Malignant Gliomas: Understanding Brain Tumors Webcast June 18, 2008 Daniel Silbergeld, M.D. Cynthia Cottle-Bailess, R.N.

Transcription

1 Malignant Gliomas: Understanding Brain Tumors Webcast June 18, 2008 Daniel Silbergeld, M.D. Cynthia Cottle-Bailess, R.N. Please remember the opinions expressed on Patient Power are not necessarily the views of Seattle Cancer Care Alliance, its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That s how you ll get care that s most appropriate for you. Introduction Hello. Welcome back to Patient Power sponsored by the Seattle Cancer Care Alliance. I m Andrew Schorr. One of the things that s been very much in the news lately is brain cancer, and of course Senator Ted Kennedy from Massachusetts was diagnosed with a tumor in his brain, chose to have surgery, and then he ll be having, I believe, chemotherapy and radiation. So it s brought it very much to the forefront. Of course there are people every day who are diagnosed with this, treated, many have surgery, some don t, some have a variety of treatments that come together. We d like to delve into the deeper to give information for our patients and for families that are confronting this, so with us today is Dr. Daniel Silbergeld, and he is a professor and a Chief of Neurological Surgery at the University of Washington in the UW Medical Center, and also joining us is the clinical coordinator in neurosurgery at the University of Washington, and that Cynthia Cottle-Bailess, and I welcome both of them. Dr. Silbergeld, Thank you very much for being with us. Thank you for having us. And Cynthia, thank you for being with us. Thanks Andrew. Okay, well this is very much in the news, and the type of cancer that we ve read about is called glioma. Dr. Silbergeld, what is glioma, and how common is it? Gliomas are a type of tumor, a type of what we would call a primary brain tumor meaning a tumor that starts in the brain and not a tumor that comes from somewhere else and spreads to the brain such as lung cancer can do or breast 1

2 cancer can do. Gliomas grow from the supportive cells in the brain, not the nerve cells, and we don t know what causes these. There have been a lot of theories over the years ranging from high tension wires to cell phones, and none of these have really panned out, so this is something that s not inherited, it s not contagious, and we really don t know where they come from. They are relatively uncommon tumors. To me, that s all I do is brain tumor surgery, it seems like everyone has one, but really they happen to about 6 out of 10,000 people in the United States per year, and about half of those are malignant brain tumors or malignant gliomas. Malignant is kind of a funny word to use as is cancer when it comes to brain tumors because the real definition of a malignant cancer is a cancer that has the ability to spread to other organs and systems, such as lung cancer when it goes to the brain or to the bone, but with brain tumors they don t tend to get out of the brain but they do grow into the brain and they do this by invasion, so they re kind of part and parcel of the brain. They re not separate or encapsulated or well demarcated, and that s what makes surgery and treatment of these of difficult. Signs and Symptoms of Glioma Now Teddy Kennedy had a seizure. What with the potential early signs be, and could there be something before a seizure that could signal that someone is developing one of these tumors? Well, it s really dependent on where the tumor is and what piece of the brain gets irritated that causes the seizure or gets injured and causes the deficit problem that the patient or someone near the patient would notice, and I ve seen really large tumors bigger than a grapefruit that have no symptoms at all and get picked up because someone gets an MRI or CT for a sinus problem, and I ve seen really small tumors the size of a pea that get picked up because they re very symptomatic. So it really depends on where the tumor decides to start growing and how much it enters the brain and how quickly it enters the brain. We often think of cancer as primarily a disease of people as they get older with aging. What about in these types of brain tumors, where does age come in? It s interesting. It really depends on what type of brain tumor we re talking about. So brain tumors are actually very common in children, but the type of tumor that Senator Kennedy has for instance is more typical in older patients. We typically see them in the 50s and 60s. 2

