Chapters Transcript Video Surviving Cancer: Now What? happy to be here today to discuss this kind of cmi webinar on surviving cancer. And we're going to mainly focus on pediatric and adolescent cancers and some a pediatric hematologist oncologist. So our goals today um with this. Well first I want to start with I don't have any disclosures, no financial things, nothing that we're going to talk about that we need to disclose. Um These are my are these are the goals and objectives for this um semi activity. So we're going to kind of discuss a little bit about pediatric cancer and a little bit about survivorship trains talk about some of the kind of outcomes that we're seeing in terms of some of our survivors and kind of globally kind of um kind of how that's changed over time and where we're kind of putting a little bit more focus on kind of our survivorship care. We're going to review some of the monitoring guidelines are kind of if a patient comes to us and cancer survivorship kind of what we would do with them. Kind of the resources kind of what the steps are that way. You know, if a patient of yours is coming to see a cancer survivorship team kind of what's in Haledon that visit. And then we're going to finish up a little discussion about the importance of communication between kind of the oncology but definitely the survivorship team and kind of the primary care team and also some other you know consultants and other specialists to just because a lot goes into their care and a lot can be missed in terms of kind of kind of the guidance that we give to our patients and just having that good connection can be really there. And my question said, you know, ask questions throughout this can definitely be very good question and answer discussion based kind of webinar. I'm very kind of informal to begin with, but we'll go through a few different slides, but if there's questions throughout, feel free to ask. So I like to do this lecture or this little kind of webinar in september just because september is childhood cancer awareness month. So good thing is where day two of september. So we have a whole month to kind of think about it. We're going to focus in a little bit on kind of our pediatric and adolescent patients that have cancer and kind of, you know why it's important to kind of think about them during this month. So I like to start off with what is a survivor because a lot of people don't really know what entails with survivor. You know, there's lots of different definitions, different thoughts out there about what is there isn't a survivor. So it is not this show survivor. So even though that show has been on for many, many years, we're not going to talk about that today and it's not the the movie survivor, which I didn't know before kind of developing the stock a few years ago that there's a movie out there called Survivor again, not the focus of today's talk and it's not about the songs of rubber by Destiny's Child and they're good kind of song and a lot of us could have some fun dancing to that. But again, not going to talk about the song today and to finalize that we're not going to talk about the band Survivor. Although I have the Tiger, another really, really good song. What we are going to kind of talk about is um kind of, you know, I'll put up a little general definition, but you can kind of see there that the Institute of Medicine kind of had a report many years ago and they classified a patient as being a survivor as any individual that's gone through, you know, kind of the time of their cancer, cancer diagnosis through kind of the balance of his or her life. So basically like at any point when you were diagnosed with cancer, they would potentially consider you a cancer or a survivor. Some, you know, literature kind of discusses it that survivor is a certain number of years off of therapy or a certain timeframe in terms of no active treatment, maybe more in a kind of surveillance or maintenance kind of phase, but in essence it's kind of with the patient themselves. Things, you know, if they feel that their survivor, I always call them survivor or say that, you know that they're, you know, in a curative state or a surveillance state or maintenance state. So I think that, you know, the nitty gritty in terms of kind of how to exactly classify them. There's a little bit of, you know, kind of wiggle room in terms of, you know, kind of the exact definitions and it is a lot of kind of individual in terms of kind of what the patient feels and how kind of the team training them feels in terms of their kind of survivor ability. So this slide discusses the kind of the number of pediatric or childhood cancer diagnosis that we see. And this way kind of discusses the kind of the top few that we'll see um primarily in pediatrics. And this goes from birth through age 19 majority of patients are either going to have leukemia, which is the number one kind of cancer diagnosis and or the second one is brain tumors. And so that entails a close to about, you know, anywhere from 45 to 50% of all pediatric tumors. You can see the whole host of other tumors in terms of lymphomas, kidney tumors like Wilms tumor neuroblastoma. Um, tons of other kind of tumors. Bone tumors like ewing sarcoma or osteosarcoma. So there's a whole host of different tumors that pediatric patients will get that we see in our clinics. This slide talks about the different kind of in terms of what we've seen since kind of the mid 1970s over time. So you can, you can see in the blue chart, the incidence of pediatric cancer is steadily increasing. So I think the incidents has increased by about .7% over this timeframe. During this time though, you can see the red chart are the red little line, the mortality rate of pediatric cancer has steadily gotten better. And that's because our treatments are better, were diagnosed with cancer a lot sooner, patients are surviving a lot longer. Um, and the therapies themselves worked really, really well for the majority of patients. This slide talks about kind of the differences from the 1970s to the early 2000's approach in terms of um the pediatric cancer survival rates. And this is looking at a five year survival rate for different kind of um, kind of cancer tumors themselves. You can see the highlighted boxes, I showed. So for all cancer sites, you know, from the 60 or from the 70s to the early 2000s, we went from a survivability of about 60% to kind of getting close to that, you know, 80-85% range, which is actually a really good job in terms of how the treatments of time. We're focused and a lot better in terms of treating our patients. And you can see that other two highlighted ones for acute lymphocytic leukemia and for brain and cns tumors which are kind of our number one and two diagnosis and pediatric patients. Whereas the acute leukemia patients have gotten way better survival rates from the 19 seventies, brain tumor patients have gone up as well, but not to the degree of other kind of us. And you can see that there is still a, you know, kind of uh, you know, changes with certain cancer diagnosis that are a little bit harder to treat in terms of the survival rates haven't changed as much as other cancers such as leukemia. Some moments. This is echoed in this slide, which is a little bit more recent data where you can see that the overall survival right for pretty much any pediatric cancer right now is close to 85 When you look at it compared to adult cancers, adult cancers are in the, you know, the 60-65% kind of globally. While some adult cancers have a little bit of a higher survival rate than others. Um, you know, majority