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IGCS 2024 Nursing Symposium
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So I think we might go ahead and get started. You're all very welcome to the first ever IGCS Nursing Symposium. My name is Sarah Belton, and I'm an advanced nurse practitioner in gynae oncology at the National Maternity Hospital and St. Vincent's University Hospital. We're part of the UCG gynae oncology group, which is one of the largest gynae oncology centers nationally. I was fortunate enough to attend this meeting in Seoul in Korea last year, and I'm delighted to be joined by some of our international nursing colleagues. We have two of the IGCS Nursing Education Working Group here, Noriko, who's come from Japan, and Chrissy, who's come from the USA. So I'll hand it over to Noriko to introduce herself. OK, thank you, Sarah, for welcoming us to beautiful Ireland, and for all of you joining us today. I'm Noriko Fujiwara. I work for the research hospital of the University of Tokyo, Japan. I took from Japan to here 24 hours on flight. Thank you. Hi, all. I'm Chrissy Donovan. I'm from the US. I'm currently an oncology nurse over there, and I'm so happy to be here and pleased to be able to present in the first nursing symposium. So thanks, Noriko and Chrissy. Would you believe Chrissy and myself have recorded a podcast together, but this is our first morning actually meeting in person. So our final chair this morning is Fiona Kelly from the NCCP. Fiona, would you like to introduce yourself? Yeah, I will. Thanks, Sarah. Hi, my name is Fiona Kelly. I work as a nursing project manager in the NCCP. We're delighted to sponsor today's event, and we are grateful for so many of you for attending today in lieu of your busy schedules. Terry Hannan, who is the national clinical lead for cancer nursing in the NCCP, was particularly delighted to extend sponsorship to 35 staff nurses and some CNS as well. So we're really, really pleased that you're all here today to be able to participate and also experience this symposium. Thank you. Yeah, I couldn't agree more, Fiona. When we first got together as a group to plan this event, we wanted to create an opportunity for nurses to connect, to collaborate, and to feel empowered leaving the meeting. So we have some excellent presentations lined up on sexuality, menopause, genetic testing, immunotherapy, nurses' well-being, as well as our co-chair, Noriko, is going to present on her nursing experience and her research. We'll have time for questions after each of the speaker groups, and there's microphones at the end. If you'd like to come up and ask questions using the microphones, that'd be great. So I'm looking forward to everyone's presentations. We will be having a mid-morning break. And at the conclusion of today's symposium, please join us for lunch with the attendees of the Advocacy Summit and the IGCS board directors. We hope you all take the time to stay and network with us, and buffet-style meal is available. But before we get to that, let's get started with our presentation from Janelle Sobecki. Thank you. Hi, everybody. Good morning. We are starting out with a talk about sex. So if everybody is still sleepy, you're going to be awake in about a minute. Let's see. Oh, OK. Perfect. Clicker's a little sensitive. So my name's Janelle Sobecki. I am a GYN oncologist at the University of Wisconsin in Madison, Wisconsin. And I'm also the medical director of our Cancer and Sexuality Clinic that we are really proud of our institution for supporting. Very happy to be here with all of you today. I do not have any disclosures except for the fact that I care a lot about this topic, and that will probably come out a little bit as we discuss. So who is impacted by sexual health problems after cancer? The short answer is assume everybody. There's some data on this estimate. And the best data is estimating at least 40% to 75% of women experience some sort of change in sexual health or sexual function following a cancer diagnosis. For gynecologic cancer specifically, there's estimates that estimate up to 90% of patients with a gynecologic cancer experience some sort of sexual function problem following diagnosis and treatment. I like to highlight the patient voice. So these are voices of our patients that came from a quality improvement survey that we did a handful of years ago. And I think there's some incredibly important takeaways from here. And I did not edit any of this. This is exactly typed and entered by patients. So I have to take narcotics to have sex. Chemo made my skin so sensitive that I hated being touched. A lot of commentation about dryness, vaginal dryness. Partners. So this impacts patients' partners quite a bit. My partner was uncomfortable and afraid of physically hurting me. Lots of sentiments about how sexual health is really important to the human experience and to overall health. I think sexual health is important. I am a whole person. Lots of sentiments about that. Sex is an integral part to the human experience. Having cancer is a very dehumanizing experience. And feeling like I had lost yet another part of my humanity, a normal sexual relationship with my partner was incredibly emotionally painful. So really, really important voices from the patients that we take care of every day. This is important to them, whether they're bringing it up or not. So what are some of these common sexual problems after cancer? So essentially, any sexual problem that can be experienced is being experienced by patients with cancer. But things that we see most commonly are going to be pain with intercourse. And that can be secondary to a lot of things. Vulvovaginal atrophy being the leading cause of pain with sexual activity. Certainly, that comes with difficulty lubricating. A condition called vaginismus. That is an involuntary contraction of the pelvic floor muscles that prevents insertional sexual activity. Vulvodynia. Vulvodynia is a specific condition to the vulva itself that can cause a lot of pain and discomfort with sexual activity. Certainly, along those lines, there can also be a decrease in libido or sexual interest. That can be the primary problem. Or that can be secondary to these other issues. If a sexual experience is painful, causes the partner and the patient a lot of distress, there's not going to be a lot of interest. And that leads into this, what I call the vicious circle that you guys see on the right-hand side, is that these issues aren't independent. One leads into another, leads into another. And it can also be really hard to talk about. And so people can be having this vicious cycle of sexual health problems. They don't know where to turn. It's hard to talk about to their partner, let alone a stranger in a clinic or their medical team. And this can really set patients up for a really difficult and internalized problem that they don't quite know where to turn. What can cause these problems? Essentially, everything we do to help cancer patients can cause these problems. So surgery, absolutely. Gynecologic surgery. Sometimes we're doing surgery and making changes to actual sexual organs. Same with breast cancer. Osteomies, lymphedema, breast sensation. Endocrine therapy, premature menopause, early oophorectomy, certainly aromatase inhibitors. Radiation. Radiation can cause destructive changes to the tissue itself that can lead to these issues. Chemo. Many people don't think of chemo. If you remember that patient that said, chemo made my skin so sensitive I couldn't stand being touched. So chemo can even impact that. And that's a kind of lesser known fact. And then some other things, right? Depression, sleep changes, graft versus host disease in some of the lymphoma patients we see, and relationship stressors. And that's in addition to all the other comorbidities that are non-cancer related that patients have. So what do we do to treat these problems? There's a lot that can be done. And I think if you walk away with any message, it's that. Education and counseling goes a tremendous way in helping women. Vaginal moisturizers, lubricants, dilator therapy, deep collision dyspareunia devices. That's what you guys see on the bottom right hand side. Those can help a lot with women who experience painful vaginal penetration with deeper penetration as that goes on to a male partner and kind of blocks the depth. That can help with some of that. Pelvic floor physical therapy, incredibly effective. Sex therapy for couples and individuals. And then other referrals based on individualized needs. I put together a very quick list of ways to quickly incorporate sexual health into your oncologic practice if you aren't doing so already. My first piece of advice is to screen everybody. So if you make sexual health problems a part of your normal review of systems or a part of your normal kind of clinic intake forms, this does a couple of things. You don't leave anybody out. And it becomes routine. So a patient either receives that question or sees that question on a computer intake or paper intake. And you know what they remember? They remember that it's there. So maybe they don't talk about it or check that box that day. Or maybe they don't admit to having a problem that they want to talk about that day. But they remember in the future, hey, my clinic brought this up. This is an important thing to ask. And it's amazing what will happen if you just widely screen. The patients see that it's important. And you're going to catch people that you want it. Because it's hard to talk about it and patients are reluctant to bring it up. Don't assume anything. We know from research that people of all walks of life, of all ages, are having sexual activity. So screen everybody. Don't assume that anybody is or isn't participating in sexual activity. Get comfortable with the language. This is hard stuff to talk about. It's hard for us. It's hard for patients. Find a language and a scientific and medical language that you're comfortable saying out loud. Plan a dedicated visit to address issues. This is a time-consuming topic. In our clinic, we actually split our new patient visit into two one-hour visits. So try to avoid that doorknob question, right? You're finishing up, you're walking out of the room, and the patient says, hey, I have one more question. Validate that concern and tell the patient, let's make a second visit to really, really dive into this and give this the attention that it deserves. Know your resources. I'm going to include some national resources for you. But within your clinic and health system, if you're not the person that can treat the problem, identify some resources so that you can. And some of the most powerful people to help in this area are people that ask the question, find out the problem, and can even refer them to a specialist. You don't have to be the person that treats these issues to be somebody that can be really impactful in this space. My other tip is that vaginal moisturizers and lubricants essentially help everybody. And anybody can recommend them. In our clinic, 99% of patients are given and typically helped simply by vaginal moisturizers and lubricants. So that is a really, really easy thing that anybody can recommend. I wanted to give a very brief snapshot of our specialized cancer and sexual health clinic. It's called the WISH program. I certainly recognize how lucky we are to have a cancer center that supports a dedicated program. I know this is not the norm. But I wanted to give you guys a little peek behind the curtain, so to speak. So our program was established a little over 10 years ago. We treat all patients with female sexual organ cancers who have sexual health problems. We've seen more than 500 patients of all ages and all cancer types, predominantly breast and gynecologic cancer. But we see plenty of patients from leukemia, lymphoma, colorectal cancers. We also run an IRB-approved prospective patient registry. So in addition to treating patients, we're trying to gather evidence that we can widely distribute and how to do this better. Like I said, we do two visits. So the first visit is 60 minutes of just talking. And I cannot tell you how many times we've run over. This is a robust topic. And then our second visit is really dedicated to that expanded sexual health exam, including an expanded pelvic exam. You guys can see all those components there. And then we put it together in a treatment planning session with the patient. And we really, really value an integrative care model. So a lot of times our pelvic floor physical therapists are involved, our psychotherapists and counselors are involved. This is certainly a biopsychosocial integrated model. Lots of tools and resources. So for us, we have a new patient intake form and we really try to focus on collecting validated measures. More recently, in the more recent years, we've added the PROMIS-Sex FS. But we have also traditionally collected the SFQ and the FSDSR. We have a dedicated team to recruiting for that IRB. Recruitment's a little over 50%, which is great. And then we have curated a lovely collection of educational resources. So we have a bibliography for patients, as well as kind of a library of educational handouts and resources. This is our team, myself, and then three of our just tremendous APPs, 2PAs and NP. Here are some of those resources. This is certainly not an exhaustive list, but I have many colleagues that have helped develop many of these resources. And I think these ones are really good. And with our short time this morning, that's all I have. My email's there. Any questions, certainly find me after the meeting. Happy to talk more. Take that, sorry, just didn't get to get the email address. Oh, oh, it already, like that, yeah. We can share it after. We'll share it after, yeah. Okay. Okay, so thanks, Janelle, please. Yes, please join at the table. And now welcome Catherine Casey and Aisling Mulchey to join us and share their presentation on menopause and HRT and hormonal. Thank you very much and thank you for inviting me to speak on a topic which I am dedicated to and have been dealing with for almost 40 years. We can get up the presentation, thank you. Okay, so basically menopause is a reproductive milestone that marks the beginning of a new chapter in every woman's life trajectory. It's nothing new. It has been around since well before Christ. Hippocrates and Aristotle referred to the end of menses and loss of fertility right in the fifth century BC. And the Chinese and their Chinese medicine with the life cycles, a seventh life cycle at the age of 49 defined the loss of fertility. Since then it's been mentioned through Roman medieval times. And it was really into the 19th century when it became an entity. And symptoms were so bad at the time that many women were put in prison because they were being thought of as witches because of the symptoms that they had. 1923, the oestrogenic steroid was isolated first of all. And in 1942, Premarin was discovered which was the first HRT that we had which was a combination of a number of oestrogens which was taken from pregnant mare's urine. Still used particularly in the States. But the real impact for menopause came in the 60s with the forever feminine book and the introduction proper of HRT and menopause. So it's been around for almost 60 years and there's been a number of stigmas about it since. I don't like Joe Duffy for all of you who are Irish here but I have to take my hat off to him. We've been trying to get menopause on the radar and women educated about menopause for years. And in two weeks, he did it on radio. So I have to take my hat off to him. So what are we talking about? Well, the age of menopause hasn't really changed. It's average of about 50, 51 years in Western society but our life expectancy has significantly increased so that we're spending about a third of our lives in an oestrogen deficient state. We make up 51% of the population. We have greater longevity of the men but we have fewer debility free years compared to them. So it's vitally important that we educate our women and all of us in what happens at menopause to improve our quality of life and our long-term wellbeing. So why do we go through menopause? Let's see if I'm missing one. We go through menopause. Some people have an early menopause which is regarded as under 45 and about 5% of the population, about 1% of the population under 40 and about 0.1 of the population under 30. And there are a number of factors in our in utero life and in our childhood which makes us more prone to an early menopause. And then some lifestyle factors like smoking, high altitude, various medical conditions and syndromes. And about 5% of people go through a late menopause after 55 and again, a number of factors if you are breastfed, if you have multiple children and high cognitive ability as a child makes you more prone to a late menopause. So why do we go through menopause at all? We have a finite number of eggs in the ovary and it's maximum at about 20, 28 weeks gestation. We start losing from there and at the time of our birth, we have about 2 million. When we go through menarche, anywhere from about 10 onwards now, we have about 400,000 and we still have about 1,000 eggs left when we reach menopause. But the difficulty is they're poor quality and they don't respond well to stimulation. Hence, we lose our hormones. So why all the fuss? Menopause is not a disease, but there is no doubt that because of the biological changes that occur, it has a huge impact on quality of life and patient's wellbeing. And the consequences can, particularly of long-term estrogen deficiency can be particularly bad. And sadly, because of all of the, I suppose polarized views over the years, many people aren't trained well in management of menopause, particularly since the early 2000s with the WHI and Million Women Study. So we need to know what symptoms there are. With the increase in awareness of menopause now, any woman that seems to present between about 40 and 60 is regarded as being in menopause and nothing else is outruled. And it's very important to outrule any other underlying cause of symptoms. There are a huge conglomerate of symptoms that occur and I'll go through these separately. The first usually that happens is that the menstrual cycle changes. It may become longer, it may become shorter, it may be heavier, it may be lighter, anything can happen. The difficulty is it's happening at a time when women also may have a pathology. So it's very important to outrule any underlying pathology before we presume it's just premenopausal or perimenopausal bleeding. The next commonest symptom that occurs is the vasomotor symptoms and they are particularly disturbing. If any of you have ever had flushes and sweats, you'll know what I'm talking about. Often people feel that if they're still getting periods, they can't have symptoms. That's not the case. They can start any time before the last period. About 25% of women will sail through without needing much assistance. But 75 can have significant symptoms which will impact their quality of life and about a third of these are severe. About 20% of patients go into their 60s still getting flushes and sweats and about another 10% into the 70s. It's poorly understood but we do know that women who start vasomotor symptoms early and where the severity is high have a higher instance of cardiovascular disease. So it's very important if patients are presenting with this that they're also screened for cardiovascular disease. Psychological symptoms, really debilitating. Where usually these occur at a time in our life when we're at the peak of maybe our work or home life and a depression, inability to cope, no concentration, memory, brain fog, all extremely debilitating. And also there are a number of life circumstances in our midlife where maybe partners are retiring and they're suddenly at home and everybody's living together and it's not easy or kids leaving home. But definitely changes in life can also contribute to this. Sleep disturbance, huge. Difficulty getting to sleep at times or maintaining our sleep. And of course this leads to fatigue, poor concentration, bad mood the following day. So it is a knock-on effect. And for anybody who's trying to keep their weight down around menopause, you know how difficult it is. Even with what you used to be able to eat and lose a few pounds in a few days or a few weeks previously, it's much more difficult now. And that's because our metabolism changes. We have a higher cortisol and we put central adiposity, central weight on, which is more difficult to deal with. The genital urinary symptoms, as has already been alluded to, are particularly common. And these are ongoing right through post-menopause. And it's because of the widespread oestrogen and progesterone receptors in the genital urinary tract that we get all of these symptoms of bladder and, of course, incontinence and recurrent infections. Sexuality, again, has already been alluded to, but certainly loss of libido, decrease in arousal, and dyspareunia or painful intercourse, a lot of it due to dryness and burning because of loss of oestrogen in the vaginal area. And fertility is an issue that needs to be addressed because for some women, they may not have had the opportunity to become pregnant until their mid to late 40s. And suddenly, that has been taken from them, a very difficult time. Or you're trying to avoid a pregnancy and your cycle is no longer regular. So risk of pregnancy or fertility, both issues that need to be addressed. So what are the long-term effects that we mentioned earlier? Mainly cardiovascular disease, osteoporosis, and the genital urinary symptoms that continue. Just going through cardiovascular disease, it is the biggest killer of women post-menopause. Cardiovascular disease and stroke, far more than any cancers. But when you ask women their perception of what's going to kill them, it's cancer. As far as they're concerned, breast cancer and general cancer is their biggest killer. They have no idea that heart disease is their biggest killer and we don't do well with heart disease as women. Many will drop dead outside of the hospital and 90% of cases are preventable. So again, it's very important to educate our women regarding vascular disease. 