The Impact of Lung Cancer on Intimacy and Personal Relationships. I am Michelle Turner, Thoracic Oncology Nurse Practitioner at John Hopkins Sidney Chemo Cancer Center. I will be your presentation moderator today, and then I'll be turning over the panel discussion to Maria Fantineau, and we will start this activity with some brief housekeeping items. This activity has been planned and implemented in accordance with the accreditation requirements and policies of the Accreditation Council for Continuing Medical Education. The International Association of the Study of Lung Cancer is accredited by the ACCME to provide continuing medical education for physicians. The International Association for the Study of Lung Cancer designates the live format for this educational activity for a maximum of 1.00 AMA PRA Category 1 credits. Physicians should only claim credit commensurate with the extent of their participation in the activity. All faculty planners and reviewers for the webinar today have disclosed their conflicts of interest. Michelle Turner is a speaker for AstraZeneca, Mirati Therapeutics, and Merck. Dr. Flores is an advisor for AstraZeneca, Pfizer, Janssen Pharmaceuticals, and Mirati Therapeutics. She is a speaker for Merck and a tumor board moderator for Neogenomics. Our first presenter is Dr. Najaz Flores. Dr. Flores is a thoracic oncologist and is an associate director of the Cancer Center Equity Program at the Lowe Center for Thoracic Oncology, which is located at Dana-Farber Cancer Institute. Dr. Flores is an assistant professor of medicine at the Harvard Medical School and is an associate editor for JAMA Oncology. Dr. Flores, the time is yours. Thank you so much. I'm thankful to be here. This is my third talk today about sexual health and lung cancer. So Jill, you and I have made a difference because before nobody wanted to talk to us about this. And now we're doing it three times in one day. Let's talk about how do you express love because love is a lot of the basis about what intimate relationships are. Love can mean many things. It can mean a hug with that very special person. It can mean praying or doing another type of religious practice, meeting with a friend for coffee, or making a meal with your family. Love can be many things. And love sometimes is the base, not always, of sexual health. So how do you see sexual health? Do you see yourself in the mirror and you're like, yeah, I'm the lioness. Or do we see each other in the mirror and think, this is too flaccid, my boobs are too small, my booty is too big. This happens to us, it happens to our patients. Sexual health comes in many flavors. And this is what I want you guys to know. It's not all about intercourse. It's not all about oral sex. It means cuddling, spooning. Many ways in which our members of the LGBT community also express love. That's also sexual health. Does it feel like a duty? For many women in many regions of the world, it can feel like that. And for many patients with cancer, it can feel like a duty they have to fulfill despite everything they're facing. Sexual health comes in many aspects, but it's not only about penetration. It includes kissing, cuddling, hugging, words of affirmation, light touch, massage, lighting a candle, getting and taking a bath with a bath bomb with your partner or with yourself and touch yourself is a way of sexual health. So when we ask our patients and how you ask yourself, how do you express love to yourself? And sexual health is a way of expressing love to yourself. Self-pleasuring, masturbation is not something that should be first punished, not talk about or that our patients with cancer shouldn't be doing. Because it's one of the first things we do when we become teenagers. Many of us learn about self-estimation with no manual, that's all very obvious. So it's that instant, it's part of us. So that's what we see sexuality as a different spectrum, and that's what we need to talk about it. Right? We need to talk about it. Jill and I used to joke about it that every time she and I say the word vagina, people we laugh. And then we started saying it so much that it's just normalized in my clinic and in my meetings. So sometimes I'm at 7 a.m. meetings and say, good morning vagina, how are we doing? So sexuality is attached to culture, and we need to understand that. Because in certain areas or some cultures, sexuality is very open. Like let me give you examples of two countries, Brazil and Ecuador, they're both in South America. But one has very rude Catholic, and which is very taboo to talk about sexual health. In Brazil, it tends to be more fluid, more freely, and they're both in Latin America. Also, social norms play a role. And when it comes to women, a lot of the social norms have negatively affected our sexual health. Right? Why are we told when we're little girls, cover yourself, don't let nobody see that. That's your little flower. But for men, sometimes we hear, who's the man? Show me what God gave you. Stuff like that. I hear it, girl. So we need to understand that social norms also play a role in sexual health in our patients with cancer, and that we need to be taking that into account. So sexuality and lung cancer, we talk about it, it's not only about intercourse, it's about affection, it's about how you express something to them. I had a patient that sexual health meant for her, that her husband would hold her from behind, from her back, and hold her there for 10 minutes. That is sexual health, too. She felt secure, and she felt loved. So intimacy and sexual health are