of pediatric patients will do pretty well with cancers and that's why we try to look at a lot of these long term effects because more pediatric patients for surviving cancer, more survivors, more potential for kind of long life effects that we have to kind of see and take care of. I put this slide in kind of Put a little couple of little different kind of infographics on here, just because it is the month. So you can see this just talks about kind of how often that we're seeing this. So, you know, 47 Children diagnosed with cancer every day in the United States. So up to about 15,000 new patients each year getting diagnosed with cancer. And then that estimates about one and 285 Children, well before they turn 20 will have had some kind of cancer diagnosis. And so while it might definitely pales in comparison to kind of adult patients, um it's still one of those ones where we're seeing lots and lots of kind of cancer patients. And because the majority of them are still arriving them, we need to know how to take care of them after their cancer diagnosis. So, this kind of infographic talks about kind of the number of survivors ever seen, estimates about 400,000 pediatric cancer survivors in the United States. Some kind of estimates are getting closer to that 450 460,000. And it's steadily climbing each year as we're getting better in terms of surviving cancer. But because of that, we're seeing lots of long term health effects from these kind of patients. And so, you can see this shows one of the studies that talk about about almost a three and fourth chance of having some kind of chronic health condition after surviving cancer. And potentially, You know, close to 40% or a little bit over 40% chance of having some kind of severe disabling or life threatening condition. And we'll talk about this here in a minute about some of the kind of the long term effects that we kind of focus on and kind of watch for. So you can see that, you know, by having better cancer diagnosis and better detection of these cancers and also better treatments of cancers overall. We're seeing lots and lots of cancer survivors over time because this is going up. What we're seeing is kind of a changing in terms of how we're kind of a watching pediatric cancer. So, you know, before our goal with kind of cancer therapy was just cure the cancer, cure it at all costs no matter what give him as much therapy, chemotherapy, surgery, radiation, that's what we need to do. But now that we're seeing that are cancer treatments, especially for certain cancers are really, really good in terms of survivability. We have to look at it at a different angle in terms of their ways to kind of maybe potentially reduce some of the therapies that could have like really long lasting health effects. Or are there better ways to kind of anticipate some of these long lasting effects and minimize them as best we can. So, our goal now is kind of obviously looking at more of these long term effects for most of these patients and obviously by doing that we're having more of these patients, more of these long term effects. We're definitely seeing an increased costs and kind of usage of the health care system and a lot of that's, you know, in the primary care world itself as these patients get older. But it also can kind of um kind of admin to, you know, different sub specially kind of care as well, depending on kind of the long term health effects that each patient has. So that's why we kind of, you know, eyes a pediatric oncologist my area that I really enjoy and kind of like to work with patients and cancer survivorship. And so for the this is for patients obviously that, you know, have definitely completed treatment from a majority of them, although we do see some patients worthy either they're in more of a kind of a maintenance therapy or maybe they've just, you know, kind of almost like a, you know, where they're not on any active kind of therapy, but we're kind of watching them print of surveillance. So there's multiple areas that we can kind of jump in and kind of help in terms of kind of cancer survivorship care. Our goal is to kind of, you know, work with these patients to kind of live with beyond through and beyond their cancer. So sometimes we'll even do, I've done, you know, kind of consults for patients, you know, even during therapy to kind of talk about the idea of cancer survivors are curing what our goals are, but definitely after they're done with their full therapy. That's when we kind of jump in and do a lot of the kind of the teaching and kind of the discussion about the long term health effects and how we're going to monitor for them. This side talks about the different kind of needs that are cancer patients will need. And so you can see obviously quality of life is kind of at the center of kind of this need in terms of making sure that I have great quality of life long one last scene and a lot of our patients when they're diagnosed really young, I mean we definitely want them to have a good quality of life, especially if they're going to live 50, 60, 70 plus years. We want them to have good quality of life and focusing on some of these kind of areas and so you can see the big areas there in terms of their physical well being, their psychological well being, social well being and spirituality and so we try to focus on, you know, avenues of these kind of um you know, kind of domains I guess, and you know, during our discussions with patients and obviously some of them maybe take more of a kind of emphasis than others depending on what the patient sexual needs are. So especially if it's a patient that has kind of, you know ability or problems walking or problems with, you know, um kind of, you know, problems with either attention, you know, memory kind of focus that we might focus a little bit more like the psychological side or even some other mental health conditions too. But each patient will kind of get a comprehensive look at some of these domains and then we focus on on certain areas depending on what the patient has. This is another one that talks about kind of different domains but kind of domain, maybe a different light itself. So you can see the domains that they focus on and you know, other starfish, it kind of models talk about growth and development and then we'll talk about that here in a minute. Different organ functions obviously because different treatments and stuff can affect organs differently and a lot of these, you know, organ dysfunctions, why not manifest during therapy but can manifest later in life especially as patients get older and have other comorbidities um kind of related to risk factors with getting older or other kind of societal risk factors in terms of things that maybe they are doing to their body that aren't really helping some of their organs as well. Um definitely looking at fertility and reproduction, we do a lot of fertility discussions. Obviously we're not fertility experts but we try to connect patients with fertility experts if they have questions or they have concerns based on the treatment that they received. Um a lot of looking in obviously secondary cancers or current cancers just because that's always an avenue where patients are at higher risk just by having had the cancer before. And then also definitely doing a good kind of psycho, social psychological kind of evaluation to in terms of lots of mental health, lots of education and connecting them with kind of social workers and mental health experts if the patient requires those kind of services. So what I'll do is I'll kind of jump focus in on a few of these kind of key