5,000 Irish women die each year from heart disease, far more than after breast cancer. And as I say, one in four of us are going to die from heart or stroke post-menopause. So if it's something that's preventable, we need to deal with it. The women we feel think they're protected because heart disease is regarded as a men's problem, but in actual fact, we have exactly the same risk. We're just delayed a bit 10 years later. We don't do as well as the men. Any interventions don't do as well and often we present in an atypical manner. We're more likely with hyperlipidemia, hypertension and metabolic syndrome are three of our big risks. So osteoporosis, common as bone disease, it's silent. Many people don't realize they have it. Extremely common in women, more so than men, but can occur in any age group, particularly when we see a lot of our kids, teenagers with eating disorders. We need to watch out for all of that because bone is laid down between the age of eight and about 25. And if we don't have a good bone base at that stage, we're not going to have enough bone when we start losing it from our late thirties, early forties on. So it's very important that we emphasize quality of life, bone health and diet in our young teens and early twenties as well as in our post-menopausal women. It is a significant burden on society, both from quality of life and our health industry and finances. About 50% of women and 20% of men will get a fracture at some stage in their life. And more people, more women die from osteoporotic fracture than they do from ovarian, uterine and cervical cancers combined. And many women don't realize that. There are a number of risk factors that are modifiable. And again, we're dealing with the holistic approach of lifestyle, diet and exercise, being aware that some drugs will make women more prone to it and indeed various conditions. Some we can't deal with, either our age, our race or our family history, but the modifiable ones we should be able to counteract. Commonest fractures are wrist, usually is the first one to present, vertebral and hip. And the hip is usually later in life, the wrist anywhere from the fifties and the vertebrae the same. And we lose height. And when we lose height, it has issues then on our respiratory function, our pelvic floor and our gastric function. So it's very important to try and reduce the risks of that. So how do we manage all of this? A holistic approach is very important and a biopsychosocial approach to all of this. So we advise regarding diet, good healthy diet, all the food groups, just the better versions of them. Exercise vitally important. Exercise has been shown to improve symptoms significantly in randomized control trials. One of the few lifestyle actions that we can do that will reduce symptoms. So 150 minutes of moderate exercise or 75 minutes of brisk exercise per week. And as Aisling usually quotes, moderate exercise. If you're going for a walk, you can talk, but you can't sing. No smoking and no recreational drugs preferably. Moderate alcohol, less than two units per day or 14 units per week. Try and maintain a good healthy BMI, healthy weight. Pelvic floor exercise is very important. We advise regarding healthy bones with again, lifestyle diet and exercise. We look for risk factors for cardiovascular disease. We advise in the various screening programs, mental health issues and sunscreen, et cetera. So a huge holistic approach to all of this. But sometimes no matter how we try and impress that this is so important, our spirit is willing, but the motivation isn't there. So what have we got to treat instead? There probably hasn't been controversy about any other treatment in medicine other than as much with HRT. And a lot of that is because of the polarized views that are out there and the impact that the Women's Health Initiative study and the Million Women study had in the early 2000s. And basically that suggested that the risks with HRT were higher than the benefits because it was used in older women at different dosages. When it was all re-evaluated, which it has been over the last 20 years, there is a window of opportunity for treating patients where the benefits far outweigh the risks. Unfortunately, because of the time constraints, I can't go through that with you, but I would advise you, there's a very good position statement from the group of menopause societies, which was published in 2016 and re-evaluated in 20, giving all of the benefits. So hormone replacement therapy, we use three main hormones, oestrogen, progesterone, testosterone. Oestrogen can be given in a number of ways, by tablet, transdermally, or there's the synthetic oestrogen, as we said, tibolone, Livyel. There's a combination of oestrogen with CERMS, Selective Oestrogen Receptor Modulators, and then the conjugated equine oestrogen, which is Premarin, which we really don't use much of this side of the pond at all, it's mainly the states. The dose and what to start at depends on the woman and the individual needs and her symptoms. We measure the response by her symptom relief, not by bloods. Bloods are a waste of time in the vast majority of cases, unless you're looking at a premature menopause, because they fluctuate so much. And the duration, again, depends on the symptoms. There used to be a five-year rule that is gone. You give the lowest effective dose for whatever length of time the symptoms are present. Progesterone is very important, because if a woman still has a uterus, if you give oestrogen on its own, you'll result in changes in the endometrium, and so progesterone is there to counteract that. It can be given, again, orally, transdermally, or with an intrauterine device, and the only intrauterine device that's licensed for HRT protection is the Mirena. We usually use a natural progesterone uterogestone, and it can be given cyclically or continuously. It's given cyclically if women are still getting periods, or if they're a year without periods over 50, or two years without periods under 50. It will give them a bleed still, and then it can be used continuously if they're amenorrheic for over those times. Testosterone is not licensed for women. We don't have any product for women, so we use the men's testosterone in about a 10th of the dose, about five milligrams per day. It can be given from a pump or a sachet. The only evidence that supports its use is for libido, but anecdotally, a lot of women would say that it helps with other menopausal symptoms. The difficulty is we have no clinical evidence to support that, because those endpoints weren't really looked at, and any studies we have are very small and don't have a lot of power. But there is a big study in the UK at the moment looking at those endpoints, so we will have more clear view in the future. It's very important, actually, when we're using testosterone that the levels are checked, the blood level done before you start the patient. It's then checked again at six to eight weeks, and then repeated at six months, and if they haven't had a response in symptoms in that time, then you stop the testosterone. There's a number of local treatments in the vagina which is best for vaginal dryness and dyspareunia. You can give local oestrogen, you can use DHEA. Ospemiphene is a CIRM, which is not available here, but available in the UK and Europe. You can use vaginal moisturizers, lubricants, surgery is a last resort. Laser, I've put a question mark there, because while laser works well for stress incontinence, the jury is out as regards atrophy of the vagina. The results have been similar with the sham laser as the active laser, and many of the women in the studies initially were also on oestrogen, so we're still waiting for proper results from the use of CO2 laser or YDLAG laser for your genital treatment. Number of non-hormone treatments, but that talk is coming up, so I'll skip over that. I've just mentioned bioidenticals, because when the WHI in Million Women study came out, everybody retreated to bioidenticals, and what happens is a sample of saliva or serum is taken from a woman, her hormones are measured, and then a compound is made up in a pharmacy, supposed pharmacy, that's supposed to be individualized for her, but there's no regulation, there's no assurance, and we don't know about contaminants. And it's important to stress to our patients that all of the HRT that we use are body identical. It's oestradiol, and we use the natural uterogestine progesterone. So we avoid, and none of the societies would recommend bioidenticals, so body identical is what we want. As with everything, there are side effects. There are a number of side effects, and the vast majority of patients will get some of them, but they will usually settle, and if they don't settle within a few weeks, then we look at the treatments they're on and tweak them depending on the type of symptoms that are occurring. There are also contraindications. Not every woman can take HRT, and not every woman needs HRT. The main contraindication is an oestrogen-related cancer and a thromboembolic event that was related to pregnancy or the pill, in other words, hormones. So we need to balance out the risks and benefits. We know that the benefits of HRT are significant relief in symptoms. It's the gold standard for symptom relief. We know it reduces the risk of osteoporosis and cardiovascular disease. In women who have a prophylactic BSO, then it certainly helps with neurocognitive disease, but again, there's varying views as regards its effect on dementia in later life, and we know it reduces the risk of colorectal cancer. The problem is, is there a marginal increase in risk in breast cancer, endometrial cancer if we don't have adequate progesterone, thromboembolic disease if they've had a clot before related to pregnancy or the pill. If they've active gallbladder disease, we have to be careful with oral oestrogen particularly, and of course, the main risk for me is all of the misconceptions and myths and legends that are out there, particularly on social media at the moment. So if we just deal with some of the risks, the general perception after the WHI from the public was that the risks were higher than the benefits, and many women spent years suffering, and then apart from suffering the symptoms, they had long-term effects with the risk of osteoporosis and possibly cardiovascular disease. So I've just gone through some of these just to highlight, and this is a summary of what's in some of those position papers. HRT does not increase the risk of cardiovascular disease in women, and oestrogen only is certainly not associated with any increased risk. Oestrogen and progesterone may have a low increased risk, but it depends on the type of progesterone, and if we use the natural progesterone, then that risk isn't there. There is definitely a reduced cardiac mortality and all-cause mortality in women who use HRT under 60 or less than 10 years from menopause, and in women over 60, we were concerned that HRT may aggravate from a cardiovascular point of view. It doesn't. It hasn't a beneficial effect, but it is no adverse effect either. It's very important that individual risk factors are assessed, and if there is atheroma, or if there is significant disease there, then statins in conjunction with HRT is of benefit. So the risk factors are optimally managed, and they're not a contraindication. What about women who've already had an MI on HRT? Well, certainly, when the studies were done, the current users of HRT, while they had their MRI, had lower mortality than those who hadn't, but it is a hypercoagulable state, so we use appropriate progestogens and preferably a transdermal route, and certainly a statin associated reduced any risks. The risk that we have with oestrogen is that the fear is that it may destabilize plaques, but if they're already on a statin, that will stabilize it, so that balances out. What about those who've had a previous MI on HRT? Again, transdermal with the lowest effective dose is better and a non-androgenic progestogen and the addition of a statin. So if they have disease or they've already had an MI and their symptoms are bad, then they can use HRT, and it is for symptom relief. It's not the forever young drug that is out there on social media. Stroke is the other issue that people worry about. As I mentioned, one in four of us are going to die from it, so we don't want to make it worse, but under 60, it's very unlikely we're going to get one. So it's safe from that point of view. In the over 60s, if you use HRT for more than five years, there's an extra one stroke per 1,000 women. So the risk is very, very small. Thromboembolic disease. No matter what hormones we use, there's an increase in getting a thromboembolic event of about two to four-fold over the background population with hormones. But if we use transdermal, that risk is significantly reduced, if not removed. And the main reason with the oral is because the oestrogen has to go through the liver to a first-pass effect, and that affects the coagulation cascade. When it goes transdermally, it doesn't. It is maybe one pass, but the risk is much lower. And then, so you can still use oral, but if you have somebody with a high risk, then it's preferable to use the transdermal route. And the progestogen type is very important. We use a non-thrombogenic progesterone, like dihydrogesterone or uterogestine, the natural progesterone. Breast cancer is the big worry that women have, and it's the one thing that they will ask you about if you're discussing HRT with them. It is vitally important that it's put into perspective with lifestyle risk factors. And many women don't realize that. If they're overweight, if they smoke, if they don't exercise, if they take more than one glass of wine a day, they are at risk, same risk, if not higher, of getting breast cancer than if they take HRT. And that needs to be stressed to them. And this is a pictogram that we use in the clinic all the time. The magenta colors are the high risk, and you can see with the BMI of over 30 close to the bottom there, how much the risk of breast cancer is increased with a high BMI, and how many of our patients have a high BMI. We're seeing huge numbers now compared to previously. If you look at the third one down from the top, estrogen-only reduced risk of breast cancer in women under 60 who took HRT with estrogen-only treatment. But we can't say it's protective, but certainly there wasn't an increased risk. So this just stresses to them the lifestyle risks that are there versus HRT. There are a number of cancers, patients who have survived cancer who can take HRT, and there are a number who shouldn't. And then there's a couple in the middle who it's debatable and needs to be discussed with their specialist to see how they are, how far after their cancers they are, and whether there were estrogen receptors or not in their disease. The big thing, there's the menopause international, World International Menopause Day is on this Friday, the 18th of October. And every year the international menopause societies come together and bring out a white paper. And it is being published this week. And the theme for this year is menopause hormone therapy. And this is what they're suggesting, the five Ws of prescribing. Who is it for? What types and doses do we use? When should it be started and stopped? Why is it important? And where can it be accessed appropriately? So we initiate treatment when symptoms start. It doesn't matter whether they're still getting periods. It doesn't matter what age, relatively speaking. You go through the symptoms, you make sure they're menopausal, and you treat. In the perimenopause, the type of treatment is dictated by the type of symptoms. You look at whether they're still bleeding or not, whether they need contraception, and whether they need sequential or continuous treatment. And there is a window of opportunity, as I mentioned, under 60 and less than 10 years from menopause, when the benefits far outweigh the risks. All women are not equal. And it's very important that we individualize each treatment and look at the woman's, her own awareness of her symptoms and how it's affecting her quality of life. And different cultures have different emphasis on symptoms. And it's very important that we deal with these. And the worry that we have, that a lot of the marginalized groups at the moment aren't getting access. And we need to get out there and educate them about menopause and about the risks and about the long-term effects, particularly. It's very important to give the right medication to the right patient at the right time. There are benefits for primary prevention, as we said, of osteoporotic fracture, cardiovascular disease, and all-cause mortality in the window of opportunity. And I'll just leave you with this. Thank you very much. Thank you. Thanks very much, Dr Casey. So myself and Dr Casey, we work in the complex menopause clinic in Neenah, and there are six of them around the country at the moment. So I'll just give you a very, very quick case study of one lady who we've seen recently. So, this lady is a 48-year-old lady. She was 48, she was premenopausal when she was diagnosed with her ovarian cancer. Back in 2022 she had her chemo, her surgery chemo, and this lady's own personal preference was to avoid HRT where possible, as well as we were agreeing with her with that. Married lady, she was a hairdresser but because of her extreme hot flushes during the day, she had to give up that job and she now works in an outdoor school. She only drinks socially, she doesn't smoke. So, her hot flushes were really, really significant and her drenching night sweats. She would describe it every 15 minutes continuously. Extreme insomnia as well, obviously, if she was having drenching night sweats, and that all then led to really, really fragile emotional ability, just her mood, anxiety, rage with the children, just really, really poor quality of life because of all these symptoms. Along with that, she had vaginal dryness, which was spoken about earlier, and also some urinary frequency. So, this lady was just really, really, you know, finding life very, very tricky when she came to us. So, like I said, we were trying to avoid HRT for this particular lady, so we went down the SSRI route with her. So, we recommended a drug with her, venilofaxine, which I'm sure lots of you are aware of. We start slow, slow and low, and start at 37.5, recommended that for three weeks, and then once she got over the initial side effects, to