Introduction. All Rights Reserved

Transcription

1 Unique Treatment Approaches For Thyroid and Endocrine Cancers Webcast February 25, 2009 David Mankoff, M.D., Ph.D.; Peter Capell, M.D.; Sarah Javid, M.D. Natalie Boisseau; Kim Valdez 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 Welcome to our live webcast where sponsored by the Seattle Cancer Care Alliance we'll discuss thyroid cancer. We have three leading experts who work together as a multidisciplinary team to give people the best, most advanced care. And we'll also introduce you to two patients, one with more advanced thyroid cancer and one who is right in the throes of it now and scheduled for surgery. We welcome your questions. It's all coming up next on Patient Power. Hello. I'm Andrew Schorr broadcasting from Seattle. Welcome to our program on thyroid cancer. Over the course of this program you'll have an opportunity to hear from and ask questions of three leading experts, an endocrine specialist who treats thyroid cancer, a surgeon who specializes in endocrine-related tumors, and a radiology nuclear medicine specialist who is world renowned in both delivering radiation, radioactive therapies and also seeing how these therapies are doing. So you'll get to meet them in just a minute. But always we begin with patients, and we're going to introduce you to two. One woman who was treated first for one kind of cancer and then another cancer, thyroid cancer, was discovered, and in just about three weeks she's scheduled for surgery for that, and she has a lot of things she's working through. It's been quite a rough year for her, dealing with cancer, first one and then another. But we'll be meeting her in just a second. And then another woman who was tired and then having trouble swallowing and then it was discovered that she had thyroid cancer, but then later it was observed that it had spread. And she thought that was really the end of it all, but she has been getting great care, and that's been over five years now and she's doing quite well. I want to just mention about thyroid cancer, and you'll hear it even better from some of the experts, but the thyroid gland is just below your Adams apple in the front of your neck, and it's just a little bigger than a quarter. It's sort of a small butterfly-shaped gland, and it uses iodine from the foods we eat to make essential hormones that regulate metabolism. And often when the cancer develops, and I have to say there have been two young woman that I work with who are producers, 1

2 one with Patient Power and one earlier with me in business, where both these young women in their 20s were diagnosed with thyroid cancer, but it was discovered early. They had surgery, they had radioactive iodine treatment that you'll hear about, and while they continue to take medicine to replace the functions that their thyroid gland used to do, their cancer is gone, they're monitored, and they do quite well. So that's often the way it is with thyroid cancer, although it can spread, and we're going to hear about that in just a minute. First of all I'd like to introduce you to our first patient. That's Natalie Boisseau. She's studying acupuncture. She lives in north Seattle. Natalie, I alluded to your story. You're scheduled for surgery, and we're going to meet your doctor in just a minute, but just a little over a year ago this cancer word crept into your life. What was the first cancer? Natalie s Story Natalie: The first cancer was a soft tissue sarcoma. It's a liposarcoma, and it was in my abdomen. We didn't really know it was there. It was found incidentally because of abdominal pain. My doctor ordered a CAT scan through a lot of appendicitis, and they found a diverticulitis, actually, and they found the tumor, which was the size of a, a little smaller than a football in my abdomen. Wow. Now, Natalie, how old are you now? Natalie: I'm 47 now. And I have a cold. Yeah, it's okay. Well, we hope the cold gets better. You had the surgery and I know radiation for the cancer in your abdomen. Natalie: Right. But there was a follow-up to do a PET scan to look elsewhere in your body after there was some unusual blood tests. So what did they find related to your thyroid? Natalie: Well, I had a PET scan from the knee all the way up to the brain, and they found some abnormal activity at the level of the thyroid. That was sometime in October. Then I got an ultrasound. They found four nodules. They said, well, you could or not have a biopsy, it's really up to you. And I decided to have a biopsy to have peace of mind and actually know what was going on, and they came back positive for papillary carcinoma. 2