3 We think, I know in the case of breast cancer, as somebody much older often then these cells divide more slowly and can be less aggressive, if you will. Does age matter as far as how aggressive these brain tumors are? Age makes a great deal of difference, so in general it s better to be younger, and in general it s better to have the better neurologic status at the time of surgery, and those are kind of the two most important things, and unfortunately those are things that we can t change when a patient walks in the door. No one can make Senator Kennedy or any other patient any younger, and no one can make their neurologic deficits magically go away, but those are the two most important clinical factors. So it s better to be younger until you get really young, and then it s not good anymore, but in general the older patients don t tend to do as well, and no one really knows why that is. Treatment Approaches Okay. So somebody has a seizure, as he did or what ever symptoms, and its seen on imaging what you re dealing with. How do you decide what to do next? Is everybody a candidate for surgery, and if so how do you decide how to approach it? In general there are really three options. The first thing we want to do is we want to establish that it is a tumor, so we want to get the appropriate imaging studies such as MRI scans and sometimes special types of MRI scans that show us the chemical signature of this particular tumor so that we can be sure that it s a tumor and choose the right course of action, but in general when I see a patient there are three options. One option is to do nothing, meaning let s just ignore this thing and not take risks of doing something about it, and the good thing about that is you don t have to do something, but the bad thing is that we don t find out what it is and we don t deal with it. The second option is a biopsy, and in almost all brain tumors we are able to obtain a biopsy, and a biopsy means that we can get a small amount of tissue in order to get a diagnosis for what kind of tumor it is and what grade a tumor it is. The type tells us what type of cell it arose from, and the grade tells us how benign it is or how malignant it is and really more accurately tells us how fast or slow growing, how aggressive this is. The third option, which is surgery, really depends on the location of this. Because these tumors grow by invasion, removing a primary brain tumor means removing a piece of brain that has tumor cells in it. So when I look at an MRI scan I don t think, 3

4 can I take the tumor out, I think, can I take out that piece of brain without causing the patient a problem? That s also what determines what tools are needed for surgery. So for instance in Ted Kennedy s case it was decided that he needed an awake operation because his tumor was considered to be near language. So when I look at the scan I say, is this near language, is this near movement, is this near sensation, what type of testing and what type of tools will I need during the operation to leave those important areas alone and yet take out as much of the tumor as I can? Sometimes the tumor can be right in those areas even though the person isn t having a problem with that. So it can be in the language area and removing it would mean damaging language function badly, so we can get in and do a lot of mapping and find that where language is and not be able to take much tumor out, and other days we find out that language is far away, and we can get most or all of the tumor out that we can see on the MRI scan. Dr. Silbergeld, how often is there a debate among doctors, like if someone gets a second opinion, whether surgery is worth it or say because Teddy Kennedy kind of shopped around a little and there seemed to be differences of opinion. So whether something is operable, how do you come to a conclusion about that? I think there are a number of different factors that come into play. I think of course there are different interpretations of the scans; there are patients who have different wishes or hear things slightly differently and change their mind. There are also different tools that are available to different surgeons. So, for instance, we do awake operations every week here at the University of Washington. There are other academic centers that do no awake surgery, and it s not something that s new. It was actually invented in the 1940s up in Montreal and really became popularized in the 1950s and 1960s. So it s something that s been around for a while, but it s something that takes a certain amount of training and a certain amount of manpower and tools and so forth, and I think that after he had the biopsy Ted Kennedy s team looked around and talk to different neurosurgeons and decided that there was a surgical option and looked at the places that did awake surgery with intraoperative language mapping. Coordinating Care and Support Let s bring Cynthia Cottle-Bailess, the clinical coordinator for neurosurgery into the discussion. Cynthia, help us understand how there is a multidisciplinary team that actually takes on someone s case should they become a patient at the Seattle Cancer Care Alliance at the University of Washington. We have an eminent neurosurgeon in the case of Dr. Silbergeld, but there are others who come into play 4

5 as well, and we ve talked about imaging, and I imagine often there may be a medical oncologist or others. Help us understand how all that s coordinated and who some of the players are. Oh sure Andrew. We have a large team, which includes neurosurgeons, neuro oncologist, radiation oncologists, and neuropathologist. When we get referrals from a patient or family member or outside physician we look over the records. We make sure that they have current imaging, CT scans, MRI scans. We get a history. We like to get as much information as we can, and then we present these patient cases at our interdisciplinary tumor board that meets weekly, and there are about 15 to 20 practitioners in that group. We review the imaging studies, and then we talk about possible recommendations whether it s surgery, if they ve had surgery somewhere else and want a second opinion for further treatment, we have clinical trials. So they get everyone s input, and then we can schedule those patients to come to the clinic where we all see patients in the same facility in the same clinic so that if after they see Dr. Silbergeld and have surgery they might need to have radiation or chemotherapy afterwards that we have those doctors and our clinic that will also see that patient and family on the same day. Patients really like that, so when they come in after surgery they find out their pathology, we talk about the options, they meet with the other clinicians, and when they leave that day they have a plan, and that really helps. Follow-up and Recovery Right I m sure it does. Dr. Silbergeld, you probably get asked this question probably a zillion times a week, and in your career people say, Okay doctor, so you re going to try to cut out as much as you can and you have these other modalities that come into play as well, perhaps chemotherapy and/or radiation, what are my chances? How long can I live? In all cases of brain tumors they are very serious, and how do we plan? How do we know? Knowing every case is different, how do you guide people through to have reasonable expectations? I think that s a really good question. First of all when we talk about pathology and prognosis with the patient I always tell the patient this is your tumor, and no one s had your tumor before, and no one s going to have it again, and when we tell you an average prognosis it doesn t mean that s how long you re going to live, it means that the average, and people do much better than average and much worse than average, and we don t know. So I think in a way that s hope, but in a way he we are very concrete and say here s the average length of survival with this particular tumor. So I think it s important for patients to know, but I think it s also important for them to know that this is really an estimate, a guesstimate. I think in terms how 5