increase up to the 75. So, the big thing in our clinic, I suppose, is the chat about what side effects to expect and, you know, best they can to soldier on the first couple of weeks, because we do see positive results when they stick with it. So, things like the dry mouth, really, really important to talk about. Headaches, nausea. These are other drugs that we would kind of think about as well, and I know this is what we discussed a little bit later, so these are just kind of, I suppose, up our sleeve as well when one doesn't work. We do have a few that we can use. Then this lady, her vaginal dryness. So, what we normally, we go with the vaginal moisturisers first, and these, I know, again, I've spoken about earlier. So, you have your, yes, your silk or your replens, but we have a very low threshold to recommending going on the local vaginal oestrogen here. So, this particular lady, then, we recommended the Vagifem, which is every night for two weeks, and then twice a week. And we also have the women's health physio in Neenah as well, so because of her frequency, we refer to her there. These are just pictures of the moisturisers, and then the vaginal oestrogen, so your Blissell and Vagifem and Vagirox. So, when we were chatting to her, we did the lifestyle diet and exercise that Dr. Casey has already spoken about. She was already doing absolutely everything, so she was a tricky lady in terms of, you know, she was doing the best she possibly could for herself already. We also then referred her to our Cancer Support Centre in the Midwest, which they were able to offer her some cognitive behavioural therapy, which has been proven to be very, very beneficial for ladies with menopausal symptoms. So then we carried out our three-month virtual review with this lady. So while she said initially she was a bit feeling a bit weird with the venlafaxine, she said after the couple of weeks that she was able to go up to 75 and that things were definitely improving for her. Now not gone 100%, but life was definitely a little bit easier for her. And I suppose then at that point it was just to say, look, it does take three to six months for all these medications to work. And like we thought, the vaginal moisturisers, they weren't enough for her. So we went to start at the local vaginal Eastern at that point, and she attended the women's health physio for her frequency, and that was definitely a lot better as well. So then just the different places to refer. So if you want to take a screenshot of these to be able to refer your patients. So this is us in Limerick, myself and Dr. Casey and Dr. Brian Kennedy. Then in Galway, they have Dr. Marina Kern and Helena Carr is a CNN2 In the National Maternity, you have Dr. Georgia Lundy and Nicola Cochran and the nurse there is Claire McElroy. I'm sure some of you probably know Claire. And in the rotunda then is Dr. Kweeva Hartley and the CNN2 is Mercy Ninan. The Coombe is there as well. So, and Cork. I know we have some of the girls from Cork here as well today. So that's it. And all the references are there and the drugs that we recommend. Thanks. That's it. So thank you to both Dr. Casey and Ashley for those lovely presentations. I now welcome Professor Donal Brennan, who will be presenting on non-hormonal menopause after cancer treatment. Thanks very much. No, I'm not going to do Noriko's PhD. That would be really difficult. I know Noriko quite well and I can tell you that's going to be a serious talk. You're all welcome here to what's a very big week for gynae cancer in Ireland. And we have a big meeting going on at the moment in Dublin Castle called the GCIG Cervical Cancer Consensus Conference, where we've all the international experts in cervical cancer meeting to decide on how we do clinical trials going forward. And of course, we're starting the IGCS meeting today and it's a huge week for gynae cancer in Ireland. And we're delighted to have a nursing symposium because I think those of us that work in gynecological oncology, particularly the men who work in gynecological oncology, are absolutely dependent on our nursing colleagues to really help us navigate what can be very difficult situations with patients. So there we go. So I was asked to talk about non-hormonal management of menopause symptoms, particularly in the cancer area. This is an area I work a lot in. I work a lot with Bayer and I'll be talking a little bit about a non-licensed drug that will be coming along that we've been developing with Bayer. And I'll show you some interesting data on that. Instead of finishing with acknowledgments, I just want to start off with acknowledging the work that Sarah and Noriko have done throughout the last number of years. And we now have an international gynae cancer nursing training scheme, which these two women have been instrumental in developing. And it was launched last year in Korea. And it's been a really important thing, because IGCS is really about an international approach to gynae cancer, irrespective of the level of income of the country. So we have people here from all over the world who experience things that many of us could only dream about that would happen. I had dinner last night with a colleague who had just flown in from Beirut. And we also have patients from sub-Saharan Africa here this week, helping with the cervical cancer work. So we have people from all over the world. So it's really important that we have people who are willing to put so much work into training nurses, as well as doctors. And now, within the IGCS, we're training surgeons, medical oncologists, and radiation oncologists. I'd also like to acknowledge our own nurses who work in the matter, many of whom are here today. And I'd particularly like to thank Caroline, whose husband, Ted, helped us steal some equipment out of the hospitals yesterday. So everything here is about saving money. So anyway, HRT and female-specific cancer. I'm not going to go into the HRT side of things. It's a bit complicated. This is from our paper in The Lancet, which was published last, in March, on International Women's Day, looking at HRT after cancer and the management of menopause after cancer. This is only something that has really come to light over the last number of years. But obviously, a lot of it is focused around breast cancer. You heard a very good, well-managed case there about low-rate, serious ovarian cancer. We would argue that HRT is probably contraindicated in that group of patients, and many are on anti-estrogen therapy now, so they come under the breast cancer group. And really, they can be quite challenging cases. And the case we just heard about was excellently managed. I can go through. I could spend an hour talking about HRT and breast cancer. The bottom line is, really, HRT is still contraindicated after breast cancer and can be used in very rare occasions, particularly maybe triple-negative breast cancer patients who've had bilateral mastectomies after long consultation. And really, when you've really exhausted some of the things we heard about earlier. But we're never going to repeat these old studies, so we're never going to know if modern HRT is safe in breast cancer, because nobody's ever going to do the studies. So I think we are in a position where we have to have alternative methods. And that's particularly important in the breast cancer area, where we're now offering 10 years of anti-endocrine therapy. And 10 years of anti-endocrine therapy for a lady who came in and was identified with a screen-detected breast cancer. She was perfectly well coming into the hospital to have her mammogram. She can have symptoms for 10 years that can be absolutely horrific, that can absolutely destroy your quality of life. And I think that's a really important thing to understand, that listening to these patients and understanding how they were perfectly well coming into a screening program and then feel awful as a result of the treatment is a really difficult situation to be in. And they can be really angry. And I think oftentimes the CNSs and the nurse specialists have to listen to that. I'm just going to talk a little bit about both non-pharmacological and pharmacological approaches to HRT. As we heard, cognitive behavioural therapy has the best level of evidence in the treatment of menopause symptoms. But because it's not sexy, and because it's hard to deliver, and because it's not driven by pharmaceutical companies, it doesn't get the praise it deserves. But actually, cognitive behavioural therapy is a hugely beneficial area for treatment of vasomotor symptoms in the cancer and non-cancer area. And I have to hold my hand up and say the work that's done in the cancer support centres around the country, the voluntary cancer support centres around the country, providing that sort of treatment is huge. I've been to visit many of those cancer support centres. They're absolutely amazing. Hypnosis has some effect, particularly on sleep. And acupuncture may be effective, but there may be a placebo effect. And I'm going to show you some data today. And the thing I would say about menopause is there is a huge placebo effect in all of the treatments. And that's really important. And I think that comes back to the importance of listening to the patient. And that doctor or nurse interaction with the patient is probably just as important as what we do with everything else. So what do we have? We heard earlier we have what I call non-targeted therapies, antidepressants like the SNRI phenlofaxine that you heard about earlier, citalopram, gabapentin and oxybutynin. And gabapentin is a drug that we started to move away from for various reasons. And there are some issues around dependency. And then we have the more targeted therapies that are coming online, fesalimitans, LENK3 receptor antagonists, and then elanzanitans and dual LENK1 receptor antagonists that we're starting to use. And I'll show you some data on those. So do these things work? So these are old studies, all come from the one group in New England. And these just show the impact of these different non-hormonal treatments in the management of vasomotor symptoms, particularly hot flashes. And what you can see, as I said, is that there is a placebo effect of 20% to 30% and you see other than that. And clonidine and fluoxetine really don't beat placebo particularly well. But as you start to see, citalopram, gabapentin, phenlofaxine, and oxybutynin will all on average cause about a 50% reduction in symptoms at four to six weeks. And that's the first point that you have to explain to a lady when you're actually starting on one of these medications, that you will not get rid of all her symptoms. But if you get the correct drug for her, and that can definitely be a juggling effect to find out what's the correct drug, because loads of people are on antidepressants for anxiety or mental health issues. And it really, this is what we're looking at, about a 50% reduction in symptoms at four to six weeks with the associated side effects that you heard earlier. And what's ineffective are these things here that I'm not going to go into in great detail. Really, just giving one tablet is not going to be a benefit in this situation. And this is work that was done by an amazing fellow that we had working with us, Finon Dunhoo, and some of you would have referred patients to Finon's menopause after cancer study. And this is where we actually started to look at, can you integrate different models of care into one package, this multimodal approach to menopause. And what we looked at were self-management of common symptoms by empowering women with knowledge, providing them with an app that had all the information that Professor Casey just spoke about there. Because oftentimes, compared to men, women are really good at actually identifying and managing their own symptoms. Men are useless, okay? They're brute-like. Also, could we address sleep with cognitive behavioural therapy? And then could we look at symptom control with the medications? And also, could you share the problem with an identified partner or friend? Because oftentimes, this has felt to be a very isolating experience. And these were the different interventions. And what we took on board really was trying to look at daytime or nighttime symptoms. We used citalopram for daytime symptoms, and then citalopram and gabapentin for nighttime symptoms. And it was a six-month study. And the outcomes of the study, which were published last year, showed clearly that there was a statistically improvement, a statistically significant improvement in global quality of life, which marked reduction in vasomotor symptoms in both frequency and severity, or how annoying they were. Because one of the things we now learn in menopause is that, really, the number of hot flushes, some women can cope with more hot flushes than others. It's how bothersome they are to the patient is a really much more important measure, rather than just measuring the actual number of flushes. But the real interesting thing that came out of the MAX study was the prevalence of insomnia. So even though insomnia wasn't an entry criteria, 93% of the patients who came into that study had a diagnostic, had a diagnosis of insomnia based on a standard diagnostic criteria, which we didn't even select for. So of the 243 or 44 patients who went on the study, 93% of those had clinical insomnia. And you can imagine, many of you have had children, like sleep deprivation is horrendous. It's the worst form of torture. And all of the things like the cognitive dysfunction that you hear about, most of that is probably related to sleep dysfunction. And what we kind of see now is that as we treat sleep dysfunction in particular, we see significant improvements in cognitive outcomes, particularly that idea of brain fog. So brain fog in the perimetopausal phase is almost identical to baby brain in somebody who's got a six-week baby at home. And many of you can remember that much more so than I can. So what the MAC conclusions were that a multimodal intervention, and that's really what's been delivered in these menopause hubs. It's not just giving the actual, it's not just giving the drug out, it's somebody listening to the patient and it's putting that multimodal thing into play, was really important in both to reduce vasomotor symptoms and insomnia. And then secondly, that digital CBT. So CBT delivered online is effective in treating insomnia and menopause. And this was interesting because this is using an app called Sleepio, which is available and is now the recommended treatment, first-line treatment for insomnia by NICE, but isn't actually available in Ireland yet, but we're still studying it here. So what about these new drugs that are coming on board, the targeted therapies? Well, these are potential game changers. And what they do basically is, as you all remember, the normal of what we call hypothalamus, pituitary, ovarian axis, with estradiol feedback, feeds back to the brain. And they've identified these candy neurons that are quite an interesting group of neurons. And as estrogen declines, these neurons become hypertrophied and hyperactive. And what they do is they activate the thermal regulatory neurons in the brain, which cause the hot flashes. So we now know how the hot flashes can come. And we now have drugs that can inhibit this interaction here and stop this actual signaling pathway, where these overactive candy neurons are activating the thermal regulatory neurons. And we have a number of interesting things that happen to that. The tamoxifen can make this worse. And many of you work in menopause and know the tamoxifen. And of course, aromatase inhibitors can also make it worse by inhibiting the production of estradiol in the periphery. So these candy neurons are a really good target for hot flashes, and they're non-hormonal. And we have two drugs, fezalinitant, which has now been licensed here in Ireland. And fezalinitant has been licensed for use in the non-cancer patients. And just to be clear, the EMA licensing regulation for fezalinitant specifically states it should not be used in patients on tamoxifen, because the interaction studies haven't been done. But what you can see here is that these are the two registration studies using 45 milligrams of fezalinitant, stylite 1 and stylite 2. And you can see the statistically significant reduction in the number of vasomotor symptoms from baseline at 12 weeks. And again, remember what I said earlier? Look at the placebo effect. These were double-blind placebo-controlled studies. Nobody knew who got placebo and who got the active drug. But you're seeing a significant placebo effect, again, because the patients were brought into a clinical trial and listened to. What the NK3 receptor antagonists didn't show was an improvement in sleep. And one of the things that we saw that was a little bit worrying was this increase in liver function tests. So I think there will be an addition to the license to say we have to check liver function on this drug. And there has been a recent study suggesting that there was an increase in skin cancer in some of these patients. But the FDA have suggested that that is probably more likely to chance than to cause. The other drug then is elansanitant, a dual NK1 receptor antagonist made by Bayer that we work on. We've run the studies here in Ireland. And again, similar impact on hot flushes with this placebo effect, but a massive improvement in sleep. And that's probably because of the fact that we're antagonizing two of the receptors rather than one with a different side effect profile and no changes in liver function and no increased risk of skin cancers. This is OASIS-IV, which was open in Ireland and we recruited to. It's closed. This is looking at the same drug in tamoxifen and aromatase inhibitor treated patients. And this study is now closed and will report in about March or April next year. So how do we approach this? There's no one size fits all approach. The key is to take a careful history and to listen to the patient. We kind of look now at more oxybutynin if they're daytime vasomotor symptoms with minimal anxiety. If there's an anxiety component that we think is plus or minus depressive features and they're not on antidepressants, we can consider citalopram or phenolfaxine. If they're predominantly nighttime symptoms, we may consider gabapentin, but remember that's at 900 milligrams at nighttime. That's a lot of gabapentin. And obviously with insomnia, we look now at sleep. You've got to consider potential for drug-drug interactions, particularly with endocrine therapy, particularly with the newer anti-endocrine therapies, the CDK4-6 inhibitors. And then the management of expectations is the most important thing about all this. Expect a 50 to 60% reduction by four to six weeks. If the drug's not working at that point, it's unlikely to work and you may have to change it. And remember, most of these patients have a massive fear of occurrence and that's actually what's driving a lot of that anxiety. And unless that's addressed and with appropriate counselling, it's really going to be important. And I think the upcoming NK therapies will be really interesting in this population. This is a plug for the Sleepio after cancer study, which is there's about 30 spaces left. If you're seeing patients with cancer and they've got sleep disturbance, we're more than happy for them to be referred. And just to thank all the people who work in our own group, in the survivorship research group in UCD, and all our funders. Thank you. Thanks Donal. Just before we get to the questions and answers, there's seats up towards the front. If anyone at the back would like to grab a chair, you're very welcome to. There's two microphones on the floor, so if you did have a question, now is your chance to ask the experts. If you just want to pop up to a microphone, just introduce yourself and ask a question. I might go first and say, Dr Casey, what is your approach for pre-menopausal women who are diagnosed with endometrial cancer? So we're seeing more and more endometrial cancer. It's the biggest group that we look after in gynae oncology. We're also seeing more pre-menopausal women develop it. And for, say, the most common type, grade one, early stage endometrial cancer, who've undergone a hysterectomy, what's your approach to managing any menopausal symptoms they have? In the past, we would