combined, right? And it's also sexual activity that doesn't have to be attached to very deep read. Phyllis, I have a few of my patients that are dating. So we have to see sexual health in a spectrum, right? It's not the whole, I married the Prince Charming, and that was forever. I don't know. Patients with lung cancer can also be dating. They also can be in the dating apps, can try to experiment in their sexuality. Cancer is something that happened to our patients, not something that defines them. So I have a few of my ladies that come with their Tinder pictures and show me, it's like, what do you think? It's like, well, let's see what lubricant we're going to use. So it's, you know, encourage and understand the different versions. Oral sex is highly natural, and some cultures in Africa is dealing as the main act when it comes to sexuality. We have to take into account HPV and head and neck cancer, which is a reality, but there are many ways to practice safe oral sex. Oral sex is related to pleasure, satisfaction, and it's okay to encourage your patients to be very vocal with their pharmacist and say, I only want oral sex today. And if you don't want to do it either, it's not a duty, that's also a two-way relationship. My dry mucous membranes are very common for all cancer treatments. Immunotherapy dries your mucous membranes so much. This don't even talk about TKIs or diarrhea therapy. These patients' mouths are dry. So performing oral sex can sound like a huge task without the appropriate tools. And self-love is masturbation. Masturbation is self-love. Sexual health discussions with my patients start with self-love and self-exploration. I don't make the conversation about the partner. So that's when we talk to our patients. We talk to them about, how do you feel about your body? And I ask them, when is the last time we got a mirror and we looked down there? You would be surprised how many of my patients haven't looked down there since their first baby was born. They're like, if I don't see, the better, I don't know. And I told them, it's like, every time you have a baby, there is a rearrangement of the furniture. So we need to find out where is that couch that you really like to be touched at now. So let's get the mirror. So having conversations like these, normalizing it. I can tell you some of my patients that are 80 come back to my clinic and say, doctor, what's been down there? It's like, well, let's talk about it. Because you need to know what you like. Your mucous membranes will be dry. So there's many types of lubricants. They can be water-based, they can be organic, they can be flavored. I have a whole tray in my office of different flavors, forms, and they're free. If you need some for your patients, you can get free orders for your patients. And there are also ones that you can buy in the supermarket. They're for her and for him, for different needs. And they're also lubricants for motivation based on the toy that you're going to use. The flower or the rose, which is a very famous toy, tends to have more clitoral stimulation and suction. So you need mostly a moisturizer rather than a lubricant. But there are other penetration devices that you need special lubricants to use. So talk about our patients and normalize it. And also, we need cleaning sprays for your toys. We cannot forget that. One of my patients told me, it's hard for me to do this because I don't have the money and it's very expensive. So I came to realize that we can help our patients space out their life with little things. This is a travel kit for Delta, right? For Delta. Hear me out here. I just opened it because I asked the flight attendant for four of them. So you're traveling to Delaware for a graduation, right? There's not the hottest destination if you're going with your partner, let's be honest. And you're like, well, Dr. Flores told me I need to get busy, but we have the kit. First, we had a phase of how many things can you do with this? This is for your eyes. They have earplugs if you need them. They have a toothbrush for the beginning of the end, or for both, or the encounter. And on top of that, they have hand cream. So you can use things to recommend to your patients without having to have a big budget, including coconut oil. I'm going to move forward because I think I'm taking a lot of time with these little stories and comments, but this is what I made it practical because I can be talking about a lot of data, but practical. So lung cancer and sexual dysfunction is frequent. Over 95% of patients, we believe below 50 percentile. And on top of that, most of this dysfunction persists after all treatments have been completed. The SHOLE study, I'm going to go quick over the results. This is Jill's and I's baby. We talk about this when nobody was talking about sexual health in 2018 and 19, and then launched in 2020. It's the largest study evaluating sexual health in women with lung cancer. Over 249 patients, the study was going to launch in person, and then the pandemic happened. The team had to pivot and make it a virtual study. We found that around 77% of patients have some degree or participants or humans have some degree of sexual dysfunction. So it's prevalent. So having these discussions is important because 77% of the women that took this survey have some degree of sexual dysfunction. What is important is the decrease in sexual desire and interest was affected by the lung cancer diagnosis. And the most common issue was vaginal pain or discomfort. That's why I have so much focus on lubricant, because we