3 Right, which we're going to learn about is the most common form of thyroid cancer. Now I want to have you be joined by a woman who I also alluded to a minute ago who has had a more advanced thyroid cancer, and that's Kim Valdez, who joins us from south of Seattle, Puyallup, which we're going to give everybody a spelling test in a minute on how you spell Puyallup. But, Kim, so this has been going on for a while for you. I know you were tired, and then ultimately you were taking supplements and all that, and then ultimately you had trouble swallowing, right? Kim s Story Yes, I did. Every time I went to go eat the simplest or smallest bits of food I'd go to try to swallow and would start choking on my food. So you went to the doctor and you had the various scans, and that turned out to be thyroid cancer. Yes, it did. So you had surgery, and we're going to be talking about surgery today. So they removed the thyroid, and then you had follow-up radiation, and we'll be talking about that. And then you went on your way, but you had some scans, and just before your wedding what did they see? They called me couple days before my wedding and had stated that the chest CT scan that they did a couple weeks prior had showed a couple of black what they called spots on my lungs and actually told me that was it was nothing to worry about, that they would like to see me when I got back from my wedding and my honeymoon and to have a good time and to not worry and to come in and see them within a week or two after I got back, and that's what I did. So you went on the honeymoon, the wedding and honeymoon with Larry. Yes. And then you come back and you see the x-rays and it's more alarming. 3

4 Very alarming. I actually kind of flipped out. I got a little crazy because what I was being shown wasn't what I was told, and of course that just kind of put me into freak-out mode, basically. You took your records and went from this regional hospital to our renowned cancer experts here in the Pacific Northwest, the Seattle Cancer Care Alliance, with the idea that you just wanted to go see the highest level experts that you could. That's just it. I had decided at that moment after leaving the other facility that I was at that I now needed to become my own advocate. And I was scared to death, didn't know what I was going to do, but I originally had started out at the U-Dub. I had heard so many things about the University of Washington and I think what appealed to me most was the fact that they were a learning and teaching type hospital, and I thought that at the time there could be no better place for me to go. So I turned around and called the insurance company and said this is where I want to go and this is what I want to do, and I'm doing it, and that's what led me to Dr. Capell and Dr. Mankoff. All right. We're going to come back to more of your story and Natalie's story along the way, but what I want to do is introduce that doctor that you saw and Natalie has seen him too, and that's Dr. Peter Capell. Dr. Capell is a clinical professor of medicine at the Seattle Cancer Care Alliance and the University of Washington, and his primary focus is the diagnosis and treatment of thyroid gland disorders. Dr. Capell, so we have two stories here. One woman, previous cancer and then maybe some spread or a second cancer developing in her thyroid and is going to undergo surgery. Another woman had surgery and it seems like it has spread elsewhere in her body. But I described the thyroid gland. So tell us, is it typical, is it a very common cancer, and is it usually found early? And if it is found early how is it found? How Common is Thyroid Cancer? Will do. And good evening to everybody. Thyroid cancers are a type of cancer that's being diagnosed with increasing frequency because of the way that it can present and be found. So what you see and what you've heard is the spectrum of the way thyroid cancer presents. Most typically thyroid cancers are found as an incidental finding, a small nodule that was detected because a procedure and a radiology test was done for an entirely different reason. So for example the PET scan that you heard about with Natalie, we know that people have had MRI scans of their spine for arthritis and neck pain and have been found to have incidental thyroid nodules. Ultrasounds for carotid arteries for blockages and somebody finds a thyroid nodule. There are cases where there's a family history so we're more attuned to a certain type of thyroid cancer and we're 4