have said that it was contraindicated. But from the studies that we've had, and the more recent studies particularly, in the low grade, then it is feasible to use HRT with progesterone. So the combined, like most of these women would have had a hysterectomy and BSO, and normally you would use estrogen only in those patients. But with either endometriosis or fibroids or history of endometriosis, or if they still have fibroids, or the endometrial CA, we would use combined treatment. Hi, I'm Hilary Maxwell. I'm Chair of the British Gynaecological Cancer Nursing Forum and a gynae oncology clinical nurse specialist. A bit of a controversial one, obviously. Do you think with the million women study, that in terms of the potential disservice that we've done to women by not giving them HRT for a long time, there could be a class action? That's for me, I presume, is it? Sadly. I think, well, I'm not sure about the class action, it wouldn't surprise me down the road. But I do think we have done women a big disservice. I think because with the WHI and million women study come out, before it was even properly published, the media got hold of it. And they portrayed it as percentage increase in risk, rather than absolute risk, which is much smaller. So women were petrified. And I'm sure you know, dealing with menopause patients, the struggle we had trying to get women to look after themselves, and apart from the holistic approach, trying to take the HRT. So yes, there's going to be, or I'm sure there is, a bigger increase, certainly in osteoporosis, and possibly cardiovascular disease. So it wouldn't surprise me. I hope it doesn't happen, but it wouldn't surprise me. Very interesting. May I ask another tiny little question? I hate to tell you, maybe you again. Okay. On testosterone, I find that our gynecologists are very reluctant to consider any testosterone. What are your thoughts? I mean, they kind of block it. Okay, I think that slightly concerns me that we're not perhaps having a full conversation with women in relation to that. Yeah, that's the most important thing. And I think many women will come into our clinic, be it a general gyne clinic dealing with menopause patients or our complex clinic, whose friends have been started on testosterone and feel much better on it. So I start by stressing the fact that it's not licensed for women and that it's the only evidence that we have is for libido. I think it's very important that we go through their sexual health with them and deal with it, as you mentioned earlier, to look, often there are other causes as well. And it's not the panacea for everything. You're not going to turn into an infomaniac by taking your testosterone. So there are many, often you do, you know, lucky if you do. Yeah, exactly. There are many other issues going on. So I think that's important. I do think it has a role, absolutely. And I think if it was the men that were suffering, there would be a licensed product as there is for them and not for women. We had one and it was taken off the market. We have one that we get from, that Androfem is in Australia, but it's hard to get and it's expensive. So we use the male testosterone. But I do think it is a, it has certainly a role to play in the management of the women, absolutely. So it might suit those women, say like endometriosis patients, just for example, on Tiballone and things like that, if you're trying to dampen. Well, Tiballone certainly has a help, absolutely. The difficulty is most women now will come looking for the transdermal because their friends are on it or they feel it's better. So, you know. Is that because they're sourcing it privately? Yes, absolutely. Yeah. Yeah. Yeah. Okay. Lovely. Thank you. So I've hugged the floor enough. Thank you very much. Has anybody got any more questions before we finish? I might just ask Aisling a question. Do you have a standardised tool in your clinic, Aisling, for assessing menopausal symptoms? I suppose we just, I was taught by Dr Casey. So we just go from the top and like you were speaking about just getting a really, really good history with each lady who comes in. And 40% of our patients who come to who are referred are from a cancer background. But obviously we see ladies with like clots, strokes, cardiac, or just a really, really complex history. So it's about, I suppose, first off is finding out their own personal history and then their family history and then lifestyle diet and exercise is just a huge one and we would have a lot of women who come in and I think it's both different women have different different symptoms but I think across the board they all would will say weight gain and libido every woman and someone have the flushes some won't they all will and I think sometimes they come and think oh I you know I want HRT and this is going to change my life and it's as was really as was educating and and discussing that it's not as our case said the panacea for everything it may help motivation and that but it's not it's not for everything so so sorry your question was have we so we you we have a little yeah in Nina we do have a little referral that we post out around a little checklist before they come into us so we have all the information got in their notes before we see them to see kind of where they're coming from can I just I am there's going to be 1 billion women in a peri or postmenopausal age group by 2025 now that statistic came out a number of years ago and we all thought 2025 was years away it's next year it's frightening so we really need to empower the women with accurate up-to-date evidence-based information and I think expectations as Donald said is huge we need to manage their expectations but and we need to have a holistic approach HRT isn't the answer for everybody it's not the panacea it is very much a holistic approach could I ask a question of Ashley and dr. Casey Ashley and you mentioned at the beginning of your talk there were six clinics nationally and are there waiting lists and is it difficult for women to get into clinics and is it second question is our oncologists referring appropriately and on time so I can only speak from Limerick and we have a great working I've I worked in in cancer services in Limerick for about eight or nine years so there are a lot of their professional relationships are already there so I can from Limerick I would say yes they are being referred and like I said 40% are from a cancer background and 30% are actually breast cancer and not so many gyne cancers actually I think they're being managed by their you know by their their own clinicians so the waiting list we are just about on top of ours at the moment in Nina but the minute we you know there's holidays or anything like that and we're struggling and we have to put on extra clinics to keep our head above water in terms of that so most will be graded as a semi-urgent and we see them within about 12 weeks so we're about there at the moment yeah the people who are urgent would be the POIs the premature ovarian insufficiency so the lady's under 40 if most most other people are the three month and then sometimes what we find out from the Limerick referrals is the oncologist or the the breast surgeon has already started something so they might have started develop vaccine or you know or it might be the oxybutyn or whatever so when we see that we leave them a little bit longer because everything needs a little bit of time to work so sometimes they might be vetted as routine so that at least then when they come to us they've said look I've given this four or five months I feel great or I don't thank you very much and that's all we have time now oh do we have one more okay apologies hi my name is Kathy Adams I'm actually despite my accent from Australia my questions for Janelle and we had a really interesting presentation a couple of years ago from the Cancer Nurses Society of Australia from a trans man who had ovarian cancer and I'm just wondering if you do anything different for the LGBTQI community and with your sexuality and survivorship and that whole gender diversity that we're seeing thank you for that question and certainly yes you know I think as you guys have heard with a lot of these issues I think individualized care is so important you know when it comes to menopause symptoms and certainly somebody is sexual health and sexual health problems no single patient we see is the same and so having that dedicated time to really individualize what are the issues you know so it's it's inherent in our clinic model and I think even more important you know for for folks coming from those different backgrounds but absolutely you know and that is you know kind of part of our model is how individualized that care is and certainly for that group as well as others you know sexuality as many know incredibly incredibly diverse right it's an incredibly individualized and personal issue and so you know the dedicated time is crucial to figuring out what are the problems and we do a lot of goal-setting so you know every session with patients you know we talk about what are your top three goals because when I hear a story I may be formulating different goals than what's important to the patient right I may say you know we need to fix the vaginal dryness we need to fix the pain we need to fix this and actually you know their top goal may be I want to communicate with my partner better about this and so goal-setting incredibly important and then we prioritize tackling those issues from their personal number one goal and down and so you know that time it takes to identify I think is one of the more important things we do and then many of our you know comprehensive review systems and some of the validated measures that we do also can help objectively measure those things as well yeah thank you so much thank you all for your presentations and fantastic hi I'm Pam I work in st. James's Hospital I have a question about HRT in relation to the government introducing free HRT from January next year and supply I'm concerned about the supply the supply is horrendous at the moment yeah absolutely and you know particularly the smaller patches and they're sourcing a very large German based patch at the moment which it's amazing I mean you think patches patch but it's not there's a different matrix there's a lot of skin issues with it poor absorption falling off crinkling because it's so big etc so many of those we would change over to gel or a spray at the time but yes it is going to be a huge issue absolutely huge and I think unless the pharmaceutical companies can come on top of it now we're going to run into huge difficulties next year when they start doing the free HRT do you think the HP or a would have any input in relation to the new patches that are being manufactured by the pharma companies I'm not sure to be honest and we're we're advocating all the time and we're advocating for rapid kind of clearance of stuff but it seems to get us nowhere you know and again and I don't mean to sound sexist but I think it was a male issue and it would be solved a lot longer sorry don't know slightly outnumbered there well we are here men on anti-aging therapy horrendous yes yeah just to be I'm not trying to be flippant but no no yeah it's completely under yeah under recognized like there is a huge problem with men huge yeah yeah and all they're offered is clonidine and it doesn't work yeah and I personal experience of this and it was horrendous when you have two people in a bed going through menopausal symptoms at the same time it's very difficult I'll tell you but anyway we won't go there but thank you yes I agree with you yeah thank you okay thank you so much folks and you'll be delighted to know there's some tea and coffee outside you might get an opportunity if you didn't feel like answer and asking a question to ask the speakers so enjoy the coffee and we're back I think at 1020 okay because it's just it's hard to like anywhere I've been there I know that some of the centers in the UK are using it so I wasn't quite sure yeah yeah and what about your new one come when do you think that's going to be out Oh great thanks a million thank you you too thank you yeah exactly oh yeah Jesus I'm gonna take one I don't yes yes you want to get that behind yeah just need it for work oh yeah thank you I'm sure it's eyes open yeah oh yeah no really good yeah yeah you need a whole different you need a whole appointment yeah you do yeah yeah I'm surviving so I shouldn't be looking at trivial things as they think yeah but also the fear like I used to find this with the sensual dysfunction or they'll give them something else yeah exactly yeah you know it's the worst I see vaginally or the breast cancer patients yeah yeah yeah to try to prevent it because once it's gotten there and we can't use the jury's out on that there's a German study that suggested maybe but everybody no I don't think everybody has gone against I think there was a German study yeah yeah so I will do moisturizers yeah first yeah I would say at least half of the patients if they don't have severe yeah and if not and I go to their breast oncologist okay say hey yeah one of my trainees and I are actually doing a survey study on their comfort with okay okay yeah it'll be out probably we're doing this study kind of early January so maybe about a year and a half okay we look at that data and see what people are doing because I think you know people just say oh they can't have it with a really critical pleasure yeah yeah is that you okay for you I don't know how to make this bigger okay I can put it on the computer monitor as well figure out how to make I can't can we just trying to figure out the notes I can call someone up to okay so that's not gonna control that that's only gonna oh because it's got it from inside where I have the presentations but would I have to move their presentation myself yeah so if you just press at the same time that or sorry down and that one okay so I'm gonna have to do both right yeah I can only control the notes from I see I see you can have it I guess let me just see okay yeah I think this is good the only thing I'm gonna put scroll down this one okay so I'll just move this one I'll move this one and well we'll be here so I can leave it open for if you like yeah we'll see you at another point today I said I'm like if Chrissy would just be like okay okay so I'm glad we figured this out thank you so no problem at all sorry the computer's just having a moment you're here if you have a second could you just come to Wicklow one first I want to break on the computers frozen but I can't just reboot it the mouse on the laptop is frozen and I can't shut down the computer to restart it one of our laptops in the room okay slide down in order to turn it off yeah well I'm gonna watch the recording you're fine you're fine like I'm not gonna judge you yeah you're gonna do amazing email oh you're okay yeah Oh so it's just it just rotates out bigger but you continue to stay so y'all were rotating office past chairs like Rico comes up to me today and is like do you need something printed right now yeah computers not working right now email them just like Ashley is our person that she's always keeping us together I just reported it's just not in a yeah it's just the terms rotate it's like the note section I just put some last-minute you want any tea or coffee? tea or coffee? yes tea? I will go with this thank you you are so nice you guys got enough on your plate right now Well, I'm sorry, I'm not an adult person yet. Have a great summer. Yeah, because she's not, she's not, she's not, yeah, I'll be up in a sec, sorry, I'm sorry, yeah, I'll be up in a sec, sorry, yeah, so she needs, yeah, that's, yeah, but because we always connect it, extend it, you have to go in and tell it to do a presenter view, so when you go from beginning, it opens up full screen, so you actually have to go in and say, I don't want to see full screen, I want, it's yourself, is it? I want to see, no, it's not a problem, no, no, no, it's not a problem, that's fine, and then you just tell it to do a presenter view, so obviously this will be just so you can see your slides, but then you'll need to advance this, so the projector will change, that okay? No problem. I can close it now, right, because I'm the last one, okay, great, thank you, I have a lot of notes, and I cannot see them here, they said I can maybe read it from here, and just hold the two things at once, I don't know, yeah, I can barely see this, yes, they had some issues, but they were able to download here, so I'm just going to have to around to do all that, so it's just there, thank you so much, I really appreciate it. Thank you for watching. I don't know why I can't hold them right, I've got to hold them in. Marko, they're supposed to be here, I'll say to Marko. Yeah, no, we took one of the clips out and put them out, Tiffany had to put one of the clips out, and it wasn't quite as good as we thought it would be, but we didn't want to damage anything, so we put one of the clips out, and Dave has just come in again and put one of the clips out. Okay, I'll go to Marko and just say... Why is everyone here now? Because Marko said anything that doesn't have to do with facing the gods, it's got to do with what we've booked, and how much they're willing to pay. Because I can't do this without Tiffany, for example. Well, if we saw... So that we actually booked it. Yeah, yeah, yeah. Okay, and do tell them that Dave has called in again, and we are waiting for somebody to come, but maybe it's going to sound quite terrible. It's just so frustrating. Just let me let Marko know... Here we go now. So, shall we store something? Yeah. I'm just going to... It's okay, hold on a second. Because normally we have one of those. Oh, yeah. Normally we have one of those. Yeah, yeah. So we were going to keep some of them here, maybe? Let me get... When would be the next break after that? Because I've got it for a different room as well. You just need a full one of those. No, I got this for a different room as well, so I can't leave everything out. I'm going to refresh it. We can walk to the store, because they haven't been in there yet, so that's done. So it's this room here. Which other room have you to bring them to? I need to take them to the boardroom tomorrow. Okay, I will let... I need to get up tomorrow. Yeah, well, why don't we put these out, and when the rain starts again... I don't like that. I don't have a programme like that. There isn't. That's it. So that's still all we have. And apparently they're not happy with this one. So at least they can just all get it and bring it in, because they're nearly all in it now. But apparently there was coffee in level one. Yes. And then people found out there was a bit of a failure down here as well, so... Anyway... What you have is what I have. Can you double-check with Marco and just let him know? Yes. I mean, the most important thing is that it's changed for the next session. Yeah. Okay. Okay. Yes. So, yeah. Okay. So I would say that's... At least it's done for the next session. Thank you. Thank you for watching! Thank you for watching! Hi, all. We're going to get started again in just a few minutes. Thank you. Beautiful. I'm Geraldine, one of the speakers now. How are you? I'm Noriko. First time in Ireland? I'm speaking on immunotherapies. Oh. Yeah. Thank you so much. Not at all. Not at all. Thank you very much. I'm so nervous. What did you do? I cannot speak English well. No. What did you do your PhD in? PhD? I'm going to talk about the grace of death. Okay. Speaking in this session, do you need to sit at the table? Yes. Right. Thank you. No bother. I'm in palliative care now. Oh, very good. Excellent. I'm an oncology, hematology, clinical nurse specialist. It's acute oncology, so it's patients that are on treatment that have toxicity. We try to keep them out of the hospital. I used to work for the bioclean room with a leukemia patient. Okay. Excellent. Hello there. I'm Geraldine. I'm another one of the speakers I had to ask to. Aoife. Aoife, how are you doing? The genetic cancer. So when did you arrive? Was it just yesterday? Yes. Jet lag? Jet lag. But I already adjusted. Okay. And how long were you here till? Twelve from Tokyo to Toronto. Toronto landed for four hours. And then I came here for seven hours totally, whole day. Oh, wow. And when do you return back