 Okay, we'd like to move forward with the afternoon program and I think the afternoon will have us a little bit of a different feel, won't be as long as the morning session, but I was very pleased that Leslie Herron could come and speak. Leslie works on our campus in what we call the survivorship clinic and so I think the focus turning from diagnosis and therapy to the patient experience, I think it's a great transition and then after Leslie's done we have some patients that are going to come and share first-person accounts of their experience with kidney cancer and for those speaking if you're comfortable receiving questions we'll do a little panel at the end. So without further ado, let's take it away. All right, can everybody hear me okay? Am I too loud, loud enough, all right? In the back, happy? Okay, perfect. So I had someone say that I didn't have a Z and all of the alphabets after my name and I always like to put all that up there just because it's kind of fun you know you work hard for all those but but really you can just call me Leslie and and I know that with a lot of times with nurse practitioners and physicians assistants people are also kind of like do I call you what do I call you and just call me Leslie and I'll answer that so thank you for coming. I am the nurse practitioner in the survivorship clinic at Seattle Cancer Care Alliance and I also am part of the Fred Hutchinson Cancer Research Center survivorship program where we do collect a lot of data about cancer survivorship, what happens when, what are people's experiences, there's a lot of survivorship data that's being collected and different studies that are going on here in other places. I'll be speaking a little bit about survivorship and what's happening across the country in just a minute and then the other things I do just so you know I also lay us on with Seattle Children's and work with young adult cancer survivors and I also am faculty at the University of Washington in the School of Medicine in the School of Nursing. So that's me and we'll just go around let you all in. So let me just go on to this. I'd like to let you know kind of what my expectation of you for this talk is and I'm going to go a little bit with this kind of like we're in Driver's Ed 101. We're going to do survivorship 101 so you're going to have some road signs going along here. Just I would love you guys to be able to describe what you might expect along this road after cancer treatment is completed, increase awareness of the common road hazards that you might encounter and then how to in my big thing really is about how to be in the driver's seat during your cancer treatment and and on afterwards. So who are cancer survivors and I actually just got a great question at the break saying so what about stage four folks should they come to survivorship and really you know the deal is anyone who's been diagnosed with cancer from the time of their diagnosis through the balance of their life is a cancer survivor. So a lot of times when you hear about survivorship people go oh well I'm not really a survivor yet you know I and I hear that a lot that you know or I hear from providers like well I've got someone I really think they do great in survivorship but but they're you know why they're not five years out yet or they're not two years out yet and there isn't really a marker for survivorship from diagnosis on your surviving and and more power to you. In our particular survivorship program we see people on long-term and maintenance medications or people who are still on surveillance. We don't see folks that are in their active treatment actively getting radiation or actively getting chemotherapy just because usually then I would be working on on kind of the side effects not really on kind of what happens next. So we draw the line because there is me in the clinic and not a whole bank of us. We draw the line at being completed with acute active treatment but I see a lot of people on maintenance therapies no matter what stage their cancer is or how far out. And then what is survivorship? Survivorship is really addressing the unique needs of cancer survivors and that it really encompasses so many different things. So just a little nomenclature before we get going here long-term effects are things that happen during treatment like say somebody who gets fatigued during treatment and that fatigue may persist after treatment. That's a long-term effect. A late effect is something that maybe you you know have fatigue or whatever during your treatment but then you're treated with something that two or three or four years later may kind of rear its ugly head and give you some trouble. That's a late effect. It's something that maybe you don't have right at the beginning you know during treatment and it persists. So what are some late and long-term effects of cancer treatments? There will be a quiz. No. Anyway these are some and not even a complete list of late and long-term effects of what happens with our cancer survivors. We do an incredible job of treating people's cancer but that doesn't mean that it comes effect-free. Some people will have heart disease after they'll have lymphedema which is swelling of the arms or the legs or parts of the body because part of the lymph node system has been removed. We have people who have muscle and joint stiffness, sexual dysfunction, lots of distress and worry, changes with jobs, school concerns, financial concerns for sure. All of these are survivorship effects and these are all things that someone who is well versed in survivorship can help you through. So how do we know that these are a problem? The Livestrong Organization, whether you are big on its founder or not, the Livestrong Organization has done some amazing things for cancer survivorship and every two years they do a big survey and they say what okay all of you cancer survivors who are willing to answer this survey, what kinds of things are you noticing physiologically that are giving you trouble? And you'll notice that these folks notice things like energy problems, concentration problems, sexual