6 long we expect someone to live, again it depends on age and performance status. It also depends on the final pathology. So Senator Kennedy s tumor for instance we know it s a malignant glioma, but there are a number of different types of malignant gliomas, and there is a large degree of variation or variants in terms of how long we would expect someone to live with one of those types of tumors versus another. So it really varies a lot. In terms of postoperative therapy, most malignant gliomas are treated with radiation, and this is radiation that takes 30 to 32 days to deliver, so it s five days a week for somewhere around six weeks. This is something that most patients tolerate pretty well. Some people get a little tired out. Some people have a headache. Some get a little bit of a sunburn, but it s basically tolerated very well. In addition to that, some patients are treated with chemotherapy either during the radiation or after the radiation, and what type of chemotherapy and exactly how it s arranged in terms of the radiation related depends on what type of tumor it is. So it s hard to try to generalize and say we always use this or always use that, but in general most malignant gliomas are treated with both radiation and chemotherapy after the surgery or biopsy. Okay, now that leads to my next question. Here s one that actually was submitted by Nicole in Altoona, Pennsylvania. She said, I ve heard that stage IV gliomas can return quickly even within a few weeks. If this is the case, and is it, are MRIs done every few weeks to monitor that? Dr. Silbergeld? That is a good question. That actually depends partly on what the treatment is, but we always get a scan before surgery, immediately after surgery, and then at the end of the radiation unless there are new symptoms that develop. So six weeks after the radiation starts we get another scan, and then depending on the cycles of chemotherapy and how they re set up, that determines how frequently we get scans, but typically we get them somewhere between every 8 to 15 weeks. Okay. Here s another question in the monitoring arena, and that is, is there anything put off by these brain malignancies, any kind of protein or biomarker where you have a biomarker or test to measure are they developing again and to what extent? There may be. At this point we haven t identified one, and there are a number of biomarkers that have been identified for other types of tumors such as breast and colon cancer and prostate cancer, but with brain tumors we haven t identified a unique protein or marker where we can get spinal fluid or get blood and say Oh, the 6

7 tumor must be growing because this is increasing. So hopefully that s something that we ll be able to find in the future, but at this point we are stuck with the answer no. Cynthia, postoperatively, if someone does have surgery then what can their expectations be as far as recovery goes, how quickly can it go, and does it vary by age? How do you tell people to plan? When I meet with them before surgery, we ve talk about our average length of stay in the hospital is about three days, and when they go home they are going to be up walking around and doing things pretty much like they were before. I try to help them prepare so that they can get their house stocked, get things done so when they do go home they can just rest and focus on recovery and have some sort of support system in place. Then we usually tell them they can take a couple of weeks off work and then depending on what additional therapies they ll get they kind of change from their What about traveling? Let s say somebody says, Boy maybe I should take that trip that I always wanted to take. Could they get on a plane? Can they drive? What about that? I know it varies, but generally. We have patients that fly in from all over the country here to have surgery so then they fly home. Again, depending on what kind of additional therapies, if they are going to be having chemo, a lot of the chemotherapy is oral or a tablet, a pill that you take by mouth, so if they want to travel they can. With the radiation, they pretty much have to stay put. Some of the radiation is daily Monday through Friday for about six weeks so it s a little harder for them to travel, but usually with the chemo they can travel depending on their cycles and when they re going to get their follow-up scans. So we work with them on that. Dr. Silbergeld, sometimes cancer shows up again as a recurrence. Are other surgeries needed? How do you monitor for that? How do you handle that when it occurs? I think that treatment of recurrence is really based on where the tumor recurs. Usually there are a number of options available, and here we have a number of physicians who come in and talk to the patient together. If more radiation is an option, then we would go in with a radiation oncologist and say radiation is an option and surgery as an option and perhaps other chemotherapy is an option, but it s good to have options, and it s good for patients to choose their own options. I 7