5 looking for it. But by and large the more typical presentation will be of an incidental thyroid nodule, so almost all thyroid cancers present as a thyroid nodule. Now, thyroid nodules themselves are extraordinarily common. If we look at ultrasounds of individuals, and since this is more a female disease by roughly seven to one, if you look at women in ultrasound, their neck and their thyroid gland in particular, over the age of 50, by that time there is a large number, maybe 40 percent where small thyroid nodules can be found, nodules that are not detected. So that's the typical presentation, and if goes from there to what you heard from Kimberly where there are symptoms. There's a large enough lesion that it starts to compress areas in the neck. It becomes large enough to be seen, and at that point the diagnosis becomes more apparent because of the symptomatology and the presence of larger thyroid lesions. That's what leads to the diagnosis. Now, do we have any idea what causes it? You mentioned, what, seven to one in women. Do we know about that? What Causes Thryoid Cancer? We really don't. We don't understand what it is and issues such as hormone issues, differences there, perhaps differences in chromosomal material and the X chromosomes, but nobody has any idea why this predominates in women. The causes, there are two that are fairly clearly known. One is a prior history of radiation treatments to the head and neck, and it used to be done years ago for children who had acne. We have seen patients who have come from the Chernobyl accident who are exposed to high doses of radiation. People have been treated for other types of cancers, I'm thinking particularly of Hodgkin's disease who have had head and neck radiation, and they clearly have a much higher incidence of experiencing thyroid cancer as a side effect. In addition there are genetic factors. There are family histories of papillary thyroid cancers or follicular thyroid cancers and then there's rare genetic syndromes where we know to look for the presence of thyroid cancer. I'm particularly thinking of a type called the MEN syndrome, or multiple endocrine neoplasia syndrome, where there's a type of thyroid cancer that's a bit unusual but definitely more aggressive that we can now identify by genetic screening. So we know individuals who are likely to get that type of what's called medullary thyroid cancer and actually take children to surgery before they ever develop the cancer because we know that it's coming and it's more aggressive. So it's that type of etiology that we can identify. I have a lot more questions for you, and we're going to be joined by two of your colleagues, a surgeon you work very closely with, Dr. Sarah Javid, and also in the radiology nuclear medicine world Dr. David Mankoff will be joining us. 5

6 We're going to take a short break, and when we come back we'll continue with them, and we'll learn how their modalities come into play for Natalie and even Kim and how this whole team works together so closely and it's so important at the Seattle Cancer Care Alliance. If you want to give us a call and ask a question just call. Or send an to patientpower@seattlecca.org. We'll be right back with much more of our live webcast on Patient Power. Thank you for joining us tonight for a discussion about thyroid and endocrine cancers with three experts who work together at the Seattle Cancer Care Alliance and also two of their patients who have graciously agreed to join in and help bring their story to you. Because you know when you're diagnosed with any cancer you say, you know, this is devastating and it's never happened to anyone else, and of course it's happened to so many and so many are treated well, and you're going to hear those stories tonight. I want to go back to Dr. Capell for a second. So, Dr. Capell, first of all to put into perspective you mentioned those nodules that are found in so many women, most of the time is not cancer? Excellent question, and I want to emphasize that the majority of times nodules that are found on the thyroid are not going to be malignant. And that percentage varies depending upon which study one reads, but somewhere between five to eight percent of thyroid nodules will turn out to be malignant. So the real crux of the issue is not only finding the nodule but identifying whether it's the more typical diagnosis of a benign nodule or whether it would turn out to be malignant, which you identify by looking at the cells under a microscope and seeing what they look like. Okay. Now, to do that you typically need to do a biopsy, right? That's correct. All right. So now we get into biopsies. So sometimes you know that it is definitely, and Natalie mentioned that where the cells came back definitely papillary thyroid cancer. Sometimes definitely not. And sometimes you're not sure, so what do you do then? Well, the issue about the indeterminate thyroid aspirates is one of the areas that I think is open to discussion because people can approach it in different ways. And I think the patient's preferences and input are critical in terms of deciding which way 6