home? Saturday. Saturday. Okay. Very quick turnaround. Will you get to do any touring at all? No. No. I'm an IGCS president. Yes. A lot of work over the next four days. Oh, very good. I'm not kidding. Okay, so... I heard about you. You have given presentations, two kinds of presentations, nursing symposium and the patient advocate. No, I'm not doing the... One of our oncologists is doing the other session this afternoon, yeah. But somebody did say there was somebody, another genetic counselor, but I'm not sure, maybe that's... Who's doing the patient advocacy bit. Yeah. Not sure. No, but I feel bad because I didn't... I don't know, I haven't looked at all the rest of the program, so... We are lucky to have you in this symposium. Thank you. Teas and coffees have just arrived. So they're giving another ten minutes. Okay. I'm going to say hi, though, because I'm pretty sure I've emailed you before, and probably asked you for something. Nice to meet you. Yes. Yeah. Well, nice to put a face and a name. So many people, especially with COVID, I feel like I know people's names, but I never met them. James's, yeah. Yeah. Somebody said there was another genetic counselor, so I don't know if there's somebody from Crumlin speaking later or at a different session. There we go. Okay. Perfect. I was wondering. Yeah, yeah, yeah. Okay. That makes sense. That makes sense. Are you guys okay? Yeah, I'm good. Thanks a million. Okay. Misresolved. That's not me. That's the patient one as well. I think your area and your area is increasing. Emerging. Expand quickly. So how can I manage that information? A lot of information. It's because, see, I'm immunotherapist. I'm doing toxicity. Yeah, yeah. It's going to be, because it's not just the immediate for chemo. Like you said, six weeks post, you're fine with immunotherapies. It can be up to a year. Plus it can be life-altering, so if you get endocrinopathy, and you've got doublets, you've got patients that will get double immunotherapy, they have immunotherapy and radiotherapy, immunotherapy and chemo. So patients, the big thing is education to make sure they're aware because patients just feel, oh, it's a type of therapy, it's less, and whereas chemotherapy, I would reiterate to my patients so much, you know, anything at all you need to let us know because the symptoms are so sparse and they're so, like, you know, fatigued. And somebody's like, oh sure, I've got cancer, of course I'm going to be tired. But it could be adrenal insufficiency. So it's educating them and to make them aware that even if their treatment is finished, the guy needs what the pen go, and they're on the pen go for a year. But it can be a year after that they'll experience, so they're going to end up having late clinics and I don't know how they're going to manage it because, you know, patients are so educated now and they'll say, I want this therapy. You know, so it's a difficult area, and it's the same with genetic cancer. Yeah, and we, I'm just saying, I know so little, I'm looking forward to your talk because I know so little about immunotherapy other than, like, you know, mismatched repair deficient cancer is then, yeah. And I have people who will tell me, like, yeah, I'm on that and like, but I know very little. It is because, like, you know, even educating our medical colleagues because, you know, patients go to the GP like my case study today and the GP, you know, thought, oh, she's just tired you know, she's a little bit run down or whatever and it wasn't, it was two immunotherapy toxicities that the patient had, so and I would work quite closely with casualty because in Leicester County we don't have a designated space, we will hopefully in time, but a lot of our patients come in 3D and I suppose ED, we'll be looking at somebody that's, you know, nausea, fatigue, you know, reduced appetite and they'll be going oh, should I find, sort it out with your oncologist when you're back at your next visit whereas, you know, yeah. Urgent intervention, yeah, yeah. Okay. But it's great that patients have the choice. It's just to make them aware that it's, you know, to make them aware there is so many side effects but risk versus benefit, I suppose, that's the way to look at it, so. Like everything, isn't it? It's nearly the moral of the story. Correct. Have you been in Ireland before? Yes, last year. Last year, that's right. OK. The tour of IGCS board member tour for here, they decided to host it. OK. But were you in Korea last year as well then? You launched the, what did you launch in Korea last year then? Last year? Yes. Last year here. Here, OK. And I was surprised how beautiful. Ireland. Yeah. Beautiful and nature and a lot of pub. A lot of pub. I love pub. And Guinness. Have you been to the Guinness storehouse? Yes, last year. OK. Are you Dublin or where are you originally from? I'm originally from Carlo. Carlo, sorry. I'm sucking the lozenge because I've got a tooth issue and I'm like, don't let the tooth issue bother me during this. I'm from Carlo originally but I was in Cambridge in the UK for 12 years. OK. I don't think I lost my accent though. But yeah, I've just been back at James since 2019. OK. So, yeah, living in England. Have you ever been to Japan? Yeah, all over actually because I used to be a scientist. So, I went to a couple of conferences in, we actually went to Sapporo first and then Kyoto and Tokyo. It's amazing. Very beautiful as well. It's on my list but not yet. It's lovely. Maybe next year. There's a plan maybe for April next year. It's a long flight. That was my one thing. I was like, oh, God, I don't like flying. And I was like, this is really long. Longer than anything before. Especially you cannot fly over Russia. Yeah, you get a sense for how massive Russia is. It takes a long, long time. Yeah. What part are you from? Tokyo. From Tokyo. I'll be honest, I was overwhelmed by Tokyo. Myself and my friend couldn't find our way out of the train station. Are you serious? We were so confused. We were just like, this is so massive and so many people. And somebody took pity on us and helped us to the exit. But I was like, that's a bad sign that we couldn't get out of the train station. But it was amazing. Really amazing. Yeah. My hometown is western part of Japan. Very close to Osaka, Kyoto. I used to work in Kyoto, Osaka, Kobe, Kyoto Prefecture. And then I moved to Tokyo as a nurse. So my career started in Tokyo. In Tokyo, wow. It took a long, long time for that. So how long have you been in Tokyo then? 2005. 20 years. 20 years, yes. It's hard to remember a time when you weren't there. When it gets to that level. How do you find James as compared to Cambridge? Different. Yes. It was definitely a bit of a shock. I knew it would be. And there was no jobs for genetic counsellors when I came back. So I left a permanent job there to do a temporary position here. And I wasn't sure what would happen. But then thankfully, genetic counsellors have started to be more common. And there's more jobs. But yeah, I do miss Cambridge. We were there for a long time. My first son was born there. Every now and then I get a bit of a, like, oh. Because it's very different. I live in North Kildare. And the commuting here really bothers me. It would be nice to be able to cycle and stuff like that. But anyway. You're not from Letcher Kenny? No, no, I'm from Galway originally. But I live up in North West. So it's about another hour above Letcher Kenny. So I have a two-hour commute every week. Okay. Oh my God. Okay, I'll stop. I won't give everyone my commute then. And I have to go back up to Donegal this afternoon because I'm working in the morning. Oh my God. Okay. I live up in Donegal. So it's the North West. So it's about four hours from here. I'm on duty working tomorrow morning. But where I live and where I work, it's an hour each way. So I'll be up at six and on the road at seven tomorrow morning. So are you near the coast then? I'm right on the Inisioin Peninsula. So Mallin Hedge is only half an hour from where I am. So yeah, we're right up the top. Okay. Well, you're getting the scenery then. It makes it all worth it, right? Lovely beaches and sea swimming and that. My sister-in-law is from Gweidor. And every chance they get, they're Dublin based. But yeah, they're gone. They're never there at the weekends. And that makes sense. Yeah, I know. It's beautiful up there. We are lucky with all the beaches and everything up there. Definitely. See, I know. My village is lovely. You've never been up that far? No, I've been to Letterkenny already. But I've never been... Oh, wait though. I think I might have gone to Mallin when I was a child. I just remember thinking that was a long journey. It is. Some people used to say, are we there yet? Are we there yet? Yeah. When you go to Drurygoal, that's what it feels like. But no, like that, I'm not going to lose my Galway accent. What part of Galway? Just my village. If you blink and visit Williamstown, it's Galway West Common Border. Okay. It's about 40 miles from Galway City and 20 miles from West Common Town. Okay. It's tiny. Yeah, my geography is terrible. So, Tuam, about 20 miles from Tuam. Okay. And the way I would describe it is, you've heard of Castlereagh with the prisoners. You've heard of the song Four Roads to Glenomaddy. I'm halfway between the prison and the four roads. Okay, okay. Still doesn't make you any more... Hello, everyone. Yeah, Tuam is about 20 miles. Nope. Okay, okay. And then Galway City is 40 miles. It's like 30. Well, I've probably heard... Like, often people say... Hello, everyone. Welcome back. I'm going to give a few more minutes for everyone else to come settle in before we get started with our next sessions. Thank you so much. You're so good. We sent her outside to get coffee. Good service. And they... I see people are finding some Karen alright. Yeah. Chris came back this year a few years, and Lucas was the... He used to come to me. Now Karen has stepped down. Okay. So... Um... Long time. Okay. She's brilliant, though. Everybody still refers to her. Yeah. I find her... It's an unfortunate situation, but she's very good for, like, sometimes when people are referred to us, like, our waiting list is long, but we do have urgent and ASAP slots. She's very good for, like, linking up people where, like, the front desk is not good, and it's... Is this off again? Welcome back, everyone. It was so nice to get to know so many of you during that break, but we have to get back to the matter at hand, what everyone came here for. Before we start our next presentations, Fiona would like to share some exciting news about a project. Fiona? Thanks so much, Kirstie. Yes, we're delighted to announce that we have commenced five Ghani passports for patients. We've just completed the ovarian one. I was hoping there might be a little slide up that you could all see it. This is in draft form, so as they say in Ireland, there isn't one for everybody in the audience, but we're really, really delighted. We worked with our clinics, our clinicians, our nurses nationally to get this, and I think it's going to be a huge benefit to both patients and to nurses in clinics. So I know a lot of them are here today, so I just want to, from the NCCP, we want to thank them wholeheartedly for all their effort and their free time that they gave to do this, and the benefit that it will have for patients, hopefully that will be the measure we will use. So thank you for that. I won't delay. Sorry. Don't get a picture of my arse. Thanks, Fiona. Excited to see this project roll out. Our next presentation is from Noriko Fujiwara. Noriko completed her PhD last year, focusing on place of death and palliative care. Palliative care is so important to Noriko, so I am excited to hear about her presentation and learn more about her PhD research project. Noriko? Okay. Thank you. Good morning, everyone. My name is Noriko Fujiwara, and I'm a clinical nurse specialist from Japan, and I'm honored to serve as co-chair of IGCS Nursing Group with Chrissy and Melon from Australia. So it's my great pleasure to be here, and thanks to Sarah and Fiona, and I learned great nursing community for this first IGCS Nursing Symposium success. Today I'm going to tell you about my career path and my PhD research project. My area is expertise in cancer nursing and palliative care and research nursing. I earned my master's degree in nursing in Japan, along with my certification as an advanced practice nurse, CNS, and 10 years after becoming a CNS, I obtained my PhD in medicine, which is based on the research that I present to you today. In Japan, there are still very few nursing educators who specialize in clinical research or clinical research nursing. This is one of the reasons why I choose to pursue my doctoral studies in a different field, rather than the traditional nursing PhD in Japan. I wanted to expand my understanding of clinical research more broadly, and moreover, I'm varied on factors for finding a learning environment that encourage growth as a healthcare professional and having mentors who I deeply respect. These elements have greatly influenced my academic and professional journey, and now I'd like to share with you the findings from my doctoral research. And our study is titled Determinants of Place of Death in a Large-Scale Cohort Study in Japan, utilizing data from the Japan Public Health Center-based cohort study, JPHC study. This study aimed to uncover the factors that influence where individuals spend their final moment in their lives, a topic of significant importance in the context of Japan's aging population. So let's look at the situation in some countries around the world. According to data from United Nations, people aged 65 and older account for 29 percent of the total national population in Japan, making it one of the most aged societies. I checked some update yesterday in World Bank data about population ages 65 and above. The highest aged society is Monaco, 36 percent, and Japan's 30 percent were increasing, and the third, 24 percent, Italy and Finland, and Ireland in 2023, 15 percent. And with the global aging population, understanding factors that influence where people die in becoming increasingly important, not only in Japan but around the world. With the increase in elderly populations, the demand for appropriate end-of-life care has become more pronounced. Where a person die, whether at home, in a hospital, or in another facility, has profound implications for their quality of life and their well-being of their families. Despite its importance, there is limited understanding of what determines the price of death in Japan. This study looked for fulfilling that gap by exploring these determinants through a large-scale cohort study. So previous research has shown a gap between where patients prefer to die and whether they actually do. In Japan, most studies focus on medical factors such as diseases or symptoms. However, social factors like marital status and lifestyle have not been deeply studied. In our research, we used data from one of Japan's largest cohort study to explore the influence of social and lifestyle factors on the price of death. So let's talk about the method we used. We conducted an exploratory analysis using the data from the JPHC cohort that has 200,000 individuals' data, which includes information on 70,781 deaths. Our focus was on the final price of death categorized into two main settings, hospital and home and other facilities. As you can see, this 86% of all death in Japan occur in hospitals and the most common cause of death in cancer at 42%. We use multivariate logistic regulation model to analyze how various factors such as age, sorry, age, sex, and family structure, lifestyle, and health condition influence the likelihood of dying in each of these settings. So let me share a little bit about what we found from this study. As for age and sex, previous studies have shown that these important predictors of the place of death, but how they interact with other factors is less clear. In our study, we also show no significant related between age and home death, but an employed male was associated with home death. Some reports have shown that the risk factors for solitary death were male unemployed and living alone. Our findings also showed that married and employed men had a high possibility of home death, similar to previous studies. Solitary death is one of the Japanese phenomenon, Japanese phenomenon of people dying alone and sometimes remaining undiscovered for a long period of time. NHK reports that Japan has solitary death 32,000 a year. So since there are decreasing social connections in the aged society, great attention should be paid to solitary death or isolated people. The definition of non-married in this study includes never married, widows, and divorced. The social significance of marriage differ from country to country. In Japan, the marital relationships is still a strong social contract in spite of the increasing recognition of diverse relationship. And the strong association between non-married state and home death was observed among those whose cause of death was cardiovascular, vascular or cerebrovascular disease, or external causes. This often led to sudden death, unlike cancer, especially without bystander support. In such cases, the patient will not be transported to the hospital and will die at home. Our findings suggest the usefulness of further research investigating what services, medical or social, are needed for people with each disease and causes. And significant difference in the group of men of cardiovascular disease and external factors of ratio 4.1 were strongly associated with home death. In contrast, cancer patients were more likely to die in hospitals, possibly due to the more predictable nature of cancer progression and the availability of home-based palliative care. Lastly, we found that men who regularly drink alcohol five or more days a week are more likely to die at home. Further consideration is needed regarding the relationship between these findings and the disease and the other lifestyle, but surprisingly, smoking was not associated with death at home. So how about the previous study in other countries? In Europe, a large-scale analyzing approximately 1 million death records was conducted on the place of death for cancer patients. Using death certificate data from six countries in Europe, the home death rate varied widely from 30% in Norway to 45% in the Netherlands, and married men were more likely to die at home in most countries. Other areas and regions with more hospital bed has lower home death rate. The study highlighted that end-of-life care system in the health care across very greatly across our countries. In the UK, a systematic review and meta-analysis studied from 1980 to 2013 showed that about 80% of patients preferred to die at home, but this wish was less often fulfilled for non-cancer patient. The study suggested that unpredictably in disease progression, especially in non-cancer conditions, made it difficult to align patient wishes with the actual place of death. This highlights the importance of communication through advanced care planning. In Canada and the U.S., home deaths have increased since the 1990s. In Canada, hospital death rates have decreased by half, and men and older people are more likely to die in hospital. In the U.S., studies show that patients dying at home experience better quality of life than those dying in the hospital, particularly in intensive care unit. And Asia. Taiwan is, in Taiwan, a study showed 60% of 670 terminal cancer patients and their families prefer to home death, citing a familiar environment and family presence. And in Japan, studies, many studies have mainly focused on patients receiving home care. The relationship between the patient and the home care providers, such as visiting doctors and nurses, is linked to home death. The research also showed that female caregivers, such as spouse and daughter, play an important role. Key findings is that when the wishes of the patient and family are matched, the possibility of dying at home increases. This study, the first to identify factors related to the place of death in Japan using a large cohort that includes lifestyle information, such as social background and preferences. So overall, the results implied an association between home death and less social involvement due to marital status and occupation, and associations