Andrew Schorr: What treatment have you had, Gaye, then in that interim four years? What's happened?

Transcription

1 Navigating Sarcoma Treatments Health Radio June 20, 2007 Christopher Ryan, M.D. Kevin Norwood, M.D. Angela Lim, LICSW, OSW-C Gaye Johnson Please remember the opinions expressed on Patient Power are not necessarily the views of Health Radio, our sponsors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion you re your own doctor, that s how you ll get care that s most appropriate for you. Introduction Thank you for being with us once again on Patient Power. Andrew Schorr here, cancer survivor particularly devoted to people learning the latest about various cancer survivor, but we cover all kinds of chronic conditions and health issues day after day. It's the only program on radio or on the internet where we do this, and we hope you can join us and listen regularly because there's certainly information for you and your family. All this week we've been talking about not a common but certainly a very serious cancer called sarcoma that affects soft tissue, sometimes connective tissue, sometimes bone, and it is not all that common, and so typically people eventually get, when they get an accurate diagnosis, to a specialist and then that starts a long treatment regime and often with a heavy emotional overlay, too. What is this cancer? How am I going to get through these pretty heavy-duty treatments? And then what happens to my life after that? Well, today's program in our series of sarcoma programs with help also from the Northwest Sarcoma Foundation and also the Sarcoma Alliance, and thanks to them, today's program is to really help understand navigating treatments. That's what it's all about. And we'd like to connect you with some experts and also someone who has been living through it. So let's start with a patient first, an adult patient. And that is Gaye Johnson. Thank you so much, Gaye. Gaye is joining us from Fox Island near Tacoma, Washington, and Gaye, I know that you were diagnosed when you were 56, four years ago. Tell us about how that diagnosis happened. Gaye s Story I think it's fairly common that it's a difficult diagnosis to make. I went to my internist for my regular appointment with a complaint of a lump in my left thigh. It was sore, and he diagnosed it as a lipoma, just a fatty tumor that should be left alone. I returned to him in 1

2 a week because I had frequently cycling fevers and more pain. He sent me for a biopsy, and actually two of the three radiologists said that this was not an important lump. One of the radiologists felt very strongly that it was sarcoma, so I was fortunately referred to Chappie Conrad in Seattle at the University of Washington, the Seattle Cancer Care Alliance. That really set off a whole series of events because suddenly I was faced with a life change. We researched Dr. Conrad's expertise and the Seattle protocol because we wanted to make sure I was going to get the best treatment and felt very fortunate. We realized that Dr. Conrad was an exceptional person and had a reputation that really gave me a lot of confidence to go ahead and start the procedure at the Seattle Cancer Care Alliance. What treatment have you had, Gaye, then in that interim four years? What's happened? The protocol there is for six rounds of chemotherapy, surgery and radiation. And when I went through it, I don't know if this has changed, it was four rounds of chemotherapy, surgical removal of what was left of the tumor, and then two more chemotherapy treatments and about seven weeks of radiation. Dr. Conrad said your life will change in a day and will be different for the next year, and he was right. That was a very lengthy procedure. Chemotherapy involves staying in the hospital for five days. It's 96 hours of continuous infusion. I think one of the things that really benefited me was that I asked for the name and phone number of someone who had gone through this treatment, a survivor who had gone through the same procedure. She was very helpful to me and since I have completed my treatment I've given my name and number to someone who then was able to talk to me throughout her treatment. I think that was very helpful. Oh, yeah. I know it was for me as a leukemia survivor. So what's your status now, Gaye? I will be out four years in August from the diagnosis, and all the tests have been clear. Wow. That is good news, and I'm sure you're an inspiration to our listeners and those people you've talked to on the phone as well. So what's your outlook going forward? Cure. Absolutely. 2