8 think a lot of cancer care is really a pact that you make with the patient to keep them informed and to try to understand how aggressive they want to be, how much risk they re willing to take, how much risk they want to avoid, and I think that that s part of taking care of patients with tumors. In terms of recurrence and surgery, the most I ve operated on someone is 14 times, so you can operate on someone a lot of times depending on where the tumor recurs, and that was a patient who would come in and have a recurrence and say, Let s go, I m ready. My bags are packed, but other patients are more risk aversive or surgery aversive. They say, Boy I ve done that, and it was really hard. What else can I do instead of surgery? So it really depends partly on the patient s personal experience and the patient s personal attitude, but surgery is often an option at the time of recurrence. Future Goals in Treatment of Glioma Dr. Silbergeld, I think everybody knows that a diagnosis of brain cancer is not a good diagnosis, so you worry about the future. You have many clinical trials at the University of Washington, and it s one of the hallmarks. You re a leading research institution. Give us a little window into what you re looking into now and what your hope is so that you can do better in the treatment of glioma. I think you hit the nail on the head. I mean, I think our goal is really to do better, and I think the amount of headway we ve really made clinically in terms of patient survival has been small. Even over the past couple of decades when we ve gotten lots of new knowledge from laboratories around the world, it hasn t translated clearly into a survival advantage, which is what we re really aiming for. It s hard to take an idea to the lab, to the clinical trial, and then actually get things approved and get things moving. There are a lot of steps along that road. Here we always have a number of clinical trials up and running, and we try to encourage all patients who are eligible to participate. The good thing about trials is they offer hope. The bad thing is we don t know if they re better than standard care. It s a risk in that sense, and so again it depends on the patient s personality. Are they satisfied with the standard care? Is that what they want to go for, or would they say, You know I really want to try something that could be better. There are a lot of new things on the horizon. There are drug therapies that are pumped directly into the brain called convection-enhanced delivery, and we have one of those trials up and running. There are vaccine trials, and we are participating in two of them. So there are a number of different trials. Most of the trials involve chemotherapy of some sort either delivered into the brain or delivered orally or by vein. 8

9 Surgery and radiation have both been kind of optimized, so I don t think we re going to make a lot of headway in terms of giving radiation better or giving a little more or a little less and seeing a different outcome. The same with surgery. Our goal, my goal as a surgeon is to maximize the safety and maximize the extent of resection or how much of the tumor I can remove. Because these tumors grow by invasion, I never get all of the tumor out. Even if I take 99.9% of the tumor out, I m leaving over a million tumor cells, which is a lot of tumor cells to ask my colleagues in radiation and neuro-oncology to deal with. So our goal is to find something better, and most of those things that were looking at involve chemotherapy and our neuro-oncologists. Of course we wish you well. Now Cynthia, I m sure that this discussion of clinical trials comes up as they meet with you as well. How do you help people sort through what their clinical trials options are and how that ties in with standard care? Who helps him with that? Ultimately it s their decision. Right. Well Andrew what we do is, like I said, we review all the cases at our tumor board, and then we have them scheduled to meet with the neuro-oncologist and the radiation oncologist and then we have an oncology nurse practitioner and a nurse that meets with them also. So they go over in more detail what different trials would involve, and that kind of helps them to decide. Right, but they re not alone. Now the other thing though is about not being alone is that brain cancers are rare. A family is now touched by it. You have a lot of worried people there in front of you. What support is offered? How can they connect with other families who have been down this road or counselors? What does the University of Washington and Seattle Cancer Care Alliance have to help them? We have a brain tumor support group that meets monthly for patients and family members, and we also give them written material brochures. We try to connect them with the American Brain Tumor Association. They have a brain tumor survivor s network that s available to the patient, which they have conferences that they can go to or they can get on the Internet, and there are some programs. There s a brain tumor injury rehab program that were offering at the UW I believe it s the middle of this month. So there are some people they can draw support from. They have access to the nurses in our clinic and then we do have social workers in both facilities that are available for the patients and families. So Dr. Silbergeld, as we started we mentioned how when a very prominent US senator gets diagnosed with one of these it brings a lot of attention to the public. 9