topics. Obviously there's a whole host of different things that patients can be exposed to. Um but we'll focus in on a couple of them and then, you know, if there's questions I can answer those after we get to um you know, at the end or during slides that there's questions about certain kind of areas to. So we mentioned related to kind of chronic health conditions. So um you know, infographic that I put up a minute ago had, you know, that was one study that looked at different kind of how often those chronic health needs or chronic health conditions develop. The different studies have looked at them and you can see anywhere from 16 90% with one or more health condition and 20 to 80% with severe life threatening conditions. And it kind of depends on the studies that they look at in terms of, you know, the diagnosis, the age when they're kind of looking at these windows and different analysis models. But it's definitely ones where we're seeing lots and lots of patients that develop these long term health effects later on. One city that I found interesting was about 40% of Ai which is adult and young or adolescent and young adult survivors had greater than or equal to two or more commodities compared with 20% of those without cancer. And you can see the kind of the disparity in the chart there, those that are cancer survivors in the blue and those that don't have cancer. And the red and certain factors like certain chemotherapies, certain treatments like radiation therapy, um and certain other kind of risk factors kind of would lead to kind of these higher risk kind of, you know, chances of developing some of these chronic health conditions long term. Um and so that's why, you know, looking at some of those treatments and figuring out are ones that we can substitute one, maybe other treatments that are less likely to cause some of these kind of where a lot of the um kind of research is being done now to look at how better to kind of minimize somebody's long term effects. And when we mentioned with some of the long term effects was related to these were the kind of the five different categories that we kind of talked about some of the domains themselves. One that will focus on on this side is kind of the growth and development. And so when you see growth and development, people are like, you know, is that just getting bigger growing, you know kind of put on their linear growth. So definitely encourage linear growth. So that we definitely see that survivors have problems with growth over time. So maybe they don't grow to you know kind of the height of the statue that they should grow or they have problems with growth and development kind of long term based on the treatment that they received. You can also see growth issues to kind of their intellectual function in or their emotional and social development too. So certain treatments can affect the brain and the central nervous system in various ways in terms of patients receiving radiation therapy um in tropical chemotherapy. So spinal taps that have chemotherapy and them and other kind of chemotherapy agents that can affect the brain long term. And some of these patients, especially if they receive really young ages can have really challenging kind of you know childhood adolescent kind of school and learning abilities and a lot of them require extra kind of helping the school systems that way they can succeed as best they can. one City that look at it. This is just showing it's a little hard to see. But you can basically the idea with this is kind of long term how kind of the time from diagnosis, how I. Q. Is affected by certain therapies. And so you can see as the I. Q. Over time as we're going to the right like just getting lower and lower in some of these patients and these are patients that are receiving therapies that are affecting the central nervous system kind of long term. And so we rely on a lot of our um neuropsychologist and neurocognitive testing to kind of assess some of these patients. And you know through different studies we found certain patients that are more high risk or um you know kind of these long term kind of related to you know intellectual challenges and other cognitive changes to and so trying to plug them in early on and getting even pre assessments can be really helpful to see where patients starting from to know how the treatments affect them long term one avenue in terms of looking at kind of organ dysfunction themselves that we see a lot of is cardiovascular toxicity. And so certain medicines and chemotherapy agents, radiation therapies definitely can affect the heart long term. And so it's one of those ones where you know doing kind of baseline echocardiograms and cardiac function utilizing our colleagues in pediatric cardiology or adult cardiology if they're old enough for um and or the adult team to ensure that they're kind of reaching and not having long lasting effects related to the heart itself. Risk factors that we've seen. Like we mentioned certain chemotherapy agents. So the big ones that we've seen are the anther cyclones. And so those are like dr Rufus and Donny Robinson and those are utilized them lots of different chemotherapy regimens. So it's ones that we see, especially in our lymphoma patients and definitely our bone tumor like our osteosarcoma and you insert constipation, radiation therapy. So definitely radiation to the chest lung area that can affect it. And that's why a lot of therapies have tried to minimize as much radiation as we can just because we know it can really be disastrous and really affect patients long term. There are times when we have to give it to some patients just because you know it's the best therapy that we have and it's the best treatment that we have. But we try our best to minimize on the effects of the radiation. They found that female gender. And you can see in the chart um you know the the top line is our female patients and the bottom line is our male patients and those that are having kind of um kind of cumulative risk of having cardiovascular disease or cardiomyopathy. And so the female patients have actually had higher risk of these long term. And I mentioned, forget to mention that little kind of chart right above that is looking at the ghosting of the anther segments of the stock setting down roots in. And you can see that at certain higher doses. It's the risk for this kind of heart failure symptoms can go astronomically a lot higher than at lower risk at lower doses to. And so those ones that we are definitely monitoring how much forgiving of the medicine and minimizing the medicines that we can to kind of preserve some of his heart function long term. One thing that I like to bring up related to this and um this was from a cardiology colleagues. They brought this up and they do a lot when they see patients in their clinics but I've been trying to do it with some of our C virus to is kind of looking at some of the risk factors that patients have when they come in to see us. So obviously thankfully kids were not seen as many cigarette smokers but definitely when they're going to adolescents and young adults we're seeing some of those kind of risk factors in terms of obesity Hyperloop. Thenia problems with you know being as active, poor nutrition, cigarette smoking potentially. And then you're taking into consideration maybe the all the therapies they got. So they had radiation and or anti cycling use and or other you know kind of effects on the heart themselves trying to minimize those effects and the prevention strategies that at the bottom is kind of what the cardiologist have used. So these