3 Amen. Amen. Yes, absolutely. I don't anticipate a recurrence. There's been no indication that there will be, but I'm just a very, very grateful survivor at this point. Sarcoma Treatments I'm sure you are. Well, let's meet a physician who specializes in sarcoma. We'll have Dr. Chappie Conrad later in the week, your doctor, but we're going to move down to Oregon here to Dr. Christopher Ryan, who is assistant professor of medicine and interim associate director of clinical research at Oregon Health and Science University in Portland. Thank you so much for being with us, Dr. Ryan. Dr. Ryan: Thank you. I know you specialize in part in sarcoma, and so you hear Gaye come in, her world has turned upside down, and it's great to hear that now there's no sign of the sarcoma. Doesn't always go that way, and typically the treatment is pretty difficult. Tell us, typically, let's start with adults and there are different types of sarcoma, recognizing this, but the treatment regime is not easy and it does change people's world. Tell us a little bit about what the treatments are typically. Dr. Ryan: Well, as you mention, there are many different types of sarcoma, and that's one of the challenges for this decease, I should say diseases, because sarcoma encompasses several dozen different types, some of which are treated radically differently. But in general most of the treatments are quite rigorous, often involving surgery, sometimes with the addition of radiation and sometimes with the addition of chemotherapy. And some of these regimens can be quite extensive and long, as Gaye had described, numerous cycles in the hospital with pretty strong chemotherapy drugs. Unfortunately, because of the rarity of sarcoma I think we are many years behind some of the other more popular cancers, if you will, so still our most effective chemotherapy drugs are some of our oldest, most toxic, old-fashioned in some ways chemotherapy drugs because the drug development has not been as robust as with more common cancers. So because of this these older drugs tend to be more involved in terms of side effects, often require administration in the hospital and so forth. So what Gaye described, the long course of chemotherapy initially followed by surgery and radiation, perhaps more 3

4 chemotherapy afterwards that can span six months or more in some cases, is a typical regimen for a good proportion of bone and soft tissue sarcoma. But there again it's a wide variety, and of course it varies from patient to patient in terms of the type of sarcoma, the aggressiveness and the type of surgery and chemo necessary. Okay. Dr. Christopher Ryan, we're going to take a break, and Gaye Johnson with us from the Tacoma, Washington area and Dr. Ryan down in Portland, Oregon. And after the break, we're going to meet a social worker, Angela Lim from the Seattle Cancer Care Alliance, and we'll hear about that side of it too, helping families and patients cope as you go through treatment. Lots more to talk about live as we continue our discussion all week about sarcoma on Patient Power. We'll be right back. A Social Worker s Perspective Welcome back to Patient Power live on Health Radio. Andrew Schorr here. Now, think about it. If you had a lump in your arm or your back or a pain in your bone somewhere and you went to the doctor and you were told, well, we're going to take a look at that, it's probably nothing. And then it comes back and it is something, and it's a fairly rare cancer you've never heard of, a sarcoma, your world is turned upside down. And then they say, well, we have traditional chemotherapy agents and maybe there will be some surgery that we're going to do to try to give you back your life, but from point A, diagnosis, to point B, where we hope for a cure or certainly managing the illness well, that's going to be a real journey for you. And that's what Gaye Johnson from near Tacoma, Washington has been through and about 10,000 new cases a year, close to that, between nine and 10,000. That turns your world upside down and maybe your family's too. So let's introduce another guest to our program, and that's Angela Lim. Now, Angela is a social worker who specializes in cancer. And so she works at the Seattle Cancer Care Alliance, which is a partnership between the University of Washington and the Fred Hutchinson Cancer Research Center and the Children's Hospital and Regional Medical Center in Seattle, and so she helps support people as they receive a diagnosis like this and also their families. It must be quite a difficult job sometimes, Angela, and I know you're very skilled at it but you're with people that maybe when their whole world has been turned upside down. Ms. Lim: It is, and for me coming to the Seattle Cancer Care Alliance where we do have the sarcoma multidisciplinary clinic, I hadn't seen so many people with sarcoma in the community, so it was a learning experience for me. And I learned from our patients what things were helpful to them and what were the concerns that they had. 4