7 to go. So the choices are going to be, you say, well, it's indeterminate and I can't tell you whether it's benign or malignant, and so somebody says, well, I want it out then. And that would be an acceptable choice. More typically we take a look at the degree of concern on the aspiration. How likely does the pathologist think that these cells look malignant? What are our other clues? Has the patient had radiation treatment? Is there a family history? Are there any genetic risk factors? Do we know what the nodule looks like under ultrasound or MRI or CT because sometimes there's appearances that make it more concerning and tip the scales toward either surgery or there's the choice of following. So we will go back and take a look at nodules that we've decided are indeterminate but not necessary in need of surgery and go back and make sure that we don't see any growth of the nodule. So there are ways that we have of trying to define the population that we would lean more toward surgery versus more conservative follow-up, but never to be able to say, gee, I don't think you need to worry but this. We can just leave it alone. All right. Now, someone who works closely with you is a specialist in surgical oncology, and that's Dr. Sarah Javid. So, Dr. Javid, I know that in times someone says either I want it out or I really want to know or it is confirmed like in Natalie's case that these are cancer cells you come into play. Now, we'd like to think there's like a blood test or something like that that just tells you for sure, but I understand that there are times when you're embarking on surgery and you really don't know for sure what you're going to find. When is Surgery Necessary for Thyroid Cancer? That's right. Hello everyone and good evening. So yeah, it does present a diagnostic dilemma sometimes, as Dr. Capell stated. On FNA at times some types of thyroid cancer, particularly papillary thyroid cancer is really fairly easily diagnosed on a needle biopsy because the cells have certain features that really classify it as a malignancy, whereas the other also common type of thyroid cancer, the follicular type of cancers, really cannot be defined as benign or malignant on a needle biopsy, just cells alone, and that's because the definition is really based upon the presence of invasion of the capsule of the nodule or blood vessel invasion within the capsule by cells in the nodule. So that really cannot be diagnosed without removing the half of the thyroid gland within which the nodule is contained. Having said that, some institutions do attempt an intraoperative analyses of the lymph node using what's called an immediate frozen section analysis to take a look to see if they can decipher at that point those two features I stated earlier to see if it is benign or malignant, but that really hasn't panned out to be very successful. There's a high false accurate or false, you know, it's not as accurate as we'd like, so we don't really put a lot of stock in that nor do we routinely perform that. So in the case where someone, in the majority of time when someone has a follicular nodule or neoplasm the majority of those are benign, and the treatment alone is removal 7

8 of that half of the gland. When it does return to cancer, depending on the size and the nature of it many times we have to go back for a second surgery for full treatment to remove the other half of the gland. All right. Now, could there be some people where it was cancer but it was so small that removing half of the thyroid is enough? That's true, and Natalie can speak to that. I know she's been deciding back and forth, and we've talked about both options. Natalie has for instance a very small, it was originally detected on the PET CT, the PET scan she had following her abdominal tumor after that was resected and it showed a six millimeter, which is very small, it's less than a quarter of an inch or so size nodule on the right that lit up, and it was biopsied, and it came back papillary thyroid cancer. The other nodules she has are quite small, even smaller than that on the right side. And you know, frankly it's very acceptable and proven treatment to remove just the half of the thyroid gland for these they're called microscopic or micro invasive papillary cancers or smaller than a centimeter in size, and so we offer that as an option because the survival is the same and certainly that does not commit one to a lifetime of taking thyroid replacement hormones. We're going to talk about that. If somebody has the entire thyroid removed or you've removed as much as you can and then they have follow-up radioactive iodine that we'll talk about in a minute with Dr. Mankoff, then they need to take medication to replace the function that's gone now that their thyroid has been removed or destroyed, right? So that's the question where people may say, well, I really don't want to take pills for the rest of my life. If you can get it all and we feel confident then let's just go with that, right? Uh-huh. All right. Let's bring Natalie back in just for a minute. So, Natalie, this is the very decision-making you're going through, right? Natalie: Yes. What to do about the surgery. If Dr. Javid says, well, they're really small, we can just take those out, do you talk with her and just say stop there? Or having been a cancer patient already you say I don't want to worry about this, just do it, just take it all out. 8