between home death and particular diseases in which it's more difficult to predict the timing of death. Regarding lifestyle factors, there were significantly higher possibility for home death due to frequent drinking habit, but it's unclear whether this is a true association or the result based on the lack of adjustment for confounders. But smoking was not related to home death. So in conclusion, our study highlights that complex factors that influence the place of death in Japan. By understanding these determinants, we can better tailor end-of-life care services to meet the needs and preferences of individuals and their families. It highlights that unmarried men are strongly associated with dying at home and emphasizes the need for improved support system for socially isolated individuals in Japan, allowing them to spend their final moment in their preferred location and enhancing their quality of their life. The insight gained from this study can guide future research and policy making and the development of interventions aimed at improving the quality of end-of-life care in Japan. And this study not only have the potential to improve care in Japan. I hope this would be some clue or tips for other aging society around the world. So thank you for your attention. I hope to talk with you a lot later and please join the IGCS nursing group. Thank you so much. Thank you to Noriko and to our international speakers this morning. I can't imagine how difficult it is to present in a second language so we really do appreciate your efforts. Our next presentation will be on genetic testing by Aoife O'Shaughnessy-Kerwin. Thanks Aoife. Just to say we'll take questions after the third speaker in the same format as this morning. So thank you. Perfect. Oh, this screen doesn't match that screen but that's okay. Right, so as Sarah said my name is Aoife. I'm one of the genetic counsellors at the Cancer Genetic Service in St. James's and might have reached out to some of you over the years to ask for things like DNA storage or maybe some other things. That's usually how people end up hearing about me initially. But I was a scientist before I was a genetic counsellor and started off as a genetic counsellor in the UK so I have a bit of experience from there. But I'm quite conscious that a lot of what I'll talk about now is, you know, very Irish specific and hopefully, you know, useful for people who are working here and need to interact with genetics. Okay, so I've got nothing to disclose. I've stolen this slide from Professor Karen Cadoux who is one of the oncologists who oversees us genetic counsellors at St. James's and really it's to try and kind of, to show in a kind of relatively simple way, the number of different pieces of information that genetic testing can bring to the care of a patient. So I'm gonna try use this. I hope it works. Yeah, so I'll start here on this point in the diagram. A lot of the patients that we see in the cancer genetic surface are people who have already had a diagnosis. So that might be somebody who's had an ovarian cancer and through genetic testing that's done in their direct order space, which I'll talk about in a little bit, they might come to us knowing that they have a genetic alteration. This is being used to kind of guide the therapy that they might have but what we would start to talk to them about is their future risks and what are the implications for their family members when a genetic predisposition is identified. Then another example of somebody that we might see is say somebody who's had a breast cancer where they're currently having treatment and they need to have genetics done because there's a suspicion that there might be a genetic cause and that kind of information then will be used to guide the the surgery that they might have as part of their treatment. It tells us a little bit about what to do now for that patient who has cancer. It helps us to open up a conversation about what might the future risks be for that person although sometimes that's tricky especially for people who have a new diagnosis and when we start to talk about potential future risk from a genetic finding that can be difficult. Family members, so these are the kind of usually the unaffected people that we see. So somebody coming to us who knows that maybe they have a 50% risk of having a genetic predisposition. That's usually the case when it's a parent or a sibling. For those people it's quite different because they don't have a cancer diagnosis but we're talking to them about future risks and also importantly what can we do about that. So they're the different bits and pieces I think that we usually cover. Just a kind of a refresher I suppose about sporadic versus hereditary cancer before I talk about things in a little bit more detail. A majority of cancer is obviously sporadic and occurs by chance or it might be because there is a hormonal or an environmental factor that's contributed to that. The stuff that we deal with mostly is where it's a straightforward hereditary cancer risk. So usually that means there's an alteration in a gene that we know is important to protect us from developing cancer and about five to ten percent of cases of cancer fall into that bracket. The middle group there, the familial group, that's probably there is associated risk there because maybe of multiple genes and the way that genes interplay with the environmental factors. There's probably also stuff that we don't know about yet in terms of a genetic cancer risk and people who fall into that kind of 10 to 20 percent there probably there is an increased risk just looking at their family history and often we can make screening recommendations for people who have a family history but there's not been a definite genetic finding for that family. Okay on this side then I've just put kind of at the cellular level what does sporadic cancer versus hereditary cancer look like. So if you think that everybody has two copies of each of their genes, one comes from mom, one comes from dad. This is just a normal population of cells but suddenly for whatever reason one of those copies of the cancer gene in question is lost. Okay and we need something else to happen then for that second copy to be taken out and for that cell to go on to develop a tumor and a cancer. People who have a hereditary cancer risk are obviously starting at quite a different baseline because in all of that person's cells they have only one working copy of the gene in question usually. So it doesn't take much more then for something to happen where they lose the second copy and a tumor will arise in that person. Okay and again just a slight kind of before I talk about things in a little bit more detail quick refresher on what exactly we're looking at. So most of our genetic material is packaged into these things called chromosomes inside most of our cells. If you were to pull this fella apart you'd see it's made of a code of letters essentially, that's the DNA. When we say gene we usually mean a section of DNA that makes one particular protein in the body and what we do then in the Cancer Genetic Service we're actually looking for mistakes, we call them pathogenic variants, in the genes that we know are associated with hereditary cancer risk. And what we do now which you know is relatively recent actually, is that we'll do a panel of genes which is targeted usually to the type of cancer in question. So if we see somebody with an ovarian cancer we'd probably do an ovarian or a breast and ovarian panel. That means we're looking at maybe 15-16 different genes that we know are linked to those cancers. Okay so there's two main conditions that I'm going to talk to you about, they're the big hereditary predisposition syndromes really. The first of them is hereditary breast and ovarian cancer syndrome and that's associated with the BRCA1 and BRCA2 genes. And most of you've probably heard of those and you'll probably hear a lot more about them as time goes on as well. So on the left I've got a fairly typical representation of a family tree and so you can see there's a lady there who she has a breast cancer at 50 and she's the person who the genetic testing has been done in initially. That lady has a daughter who is at 50% risk of also having an alteration in BRCA2 and so she has had what we call predictive testing to see what her status is and she is positive as well. And then you can see there's a bit of family history up here, these people haven't had testing but their diagnoses will be assumed to be associated with the gene. What's different, a little bit different about this lady I suppose, is that years ago that lady would have had her testing in the genetic service but actually because she was a HER2 negative and a locally advanced patient she had her testing through this system, we call it the direct order system, from the National Cancer Control Program. And you can see here there's a list of people, a list of diagnoses where these individuals are eligible to have BRCA1 and BRCA2 genetic testing and because we know if somebody has an alteration in one of those genes then they can usually have PARP inhibitor therapy as part of their treatment. Okay and this I kind of think of direct order as like the first it's you know I suppose it probably you know is the first example of where it's come outside the genetic service basically in Ireland. So this testing usually is ordered by oncologists or by their teams and this is going to happen more and more because we're moving towards a space where yes oncology but also maybe gynecology nurses will be offering people down the line genetic testing for BRCA1 and BRCA2. So it's kind of coming for everybody I suppose to have a general awareness of what goes on when we do genetic testing. Okay so just to give you an idea of what we might talk about if we keep those two ladies in mind, the lady who came to us first with the breast cancer and the person in whom the alteration was identified and also her daughter who hasn't had a cancer. Some of the things that we would talk to those individuals about are first and foremost what the risks are when a woman has an alteration in the BRCA1 or the BRCA2 gene. And so you can see here there's the the risks broken down by cancer type versus the general population risks for for those cancers. And important for me to say it just now I think that there are there's male risks as well. I haven't displayed those on here but there is a prostate cancer risk of BRCA1 and BRCA2 and a male breast cancer risk as well. So the things that we might talk about to the the first patient that was displayed there and also to her daughter are things like what could we do to manage her risk of developing a new cancer because although she's had a breast cancer she has a risk of another cancer developing. We would also talk to her about for example, and this is the more relevant space for for you guys, having a risk-reducing bilateral salpinga oophorectomy. Because we we always explain to people and we get a lot of questions about this I think why can't I have some sort of screening for my ovaries if I have this increased risk 40% for BRCA1, 20% for BRCA2. You know is there nothing else I can do but unfortunately and this is ultimately what people end up having. And I should say actually there's often in my experience anyway people are very on board with like okay surgical management of that risk is the thing to do and that's fine they'll do that whereas it's kind of the the breast management that's a little bit trickier and for people to decide whether they want extra breast surveillance or if they want to have risk-reducing breast surgery when they have that kind of risk. Okay and then for men there's prostate screening usually important to mention as well that men can pass it on because often you'll have people ask oh I thought that was just something that the women in the family had or that the women in the family could inherit. And then there is some guidance as well on when we would recommend pancreatic surveillance because there is unfortunately a slightly increased pancreatic risk more so with BRCA2. Okay the second condition then that I'm going to talk to you briefly about is Lynch syndrome. So this used to be called hereditary nonpolyposis colorectal cancer and this is really it's a predisposition to multiple cancer types and but colorectal and gynae cancers are the two biggies. So again this is a fairly typical family tree here on this side. This lady was referred to us because she had an endometrial cancer and she was found to have MSH6 loss on IHC. So what that means is that she her tumor had some screening for Lynch syndrome and that's pretty simple. They can take a piece of the tissue, stain it and look for the presence of the Lynch syndrome proteins and MSH6 is one of the Lynch syndrome proteins and that was absent when she had her staining done and that's why she was referred to us. And sure enough she has a family history as well which fits with with the Lynch syndrome picture. I've just put this up here this is from Emma Crosby and her colleagues. It's an algorithm for what to do when there is an endometrial cancer and screening for Lynch syndrome should be done. So you can see there's four different Lynch syndrome proteins and if one of them is missing there's a little bit of extra work needs that needs to be done but if the other three are missing you can basically send that person to genetics for testing to see if they have an alteration or pathogenic variant in the gene that makes that protein. Just on the kind of the the treatment front as well this is relevant because we would refer to to this lady's cancer as mismatch repair deficient because the Lynch syndrome proteins are mismatch repair proteins and immunotherapy which you're going to hear a little bit more about can be used in mismatch repair deficient cancers. Okay so this is very busy I know and it's not up there for you guys to take away all the information that's on it but I really wanted to highlight that in Lynch syndrome there's different risks associated with each of the Lynch syndrome genes. MLH1 and MSH2 are pretty similar, but then they're a little bit different to MSH2 and certainly to PMS2. Again, I've just put the female risk boxes up here, but the male risks are there in the colorectal space and prostate as well, actually, for one of the genes in question. So the gynae risks, as you can see, so for three in them anyway, we're seeing the ovarian risk is probably about 10% and the endometrial cancer risk is around about 40%. It's a little bit different for PMS2. I always say to people, if you're gonna pick a Lynch gene, you should probably pick that one. And the management is a little bit different for PMS2 as well. So typically when I would see somebody in that family that I had put up, the lady who was referred to us initially, actually what I would speak to her about is having regular colonoscopy screening because we recommend two yearly colonoscopies to anybody who has Lynch syndrome. And about aspirin and taking some aspirin because we know that has a protective effect against colorectal cancer and Lynch syndrome, and also about H. pylori screening. We talk to them about risk-reducing gynecological surgery, so hysterectomy and BSO. And one thing to mention, I suppose, and something that gives us, something that we talk to people quite a lot about is if you have a younger woman who is in that space where she needs to think about managing that risk, but she hasn't had her family or is in that phase of the reproductive part of her life, I suppose, that introduces an extra element for those people to manage thinking about timing. And oftentimes, even when we see somebody who's say in their 20s and has a BRCA gene alteration, they're factoring that in already to the fact that at 35, they're gonna need to think about having their ovaries removed. And there's other reproductive aspects then as well. So people who have these genetic alterations have the option, privately at the moment in this country, of having something called, we used to call it PGD, where they can essentially have embryos created and then they can have the embryos that don't have the familial alteration used. Okay, so the last kind of recommendation that we make as standard in Lynch syndrome is that we suggest people have an OGD if there's any family history of gastric cancer. And sometimes we recommend that on the basis of ethnicity. And we'll make other recommendations too for management depending on what exactly is in that person's family history. So it's very kind of tailored. Okay, so just some of the things I wanted to highlight, I guess, thinking about genetic testing, moving kind of into a more accessible and widespread space. And the things that are important to think about when talking to somebody at the pre-test point, what are those kind of major aspects that somebody might need to be aware of and to consider before they would have genetic testing? So we've touched on this already, the implications for the patient themselves. So what does that mean in terms of the treatment that they're having? What does it mean for their future cancer risks and how might they manage those? Implications for relatives is a big one. Often, there's, I think, a little bit of a perception that, oh, hello, no, I can shout. Oh, no, it's back, it's back. So there's a perception, I think, sometimes that people are reluctant maybe to think about genetic testing because it would mean that there's gonna be information that they might need to share with their family members. But actually, I think most people say that's a motivating factor. And we can talk to people about how they share that information with their relatives and we will give a little paragraph as well that can basically be handed out and that person can use to get referred for genetic testing. The final point then is the chance of an uncertain result. So that's a big thing to be cognizant of and I'll speak a little bit more on that. So the outcomes of genetic testing, anytime a test is done, there's three possible outcomes usually. Number one is that you get a positive result. So does the pathogenic variant identified in the gene? You can give that person, as we said, risk management advice, might be helpful for treatment, informs their relatives of their risk. Number two here then is that uncertain result. So VUS stands for variant of uncertain significance. What that means essentially is when the lab reads through that code of letters, that DNA, sometimes they find a difference and they don't know, is that just part of normal variation that you might see between one person and another or is it actually something that messes up the gene and stops it from working? So when that happens, we are left with an uncertain result. We can't use it in risk management or treatment really and we can't offer testing to relatives. What we do suggest is that that person comes back to us in a year or maybe two years and we can review the evidence on that variant and hopefully give them more information as time goes on. Vast majority of variants of uncertain significance end up being classified as benign or harmless. But it is important, and I've just put that message down at the bottom, if you come across in whatever space you're in, the fact that a patient has a variant of uncertain significance, it's always good to seek a little bit of expert input on what that means for that patient. And then finally, the last result outcome is that they would get a negative result. That doesn't mean that there's no genetic influence here. So just like that kind of family history-based risk that I mentioned at the start, we still might make screening recommendations for those people, or we might even make a recommendation that the person see a gynecologist to discuss having a BSO on the basis of their family history. And often we use this algorithm called CANRIS to give us that kind of specific information, insofar as we can get specific with that. Okay, so final thoughts, just to mention a few other things that you might come across in practice. I haven't said anything here about the moderate-risk ovarian genes, which we are seeing more and more. So say, for example, somebody has had direct-order testing or maybe mainstream testing in the future, they might still need to be referred to the Central Genetic Service to have