function, neuropathy, incontinence, lung problems, thyroid problems, all these things and they're saying okay so of the respondents these are the amount of people who say that they're having problems with these as a cancer survivor and these are the folks reporting a lack of treatment for those concerns. So 83% of cancer survivors that have concentration problems are saying they're telling me yeah it's normal you know it'll get better and not really addressing it or infertility problems, hearing problems, heart problems and they're saying yep everybody says yep that's just what I can expect but they're not really getting any help with that. And this is the percent of respondents who have emotional concerns, fear of recurrence is huge, 80% of people are sitting at home going well, wonder what that next scan is going to say or they're having social and relationship or personal relationship problems and this is the amount of people from that same study who said nobody's addressing these for me. I bring them up or I don't know even who to bring them up with but they're not being addressed, huge, huge numbers. So what can we do about this? We can look at what affects your risk and whether or not those things are really, are things that you need to worry about or not worry about and there's a lot of different things so we treat cancer with surgery, chemotherapy, radiation and all of these different things affect whether or not that surgery, that radiation treatment, that chemotherapy regimen is going to really affect you. We know that if we're older we don't bounce back quite as quick. Sometimes a male person versus a female person will have a different effect from something. Certainly lifestyle makes a difference that's somewhere where in the survivorship phase you can make a really huge difference if you are a smoker and you decide to not smoke anymore, if you're not an exerciser and you decide that you're even going to walk around the block once a day. You can make a difference in in your survivorship and in how those different late effects or long-term effects affect you. Genetics, we can't really change our genetics but we can be aware of them. Am I more at risk for a second cancer because of a genetic factor? And we know that prevention works. We know that if you can control the things that you can control that it makes a big difference in how well you do. If you have excellent nutrition you're gonna you're gonna recover a little bit better. Your fatigue is gonna go away a little bit quicker. If you are having your emotional needs addressed and you're not sitting around being stressed and isolated and feeling alone and frightened, you're gonna do better. And so that may be a support group or that may be an online support group or that may be having really good educational materials that you can look at on your own or knowing what websites you don't want to go look at because they're gonna add more stress. And sleep is really really critical and a lot of our cancer survivors from all different kinds of cancers have huge problems with sleep. Some of that stress related that some of that is sleep wake cycle related. Some of that is medication related things like prednisones and things like that can really keep some people awake. So what can we do to help with with that? So how do you know what your own risk is and how do we know what to do about it? The Institute of Medicine, there was this amazing book that came out in 2006 that was called From Cancer Patient to Cancer Survivor Lost in Transition. And it really started this whole survivorship movement. There are a lot of different things that figure in that say, so people are getting diagnosed earlier, they're getting treated more effectively, there's more effective management of medication and treatments, there's better surgeries, there's better radiation techniques. And so people are surviving longer. And the other thing is, thank goodness, survivors started getting mouthy. They started saying, okay, sure, I've got fatigue, but that's not okay with me. What can I do about it? And so what ended up happening is this Institute of Medicine report came out and it said that every survivor should learn about what kind of things they can do to take good care of themselves and know what might be coming down the road in the future for them. We want survivors to be able to do prevention, surveillance and detection of new or recurrent cancers. We want them to know about the consequences of the treatments that they had. And we want to really, and this is huge for what I do in my position, really coordinate, have the oncologist speaking to the primary care, have the primary care speaking to the cardiologist, having the cardiologist speaking to the exercise physiologist or the physical therapist, have the physical therapist reporting back to the oncologist and really kind of getting some sort of communication happening. So, so everybody isn't just throwing up their hands and going, I don't know what the other person's doing, but that's what I'm going to say. So trying to get that together. So then what has ended up happening, and this is where we are now, right now, and it's hard to see on this, but it says standard 3.3 to be phased in for 2015 this year. So it's taken that from 2006 to now to actually get this moving forward. But the COC accreditation standard is happening right now in every single place that calls itself a cancer center. And every place that calls itself a cancer center, whether that be SCCA, University of Washington, Virginia Mason, you know, the VA, anywhere that's doing cancer care, they're going to have to start doing survivorship, and they're going to have their accreditation standard based on this. There has to be some sort of little bitty pilot program starting this year that's going to address cancer survivorship. Now in some of those programs, because they're just now starting, that may be only the breast cancer survivors that started being treated in 2015, and they're going to get survivorship from there on out. And everybody with every other diagnosis and ever treated previously, doesn't