often feel that we need big interventions, but coconut oil can go a long way. We get no use data from other cancers to treat sexual dysfunction and patients with lung cancer. First, the stigma associated with the disease is an additional emotional burden for women and men. Right? It's something that patients with lung cancer carry over their shoulders that adds to the issues. So feeling sad or unhappy, issues with their partner. A lot of them may be related with toxicity, financial toxicity, and shortness of breath. We get no extrapolate data from breast cancer to treat sexual dysfunction and patients with lung cancer. Shortness of breath, how do we fix that? We find a position in which patients do not require that much lung capacity. Use of chairs, use of couch, and go to school bed. You don't have to, like I told my patients, you don't have to revive and try to do the Kama Sutra today. Why don't we start with the all known bed that you know, and you cuddle. Let's just cuddle. When we start incorporating the partner, the conversation starts with the patient. And the patient allows to start talking about introducing a partner, even if they have a partner. I'm almost convinced. And the problems we have is that we lack childhood education about sexual health. There's a lot of suppression and taboo. And there are double standards when it comes to women and men. In addition to that, sex is used as a worm of gender violence. And oncologists, we are not trained in sexual health. I trained at the Mayo Clinic. I was the chief fellow. I gave the talk about sexual health because there was no training. So that's one of the biggest issues. And another thing is that physician bias believe that sexual health is not important. Several studies have shown that patients sleep better, less anxiety, less depression, less weight gain, less opiates, less benzodiazepines. These are six things that we can improve with fixing sexual health. Do we have a pill that is able to do that? No, we don't have a pill. And if we have a pill, then we have a bunch of other side effects after that. So talking about sexual health, health of our patients, self-esteem, I can tell you what my ladies, we have talked about it and have improved. I see that makeup. I see that mascara coming to my clinic. That is just a sense. And it's not about their partner. It's about their being comfortable, touching their self, discovering this new body after lung cancer. So we are guilty. The physicians are extremely guilty. We are not trained. We don't ask about it. And I'm going to finish saying that sexuality comes in different colors and flavors. We cannot assume a patient's, a participant's preferences, a participant's sexual orientation, a participant's comfortable level talking about it. We open the door. And there are also patients that are asexual. That they don't want to be involved in any type of sexual activity doesn't mean they're broken. That doesn't mean it's their choice to understand that. And we respect that. And I always leave the door open. If another day, you want to talk about it, hey, girl, I'm here for you. And yes, I do talk to my patients like that. Because inequality, we're all at the same level when it comes to fighting this disease. And finally, I couldn't do a talk without a picture of a vulva. So every solution is different because every vulva, penis, or other genital organs are very different. So the interventions need to be tailored to our patients. So I'm ending with a few questions. What is important to your patients when it comes to sexual health? What are their expectations during cancer treatment? Do they know at all what is going to happen? How do they feel if they touch their spouse, they're going to break it because they're getting chemotherapy? Finally, when talking about sexual health and intimacy, we need to stop, ask, and listen. Do not assume that what you think is normal for sexual health is normal for everyone. And I'm gonna run out of time and I'm gonna finish here. There are three important things that you need to keep in mind, and it's that many of these things can be covered by your health insurance, their medical conditions. Number two, that solutions can be quickly. The partner can be incorporated when the patient is ready, if you have a partner. And number three, there are many phrases that you can help your patients to open the conversation. My libido has decreased. Can we talk about that? Thank you so much. And I'm sorry I took so much time, but I'm so passionate about this, that every woman out there should have lubricants. Amazing. We probably could have heard you talk like for a whole conference on that. There's so much information. Really appreciate it. Our next presenter is Dr. Steph Ejimaima. I hope I said that right, Dr. Steph. She completed her PhD in the Division of Nursing and Midwifery in 2019. She currently leads and contributes to research undertaken at the Mesothelioma UK Research Center in Sheffield in the United Kingdom and the NIHR School for Public Health Research. Hi everyone. Can you hear me? Okay, great. So over the next few minutes, I'd like to discuss some of the research around the sexual health and intimacy needs of people living with lung cancer. I'll begin with a bit of a background and justification for why this topic is important. I'll report some of the findings and the research that's been undertaken at the Mesothelioma UK Research Center. And what we can learn about it, what we can learn about intimacy and relationships from it. I'll also discuss whose job it is to