the A. B. C. D. E. Approach. So definitely awareness and assessment, definitely a blood pressure control. And they've seen that in a lot of pediatric studies kind of working on cigarette smoking and cholesterol screening diet diabetes. I'm working on those as well and then definitely getting to exercise as well. So it's one of those ones where we focus on it a lot but it definitely can make a difference. And you might not see the effects of the cardiovascular system for many, many years afterwards. But once you see them it can be really disastrous. And personally I've had three maybe more patients that have had really severe um cardiomyopathy symptoms after having cancer diagnosis that affected the heart. And two of those patients actually ended up having to have a heart transplant long term just because of the complications. And so it's something that, you know, it definitely, you know, it can affect patients really, really severely kind of shifting the gears a little bit to um kind of the fertility side that we see. So definitely our patients come in with lots of concerns about reproductive complications. And so we see a lot of patients obviously pre diagnosis and we try to do a lot of fertility discussions and discussions about fertility preservation with especially obviously our allies in any young adult patients are pretty tribunal patients. Obviously it's a little bit harder to kind of have those discussions just because they don't maybe have the necessary, you know, they're not in the necessary time. We can kind of consider it as much but definitely trying to have those fertility discussions upfront just because after having certain kinds of cancer therapy and certain kinds of treatment um the chances of being affected by that definitely goes up uncertain ones. And so sometimes patients will lose some of the potential for different kinds of strategies to kind of affect um you know kind of have to have you know normal fertility or have you know, problems with fertility. And so it's ones that we try to focus on up front. But definitely if not we definitely focus on it in the survivorship world as well. And so they've shown that males are definitely more sensitive than females to this infertility and hypogonadism. And that's seen both pre puberty and post puberty. So it's one, you know, especially for male patients when they're you know in that post period all age like an adolescent and young adult range. You know, we'll try to connect them with the fertility team beforehand and sperm making thankfully a very, you know easy approach for a lot of patients. But sometimes some of these pre cancer treatment approaches can take some time and maybe the patients too sick to do certain kinds of treatments upfront. And so sometimes some of these patients miss out on some of these pre cancer treatment, fertility kind of op options and then they have complications long term. Um we definitely see and we get asked a lot. So from our w I've seen it with a lot of our patients so they worry about getting pregnant or having Children in the future because they worry that they're going to pass the cancer pass the cancer gene or their Children are going to have cancer increased risk. They haven't shown any increased risk of birth defects or cancers in offspring. Obviously there are cancers that are genetic base and those definitely need to be kind of address. And certain ones, if you're seeing them in multiple family members, they usually will get screened through genetics. But just cancer that kind of developed by itself without any kind of, you know, pre kind of nothing that kind of caused itself. There's no increased risk for future kids having cancer. So sometimes our patients come in and don't want to have Children who don't want to have a discussion. And a lot of it's from the fear of eventually passing cancer, honor having those cancers kind of given to their Children that they would have. Um I've listed a few different risk factors that you can see. So different. Certain kind of chemotherapy agents, definitely like our operating agents like cyclophosphamide and I lost my our big risk factors again, radiation therapy and it's not just radiation of the abdomen and pelvic region, It's also radiation of the brain as well. So it can affect some of the growth hormones and different kind of hormones in the brain and that can affect kind of the ability to have Children long term as well. And then definitely surgery. So obviously if you're having reproductive organ removal or kind of damage to the nerves. You can see changes and have problems with kind of having Children in the future. These next few slides talk about the different options that we see for different patients. And so this one just highlights the fertility options for men. And so you don't have to go through these specifically. But there I just want to show that there are lots of different options and beyond just like normal kind of sperm banking, which is what people typically think of for men, which is pretty, you know, universally accepted and universally, you know, easy to kind of collect and store for majority of patients. There are other experimental options out there and a lot of these are more kind of investigational studies and lots of them are a little bit like we mentioned events investigational and it's a little bit we're challenging to kind of accomplished and or kind of, you know, pay for those. That's why a lot of them are in an investigational studies themselves. The same holds true for our female patients are absolutely potentially more options. Again, some of these options are a little bit more complex to do and can take time to do for a lot of these patients. And so sometimes especially for our female patients, they maybe don't have the time, especially if it's a really aggressive cancer or cancer that needs to be treated right away. So sometimes we, you know, they might miss out on essentially some of these pre treatment options. And so then, you know, they're coming to us and survivorship. And then we're talking about kind of other options and connecting them with the fertile reproductive endocrinology team to kind of talk about what other fertility options are there related to? One of the other domains that we kind of discussed. So secondary cancers. So we definitely see secondary cancers. And that's always a big kind of risk with our patients when they come to see us after they've been treated for cancer. So obviously the first thing we worry about is their primary cancer ever going to occur. And basically when they're seeing us in the cancer survivors of world, majority of them are getting close to that five year. You know, five years since treatment, maybe maybe a couple years depending on when they see it. Or even if they're moving from a different state or city, I've seen patients, you know, they're coming into survivorship clinic 10, 15 years after diagnosis. And so they're coming that long after diagnosis. The chances of it recurring go down dramatically each each each and every year. So the chance that you could actually get a secondary cancer is always there just because of having a like a first cancer. Your you go up in terms of a little bit increased risk for having another one different things that we see that cause kind of risk factors are younger age of diagnosis, which kind of makes sense because the younger you are diagnosis, the more chance you can, I'm sorry, you could develop cancer kind of long term afterwards radiation therapy again. So you've heard the buzz word against the radiation therapy and hopefully there's no radiation oncologist