qualify. They've got to start somewhere. There were seven centers across the United States that were started from the Lifstrong Organization money that said, go out there and create a survivorship program and see what you come up with. And so here at SCCA, we did something unique to any place else around the country, where we see cancer survivors who are treated anywhere in the world, anytime, so it could have been 40 years ago, with any cancer diagnosis, and everybody qualifies to be able to come in and be seen at SCCA and survivorship. And so it's kind of a really unique niche to have. It's certainly been a steep learning curve for me. But but it's pretty amazing. But every place that calls itself a cancer center will be having survivorship moving forward. And this is what they're supposed to be doing. They're supposed to have a care plan prepared by their principal providers, which whoever is treating them in the cancer center, their care plan is given to them on completion of treatment. That may not be your last day of radiation, it may be at your three months follow what visit or something like that. And there should be a written or electronic care plan that that says this is what you've had, and this is what you need to be aware of into the future, that you can then take out and share with all those other providers, your physical therapist, your primary care provider, your cardiologist. So what's it look like? Sounds like a good idea. All right. So this is our our particular one. And because that's the one that I work with. So that's what I'm showing you. So in this, we talked about up here. Oh, there is a whole. So up here, name, date of birth, medical record number. And then all through here would be right off the pathology report of what someone's diagnosis was. Now if someone has two different cancers or three different cancers or a recurrence, there would be three of these sections or two of these sections or whatever would be appropriate for them. Path medical history might have things like if someone's already got high blood pressure or high cholesterol or some kidney damage or or liver function problems or if they're a smoker, something like that. Cancer treatment facility. So we do have some people that receive their radiation at one location and their chemotherapy at another location or have had multiple cancers and have been treated in different places around the country. What surgeries have they had? What systemic therapies have they had? Chemotherapies, oral agents of their intravenous agents, prednisones, maintenance therapies. And then what radiation have they had and how much and where to and when. And so all of that is incredibly great information that you don't have to go through a big tome of chart to look for. Then it moves on to what we call the care plan. And the part up at the top would have all of those providers that are not the cancer providers. So that might have your naturopath or your physical therapist or your primary care or your eye doctor on there. And then this part over here of who all has seen you for your cancer treatment. And so that again so that people know who's who at the zoo and are able to give a call and say, hey, you're going to be doing labs with that well physical. Would you add on XYZ? One way or you know, one direction or the other. And then this is just a snapshot of what the care plan looks like. And it really does go through body system by body system. And it says what you can expect radiation and steroids and other medications may increase the risk of cataracts. Get in and see your eye doctor having dry eyes is really normal. Thyroid if you've had radiation in the area of the thyroid, go have this checked out, make sure it's on your lab. And we have things that kind of match up between the late and long term effects and then wellness in that, for example, we have heart. If someone's had a medication or a treatment that's of high exposure to their heart tissue, we have up in the late and long term effects, you know, the information about that, but then also heart health, eat a low fat diet, get regular aerobic exercise, avoid smoking, maintain a healthy weight. Those things that you might tell anybody about heart health. And as cancer survivors, a lot of people are kind of like, Oh, right, I still should be doing that. And they kind of forget because they get kind of lost in cancer land and forget that they actually need to be doing their prevention as well. And probably my favorite part about the treatment summary and care plan that I think is just incredibly useful is this little follow up grid and not every survivorship care plan has this, but it's something I did primary care for 18 years before coming to survivorship. And so this is something that I wish all of my cancer survivors in primary care had come with. It's kind of like when you have kids and you wish they came with like a user's manual. I would love it if all of our cancer survivors came with a user manual back to their primary care provider to say, When were you last seen for a well physical? How often should you do it? Who is your primary care provider? And when are you do next underneath the screening labs up here? There's a section for that maybe I've kind of reduced it down to make it the slide. But all of these different things in along this side. When did you last see your dermatologist? And if you had radiation and you're at increased risk for a skin cancer post radiation, or if you've got skin dryness or itching or irritation, one was the last time you saw the dermatologist. Who is your dermatologist? How often should you be seen? What should you go next? And and having that kind of to do list and then your primary care gets a copy and your oncologist gets a copy. So everybody hopefully is on the same page. And the guidelines for this come off of the various guidelines that are available. They also come off of primary care guidelines. And we also interact with the oncologist to make sure if we're saying when are you going to do your oncology follow up if it's every two months or every six months or