discuss sexual health and intimacy issues. So there's overlap with Dr. Flores' talk. And also talk about where's next for research and practice in terms of sexual health and intimacy work in the field of lung cancer. And I was delighted to hear that Dr. Flores, this is the third time she's given the talk today because this is the very first time that this talk has been premiered, if you like. So yeah, I'll be happy to hear any feedback on it afterwards. So what's brilliant is that recent advances in lung cancer therapeutics and screening have led to increased numbers of lung cancer survivors. And this greater number of people living for longer means that there is an increased need for a focus on quality of life, not only quantity of life. So a focus on disease has played an important role in advancing lung cancer therapeutics. However, people that we have spoken to as part of our research have highlighted how when people's bodies change or they have a drain put in, how this can alter their perception of themselves and their intimate relationships. As this participant says, it can be really hard to deal with the marriage side, you know, sort of dried up, if you like. And when that was over and the patient just saw themselves as a patient rather than a husband, it was really, really hard. So reported in the literature is existential loneliness after a diagnosis of an incurable disease. And I think what these quotes show that emotional and sexual connections can help with this, can help with dealing with that existential loneliness that's been reported. So I really like this quote from one of our studies where somebody was saying, I cuddle my wife more. We've always cuddled, but probably we cuddle and kiss more. You know, they appreciate every day, really. I just thought that was really beautiful. And then the second quote, which isn't as positive, which was that there's all that separation there and being in a separate bedroom was really challenging. It kind of put that physical barrier between themselves. But again, I like Dr. Flores's idea of, you know, maybe going into the bedroom and continuing your sexual relationship. And again, that doesn't have to be penetration, but I think it can be quite challenging when the marriage changes completely in that way that our own participants said. Okay, so some of our participants report increased emotional connections after a diagnosis of mesothelioma. And again, when this was missing, and again, when this was missing, as shown in the second quote, this was very hard for people. And so some of our participants reported increased emotional connections after diagnosis of mesothelioma. And when this was missing, as shown in the second quote, this was very hard for people. And again, there is that idea of the person living with mesothelioma becoming the patient rather than the husband. And so again, but we've got some quotes here, which highlight how the emotional connection and intimacy was maintained for patients and their loved ones, and how that connection helped people to cope. You know, there's some interesting things in there. So what we did is kind of went through the data we've got from studies, which weren't focused on intimacy and relationships and pulled together some of the quotes, but I like that middle one where even on the last day of somebody's life, he couldn't take water and she was dabbing him with a little sponge so he was getting some comfort. And her finger went in his mouth and he bit it, you know, and this grin came on his face. So that kind of connection, I think can be really important. Those special moments at the ends of people's lives are really, really important. So we have some initial evidence that intimacy and relationships are important, but what is the role of the healthcare professionals? We know that healthcare professionals struggle to bridge the topic. And we have research specific to oncology showing that patients do not receive the information they need from their oncology providers. So this is an unmet care need for many people with advanced cancer. But I just want to spend a moment thinking about some of the challenges for healthcare professionals. So it's awkward. I mean, you know, obviously we are British and here it's even more awkward, I would say, than in other cultural settings. We don't tend to have kind of the religious aspects. I think it's just a cultural no-no. So my PhD focused on sexual health discussions with older women with type two diabetes and that awkwardness from healthcare professionals really came through. And not wanting to offend the patient thinking, you know, you've just been given this diagnosis. Is it the time? Is it the right time to bring up sexual health and wellbeing? Is it appropriate? Has come up quite a lot. And then gender discordance. So is there a preference for women to speak to women and men to speak to men? Is that an issue or not? If a partner is present, that can sometimes present a barrier or not. Maybe it's easier. And not knowing how to help. Say as a healthcare professional, you say, you know, do you have any sexual issues that you would like to discuss? And the person says, God, yes, thank you for asking. And then you have no idea of where to signpost this person to. So, you know, I think it is important to kind of think about what some of the challenges for the healthcare professionals are. Okay, next slide, please. Slightly more positive. How to talk about sexual health with patients, carers and families. So there is something called the PLICIT model, which is obviously