5 Okay. So there you are. People are diagnosed with a cancer they may never have heard of. You know, if you said to a woman, well, you're one of whatever the number is now and you've feared it and it's happened and you've been diagnosed with breast cancer, said, okay, I know somebody with that. But if you say sarcoma they may not. Ms. Lim: Right. And it may not have been what they read about at the paper that there was new research and something very promising. We'd like to be reported that more in sarcoma, but we need more funds to help fuel that, and we'll talk about that. So there they are. They're a stranger in a strange land, I say. So how do you help them get a hold of that, particularly as treatment is about to begin? Ms. Lim: Well, the whole team approach is that the role of the social worker oftentimes, especially if it's very early in the diagnosis, is to sit down and sort of hold all of the worries and pull them apart and try to figure out what's the priority. And for many people it's going to be I need to know more about what sarcoma is, what does this treatment mean. They know that they want to embark on this treatment because it's lifesaving, and they don't want to make bad decisions because it's going to be financially difficult or it's going to be inconvenient for them or their family, but those worries are there at the same time. So at the beginning we just try to hold on and gather as much information and help them learn what they need to think about. Then later once they know what the treatment plan is then we can talk about what are the resources that are available that are going to help you pull through this financially and practically. Gaye Johnson, so you got this diagnosis of sarcoma, so you had in your case Dr. Conrad and the team in Seattle say, okay, well, let's talk about the treatment plan and how it's going to turn your world upside down, and we'd like to tell you that there won't be side effects, but unfortunately as Dr. Ryan said with the drugs we use there may well be, but our goal is to beat the cancer, and that's worked out for you so far. But yet there's the whole emotional side of it and how to be--you and your family be strong. How did you do that, and how did you draw on support to get that done? Well, I think that it's just in my nature to see things as projects. I'm a photographer, and that helped somewhat to see a beginning, a middle and an end to a project, and in the midst of that I tried to be as practical as possible. And one of the things I did was, sounds kind of funny but I bought a laminated year-at-a-glance calendar, and I put all the 5

6 chemo, the surgery, the radiation dates on it as they came up. But I also put all the happy occasions, holidays and birthdays and important things that would incorporate that joyful, emotional side to it in my view so I could see where I was in the process. Every time I had chemo I had to also go to St. Joseph's Hospital here near Tacoma for an additional almost nine days because the treatment was very difficult, and I felt in some ways like I had an extended family at both places. So I was really grateful for the care that I got, and I think emotionally that helped a lot. I had a very good friend and a cousin who gave me their life that year and accompanied me to every procedure and every appointment. So I did allow myself to accept help from other people, which is difficult when you're an independent kind of person. I tape recorded meetings with doctors so I could play it back because one of the side effects is that emotionally there is sort of a disconnect. When you hear things that can be frightening sometimes it's helpful to have other ears or to have a recording of it. I'm trying to think of sort of the practical things that I did that could be helpful. I also wanted to say that I took to heart the University of Washington guidelines for hygiene and food handling and got that all set up in my home and my caregivers agreed to follow that also. They were very willing. So that was another very specific project that you control. As specific that I could be following what the protocols were, yes. It was very helpful. Communication While Navigating Treatment So let's go to Dr. Ryan for a minute. So, Dr. Ryan, you're a key part of the team, and obviously you're focused on the medicines you're using, but you're focused on the whole patient too. Any points you'd make as far as what you counsel people in helping them navigate the treatment because again you said these are powerful medicines. You'd love to have the cruise missile for those sarcoma cancer cells to just hit that and not other cells, but you don't have it. Dr. Ryan: Communication is so important with all the member of the team. And as you said the team is very critical especially for sarcomas. We'll dealing with sub subspecialists in the surgical specialties, radiation medicine, medical oncology, like myself, pathologists that make the diagnosis, radiologists who specialize in recognizing the tumors, and the social work and nursing are so vitally important to be able to maintain the communication, help patients navigate the system. Like the University of Washington, here at the OHSU we have a multidisciplinary program. We try to address all these issues, the medical, the 6