on the call here. It is definitely a team that we work closely with. And we definitely it's a therapy that is really essential for a lot of our patients. But it definitely comes with a lot of costs. And that's why, especially for the younger paediatric patients and certain kinds of cancer, we're trying our best if we don't have to use it. We try not to use it. But there are some patients where we have to use it and we just have to take that kind of risk benefit ratio or we're trying to cure their cancer and try to help them. But there's always the potential for kind of a long term problem. Um Female gender has shown an increased risk surrounding secondary cancers and then different kinds of chemotherapy. So, you know, I listed a few there. So cyclophosphamide utopia side, the inter cycling's again, and there's other ones that can increase the risk as well. And so that's why looking at some of these kind of secondary cancers and when they occur and what kinds to kind of watch for and what we should be looking for is essential for the survival team. This legislation kind of the different secondary cancers that we would kind of watch for for a lot of our patients and you can see in the middle there the latency period. So some of these secondary cancers can develop many years afterwards. So it might not develop a year or two or even five years after the primary cancer diagnosis. So you can see even for some breast cancer patients for the Being a secondary one 15-20 years afterwards. And so it's one of those ones is having a good index of suspicion. Like is this related to their treatments and their primary cancer that they got treated with. So that way we're always kind of watching for what they could be at risk for. And this is another kind of slide that looks at, you know, looked at a 30 year kind of um kind of calculated the cumulative incidence over these 30 years of secondary cancers. And I'll also kind of skin cancers and you can see just exponentially kind of goes up each year. And obviously that a lot of that goes with other risk factors. So, you know, sun exposure for the skin cancers and other potential, you know, kind of risk factors related to, you know, if they're smoking, obesity and other lifestyle changes, but it's definitely ones that we're seeing, you know, an increased risk long term. And a lot of these pictures and then we kind of tie up the, you know, the last kind of domain that we typically we should focus on in terms of the cycles of complications. And so a lot of our patients, especially those that are getting to like the adolescent and adult range can have a lot of really challenging kind of long term effects. And so challenges with like unemployment or, you know, if they're having issues with the schooling system themselves, like trying to kind of focus on that. We see kind of those kind of challenges for some of our patients, a lot of that relates to a lot of their psycho, social and or psychological issues. So they're having mental health conditions and our problems with cognition, memory processing speed. Those things can kind of impact on how well they might do in school and how well they might be able to kind of hold and sustain a job. Um, definitely we've seen relationship difficulties and some patients and some treatments. There's been a lot of studies out there looking at kind of social support and social kind of networks themselves in terms of what could be helpful and predictive in terms of having better quality of life and better. So psychosocial outcomes as well. And so this one is that we kind of should be focusing on for a lot of our patients and then definitely poor knowledge. I put that on their poor knowledge of diagnosis and treatment. So I don't know how many patients, I can't even count how many patients that I've talked to that maybe were diagnosed when they were really, really young and maybe their parents never told them really anything about their diagnosis and or, you know, they're coming to see us because maybe they primary care referred because they passed cancer history where I've called people on, you know, for research purposes and things like that. And, you know, they've had a cancer diagnosis, pretty severe cancer diagnosis retreated and they have no knowledge of it. They say like, no, I never had cancer. So, sometimes a lot of that could be, you know, maybe they just were informed about it and where they may be. Just don't want to think about that. It's kind of not who they are. They're not trying to associate with that anymore. So that can be really complex in terms of treating a lot of these patients. All right. So, what we're gonna do, I'm gonna shift a little bit of gears and kind of, you know, we talked about some of the areas that we kind of focus on in some of the background knowledge of pediatric cancer and survivorship, but talking about kind of what goes into a long term follow up care and what we would do in our survivorship planning. And so this kind of study looked at kind of the number of survivors and kind of what kind of um kind of care that they receive long term. And so you can see um, you know, in the chart here breaks it down by different kind of color encoding. So anything in the blue, red, um yellow is some kind of um kind of, you know, kind of care, a long term terror that they're receiving. And so you can see the majority of patients of survivors do receive some kind of care. So close to 90% of patients, but only you know, 30% receiving some survivor focus care. And only less than 1/5 of patients receiving some sort of kind of kind of risk based kind of survivorship care. And so you know, they might be getting just general care in terms of, you know, watching for maybe a secondary cancer or checking labs and they're not getting like really intensive like these are the medicines, these are the treatments, these are the things that you received at this age, these doses, this is what we should be worried about. And so that's what we need to do a better job as to treating these patrons and getting them into the right source of care. So that way we're making sure that we're covering all the potential risk and long term effects that they can occur. So into a long kind of long term follow up care. So the idea of when they refer is really challenging. So depends a lot on the center kind of window or for them to kind of a sore irish of the long term kind of care. So some senators will start to do it like the moment they finish therapy, um, Some senators will do it depending on if they're like a low risk patient or high risk patient may be low risk is two or 3 years high risk is 5, 6, 7 depending on what they're kind of qualifications are a lot of places just do it at the five year mark. They think five years your survivor get into survivor should get into long term care. So it's really kind of variable depending on the center that patients going, what they're doing. So it just depends on kind of, you know, kind of where you're working and where you're seeing them back and then the rare to refer is another challenging one. So, you know, is that the center where they receive therapy? You know, it's probably a good, they're good center because they know them. Maybe they've seen them, Maybe it's a physician that also treated them for the therapy and they're seeing them for survivorship care. But maybe that center isn't really close to where the family lives anymore. Or maybe that center was really far away, but they just went there because it was a specialized care center. So maybe there's a closer kind of long term follow up center nearby or closer, you know, cancer