9 Natalie: Well, interestingly enough I'm going more on the side of taking only half out and then having a more thorough pathology done and then based on that depending on the feature of the tumors, having another surgery later. So that's where I stand right now. But you know I would like to avoid the second surgery if I could, so that's what makes me go back and forth just a little bit. But I'm more inclined towards the half because if it turns out that it's very low risk to remove only a half and it turns out to be the way to go after the full pathology then I would appreciate enjoying the benefit of my thyroid functioning normally. But at this point I really don't know what the outcome will be so I'm, it would be my second surgery in a year and I'm also having monitoring of my other cancer, so there's always the loom of future surgeries coming up, and that's what makes me hesitate right now. Right. You've been through quite a lot. It's been implied, and Dr. Javid, you can confirm this, so half the thyroid does produce enough hormone for your body to use, right? Enough to, yeah. So you can get by with that, right? Yeah. Okay. So what I take away from your discussion here is that we don't have a perfect test and that if the tumors are suspicious enough or depending upon the confirmed biopsy results you need to do surgery to investigate further, and depending upon what type of surgery you do you may need to come back and do more. That's right. And that's a discussion with the patient. That's right. All right. Now, we talked about this multidisciplinary team, and we're going to meet a third member after the break, but, Dr. Capell, what I get is in the cases where surgery might be indicated you and Dr. Javid and the other surgeons in her group, you must work very closely together. There's a lot of dialogue going on. 9

10 Importance of a Multidisciplinary Team It's extremely important. And I also want to put in strong kudos for the pathology people that we work with who have to interpret these cellular samples and give us the inclination as to whether or not there's a more than likely probability that this is going to be malignant, understanding that there are these cases that are in between. So it's important to then communicate to my surgical colleagues that I have somebody who does not have any proven thyroid cancer but there's a strong suspicion so that they know how we would want to approach the patient. And there are issues that have to do for example with papillary thyroid cancer where there is a problem that they tend to be multifocal, where they may be in different locations, so to be aware of that and what to explore and excellent imaging ahead of time if there are lymph nodes that are involved that require surgery beyond just the thyroid gland. So that type of interaction and cooperation I have deemed to be critical. Okay. We're going to talk a lot more about you and really you mentioned pathology. We're going to talk about nuclear medicine in a minute. We're going to meet Dr. David Mankoff. We're going to come back and hear from Kim Valdez more as well. So we invite your questions. Or an , some people have already sent one, to patientpower@seattlecca.org. Much more of our discussion about thyroid and we'll also touch on other endocrine cancers right after this. Back to our live webcast discussing thyroid cancer, and we welcome the questions that have been coming in and we're going to pepper those off to our experts here in just a minute. I want to introduce the third member of our sort of SCCA clinical dream team, and there's a whole group that works together, but another key player is Dr. David Mankoff. David is professor of radiology in the division of nuclear medicine at the University of Washington Seattle Cancer Care Alliance. Dr. Mankoff, so so many people who have their thyroid surgery are then given radioactive iodine, and I know you all are involved in that. So tell me what that is, and why is it such an effective treatment. It has been around a long time related to thyroid cancer. Dr. Mankoff: Hi, Andrew. Nice to talk to you again, and hi, everybody else. Good evening. The normal thyroid is one of the few organs in the body that actually handles elemental iodine or iodide, and that makes it a very targeted way of not only finding the cancer but treating it. So for those folks that have more advanced or larger thyroid cancers radioiodine is important not only for doing studies to identify how far the cancer has spread but it's a little bit like a magic bullet. It tends to go to only those locations where we have thyroid cancer spread, and it deposits its radiation very, very locally. 10