7 physical, and the emotional and social issues all at the same time. And that's very critical in moving forward with a treatment like this, a plan that can be so complex, go on for months and months and with and with all the physical and emotional strain associated with that. So I think communication, having a contacts person helping to coordinate treatments and all the other ancillary issues that are vitally important to good outcomes for people. I'll say something just from the patient's perspective, and Gaye, I'm sure you're going to agree with me, but I know I found it in my case. With sarcoma and even in my leukemia, chronic lymphocytic leukemia, it's really critical to connect with specialists in your illness. And then as you heard from Dr. Ryan and understand from Angela and it happened with you, Gaye, there's a whole team typically, in this case maybe academic medical centers where there are subspecialists that are accustomed to this, and they can help you through it as best they can. Gaye, we're going to come back to you after the break. I'm sure you'll have a perspective on that. We're going to take a short break and then we'll continue our discussion about sarcoma on Patient Power. Thank you for being with us on Patient Power today. So we're trying something new. All week we're delving into a less common cancer, but it's a good illustration of what if your world got turned upside down with a diagnosis you've never heard of, either for yourself or a loved one and included in that, even a child. And that happens over 9,000 times a year in the US. That's not a lot, but if it's you it's a huge change. And the diagnosis is sarcoma, and there are different types. As Dr. Christopher Ryan, medical oncologist from Oregon Health and Science University in Portland, Oregon was telling us it may be many different diseases, different types, and so they become increasingly rare. And so what does that mean what that happens? So first of all if it happens to you as an adult you may have responsibilities in the family. You may have a job. You may also have children or your job is at home with the kids. Or it may be your child. So let's go back to Angela Lim, who is an oncology social worker at the Seattle Cancer Care Alliance. Angela, how do you help people through that? They have their own worries, and part of that may be parenting or job or both and their own future. So we think of it, you've got the diagnosis. Am I going to beat the cancer? But then you think, oh, my goodness what about my daily routine and my hope for being with loved ones, people I care about long term? How do you help them with that? Ms. Lim: I think that that is a big worry for folks, and Gaye pointed out you sort of think of who can I accept help from? And everybody has their own experience in their family about what cancer means when they hear that word. And children have their own perspective 7

8 on it, and it depends on their age. So whether it's the child who has cancer or their brother or sister who has cancer or their parent who has cancer, children have special needs. And I think for parents with cancer they're so aware of that, and they're so worried that the cancer experience that is in their family is going to somehow be harmful to their children. I think handled well it can actually be a great learning experience for a family and for a child to really learn some compassion and learn from their family how they're going to deal with adversity. So if a parent is concerned about how their children are affected by cancer I really do want them to try to connect to a social worker. There's another specialty in a large treatment center that's called a child life specialist, and these are folks who have a lot of experience with child development, both social work and child life specialists, and can help parents to figure out where their child is in the learning and what they can understand about the cancer experience. For kids it's really all about keeping their world as much the same as possible. So if a parent is going to go through cancer treatment then you have to plan for who is going to take care of your kids when you can't do that yourself. And you also want to talk to your kids about what to expect with the changes that are going to happen in the home because somebody is sick with cancer. And then you want to give opportunities for the kids to be kids so you want to connect with your neighbors and your friends and your families to help you out with your kids during cancer treatments. Care for Children Well, I think we've got a pediatric oncologist with us now, Dr. Kevin Norwood, are you with us? Dr. Norwood: Yes, sir. Welcome, okay. Well, Dr. Kevin Norwood is a pediatric oncologist with Legacy Emanuel, down in Portland. And you deal with children with cancer, and certainly while sarcoma is very rare in children it is devastating when there's that diagnosis for the kid and the family. So we've been talking about navigating treatment. Dr. Christopher Ryan, who you know, an adult oncologist, was talking earlier about how the treatment it difficult. And so how do you help kids? Where are we now with treatment in children? Recognizing that there's Ewing's sarcoma and osteosarcoma, different types, help us understand what the treatments are and how your team there at Legacy Emanuel helps people through it. 8