every year, we have that on here. So there isn't any confusion. So how do you get one of these nifty do dads? And since not every cancer survivor has opportunities to do this in their setting, live strong actually has an amazing care plan program. It's pretty easy to put in, even if you just do it from memory, like I think I had one of those drugs that starts with an N, and you like tight start typing in and it'll give you kind of a little drop down box. And you're like, oh yeah, that one looks familiar. And you can kind of do a by guess and by golly to make your own. Some people are really great at taking detailed notes, and they can fill it in themselves. And and some people might need to take it partially filled out and take it back to their oncology nurse or nurse practitioner physician and say, can you help me fill in these blanks? And once you fill in those blanks, the rest of it kind of flows. Other treatment summary and care plan templates ASCO has one that's mostly provider oriented. But again, if you were treated historically, maybe, you know, five years ago at Virginia Mason, and you and you want to take this into your oncologist and say, can you help me fill this out? You can download the template and and have them help you with that. And journey forward is another one that's pretty both patient and provider friendly. And then there's our clinic. And I do want to say that I have brought today. We have a young adult survivorship program and regular adult survivorship program, the rest of us. And I do have some of my cards. And one of the things that we that we do provide in addition to the treatment summary and care plan that I find phenomenally helpful is we do have a lot of these a lot of this information resources, who to contact, physical well being, exercise information, glycemic control, all that kind of stuff. We have a survivorship notebook that we tuck that treatment summary and care plan into. And then we usually tuck a lot of like resources into the back pocket for things that are particularly of interested out survivor. Some of the things that are available then those are more my program. And then some of the things that are available to you in general. And any any of the cancer centers have patient libraries. And the patient library should have these resources. Or you can get ahold of the National Cancer Institute and get information about kidney cancer in general. And then kidney cancer and any cancer survivorship, as far as the facing forward book that talks about all the same kind of things that are in our CCA notebook are listed in here as well. And then one of the resources that's available in our resource library and that I've seen around in some others. There is survivor stories that's put out every few years by the kidney cancer.org puts this out and has a lot of different kind of just vignettes of different survivors and what they've gone through what they recommend. There's little recommendations that that they put in like oh if I could do this differently I would have done this or I would have asked this or or you know my advice to someone else might be. And so this is available free of charge through the kidney cancer.org as well. So there's survivorship resources that are available to you even if you don't come to a survivorship program. And I love this one and I'll read it out loud because there's a lot of words up there. It says doctor I don't feel well and I'm not sure why. And it says I want you to meditate for 20 minutes twice a day. Exercise for at least 30 minutes a day. Avoid processed foods eat plenty of organic fruit and vegetables spend more time in nature and less indoors. Stop worrying about things you can't control and ditch your TV. Come back and see me in three weeks which I just absolutely love because if we all did this we would all feel better. Right. And so one of the things that I really really encourage you to do is look at the things that you can control. Can you learn some deep breathing relaxation exercises. So when you are getting ready to go into that CT scanner instead of just going in there you know like we all think about like the cat not wanting to go into the vet you know if we if we can if we can like lay down there on that on that machine and do some then deep breathing and lower our blood pressure and go through there that is going to really make a difference in that 10 minutes or that 15 minutes or on the night before the scan to be able to do that deep relaxation breathing and actually get a good night's sleep. If we can talk with our loved ones and say so okay so the body's not what it was you know before this cancer treatment but you still love me and let's talk about it and you know how can we maybe be physical again or or where are we at with that. If we can figure out social support networks and say am I a person who likes to be in a group setting or am I a person who wants to learn something on the internet behind the computer in my jammies. You know what what's going to work for me to get some social support under my belt. Who can I talk to. Who can I depend on to bring me a meal if I know that I've got to go through that next round of chemotherapy and I'm just not sure I can take good care of myself. So all of those things that we have some control of ourselves I would really encourage you to look at those because there's so many things you don't have control of right. It's like no matter what but especially with a cancer diagnosis there's just some things that you're not going to be in control of. So what can you control. What can you do. What techniques can you learn so that day to day to day you feel a little bit better and a little bit better and a little more in control. Ask questions get second opinions seek out appropriate resources and really do this good self care and get some good questions answered with good solid answers. And so you don't have to kind of go round and round that traffic circle. Learn to manage your survivorship and really be in the driver seat so that you can move forward and be as healthy as possible in your survivorship. Thank you.