger, frustration, loneliness, horniness? "What do I do with that? I don't know what to do with my own feelings here because my partner clearly is going through something very important." That partner usually sticks with things until the identified patient comes out of it. So if we're including the partner and answering their questions and making it okay for them to ask anything they ask, mostly it's going to be fear and concern about the health and wellbeing of their loved one.

But then when it comes back to sexual health, "What can we do? I don't want to hurt them. I don't want to cause any problems or I'm not sure what's okay, what's not okay. Can we still do intercourse? Can they still do this? Can they still do that?" So answering their questions will help ease their mind too. But sometimes partners have an exaggerated emotional response after the identified patient as well, because then they finally can let out some of those feelings and concerns. So that's usually where couples support or couples counseling in my arena would come in. But I think for the physicians just being available to answer any questions or concerns that they have, and you can still use that same model, permission to bring it up. I'll answer it limited information. If I have it, I'll give it to you. And if you need more than that, we know what to do. We can help you get the support you need.

Dale Shepard, MD, PhD: So there's a wide range of people that might be listening in and maybe working in areas that don't have as many defined resources. How do people find resources like people like yourself who can help them out? Sometimes the barrier seems to be, I ask the question, much like you say the Pandora's box, now I know something, what do I do about it?

Theresa Callard-Moore, PhD, LSW: Yeah. So if patients or providers look up AASECT, American Association Sex Educator Counselors Therapist.org, that would be the website to find a sex therapist that's certified in the state that you're in. There are some barriers to that too. So let me just do a little footnote here. A lot of them do not take insurance. So there is a financial barrier there, and that's unfortunate, but it's a very specialized thing. It's something we have to work through. I am able to bill insurances inside the Cleveland Clinic, so that's a helpful thing for our patients. But not all therapists do.

If they're looking for general therapists, of course, we have our behavioral health program here at the Cleveland Clinic and outside the clinic, I often refer to Psychologytoday.com. That is a way you can look up what kind of therapy you want, virtual or in person, if you're looking for certain techniques, like EMDR for example. And then you can match with a potential therapist in your area, or in the state if it's virtual and get into their service. Because since COVID, a lot of therapists have been maxed out. So some patients don't even get a call back if they just do cold calling. So that one will at least tell you if they're taking new patients or not. I find that a very helpful resource for people. But that's a real problem. Finding mental health support is a real problem right now.

Dale Shepard, MD, PhD: How do we improve things upstream? As you mentioned, sex education at all stages, not ideal. It's not ideal medical school through training. How do we make that better?

Theresa Callard-Moore, PhD, LSW: Oh, I would love to change the systems here. I've actually called medical schools and when I was doing my research and I said, "Why aren't we talking about this? Where is this at in the curriculum?" And they told me it's a zero sum program. So if they do that, then they have to cut out something else. And I think that's a real shame. My suggestion is we continue to have these discussions, and have a part of our CEUs include sexual health as we ... Because we all have to do that in our professions. So having that includes sexual health. And my thought is the more we talk about it, the easier it's going to get. And when I looked at the research about this, there was conflicting ideas that providers should just be okay with everything that goes. And that is not plausible. All providers are not going to be okay with just everything, anything.

Even sex therapists, and we are trained to be okay with everything, is not an easy task to do. There are just some things we don't feel comfortable talking about, hearing about, certainly seeing or witnessing or doing. But we have to find a way to balance that out with, I need to be okay enough to have the patient bring up their concerns and then refer them out. Basically triage them where they need to go to get the right help. And even I would do that, for example, I don't see people with pedophilia would be an example. That's not something ... But I know what to do if a patient needed that, I can refer them to the right people. So I feel like using that PLISSIT model and getting comfortable enough to just be okay to ask the general questions and concerns, and most of that limited information will come naturally, then refer out.

So step one, step two, refer out. That's all I really want providers to be able to do. And then those who want to learn more about sexual health, I invite them to do that. There's definitely programs like the ones I've done where you can learn about sexual health and really specialize in it. And there's a big need. There's a very big need for that. So to me, it's really a systemic problem. But if we wanted to go past that, it would be, those of us who are knowledgeable getting on school boards and making sure it's part of curriculum for students as basic information about our bodies so that we have that in order to go forward. Because when we don't have that information, people seek it on the internet and then they don't have a chance to talk to a professional that see if it's an even accurate information. So they might be getting misinformation. These crazy things that people see on TikTok, for example, they don't know if it's true or not true. That's a real problem. We have a systemic problem in our country.

Dale Shepard, MD, PhD: So you mentioned online, are there actually good resources for people who may not be able to get into see a therapist?

Theresa Callard-Moore, PhD, LSW: Absolutely. And I would have to do a good Google search on what your topic was to tell you that, but there's absolutely credible physicians, sex therapists out there who are doing podcasts, who are trying to get that education out there. There's so many good books. And yes, it's out there. It's just not ingrained in our educational systems, primary school and then high school, graduate school and medical school. And I feel like that's a really big problem too, because all of us professionals should be knowledgeable to a point about sexual health.

Dale Shepard, MD, PhD: Well, this is clearly something that doesn't get enough attention with our patients, and I appreciate you sharing information on how to be open, allow patients to talk to us about this and get the help they need.

Theresa Callard-Moore, PhD, LSW: Thank you so much. This was really a wonderful program, and I would love to support any caregivers that want more support. I'm doing educational things here, trying to help all of us to get more comfortable to bring it up.

Dale Shepard, MD, PhD: Very good. Well, thank you.

Theresa Callard-Moore, PhD, LSW: Yes, thank you so much. Have a wonderful day.

Dale Shepard, MD, PhD: To make a direct online referral to our Cancer Institute, complete our online cancer patient referral form by visiting clevelandclinic.org/cancerpatientreferrals. You will receive confirmation once the appointment is scheduled.

This concludes this episode of Cancer Advances. For more podcast episodes, visit our website, clevelandclinic.org/canceradvancespodcast. Subscribe on Apple Podcasts, Spotify, or wherever you listen to podcasts.

Thank you for listening. Please join us again soon.

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