9 Dr. Norwood: Well, we are providing care, and it's usually multidisciplinary, meaning that there will be for the child an initial biopsy and surgery. There will be then therapy with medicines being chemotherapy or potentially radiation therapy if the tumor is sensitive to radiation. How we help children get through it is we provide, I think for this discussion today, we provide central venous catheters such as a Port-a-Cath or a Hickman catheter that goes in and it's used to provide, administer chemotherapy or to provide other medicines, antibiotics if they have fevers as well as to draw out blood, to do a lot of the blood samples that we have to do, trying to eliminate frequent IV starts in children and in the trauma that's caused by that. Along with that care, though, to try to alleviate stressors we do provide sedation for any procedures that are done and any diagnostic imaging that is done in the work-up initially so that the children are not as traumatized. Also in the beginning a child may undergo, say, for a portion of their work-up bone marrow aspiration or biopsy looking to see if the disease is in their bone marrow. Children this day and age are sedated for that, and by trying to provide that care we're hopefully trying to reduce the amount of stress that they have so that when nurses or doctors walk into the room they are not so anxious. Other things that were previously mentioned is Child Life, which is pretty much savior in trying to distract the child. We also do provide, though, art therapy as well as pet therapy as distractors. And then in general they will need usually what will be discussed I think later in the week, other ancillary care such as physical therapy, occupational therapy, and those are provided to maintain strength and endurance throughout their hospitalization as well as recovery phase. So it's definitely multidisciplinary to try to take care of a sarcoma patient. Yes, it is. Dr. Norwood: In reference to children, at least in my experience, we very much try to make it as nontraumatic as possible since we know that it is going to be a long course. Most courses are at least about a year, and so to do that day in and day out for a child can be very traumatizing, and so we try to do what we can to eliminate some of those stressors. Tools for Coping I just wanted to point out also, we were talking about support. So there are fortunately some organizations where there are a lot of passionate people trying to help. So for instance the Sarcoma Alliance I'll point out now offers peer-to-peer support to sarcoma 9

10 patients and links them with other patient survivors related to sarcoma subtype, age, sex, etc. And then the Sarcoma Alliance and Northwest Sarcoma Foundation I know are teaming up to provide this program for the US and also for international patients as well. I just want to go over to Gaye for a second. So, Gaye, are you active in those programs because I know you're talking to other patients. Are you active in that kind of peer-to-peer support? I've only done that once and I have not been asked a second time so I'm not sure if anyone else had asked like I had initially for someone to talk to. You will. I know people are going to want to talk to you, and you're talking to a lot of people now. So that kind of connecting with others I imagine is very helpful. One of the things, a component here of my navigation through treatment that was important to me, and I think this is very individual and personal, is the mind-body connection. And I was able to surround myself really with inspiring and humorous books and films and people, TV programs, that kind of thing to keep my spirit elevated, if you will. But you were talking about the word "team," and I would say that embracing the medical teams that I had was key to my recovery. I had a medical team here in Tacoma at St. Joseph, Dr. Frank Senecal was my oncology here, and then Dr. Chappie Conrad in Seattle and that team at the University of Washington. And as I said when I went to treatment I always felt that I was really embracing a family there. I talked to a nutritionist at both places, and I just felt that they were part of my team, as were my friends and family. So when I hear someone who has had a diagnose of cancer of any kind and I know that person, I will send them a note or call and I will say just consider me part of your team. And I think it helps keep you from feeling isolated because what you're going through is totally individual. No one is inside there with you. Angela, I have a question for you. We mentioned in this case with sarcoma that it's something that most people have never heard of, or if they have they either don't know the right information or they don't know much about it. So, let's say, whether it's someone, an adult like Gaye, or it's your child or a child talking to other kids, oh, I've been diagnosed with sarcoma and I'm getting this heavy-duty treatment and I'm not going to feel well but going through a lot but I'll have people helping me. People don't know what to say or they just have it wrong, and you want positive people around you. How can the family anyway engineer positive communication that's supportive and gives people answers so that they can help support you? 10