it's a little bit dated now. It's from the seventies. And it's more or less about giving patients permission to raise sexual issues. So creating an environment where patients are that comfortable with you, that they are able to say, I do want to talk about my sexual issues or my relationship issues or wherever it might be. And there's been more recently another model called the EXPLICIT model, where you repeatedly sort of ask, you know, you're checking at various times in different settings and different healthcare professionals are asking, you know, is there anything you'd like to discuss? Just opening up that space, even if patients do not want to discuss it. And then there's a project by Sue Malter, which started in 2020. I must admit, I haven't checked in with this study recently, but at that point they're in the first stage of kind of investigating the barriers and enablers to sexual health discussions. But this was with older patients in primary care. So quite a specific context. So there are a few things that can help healthcare professionals who do recognize the unmet need. So while it is recognizing the unmet need, there is some research that suggests that some participants may not want to talk about sexual health and wellbeing, but does this come from the original taboo of not wanting to talk about sexual health? You know, so you're filling out a survey, sexual health, no, don't want to hear about it. You know, so it's hard to know how to interpret those findings. But what I will say just towards the end of my talk is that, is there potential for resources which can help open up conversations? But yeah, I'll talk about that in a minute. And then also in terms of research. So we, at the Mesothelioma UK Research Centre, we conducted a research prioritization exercise with over 150 patients, carers, and professionals. And sexual health and wellbeing didn't come up. But again, is it because of the taboos around sexual health and intimate relationships that people didn't even know that it was an option, that they were able to verbalize that kind of thing? I almost feel like with sexual health and wellbeing, it's a topic that we need to bring up as researchers and healthcare professionals. We can't wait for patients and carers and family members to bring it up. It's that permission given again. But it didn't come up in our research prioritization exercise, which I think is important to highlight. So my suggestion is, I wonder if the evidence that we have from our studies about sexual health and wellbeing being important is right. But perhaps what we need to do more of are creative outputs to support patients and carers to live the best emotionally fulfilling lives that they can, even if they do not want to sometimes talk about healthcare, to talk to healthcare professionals about it. And if on the other side, we've got healthcare professionals who are struggling to talk about it, so here are a few kind of outputs that might be useful. I'm just planting the seed, something like an animation that talks about sexual health, wellbeing, intimate relationships, or these kind of infographics where you kind of have the information in black and white or in lots of lovely colors that people can refer to when they want to, maybe in the darkness when they're alone or maybe when they're with their partner. But having these resources that people can refer to when they want to, if they struggle to talk about it, I think could be quite useful and I don't think are fully realized at the moment. So here are my take home messages. I realize the middle one is a bit contentious, but first, healthy intimate relationships can help couples when living with myeloma and lung cancer. So how can we support those? Secondly, not all patients and carers will want to talk about sexual health and intimate relationships with their healthcare professionals. So how can we either help them to do that first point that we've got, yeah, or how can we make healthcare professionals better at talking about it to make them want to talk about it, if that makes sense. And then is there potential for developing resources for couples and or healthcare professionals to support healthy intimate relationships? And I'll just spend the last kind of two minutes, I'm sure I've gone over, talking about the Mesothelioma UK Research Centre where we're conducting a rich portfolio of robust and rigorous research that is internationally recognized. I'm really pleased that I've been invited to this talk today. It's really amazing to have Mesothelioma UK who are funding us their research put on an international platform. Here is our lovely, lovely team who are all asleep in their beds, snug at the moment. And thank you very much. If you want to keep up to date on any of our work, please do get in touch with us. Thank you. Thank you so much, Dr. Maima. We really, really appreciate it. Gosh, these lectures were so intellectually stimulating and I can't wait to hear the conversation. I'm now gonna hand it over to our committee chair, Maria, to moderate the questions and lead our panel discussion. Maria. Excellent, thank you. Thank you for such great presentations and it's great that we can now see everybody's faces as well. So I'd like to first welcome Jill Feldman, our lung cancer patient advocate who has joined us today as well. Thank you for such stimulating conversation and it's so good to hear some very dedicated clinicians and researchers looking into sexual health and intimacy for patients because it is very much an issue that's largely ignored