investigation for things like these, the more moderate-risk candidates. And the risk management for these, really, we know about the ovarian risk with them, and it's the same recommendation in terms of a BSO. So that's one thing that you'll definitely see more of, I think. And then the other thing to kind of think about, if you do want to look at this in a little bit more detail, is that you can look at the NCCP's Hereditary Cancer Model of Care for a little bit more information on what this will look like in the future here. Yeah, the big thing with all this, I suppose, and I don't think we get a chance, I don't get a chance to talk about it enough with people, is that there's massive preventative power in identifying these people, being able to offer testing to relatives. It's, of course, everybody's choice whether or not they want to know that they have some genetic risk, but just being able to offer that is a big thing. There is an online referral form for our service at St. James's. Our wait list is long, unfortunately, but we do see patients urgently and as soon as possible, so that's either in one to four weeks or one to 16 weeks, depending on, if that genetic information is important for guiding their treatment. And then just to leave you with a thank you, and also, if you want to share with patients basic information about cancer and genes, myself and one of the genetic counsellors from Crumlin worked on this last year with the Irish Cancer Society. It's just a general leaflet about just giving more background information because it can be tricky. And then these are kind of roughly what we're thinking about in terms of, I guess, red flags that you guys might see or need to look out for. So when would you send somebody for genetic testing? So I'll leave you to have a quick read through those just for endometrial and for ovarian cancer. Okay, thank you very much. Thank you. So thank you very much, Aoife. That was absolutely wonderful. And I'm now very pleased to present a colleague of mine, Geraldine Mullan, and she is going to talk about immunotherapy treatment and toxicities. Thanks very much, Fiona. My name is Geraldine Mullan and I'm an acute hematology oncology clinical nurse specialist based in Letterkenny. And my talk this morning is assessment and management of immunotherapy and associated toxicity. Basically, over the next 10 to 15 minutes, I'll give you an introduction to immunotherapy, how it works, overview of the toxicities, and a case study that I was involved with earlier this year. And then, obviously, there'll be question and answers at the end, if there's any. For those of you, especially myself, I've been in oncology now over 20 years, and I think over the last five to 10 years, the development of immunotherapy has been heralded a new era in oncology. And I suppose, to give you a brief overview, immunotherapy works by stimulating the body's own immune system to target the cancer cells. And I suppose we're, because of all the clinical trials we've had and all the advancements, it's amazing that patients now have a greater array of treatments available to them. And I suppose immunotherapy has heralded a new development for us, both in the adjuvant and in the metastatic setting. And I suppose immunotherapy agents can come under five different categories, immune checkpoint inhibitors, monoclonal antibodies, immune system modulators, adoptive cell therapy, and vaccines. And I suppose if you were to look at the diagram to the right, basically what the immunotherapy do, it's the way I like to describe it, very simple terms, it's like a non-off switch. And basically, where previously the cancer cells basically would deactivate the T cells, immunotherapy switched them on and blocks them. And I suppose for us working in the oncology field, patients that have been started in immunotherapy, the main thing is that we need to do a proper patient assessment before they're started. And I suppose a baseline clinical assessment of our patients, firstly checking their ECOG status, checking their comorbidities, checking the medication list, any presence of autoimmune disease, because these all have an influence. Because immunotherapy basically works on the immune system, we need to know what the patient's pre-morbid conditions are. So I suppose we have a list of baseline bloods that we do in our patients. They are full blood count, renal liver bone profile, we would do a serology screen, which would be HIV, hep B, and C. We do the quantifier and test, we do our baseline hormone profile, and endocrine profile, and then we'd also do TFTs, glucose, amylase. So basically, they're all done in our patients before we would consider an immunotherapy. And I suppose the reason that the toxicities happen is because immunotherapy activates the immune system to basically work against the cancer cells. And the reason the toxicities occur is because the immune system basically attacks itself, resulting in inflammation and dysfunction. And I suppose the way that I look at it, if you see itis on the end of anything, be it encephalitis, gastritis, helitis, you know, it's basically the immune system attacking itself, and that's where we develop a lot of the toxicities. And I suppose because of the advancements that we have, and now we've got doublets, so we've got to have double immunotherapy, we've got immunotherapy and chemotherapy, we've got immunotherapy with radiotherapy, we're going to see more and more toxicities happen. And I suppose if there's one key thing that I'd like you to take away from my talk over the 10, 15 minutes is education, education, education. It's basically making patients aware. And as I said, patients, sometimes when they hear it's immunotherapy, they unfortunately think it's more blasé, they just think chemotherapy is the one to look out for. And as I said, what we found is that immunotherapy is as toxic, if not more toxic. So to make patients aware, make them aware of the side effects that they can have so that they report the system, report their side effects in a timely manner. Because I suppose it's prompt management that we need. And so I suppose, as I said, when doing a baseline assessment, if we're starting out with the on immunotherapy, we would exclude people with pre-existing autoimmune conditions, because there's already a condition there that will also put the patient at risk of attacking itself. And if we introduce an immunotherapy agent on top of that, we could be putting the patient at a life risk. So as I said, education is key for both the patients, for their relatives, and also for our nursing and our medical colleagues. As I said, it's a new area in development, and we're going to see more and more developments as time goes on. And as I said, it's just, I suppose I'm forever keeping myself up to date. There's new agents coming on board the whole time. So it's just imperative that we understand and anticipate that we can keep our patients, because our priority is to keep our patients safe through their treatment. This rediagram here, as I said, if you look from the head to toe, immunotherapy can attack any organ. And as I said, the way that I would look at it is if you start at the top, you could look at anything from encephalitis, myasthenia gravis, Guillain-Barre syndrome, look at the eyes, uveitis, look at your GI tract. It could be esophagitis, gastritis, colitis. Look at your organs. It could be your hepatitis. Look at your necropoties and your adrenal insufficiencies. Look at the skin. So as I said, it's got the potential to attack any organ, and that's what we need to make sure our patients are aware of. Because again, traditionally, patients will think of the main symptoms, be it nausea and vomiting, be it fatigue, be it neutropenia from our chemotherapy agents. So it's to make patients and caregivers and our colleagues aware of the side effects that can occur. I don't have every side effect here, because if I did, you'd have loads and loads of slides. So these are just an array of symptoms that can occur. And again, because of the possibility of any organs, the symptoms can be vast and sometimes can be so miniscule that patients often downplay them and don't realize. If you were to look at the respiratory end, if you think of pneumonitis, it could be shortness of breath, it could be a cough. If you look at the GI tract, it could be nausea, vomiting, colitis, diarrhea, constipation. As I said, if you look at your endocrinopathy, so your adrenal insufficiency, it could be a simple symptom like tiredness and fatigue. If you look at your urinary tract, if you look at your nephritis, it could be decreased urinary output. Again, if you look at the neuro and headache, blurred vision, seizures, neuropathies. So as I said, the symptoms are so vast and you also have to remember that it could be a non-immunotherapy cause that's causing it. So when a patient presents with symptoms or they're describing signs and symptoms, first and foremost, you have to rule out non-immunotherapy causes. So as I said, if it's skin, it's a rash, blistering. So it's just to make sure that the patients... And as I said, unfortunately when we're starting our patients on immunotherapy, when they see all this, they're probably saying, why are you even starting me on this when you know all the side effects? But again, you look at the risks against benefits and immunotherapies heralded a new area. Like when you think of Pembroke, when you think of our gynae and our breast cancers and it's given patients a choice and extended time and a curative rate. So I suppose when the immunotherapy toxicities occur, the prompt thing is early assessment and intervention. The aim in treating immunotherapy toxicities is to suppress the immune system, thus suppressing the body's reaction against itself. As I said, you need to exclude non-immunotherapy causes and you definitely need a multidisciplinary approach. Where I work in Letterkenny, we are very lucky that we've got great colleagues that we can rely on. And then as I said, because we're a tertiary centre, we sometimes link in with the Centre of Excellence in Galway. So you need your dermatologist, you need your endocrinologist, you need your GI, you need your neurospecialties. So sometimes with immunotherapy toxicities, you need a multidisciplinary approach. For us, when we're grading our toxicities, we use the common terminology criteria for advertisements from the US National Cancer Institute and they categorize them on a scale of one to five in ascending order of severity. And as I said, early assessment and recognition is vital. The onset of toxicities, and again, this is where it differs from chemotherapy agents, is it can occur within weeks to months, but it can occur up to a year after completion of treatment. And again, that's for prompt and education and probably reiteration as patients are going on. If you think of a breast cancer patient that's going to be on adrenaline prempro for a year after treatment, and they'll think, oh sure, I finished my chemo, I've had my surgery, I'm just on immunotherapy, and they don't realize that you can have side effects up to a year. So again, it's just making sure that they report any symptoms. And as I said, treatment and management of immunotherapy toxicities is usually via steroids, be it oral IV, steroid spirulinagents, and then supportive measures. And again, this wee diagram here, I suppose, again, it's just prevention, again, at assessment rate, anticipating, so as I said, if there's patients that are at higher risk, detecting the symptoms, and again, the early intervention is key, treating them inappropriately, and then monitoring. Because as I said, some of the immunotherapy toxicities can be lifelong, so it's again, it's to make sure that we're aware. So the case study I wanted to present to you this morning, as I said, I'm an acute hematology and clinical nurse specialist, and basically, we use the UConn scoring tool. So basically, I have a lady, earlier this year, 77-year-old female, she's triple negative breast cancer diagnosed last year. She got treated with near-adjuvant treatment up front with carbitaxel and PEMBR for four cycles, went on then to have AC and PEMBR for four cycles up to February of this year. She went on then to have her surgery, she had a wide local excision and sentinel liver biopsy in March, and she had a complete pathological response to her near-adjuvant treatment. So the plan was to continue on adjuvant PEMBR, and we gave her her 10th cycle on the 11th of April. There was a triage call that I received then as part of my remit on day 14. She'd been complaining of reduced performance status over the preceding two to three weeks, nausea, fatigue, anorexia, and dizzy spells. She initially went to the GP, who prescribed dietary supplements, amended her anti-emetic, but no improvement noted, so she contacted ourselves in the acute oncology hematology service. My concern is three weeks prior to this, this lady was up and about, she was doing things. When she rang me, she was almost bedbound. She couldn't describe it. She just said the fatigue was profound, and she knew there was something wrong. So I decided I would bring her in because the onset was only over the three weeks, and because I knew that PEMBR, with being a new immunotherapy agent, had potential for side effects, I wanted to get her tested. So we brought her into our hospital in Little Kinney to rule out. So basically, I just want to, you probably know this, and apologies if I'm repeating it, but PEMBR is an immunotherapy agent that comes under the classification of an immune checkpoint inhibitor, and it's a PD-L1 inhibitor. So basically, you'll see the diagram, and as I said, the simple way to describe it, it's like a on-off switch. So basically, the immune checkpoint inhibitors work through therapeutic targeting of the checkpoint molecules, the CTL-4, the PD-1, and the PD-L1. They're normally used by healthy cells to promote self-tolerance and inhibit destruction by the autoreactive T-cells. However, tumor cells utilize these proteins to avoid T-cell-mediated reduction. But where PEMBR comes in is they utilize the immune checkpoint inhibitors. They have a greater ability to recognize the tumor cells as foreign entities and promote cell lysis. So PEMBR comes in, and my lady was on PEMBR. When we brought her in, as I said, her early warning score was zero. Vitals were stable in assessment, weak and lethargic, and she was quite pale. So we did a series of bloods. We did a full blood count, renal liver, bone. We added on TFTs and cortisol, requested a chest X-ray just as part of her workup, and because she was complaining of nausea, vomiting, and dizzy spells, we did a CT brain because of her background of breast cancer. So initially, we started her up on IV fluids, gave her IV antibiotics intravenously, and waited for the blood results to come back. Her cortisol level came back at 22.6, which indicated adrenal insufficiency secondary to her immunotherapy. So we got our endocrine colleagues involved, and they advised extra bloods, and they also requested a full panel to include FSH, LH, prolactin, and a repeat cortisol level. So there are guidelines for immunotherapy toxicities. So as per endocrine review, we commenced her on hydrocortisone, 50 milligrams, four times a day for the first two days, and then we switched her to oral, 10 milligrams, eight milligrams in the morning, and then five milligrams at one and at five, and we put her on a PPI just to cover gastritis because of the steroids. Initially, when she came into us, her O2 sats were 97, 98%, but she dropped to 92, 94%, and she ended up having bibasal CREPs, so we ordered a high-resolution CT. Again, because she's on PEMBRO, we were concerned about pneumonitis, so we also requested PFTs as well. So again, this diagram probably will explain it better than I'm going to in the next 30 to 60 seconds, but basically, if you look at your lung tissue, if you break it down into the cells, your alveoli, and you basically look at it, so basically, the PEMBRO basically reactivated T cell. It causes sort of a cytokine embolus, and basically, inflammatory cytokine, so basically, we were concerned that this lady, because of her reduction in O2 sats, was there an issue of pneumonitis going on, and apologies, the diagrams probably didn't transfer too well, but basically, she did have a high-resolution CT thorax, and it did show active inflammation and pneumonitis, so unfortunately, the PEMBRO had caused pneumonitis in this lady. So we then had to refer her to our respiratory colleagues in Latter-Kinney due to the CT findings, and our respiratory colleagues then asked for the protocol for pneumonitis, so we had to give her a stat one milligram per kilogram of prednisolone daily, as per the insulin guidelines, and then basically, we started on 75 milligrams of pred, and we tapered it by five milligrams every three days. Hydrocortisone that she had been on for the adrenal insufficiency had to be held while she was on the prednisolone, and the plan was, once she was down to five milligrams, then we would restart the hydrocortisone for her adrenal insufficiency. Her CT brain that she had done the same day showed no intracranial abnormality. We did do an MRI because of oscillatory tutory, and that revealed a normal study. She remained in hospital for eight days, and symptoms improved with commencement of steroids. Basically we got her referred because of the adrenal insufficiency. She's going to need ongoing follow-up for adrenal insufficiency. Respiratory follow-up, she did get a bronchoscopy done with us because there was also a nodule picked up on the CT that came back okay. Respiratory are also following up and they're going to be following on a two to three monthly basis. Because of the toxicities we've had to stop her Pembro and she was seen by us three to four weeks and she was seen with us again last month. Her symptoms are resolving but as I said immunotherapy doesn't come without a side effects and as I said you know we were lucky that we picked it up but as I said it meant her having to stop her treatment. Thank you very much guys. Thank you Geraldine for your great presentation. Thank you. And it's time for the little bit quick question and answer time. So does anyone have any questions? If I just have one question. When you talk to the patients about bringing their risk down to the population risk, so be that a double mastectomy or BSO, if you don't have somebody who doesn't want to do that how do you manage that? How do you case manage that? So if you have somebody who doesn't want to have risk reducing, we're very, and I know this can be frustrating sometimes for people, we sit on like although we have management guidance and we know what should be done and what can manage that person's risk, I suppose we don't, we still try to be not impartial but like almost you know we want to be patient focused and guided by what the patient wants. We'll usually have maybe multiple conversations around what their concerns are, can we address those maybe and then that you know means that they're willing to take some risk reducing measures. It's often times and I don't know I think this for me feels a little bit different in Ireland than it did in the UK. Most people, most patients say well if that's the guidance and that's what's being recommended then that's something that I need to do because they say well I'm not, I've just learned about this, I'm looking to you guys to tell me what to do here. So I would say it's unusual but if it does happen then there is usually more conversations with the genetic counsellor, probably also conversations with the consultant oncologist as well and just ongoing discussion until they either say this is definitely not for me and we kind of would leave it as is then with the door very much open for them to come back to us or they'll say actually I'm you know I'm ready to consider that now. But yeah there's a small few number of cases I think where people say actually I don't want to do that for sure. Geraldine, excellent, thank you very much indeed. Why do you think we've got to a sense of perception that women think immunotherapy is kind of easy? Do you think it taps into the history of cancer and the dread disease in chemotherapy? Because I have a lot of patients who kind of just will not take the checks, the swag checks that we follow