11 Ms. Lim: Sometimes it comes down to being careful about what you're exposed to. And so if folks are information seekers we encourage them to do that. We want them to use reliable sources. So if they're going to be searching something on the internet we try to connect them to reliable sources like sarcomaalliance.org where the information is kept up to date and is probably going to be more applicable to their situation. If they want to talk to somebody else with a similar experience your medical team probably can help connect you. It's somewhat of an informal process, and they do try to match people up so that you're talking to somebody with a similar type of treatment because sometimes it can be comparing apples and oranges and you don't get the information that you necessarily need. And then sometimes people just take to protecting themselves a little bit and using their extended network so that they don't have to tell their story over and over. As the doctors are pointing out, this is often a year-long treatment and is very intense, so the patient and their immediate family may not have the energy to talk to people all the time. So screening their calls, doing CarePages on the internet, ways where they can let people know what's going on and accept their well wishes without having to individually respond to every message is helpful as well. Let's go to Dr. Ryan. Dr. Ryan, so somebody may typically have chemotherapy, may have surgery, radiation, and so that's kind of a lot to have and withstand over the course of a year with the idea of beating the cancer. And then now this network of people starts to kick in, and they say, well, what about this and what about that? And so people have questions either about the treatment their having, let's say at your medical center, or something somebody read about somewhere that could be outdated, could be inaccurate, may not be proven. How do you recommend people have communication about these clinical issues with their team to really feel confident about the treatment they're getting and kind of separate the wheat from the chaff of what's reliable information and what isn't? Dr. Ryan: Well, again communication is an essential component here. It's very important that patients bring up these questions with the doctor, be open about the things they've found. Sometimes patients are embarrassed about talking, someone's friend has recommended taking a supplement or taking some type of homeopathic therapies. Sometimes patients will do these things without discussing it with the physician because they feel like maybe they're doing things behind the physician's back that they may not approve of. So I think communication is important, really talking about your understanding of the disease, what information they've found and really discussing medical knowledge that we have honestly. 11

12 There are so many things out there that people recommend with good intentions to try, and we don't know if these things help. They haven't been prospectively studied, some of these alternative medicines and so forth. It doesn't mean they can't help, it doesn't mean patients shouldn't try them, we just need to be very open, have good communication about what we know and what patients are doing on the side, if you will. There's so much out there. Most of our drugs that we use, many of our drugs that we use for cancer for example have been discovered in natural sources and so forth, so there's so much out there that could potentially help that hasn't been studied, and that's the dilemma a lot of patients have. They want to do everything within their power to try to beat this disease. And again there's a lot of sources of information out there. I think just being honest and open and up front with the healthcare team, asking some pointed questions, is this a good idea? Is it not a good idea? You just don't know? Is it worth something I should do or should not do? Research and Clinical Trials I want to make a point here too, and I hope you all agree. So we talked earlier, and I made a point before the break, that I found at least when you're diagnosed with something that is less familiar, you don't read about it in the paper all the time, I think it's important to connect--at least have a second opinion and I think in the case of sarcoma connect with a team that sees this much more often, or like in your case, Dr. Ryan, maybe Dr. Norwood, you're involved in research too where you're also looking for the future treatments as well. And we're all in it together. So given that then, Dr. Ryan, if we get to you, let's say, as an adult sarcoma patient, what about clinical trials? Where are you now in working on what could be the treatments of the future? And if someone is diagnosed with sarcoma, and I know you have a nationwide network where you're all collaborating specialists in this, how do we work with you to kind of advance care for the future? Dr. Ryan: I think it's very important to recognize that clinical trials are an essential part of care of cancer patients. All the drugs, breakthrough drugs that we've had that have been approved fortunately mostly for other cancers besides sarcoma in recent years, have been come to fruition because of clinical trials and patient participation. So I see clinical trials as offering tomorrow's treatment today. Obviously we don't know if something is going to be tomorrow's treatment until we try it, but especially in a disease like sarcoma where again we don't have that many great medicines at our disposal, and many of these chemotherapy drugs are quite old chemotherapy drugs, having access to new and hopefully better treatments through clinical trials is a very critically important thing. Dr. Norwood can comment. The ability to treat and cure pediatric cancers and pediatric sarcomas far exceeds what we've been able to do in adults. Almost pediatric patient 12