in practice. So to begin, Jill, I might start off with a question for you while people get ready to put their questions in the Q&A box. Jill, there are so many body changes going through lung cancer. How do people with lung cancer prepare for the many changes in their body that will obviously impact on their self-esteem, their identity, and obviously their relationships? Yeah, it's a good question because I think when people are first diagnosed, it's the last thing that you think about, right? Like you're really overwhelmed and there's still such nihilism with lung cancer. So all you're thinking about is surviving. And interestingly enough, when you're talking about going on treatment, whether it's surgery, whether it's a systemic therapy, chemotherapy, immunotherapy, whatever it is, a combination, they talk about side effects, but nobody ever brings up the sexual health or the intimacy part of it. So you really do and you can't predict. I mean, I think some people shut down completely and build a wall. Some people, I mean, I know someone who after surgery, all she wanted to do was go home and when she was released, have sex with her husband because that made her feel literally alive. That was her thing. And, you know, but then like, you know, I know when my first treatment was surgery, I mean, my husband thought I would break. He like, you know, and still, you know, when you have bad side effects or something's going on and people are like, are you okay? You know, they treat you like you're fragile. So, and then you have your own self images, whether they're scars, whether it's skin issues, whether it's loss of hair. So it really is a multiple things that you're trying to deal with at that time. Yet nobody talks about that intimacy as a side effect of, you know, of cancer or treatment. So I do think that that's very much a part of most people's thoughts though. I think it's a very common feeling in both ways. I think there is nothing more selfless than a patient with cancer. They're also very worried that the side effects of the chemotherapy or the therapy we pass through body fluids to their partners, through kissing. So I think it's also a two-way street because even when they're going through so much, they care so much about others. So I told him, no, no, he's not going to lose his hair. That's another good point though. Nobody, I mean, you know, you think about our care partners like everyone's worried about the patient. What about them? You know, and I was in my thirties when I was diagnosed. I had four little kids, like everyone was worried about me but what about my husband? And, you know, it's just, there needs to be some more attention definitely because patients do worry about their partners. One thing I've encountered in sort of the psychological therapy space is I see, I get to see a patient that's, you know, we're really worried about their changes in their body and their sexual intimacy, but they don't talk about it with their partners. Any tips, Najita and Jill and Stephanie, about how to kind of make it a bit more of a couple conversation? Because everyone's sort of dealing with it on their own in many ways. Well, I mean, I'll start. I think, again, I think giving somebody permission to talk about it to begin with is a huge thing, right? Like, I mean, mostly it'd be patients, regardless of your side effect. You know, you deal with them because you're alive and you think, okay, well, this is, you know, nothing compared to if I were, you know, dying or something like that, but it shouldn't have to be that way. And so giving somebody permission to talk about it. And I think, I think both Steph and Narges mentioned too, it could be, I mean, listen, when you have horrible mouth sores or you're extremely nauseous or, the last thing, any, you know, physical, like sexual, you know, obviously you're not thinking about that. Then you think, is my partner turned off by that? But that's where it's like, just hold my hand, right? Like some people will say, just hold my hand, you know, or some people, if, you know, like if my husband told me I was beautiful when I was sick, I'd be like, shut up, I am not. You know, some people, that's all they need. It's that, just that, that connection. Stephanie, would you like to add to that? Yeah, I would say from our interviews, every couple is so different and every couple has their special way of connecting. I mean, it's funny, the first thing that jumped into my head was an interview that I conducted recently where humor was really important to that couple and making light of things that most people would jerk at, you know, was really important to them. And that was a really important part of their relationship. But I think, you know, and even like that quote with the biting of the finger, or there was another quote in there that I didn't spend too much time on where they were sleeping in separate bedrooms at 5 a.m. every morning or something like that. The wife would come down and have that intimate moment with the partner. So I feel like a lot of partners find their ways and it's very much based on what the usual is for them. I think it would be very hard for an external person who wasn't kind of a very qualified sexual health professional to be able to kind of dictate to each couple as to what works, if that makes sense. But I do feel like there's a paper in all of this, you know, trying to kind of an academic paper drawing together what works for couples and what helps couples, or it might be a more creative output, as I've said, but something to