10 So you are in the trenches with your team there hoping to do better. When you look in the future, you have to do better. Can we hopefully in the years to come have a discussion about this with a much better outlook? How do you feel about it because you ve been working towards change? Are you optimistic? How do you view the future? I think to be a glioma surgeon you have to be an optimist. That s really the short answer, but I think it really takes time to translate knowledge to patient care, and I think that time gap is what we are seeing. So we have a lot of new genetic knowledge and we have a lot of new immunology knowledge, but that knowledge to translate it to medications or to translate it to therapies takes time. I think in the long run there will be less surgery done, and there will be more reliance on these new therapies. I think hopefully that will happen within my career, but I think certainly it will happen within the next few years. I think it s something everyone in glioma care looks forward to. I think it s hard to tell patients this is the best we can do because of course we want to do better, and I think that the more common tumors which have been studied more intensely by more people such as breast cancer have really had a more quick translation from the laboratory research to patient care, and I think it s a matter of time before we can do the same for brain tumors, and personally I think it will be great. I have one other question for you. When someone is diagnosed with something like this, as we talked about earlier, there can be differences of opinion. What s your point of view on people getting second opinions either getting a second opinion after you ve given one or coming to you maybe from afar to say, Dr. Silbergeld, what do you think? I always tell patients get other opinions. If it was your car you get another opinion. I d say it s not going to hurt my feelings. I think that that s really pretty obvious to patients. I think different patients have different attitudes. Some come in having done a lot of Internet research and talked to other patients, and they ve pretty much made a decision. Others are just finding out that there is a brain tumor there, and they are just starting to kind of wet their feet out about what they wanted do, and those patients often benefit from hearing from other people. I think the important thing in terms of getting brain tumors treated is to avoid things that are risky, trials that are risky, treatments that are risky, and to avoid things that are going to break the bank. There s no secret out there. No one has the treatment that so much better than the standard of care or we d all be doing it, and of course a patient or family member can get on the Internet and find things that are touted as being wonderful and so much better than what s available, but I think that it s clear that that s not true. 10

11 I always encourage patients to go to other cancer centers or to go to other brain tumor centers where they have trials, where they have experience treating brain tumors, rather than going to an individual someplace that has an expensive new therapy that other people aren t using. Yes, excellent point. The last thing I d ask you about, and I know it varies by patient, is about speed. So when somebody is diagnosed with a cancer they want it out. Related to your experience with gliomas, is it important to maybe get to surgery within a week or two weeks or a month? How long do you have or the range that people might have to make a well-informed decision? I think with malignant gliomas the clock is not on your side in terms of waiting to have surgery. With other brain tumors it s much more elective that you can take your time and get many opinions from different people. I think there is a risk with waiting especially if there is compromise of some function. So if someone has language problems and they wait, their language problems could become worse to the point where mapping wouldn t be possible because we need a patient who can cooperate and who can name things because that s how we do the language testing during surgery is an object naming test. So it partly depends on where it is, it partly depends on how big it is, but I think we tend to try to get people in within a week to 10 days, and I think most of the larger centers do. I think waiting a month or waiting six weeks can carry a pretty big risk in terms of developing new deficits or worsening deficits the patient already has. One last question for Cynthia. Cynthia, you ve been at this a long time. You ve seen a lot of families come through and a lot of patients like maybe that gentleman who has had 14 surgeries. I m sure you come away with this really being impressed with the courage of a lot of these people. I think a lot of these folks they are incredible. Their families are incredible. They have to take on different roles, and I am just privileged to take a part of that to just really help them live the best possible quality of life for the longest period of time, and to be a part of that is a privilege to work with them. Well, I want to thank you for all you do and all you ve done for many years in helping coordinate the big team you have and the options for people helping them understand and know that there are people there for them. Dr. Silbergeld, I wish you all the best. I hope that there will be during your career the breakthroughs that we can all dream about that can make a big difference with this and hopefully now maybe with yet more attention on glioma whether its federal funds or more scientific resources or what ever can happen to hopefully make a big difference 11

12 because I know you d rather be out of business as a surgeon and do something else if you could that would mean people would have longer healthier lives. Thank you so much for being with us. Thank you Andrew. Yes thanks for having us. You ve been listening to Patient Power. This is what we do every two weeks sponsored by the Seattle Cancer Care Alliance. I want to thank Dr. Daniel Silbergeld, Chiefs of neurological surgery at the University of Washington for being with us and also Cynthia Cottle-Bailess who is the clinical coordinator of neurosurgery. We ll be back in two weeks when we talk about empowering the cancer survivor and our guest will be Dr. Karen Syrjala. For the Seattle Cancer Care Alliance and Patient Power I m Andrew Schorr wishing you all the best. Please remember the opinions expressed on Patient Power are not necessarily the views of Seattle Cancer Care Alliance, its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That s how you ll get care that s most appropriate for you. 12