13 diagnosed with cancer in this country or a very high proportion are being treated as part of clinical trials, and that has been a key to the success of being able to cure many patients with pediatric cancers. We need to duplicate that in adults. And one particular area where we're needing a lot of advancement as particular to sarcoma is what we call the adolescents and young adults. Patients in their late teens and early 20s who are diagnosed with many of the same sarcomas as pediatric patients yet their outcomes are not as good. And there are many social and economic and other factors that go into that poor outcome. One of the things we're studying is why these patients are not doing as well that have the same disease as some of the younger patients with the same type of disease. Dr. Norwood, do you want to make a comment about clinical trials? I know that it's been great that more often younger children are part of trials. Where do you think things are headed there? Dr. Norwood: Well, I would have to say that's why I chose the profession I did really because it sounded very exciting when you look at historically its biggest area is in like leukemia. In the 60s all children died, and now we can offer probably 80, 85 percent chance for cure in a range of leukemias, depending on the type, a little higher, a little lower. But in sarcoma and in all of our tumors we have probably 85 to 90 percent of our patient population going on a clinical trial. Other things that have come about more recently is that we are taking that one step further so to be able to get onto a therapeutic trial we are asking families to consent that they go on a biology study so that the tissues are collected. And a portion of them are sent to the pathologist to make the diagnosis, and another portion of them are sent to institutions around the United States who specialize in the particular tumor type, and they will confirm our diagnosis as well as there is also tissue banking that is going on so that hopefully we can collect a database for future research. So it is really everything that goes on in pediatric cancer care is through a clinical trial. And the largest in this country is the Children's Oncology Group. And for anyone listening one site that I would recommend for pediatrics would be puresearch.org, which basically is a website designed by the Children's Oncology Group specific for families that gives them very good information, and it is one that we recommend all of our children go to for all kinds of tumors, not just sarcomas. And so I believe that clinical research is the way to go. It is everything I do on a day-to-day basis. The difficulty in pediatrics is that when you only have a couple hundred sarcomas in children a year, it takes a while to collect data in an effort to make forward advances. The care is a standardized in general for any patient walking through the door. In most 13

14 any institution in the United States a child is going to get the same care if it's sort of a Children's Oncology Group affiliated institution. So that is nice that no matter where you are at in the country you're going to get very well researched therapy. That is comforting. Dr. Norwood, we're going to have to move on. Dr. Norwood: Sure. Not a problem. But I wish you well with your research. Dr. Christopher Ryan, we're going to get more folks involved in trials, I hope. We want to just thank you for your devotion to people with sarcoma and really advancing care for the future and all you're doing currently down in Portland, both of you. And Angela, I want to thank you for your work at the Seattle Cancer Care Alliance. I'm just going to give the last word real quickly to Gaye Johnson, who right now and I hope forever is in the clear with sarcoma. Gaye, just a brief comment of support you'd want to give to people who are right in the thick of it now. I'll repeat what a friend said to me every single day when she called and that was Keep up the good work. And I think that you take it a day at a time. Sometimes a moment at a time and just break it down. And I just wish the very best for everyone, and I thank you for this opportunity, Andrew. Thank you. The best to you. We're going to continue our series on sarcoma tomorrow so be with us again at this time. And always, remember, knowledge can be the best medicine of all. Andrew Schorr wishing you and your family all the best. Bye-bye. Please remember the opinions expressed on Patient Power are not necessarily the views of Health Radio, our sponsors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion you re your own doctor, that s how you ll get care that s most appropriate for you. 14