kind of let people know that other people have these experiences and they're not alone in them. Did you need any communication tips for couples that you've got? I think something that I actually watched this, I've watched so many things, including the master class about sexuality, because I went, no training, right? Again, full doctor, no training. So I watch a masterclass. So they had this game in which the partners put things they like in intimacy and little pieces of paper, right? And they put it in a little jar and they check the jar and they open it and they do it. So they release the pressure of who likes what. Somebody likes it, right? And then instead of communicating and doing that, and it has become a game, that I can tell you yesterday, I learned that one of my patients was practicing prostate massage. His partner, and that's something that he would never imagine. And they did that through this little game. Write in a little piece of paper, put it in a jar and then go home or wherever you wanna go. That sounds like, it sounds like what you're both talking about is to liven it up a bit and put in the fun again and build that kind of trust. What about for someone that, I guess, isn't in a relationship and they experience all these differences and changes in their body image. And I guess there's a fear or an uncertainty about who they are. Any tips or advice on how to bridge that? So I talk, I treat a lot of younger women. So a lot of my patients are actually, don't have a partner, right? So I had three times to argue with a fertility doctor. He's like, I don't care. Just take the freaking eggs. The other question I have to do is sexual health. And that's what I focus so much, masturbation. Looking at yourself in the mirror and telling yourself three things that you like about your body is how I start the conversation with my ladies. Look at yourself in the mirror. This is not about William. This is not about Steven who ghosted you. People, by the way, people with cancer still get ghosted. Differentiation, it's horrible. Dating is horrible. And what do you like about your body now, right? My patient told me a few days ago, I like it, I have a scar, it means I'm strong. This scar shows I'm strong. I'm like, crop top season, let's do that. And that's my way to make sure they feel comfortable with their bodies first. Trying to identify things that they like and maybe have forgotten through treatment. Jill, did you want to add something? Yeah, I mean, the scar thing, I definitely always say I earned every single one of them. I earned them, I own them. It is hard. I think when there's a lot, I know a lot of people who are in relationships that have lung cancer and their biggest fear is how do I put myself back out there? And learning from Narjas, I always say you have to love yourself first, right? You have to love yourself first. And so it really is kind of accepting the way you look and listen, when we go to our oncologists, we want to look good, right? I always say we want to look like we're worth saving. So it's like, but you want to look good for yourself. You want to feel alive, but it's really hard to tell somebody that too. And so I think a lot of times that, so when it comes to all this stuff, I have to tell you the people who are comfortable, we learn from each other in our groups. People will bring up this stuff in groups with other people who have lung cancer or spouses. Usually they're of the same sex and have a spouse of the same sex as them, but they'll have those conversations. They can't talk to anybody else about it, they feel like. So, but the fertility preservation thing is really important too, because nobody gets, it never comes up and then it's too late, in a way people feel like it's too late. And so I was diagnosed in my thirties. No, but I had four kids already, but still, right? Like, what if I wanted, you know, it's, that's where I say it's assumed, I think that, you know, we should just be lucky to be alive. So, yeah, it's hard, but I do have to say going back to, I want to go back to the joking around using humor and all of that. We do that in my family and it definitely works, right? I mean, I, you know, I make jokes with my husband all the time and I'll say, well, with your next wife, you can do this or that. You know, just like, and my kids joke about it now, but what really does help is we are a huge, we love college basketball. So, I mean, I was happy about the Denver Nuggets winning last night, but because of a few reasons, but we love college basketball and I'll never forget, like when, you know, I had surgery, cancer came back, I had surgery again, cancer came back and we started going to the final four every year. And that was what really kind of brought us together again, just us, no kids. And you don't think that that is romantic, right? Like, so it doesn't have to be going on a date, having to, I mean, we went to the final four and we had fun and it really was key to us connecting big time again for with something. Yeah, so. Some of the women that Jill and I interview in the show study, they really like the spontaneous things, right? So everybody thinks there has to be a bed full of roses and boys to men playing in the back. No, it's spontaneous activities are actually very, like they're cherished by these women from their partners. And I just want to add that. I just want to touch on what Jill said, mentioned about fertility preservation and no one talks about it particularly in lung cancer. Are there any, what are people's choices, Najita? Well, Jill