center nearby or maybe the patient doesn't want to go to cancer center or maybe they feel comfortable seeing their primary care physician. So sometimes community providers can also buy this care too. And so I've worked with a number of primary care physicians and providers actually do a lot of survivors of care and some of the survivors of care models. It's based off of what more about primary care focus anyway, so it's ones that you can definitely include primary care a lot more than we probably due to tell what with some of these care needs. And so you can see them a little chart for the little graphic there talks about the different kind of elements that we try to do in survivorship care. So obviously we try to do some kind of treatment summary and we'll talk about the survivorship care plane where we're giving them, they're really good overview of all the therapies. They got the doses complications what went on in therapy. So that way they have kind of a living breathing document of kind of them as a cancer patient in their therapies. We'll also talk about kind of the late effects that they have and kind of when we should be doing this. How often what therapy is, what testing and if we need to do any referrals to other centres or other kind of specialist as well, definitely do a lot of health education just depending on, you know, what they're having a lot of it could be on, you know tobacco use types exercise, but it also could be on just taking medicines. Following up seeing their primary care position, you know, doing the lab tests that we kind of, you know, kind of say are important for their health and then definitely a lot on psychosocial care like I mentioned before. So we have a working social workers working with our psychology team, different support status. Well to kind of give them a really robust kind of care kind of model itself, one that we like to, I like to use as a pediatric oncology. So the Children's oncology group, which is where a lot of therapies were, kind of form develops. They've developed these long term follow up guidelines that have gone through many iterations. And so it lists different resources for providers. So it actually lists like how to develop your own long term follow up care center if you are a primary care and or some kind of specially specialists in terms of what goes into it, what you need, how to follow it and how to focus it on the kind of the therapy based or the treatment specific um you know, kind of long early effects that patients could be at risk for has lots and lots of patient education materials they call health links. And so these are helpful to discuss with patients and or their families and caregivers, you know, if they need to have discussions related to kind of what they're at risk for them, why they're at risk for this and what we need to do to kind of watch for it. I listed the website there. So it's pretty easy, survivorship guidelines dot org and it's one that you know, I'm actually on one of the C O. G. Um kind of but you know, I guess it's the long term follow up kind of panel itself and the one that I'm working on right now is kind of with um kind of working with developing better primary care letters, notes, templates and things like that. So that way information is getting back to primary care a lot better and faster. So that way they know exactly what's going on and it's hard less less to decipher I guess it's kind of a better way to say. And as part of this this is a kind of a just a general what you would see with a treatment kind of summary of a patient. So this is just one from the Children's psychology group. Obviously there's multiple multiple multiple off there, there's tons depending on, you know, american cancer society, american in a society of Clinical Oncology. Some you know institutions and some senators have their own there's some that are obviously based off of different models themselves but we'll talk about what goes into it but this is kind of what you would see and what we would be kind of, you know, kind of making for the patient going over the patient and kind of discussing with them in their camp. Uh huh. Well this is my connection is lost maybe next slide. Sorry. And then when you get into the kind of the survivorship guidelines, they talk about these they have these little tabs in here and I just listen a few. So this one just less kind of you know any cancer that experience. And you can see it kind of talks about the different you know potential effects kind of how to evaluate for it and then kind of further considerations and this is how to base a lot of the survivorship care off of in terms of what they were exposed to what the treatments were and how to go forward. This is another one that's looking at certain chemotherapy. So this is looking at the inter cycling's and so this is looking at the cardio cardiac toxicity related to it. And so you can see it talks about what should be done in terms of history which we've done in terms of physical, what should be done in terms of what screening, how often a lot of it's based off of the dozing of chemotherapy agent itself and or this one for radiation too and gives a lot of like counseling on kind of window refer other considerations. And so these are really you know obviously these are things we're gonna obviously patients can see these if they go on to the Children's oncology website but taking this information and making a digestible for patients that's kind of our goal including through these risks because I kind of our goal and they have the same thing also for radiation therapy. So this looks like the different radiation therapy for head and brain or total body radiation or TB radiation too. And so you can see these are pretty comprehensive and they go through different iterations. I think they're on version five right now and probably working on version six at the moment in terms of modifying these based off of different research studies and different kind of protocols. And then like I mentioned before, these health links are really important. So you can see this is just a screen grab of kind of the different ones that it's only a small sampling of it but talks about different ones in terms of diet, physical education, i health hearing loss and so lots of them that you can kind of pull up and talk to families about some of these kind of late effects that you might see and where they might be at risk for. Um so I've utilizes a lot thankfully. Now a lot of them are available in spanish french and or chinese as well. And so there are ones that, you know, their easily digestible for families are not that long and you can kind of discuss them with families, especially if you're worried about a certain complication or if they have a certain side effects or a long term effect to give them more information. So that way they can maybe understand it a little bit better as well. Dr Galligan do you see any specific long term side effects in cancer survivors? Yeah so definitely see a good number of long term effects. I know we talked about some of the cardiovascular effects themselves. We couldn't go into all the different side effects but I think the big ones that we see as we see a lot of neurocognitive effects and so lots of problems with memory. Kind of the cognition, processing speed, Lot of 80 HD diagnosis kind of interrelated with that. And so you know kind of manifests itself with like you know problems with school or problems with behavior. And so a lot of times will try to connect them with you know neuropsychologist or neurocognitive specialist for testing, get them better