seriously in any shape or form. They don't comply, they don't understand why they need to do it. I appreciate that's an education point but, sorry, but it is quite interesting. They just kind of think well it's like having a smile too. Yeah and it is and I think that's why I would say education is key because we're only learning about it like when you think about the advancements we've made in oncology, haematology in the last 20, 25 years and you know we're still developing it and I'd say if we were to have this conference in another five years there would be further agents and you know patients because traditionally chemotherapy was the forefront and you got your chemotherapy for your gynecological cancer, your breast cancer and that was it and you got the side effects. Immunotherapy, people think it's targeted therapy, sure it's less toxic and it is in certain respects but they need to remember that you know it can affect every organ, there can be lifelong effects or whatever so and I don't know it is a perception that we need to change, we need to make our colleagues aware because you know a lot of our medical nursing colleagues again because immunotherapy is relatively new in the oncology haematology field you know they have to realize that you know and it's because it's the doublets like if you think of malignant melanoma and you give them double ipinevo for the first four cycles you know if you give a lot of our ovarian and a lot of our breast cancer patients you're giving chemotherapy and immunotherapy you're giving two different agents that attack as I call it the system in different ways so it's making patients aware and hopefully over time they will realize okay yes it's given me a better outcome you know I want a curative rate or I want more extension of time if it's in the metastatic setting but it's to make them aware it is an agent and you know I suppose education education education and it stays like this which will be great because hopefully if you go back with a greater sense to your own units and say okay the next conversation and it's reiteration so if my patients are coming in and I suppose the role that I'm in is different I'm trying to keep the patients out of hospital acute haematology oncology is keeping them away from the hospital but it's when you're talking to them and as I said the GP thought he was doing right he thought she was just tired you know and it was like she you've had your chemo you've had your surgery and it wasn't any fault of the GP but it's just to make them aware well actually no this isn't right and she was like three weeks ago I was doing this now I can't do this so there has to be something that's causing it you know and rightly so unfortunately you know her cortisol level and then the pneumonitis so she had two toxicities in that so yeah it slightly worries me the speed at which we're going with all of this because I think a lot of us maybe my perception certainly through the BGCS is that we're not having time to absorb all these new treatments and I think really nurses should lead a dedicated poppy clinic I know that's happening in some places but but especially like immunotherapy you're going to have to have late clinics like you know you can have side effects up to a year some of these side effects can be lifelong so if you end up with endocrinopathies and that you're going to be on medication so you start in one thing and it causes another so it's to make them aware that you know people think oh I finished my treatment six months ago why am I feeling like this so it's to make them aware to get their blood check to check in to ring in you know so I suppose it's reiteration yeah I think we're getting too many patients scattergunned across our week instead of being a concentrated clinic which feels from a clinical governance perspective much safer that's my perception I don't know what other people think but thank you very much indeed Jerry we appreciate it excellent thank you a wonderful discussion but we must move on to our last presentation I am excited to welcome Kasia Baginska-Gruner to the stage to present on nurses well-being so this is relevant to everybody in this room thank you Chrissy so now to end this amazing symposium we are going to talk about all of us our well-being and why that while we provide care to patients we often forget to take care of ourselves I have nothing to have nothing to disclose so let's start with mental health mental health is an essential part of our overall health and it goes beyond being free of mental disorders it is as important as physical health and it is influenced and shaped by various various factors are social economic environmental unfortunately mental health is still associated with a lot of stigmas and it often prevents us from seeking the support that we need that why it is very crucial and important to remember that anyone can receive help they need and with proper treatment and care anyone facing mental health challenges can live a healthy and active life well-being applies to individuals and societies and is influenced by the same factors as mental health it encompasses a quality of life with a sense of purpose so now there is a variety of different wellness and well-being models available to explore this topic this example is developed by that was developed by dr. Bill Hitler in 1976 and he initially focused on the six dimensions of wellness over time this model evolved and now includes eight dimensions of well-being so the most important one is the physical dimension that kind of emphasizes the importance of maintaining a healthy body through physical activity well-balanced diet and sufficient sleep social aspect involves creating a sense of belonging and connection with others occupational dimension reflects our satisfaction and fulfillment derived from our work and our career achievements intellectual well-being highlights the importance of personal growth through learning and our cognitive development emotional well-being focuses on the ability to cut to cope with our life challenges spiritual is about finding purpose and meaning in life whether through religion philosophy or personal reflections financial well-being reflects to feeling secure and in control of our financial situation both in the present and in the future and the last one environmental it addresses creating and maintaining a safe healthy and pleasant place to live all those dimensions overall affect and influence our personal well-being so now why is this so important for us as health care professionals we are predisposed to mental health issues to a combination of our intense job demands and emotional challenges and these are just some most common mental issues that we see burnout stress depression anxiety even suicide for the purpose of this talk I'm going I'm mainly going to talk about burnout this term was coined by German psychologist Herbert Freudenberger in 1970 he worked in New York City and developed in a Greenwich Village and he would regularly put about 10 hours of work into his private clinic after that he would go for his second job he worked at a free st. Mark's free clinic where he provided care to young people and he helped him with everything from physical exams drug abuse and even like dental cavities after about a year of his schedule he basically broke down and he was unable to get up from bed and that's when he started looking at his symptoms and and then in 1974 he published a paper and he called it staff burnout so it basically refers to burnout refers to a place of exhaustion that is kind of a direct result of prolonged stress World Health Organization classified burnout as a syndrome in 2019 even though the awareness of burnout is grown there is still a low general agreement how to measure it and how to diagnose it and it's important to know that burnout doesn't just affect our nursing profession it can affect any profession so burnout present in a variety of different ways and symptoms as we can see we can have poor problem-solving decision-making errors memory loss anger frustration numbness feeling detached feeling isolated we can seek drug and addiction problems and even physical symptoms such as sleep issues GI issues headache and fatigue so the symptoms don't present the same for everyone and recognizing those symptoms is the very first step that we need to take to stop nurses burnout here are some interesting facts there is about 29 million nurses worldwide we represent almost 60% of health professionals and we are the largest occupational group among health care workers the global prevalence of nursing burnout right now is at about 30% and we see a gradual increase every year nurses point staffing and work environments as two main contributors to burnout and just to give you some numbers about 50% of nurses point to staffing 40% to overall work environment what was interesting I saw that 32% of nurses pointed to use of electronic health records saying they're so insufficient training education technological challenges loading times and downtown times burnout is most pronounced in nurses with 10 or fewer years of experience and we mainly leave workforce due to stress burnout and of course retirement the prediction are that there will be of will be short of nurses by 3 million by 2030 so this table is from pulse and nation's nurses survey series of mental health and that was done in 2023 American nurses foundation launched those survey series at the start of COVID-19 pandemic to kind of help gather data and make informed decision on how to best support nurses so as you can see in blue that adds up to 56% of nurses reported some kind of degree of burnout why only 12% say they have no symptoms. Interestingly enough despite those highs level of burnout that we see 49% of nurses indicated they do not need mental health support and about 30% cited lack of time so there is a big discrepancy between the numbers as kind of this leads us to ask the question do we as nurses neglect our self-care are we afraid of judgment or do we simply find it difficult to ask for help. Burnout doesn't just affect ourselves in a personal level it of course affects our commitment to our jobs our performance it affects our patients their safety quality of our care it affects our organization and at the end it affects our global economy it is a very costly costly issue so reducing burnout is a very important factor in employer attention interesting enough there's also a steady increase in the numbers of publications indicating that the issue of burnout among nurses is a growing problem globally so what can we do to kind of help us with our wellness I figure I'll bring some humor to that so the main the main ingredients we have to really recognize the symptom and symptoms and take responsibility we have to then use our resources and practice well-being and make choices and even small choices will add up over time so now how do we do it one way is to just simply disconnect and just kind of practice self-care so if you look at all a dimensions of our well-being on a physical level we can simply engage in regular activity maintain a balance diet and prior to as I sleep on the social level we can foster relationship with our friends or family on the occupational level we can set boundaries and maybe do not answer the phone after hours and don't answer emails and take time off take a holiday go on vacation emotional or actually intellectual we can take classes just simply take a time to read a book put the phone away emotionally we can implement strategies like meditation on a spiritual level we can just seek out whatever gives us purpose and practice mindfulness financially I had to think about it but if we don't spend time on our phone we actually maybe don't buy as many things we also don't we are also cutting or a subscription sometimes we have a lot of subscriptions and we don't use and the last one is the environmental create a nice safe place in the house maybe tech free space kind of safe cozy space that you can feel relaxed and take care of ourself so now the other way is to do it through digital digital wellness and this is something when we use the technology so we can kind of improve our well-being overall there are pretty much apps for everything these days on the physical level we can use apps to help with our you know fitness tracking monitor our activity level for the day counter steps on a social level we can engage in support groups book clubs online forum to connect with people on the occupational level we can use the tools that our work provides us to kind of improve our productivity at work intellectually we can of course participate in webinars learning classes emotionally we can use apps designed to help manage stress anxiety track our moods track our thoughts spiritually explore mindfulness and meditation apps to kind of cultivate our inner peace financially there is a lot of apps and programs that assist us in managing finances and you know they even monitor our subscription and on the environmental level there are a variety of different apps that teach us eco-friendly habits and showcase sustainable products so now despite our best efforts we are not solely responsible for our well-being this is when the health care organization kind of step in and have to do their part this is this is a national plan for health workforce well-being that was created in 2022 in October by National Academy of Medicine they kind of recognize the importance of health workforce burnout and they wanted to improve their well-being overall so this is just seven critical elements the plan itself provides great examples and it's a great resource and a tool for organizations but now what can we do what can organization do for us if we look our a dimension model so on the physical aspect they can simply provide us with a good medical coverage lifestyle programs like gym membership disability insurance on the social level they can offer us mentoring program especially for nurses who are just entering their workforce team social activities employee resources to kind of help us build a relationship inside and outside of our work on the occupational level this one is about them giving us flexibility time off work life balance and most of all recognizing our achievements intellectually they should provide us programs educational seminars you know advanced degrees and allowing us to go on symposium and conferences like this emotionally providing assistance and tools that help us cope with stress provide counseling mental health support spiritually that can be done by creating different groups classes that focuses on mindfulness on the financial level of course besides a great salary they should also offer a time and saving plans educational seminars on how to manage our finances and the last one environmental this is providing a safe and secure work environment safe design safe layout so the covered pandemic has greatly increased awareness of the importance of maintaining workplace well-being and that kind of led to many changes a lot still needs to be done we kind of see there is more focus now on the importance of fostering safe fulfilling workplace culture and employers are starting to invest more and more money to into programs into services and resources that improves our health our wellness this is I think the Sarah she provided me with all those resources this is a vulva resources for all nurses in Ireland so we all have to remember that we should never hesitate to ask for help we should know our resources and take time to practice well-being and it's all about balance and thank you very much thank you Cassie that was a wonderful presentation and a fantastically to wrap up our first IGCS nursing symposium but does anyone have any questions Thank you. Thanks Hilary and a shameless plug for our IGCS Nursing Certificate Program because we have a nurses well-being module as part of that which Chrissie's and Noriko are going to talk about in a moment. So it's my job just to wrap up some housekeeping from the end of the day. Thank you to all of you for joining us and this event would be nothing without the engagement and participation of yourselves and we hope that you've taken lots of key points back to your own workplaces and you've had opportunity to make new connections and collaborations. We do have a lunch break coming up now but a few housekeeping things. The replays of all of the presentations will be available from early next week so if you log on to the IGCS annual meeting all of the detail will be on there. The certificate of attendances will also be circulated next week. I want to thank all of our presenters for sharing their knowledge and experience. We had absolutely brilliant talks this morning and it's so vital for us as nurses to engage in our education so that we can continue to provide the highest quality care and to our patients. I also want to mention the hospital organisations who have sponsored people to attend and release staff from frontline services and again we're really grateful for the opportunity to run a day like this but there's lots of people holding the fort in clinical services today. I also want to thank Noriko, Chrissy and Fiona for co-chairing today's symposium with me and for all they've done around the IGCS education and nurses program. Okay thank you Sarah. I want to all of you join the IGCS nursing certificate program which launched at the last year IGCS annual global meetings. Since it was published last year 191 nurses have enrolled and 39 have completed the course. Chrissy? The program consists of 13 modules that include a range of topics that cover the care of all gynecologic cancers. One of them being the nurses health and well-being and as Sarah mentioned earlier you can listen to our podcast on module 3. We hope you come and take the time to enroll and complete the program to further your education. If you're interested in getting involved with IGCS nursing education please come up to one of us after or reach out to education at igcs.org. I think that's it. Please join us for lunch on level 3. I'm hoping to network with everyone a little bit further.
Video Summary
The first IGCS Nursing Symposium held a series of insightful presentations focusing on a range of topics relevant to nursing in gynecologic oncology. Sarah Belton introduced the event and welcomed international colleagues including Noriko Fujiwara from Japan and Chrissy Donovan from the USA. Fiona Kelly from the NCCP highlighted the sponsorship of the event and the intention to empower nurses through collaboration and knowledge exchange.<br /><br />Highlights of the symposium included various presentations on key topics. Janelle Sobecki discussed the challenges cancer patients face with sexual health after diagnosis and treatment, emphasizing the importance of addressing sexual health routinely in clinical practice to improve patient care. Katherine Casey and Aisling Mulchey presented on managing menopause and HRT, outlining recent updates on risks and benefits and providing case studies.<br /><br />Geraldine Mullan presented on the assessment and management of immunotherapy and associated toxicities, crucial knowledge considering the increasing use of immunotherapy in cancer treatment. Aoife O'Shaughnessy-Kerwin shared insights on genetic testing, crucial for assessing hereditary cancer risk, and discussed the importance of tailored care based on genetic testing outcomes.<br /><br />Noriko Fujiwara's PhD research on determinants of place of death in Japan highlighted the importance of understanding social factors influencing end-of-life care. Kasia Baginska-Gruner concluded with a focus on nurses’ well-being, emphasizing self-care and organizational support to manage burnout.<br /><br />The symposium emphasized the importance of continued education, interdisciplinary collaboration, and the application of emerging research to improve the quality of oncology nursing care. The event encouraged engagement and the exchange of expertise among international nursing professionals.
Keywords
IGCS Nursing Symposium
gynecologic oncology
Sarah Belton
Noriko Fujiwara
Chrissy Donovan
Fiona Kelly
NCCP
Janelle Sobecki
sexual health
Katherine Casey
menopause management
Geraldine Mullan
immunotherapy
Aoife O'Shaughnessy-Kerwin
genetic testing
Contact
education@igcs.org
for assistance.
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