and I, Jill's got a grant to do that. So, you know, we started with the way up, Boba, now we're going on the way up to urinals and tubes. So women with lung cancer are the second group least likely to be off of fertility preservation and men as well. It's never talked about it. It's not discussed despite the age of patients with lung cancer becoming younger and younger. So Jill and I just got a grant to do an intervention and younger women that will go in immunotherapy with fertility preservation. But that's something that our nurses or allied health professionals can help us because there's a lot of things that I learned from my, and they're not mine, they're not my property, sorry to say that, the people that I work with, the nurse practitioner and the nurses that see my patients, because I get a lot of the information that they don't feel comfortable. That's why we all have to talk. And I always have an open conversation because I learned about one of my patients being in a domestic abuse relationship from the chemotherapy infusion nurse. And I asked her, are you doing okay? Do you feel safe at home? Yes. So that's what fertility, not only that, but domestic abuse, male, women, non-binary, members of the LGTB community, that's why we're all here to work together. I cannot do half my job without my Michelle and my Stephanie. Like, yeah, I can tell you how fortunate I am that these three ladies and I are, we talk about everything, but patients are more comfortable talking to nurses and that's our fault as physicians. We need you. Stephanie, as a nurse, what can nurses do about fertility preservation? To be honest, I'm quite far from practice now. I'm quite detached, but through the interviews again, yeah, it's absolutely right. I'm delighted that you are working on this, Najas and Jill. I'm really pleased because it's something that comes up time and time again, especially with the younger women that we interview and not only with pleural mesothelioma, but also with peritoneal mesothelioma. It's just, they say, I asked for my eggs to be harvested and they said, what's the point? That nihilism is really there. I know, I know, really devastating. And they had no idea what the procedure would be like. They pushed for it, they got it, and then it was an awful experience. They had no idea it was gonna be like that. And yeah, so I'm just delighted that you are working in that area. I really look forward to seeing what comes out of that. What comes out of that project? You know, it is, unfortunately, I think some of the most devastating experiences and being a, you know, helping people when they're newly diagnosed is, you know, I mean, there's been a couple that I've helped, a couple of people that they've had to terminate their pregnancies to start treatment. The way they are told almost like, well, you gotta choose, do you wanna live or not? I mean, it is so horrible. I, you know, again, I, there is no magic way to do this. The only thing that the advice I could give you is to not assume and just ask. And if you ask in a sincere way, and I promise you, it will make a difference. Even if they're not comfortable talking about it, and, you know, you say, if you don't wanna talk about this or that, but, you know, let me know, I could refer you, just ask, just, it's like anything else. You just want it acknowledged, right? Like, you don't know if you're ready to do anything about it, but the fact that the elephant's in the room and no one's talking to you about things that are important to you, whether it's intimacy or fertility, that really, truly, simply asking and bringing it up is so important. And then in terms of asking if you feel safe at home, I always laugh when they ask me when my husband's sitting right next to me. I'm like, if I don't, do you think I'm gonna say I don't? So, you know, that's a hard one. So, you know, I don't know, when the patient gives blood, could you sneak in the question then? Or, you know, because if they do come with their partner, then it's really hard to ask that question, but it's there, yeah, there, we've seen that more than a few times in the community. So we're almost coming to time. So I just want to finish up on, we all want a doctor like Najib that's open and able to talk about all these issues that are confronting for people. But what's your one tip for clinicians to feel less overwhelmed in bringing up sexual health issues? Like what can they do to prepare themselves? Because they exist, 77% of people with lung cancer will experience it. So what's your one tip? We'll start, shall we start with you, Najib? Okay, my one tip is, if you don't feel comfortable saying in person, you ask your patient to say a patient gateway to their doctor and the patient gateway can be. Let's talk about sexual health in my next visit. Jill, your one tip? My one tip is just to bring it up and ask and let the patient and their care partner know that there are resources if and when they are ready and you can help them. Stephanie? It would be to give permission to your patients and carers to talk about it. So just open up that conversation and let them know that it's a safe space to talk about that sort of stuff. Thank you all for a great panel discussion. I'm just gonna hand over to Michelle to close. Thank you guys for joining us today and we hope to see you at the IASLC World Conference in Singapore. Thank you.

sexual health

intimacy issues

lung cancer patients

healthcare professionals

body changes

treatment side effects

self-esteem

relationships

fertility preservation