resources and a lot of them just to get better kind of um you know it's I. E. P. Or high hopes for plan to get them better education in the schools and a lot of them even qualify for more assistance to because depending on how severe kind of their um kind of issues are related to that cognition but we see a whole host of things related to you know you see a lot of renal side effects. So a lot of challenges with you know kind of kidney disease themselves or problems with creating or human urea um you can see pretty much anything in the body. Lots of terms of side effects. So um you know I think the big ones that we kind of see a lot of our cardio vascular neurocognitive psychosocial um maybe even like chronic pain, chronic fatigue for some patients to um and then a whole host of other ones that more related to certain specific therapies themselves. But yeah, it's one that you know, I think lee you know, it's every day that I see a survivor, it's a new kind of thing that pops up or a new combination but definitely ones that are kind of more common, that sort of question. All right, thanks so much. So like we mentioned before. So the survivorship care plan is kind of our living breathing document that kind of talks about the patient's whole history and kind of talks about kind of um you know what went on in their whole therapy complications doses different treatments that they received and so the goal when they see us and survivorship is kind of developing this plan. So it's basically taking you know, I really see their treatment summary and kind of been there follow up plan in terms of what we're at risk for late effects and kind of merging them together and giving them this document that kind of gives really specific instructions on what we're worried about further long term effects, how to watch for that if we need to refer them anywhere, how to get them good care. And so our goal is we obviously give it to them when we meet them in survivorship but then we go over each time that we see them as well especially as you know kind of updates develop or long term effects may be changing or develop based on different treatments and different studies that have been done. So it's one of those ones, we kind of bring it up over and over again and obviously give them a copy and then a lot of these survivorship care plans that are kind of linked through some kind of online portal for a lot of patients where they can have access as well. And the goal is to hopefully get these patients to have them. So that way if they're seeing positions or seeing other care providers, they have something tangible with them or something that they can bring. That kind of gives a little overview of their cancer history themselves. So that way you know and what we're kind of worried for and what we're watching for um the way we try to do it is obviously making it as individualized as possible. And so you can see the different kind of categories that we try to focus on. So obviously they're cancer summary. So type the stage of diagnosis treatments. So what they got treated with what they received focusing a lot on the doses so especially the doses of radiation doses of certainty. No there we can be really helpful because the higher the dose the more effects you can see for some of the medicines. Um and then definitely looking at the kid, they had surgery if they had, you know, a transplant transfusions and then also I didn't listen. They're like complications with care where they admitted to the hospital a lot. Do they have you know, to undergo multiple hospital stays for fever infection, you know, other effects that you can see blood clots and things like that. So lots of different things that we would kind of include in their treatment summary. Talk about like their recurrence risk. So what's the risk of it coming back? Obviously if they seem like genetics or have a genetic based cancer that would kind of alter those and obviously including those specialists would be really helpful. Um but we kind of talked about what which we should kind of watch for some of these effects and especially as they get older into the adult population, like their cancer screening that goes along with that too. And then talking about the late effects like we kind of mentioned before with certain ones. So we take those little screen grabs, you know, that can kind of break it down for patients to understand what risks they have, how we're going to monitor it and how we're going to kind of evaluate it long term. And then we talked about kind of the surveillance and screening. So what screening is needed when to start it, you know, isn't even now. Okay, maybe you need an echocardiogram every five years. Okay. What we'll do one now and then if it's good five years from now knowing that each time we see the patient we'll be evaluating kind of their cardiovascular health and making sure that they're not having symptoms that maybe we need us to do something a little bit sooner than the five year mark. And then obviously doing lots and lots of different lifestyle things too. So I can get nutrition exercise. A lot of other kind of social factors that go in there. And so we spent a lot of time talking about that, especially with, you know, some of our patients that's like the focus of our talks just because they're, you know, kind of lifestyle factors are really, really complex and or you need a lot of work and trying to kind of a lot of different research studies now are focusing in a little bit on nutrition and diet and kind of how to improve those, especially in some of our patients that were younger when they're diagnosed and now maybe they're having complex, complex issues related to obesity related to bone health or related to sedentary lifestyle. And then the survivorship care plans can be, you know, utilizing, you know, multiple different kind of setting. So obviously the Children college group has their own kind of survivorship general care plain. But then there's different other ones that are out there too. So passport for care is one that was developed through kind of a collaboration with the Children's oncology group. A lot of these actually have online kind of portals where patients can actually access them with caregivers and then positions can access them too. And so it's ones that get the ability to kind of you know have it living online. So that way you know it's easily editable and easily to kind of change if you need to make changes over time. Um There's other ones too. So the american Society of Clinical Oncology is journey Forward. Uncle Life's another one that brought up centers we used to and then some institutions develop their own plants. So depending on if it's like a Sterner or an epic they might have their own kind of survivorship plans that they can develop internally and kind of utilize those two. And the goal with all the survivorship care plan should be pretty much the same. So there shouldn't be any big changes with any of them but it's just how it's delivered to the patient themselves. One thing I wanted to bring up with survivors is something called the childhood cancer survivors study. So the C. C. S. S. So this is kind of a Founded back in the early 90s and a lot of what we know about survivorship and kind of long-term effects of survivorship were based off of studies that CCS. S. has done. And so this is a kind of a large cohort of cancer survivor patients. Um and also their sibling controls like healthy siblings that didn't have cancer. And they've watched them for many, many years in terms of the long term effects related to. We know a lot of the risk factors and late effects based off a lot of these studies. And so you can see there's different institutions that collaborate with the center with these centres. It's mainly based out of ST jude but there's other centers that collaborate as well. And they do lots and lots of different research weight based on different treatment strategies, different exposures. And I'll post a couple of screen grabs here different studies that they'll show. And you can see there, you know, it's one research and they post a lot of the different studies um in terms of what's out there in terms of I think the left side is a lot of this long term psychosocial um kind of effects and on the right side. I think it's a kind of childhood obesity effects too. And I mean if you go there, I was trying to calculate how many studies they put out, but it's I was just kept scrolling and scrolling and scrolling like there's tons out there in terms of the studies that they'll put out based off of this code or in terms of the long term health effects. And then can we'll finish up here with kind of the long term follow up provider. And I wanted to bring this up just because a lot of our patients, you know, it's a challenge for them. Sometimes they come to kind of back maybe the center that they were treated at or to even a specialist survivorship clinic especially as they get older and maybe challenges with school life jobs, family work, you know, lots of different things that come into play. And so sometimes, you know, they might be seeing their primary care provider and sometimes, you know, to them, it might be easier just to see one physician and kind of get all their healthcare needs there too. And it's definitely something where primary care can be really heavily involved in survivorship care and sometimes can actually leave survivorship care if they feel comfortable. Well, what we found in some of the studies, um, in terms of some of the barriers that are there. So sometimes survivors have certain kind of ideas that they need more specialized or expert here. So especially if they get referred to a specialist cancer center, they feel like, you know, I need to stay here because my team knows me this is where it's been done. I don't want to leave here because maybe they have a really complex history and things like that. Um Sometimes primary care providers sometimes lack the familiarity or the personal history with certain cancer cares, you know, obviously depending on how much exposure they had to cancer therapy or even to the patient's history themselves, they might have more comfort level, but not also not all primary care providers have that comfort level to see them. And then also sometimes primary co operators came to procedures, not really active engaged in cancer care. And sometimes, you know, I think as pediatric hematologist oncologist we get kind of um, you know, I definitely can take some of the blame with that in terms of our patients looked at us while they're getting cancer care and be like, you know, I need to see you right now. You know, even if it's something maybe it's not really a regular cancer and we should do a better job of really actively involving the primary care providers. So that way they still have that connection even during the time of the cancer care themselves. And so it's one of those ones where kind of having really good open communication throughout having kind of discussions on, you know, side effects and treatments, utilizing a lot of the resources available through the Children's oncology group and or american cancer study in other places too. So that way, you know, primary care provider scale more comfortable seeing cancer patients after they're done. And we're possibly even leading some of their cancer survivorship care afterwards as well can be really helpful for a lot of these patients, especially if there less likely to go to, you know, both the primary care visit and the survivorship and so that kind of relates that, you know, we mentioned over communication, making sure that the treatment plan and the survivor tree care plan are communicated really well. So that way the primary care doctors get them as well. So that way, you know, they know what's going on and what they were treated with, what concerns we have. So that way they can kind of maybe evaluate those concerns in real time as well um providing definitely education and guidelines. So that way they can kind of follow those and there's lots and lots of different resources out there. The one drawback that I see sometimes is the time involved with survivorship care. So like a lot of our survivorship care patient visits can be anywhere from 30 minutes up to 60 minutes for the visit. Obviously in primary care that might not hold true for all patients just because we're seeing a lot more higher, higher volume than we would see and kind of survivorship care. So we do have the essence of more time with the patients and it's one of those ones where trying to kind of have a better model in terms of that, you know, a lot of that goes back into probably things above all of our heads in terms of reimbursement and time with patients that way we can really actively, you know engage with them and kind of go over things that are really important in the survivorship world. So these are kind of the key, taking points that I want, would want everyone to kind of get out from this. So obviously more and more childhood cancer survivors are happening each day as we're getting better with treatments and better diagnosis and we're just seeing more and more and over time we're just going to that number is going to continue to go up as we're getting better and more specialist care. Um, these survivors are definitely at risk for kind of long term health effects. So we need to kind of watch for levels. We're trying newer therapies to minimize some of these effects. So that's definitely in the pipe in terms of looking at some treatments that are maybe more specialist and more targeted therapies that can minimize the long term effects on a lot of our organs and body systems. Um, definitely having some kind of comprehensive and or integrated survivorship program is essential, at least initially. And then definitely like our last point kind of communicating and connecting with primary care. So that way the patient can really feel that they're at the center of everything and that primary care is involved obviously because we want to keep everything as patient centered as possible. And having primary care there can be really helpful because we're obviously going to see them more than we would see them and we want you to be comfortable to know kind of what's going on with their long term kind of survivorship care. So with that I'll take some questions. I think this fun just has different resources kind of related to cancer survivorship and cancer pediatric cancer care in general. And a few references here, obviously it's really small, you can't see. But and then at the last year is obviously if there's any kind of information that you guys need or survivorship kind of referrals or other patient referrals, I listed some of our contact information there and obviously I listed my contact information too. So that way, if you need to go to hold me or have questions that maybe are answered here during today's session, you can always feel free to reach out. But our goal is obviously uh, you know, obviously in childhood cancer, you know, we can't end it take care of these patients with the long term health effects that they have as we become survivors. Thank you guys for your attention. Published Created by