11 So the way this works is a lot like the type of radiation that patients may be used to hearing about that they might get for something, for example like breast cancer, but it's very different in a way. It's a radioisotope, and you don't particularly have to know where the cancer cells are for the radioisotope to be able to go from the stomach through the bloodstream and to identify those locations that are thyroid cancer and because they're thyroid cancer and use iodine take up the iodine. And then once the iodine gets there it deposits its radiation in a very, very localized spot and can kill the cancer. So it's a very effective form of treatment because sort of by chance we have the right kind of isotope for the right kind of cancer that really is very localized and very specific. Now, I want to have a patient you know, Kim, join us again. Kim, are you still there? Yes, I am. So you got to meet, you went over to the University of Washington and Seattle Cancer Care Alliance and you've gotten to know Dr. Mankoff real well, and you're someone where the thyroid cancer has been more advanced. So you had the radioactive iodine, right? Right. Yes. And you've had lots of scans. So, Dr. Mankoff, in Kim's case, and she's willing to talk about it here where it's spread and they have these images on the lungs and maybe in other places too, what do you do then? Dr. Mankoff: Well, first of all, I wish to say it's really nice to hear Kim's voice. The good thing about being successful is that if we've been successful we don't actually see our patients for a while. So, Kim, it's really nice to talk to you. I hope you're doing well. You too. You too. Imaging and Advanced Nuclear Medicine Dr. Mankoff: So Kim had, when she came to us had already been diagnosed with a fairly advanced form of thyroid cancer. For the type of thyroid cancer that Kim I'd like to say had because I think she's gotten rid of most evidence of having it, papillary thyroid cancer when it spreads it will spread to regional lymph nodes, to draining 11

12 nodes in the body, and once it gets beyond there then it goes to the lungs. So Kim had had fairly extensive spread to the lungs which showed up very brightly on an iodine scan. I'm guessing those were the black dots that you saw on the scan that you looked at. And in that situation the radioiodine can be very effective, but we've got to be fairly careful about how we use it. All right. Now, are there any other radiation approaches that come into play as well? Dr. Mankoff: There is conventional radiation treatment that is sometimes used especially in older patients or patients who have more aggressive tumors to try to help control the disease in the neck. It's almost always used in conjunction with the radioiodine, and in general the thyroid cancer is not that responsive to radiation. Part of the reason radioiodine is so effective is that it's such localized radiation we can put a lot of radiation in one spot to basically kill the cancer. So we have a very multidisciplinary team, and we're very fortunate to have radiation oncologists that work very closely with us to help use radioiodine and conventional radiotherapy together, but for the most part for papillary and follicular thyroid cancer the primary form of radiation treatment comes in radioisotopes in the form of radioiodine. Now, Dr. Capell, you took me to sort of a thyroid cancer school on the phone the other day, and you told me though there were some types that were I think you called them radioactive iodine receptor negative. So where do those, how frequently are those? And then we're going to ask Dr. Mankoff and you what do you do then. Right. There are patients who can have disease and yet their tumors are not normal enough to make any type of a receptor to trap the iodine, and these are what are called iodine negative or iodine refractory disease. And we probably see this maybe 15 to 20 percent of the time I would say, and I'll be interested to hear what David thinks the statistics are. And that proposes a particular challenge because we've now lost one of our main therapeutic tools, mainly the radioactive iodine. And so in those individuals surgery starts to play a more prominent role. Sometimes external beam radiation may come in, particularly in older individuals. So we now have to look at some different types of therapies that in those individuals who are iodine positive we would not have to address. And, David, a question I wanted to ask you too because I know you're one of the kings of PET scanning, is PET scanning used to see how you're doing as well, both looking for cancer, like Kim had said she had PET scan from, or excuse me. It was Natalie who said from her knees up, where does PET scanning come into play here too? 12

13 Dr. Mankoff: Well, there's an interesting paradox here too. There are some folks, and Natalie's a very good example of that, who have had a PET scan appropriately for another cancer and by chance end up finding something in their thyroid, which actually, unlike what Dr. Capell had said earlier, of all nodules only about five to eight percent are cancer, those nodules that show up very focally on a PET scan probably about 25 to 30 percent of them are thyroid cancers. So PET scan comes into play sort of by accident in some early stage disease. And then it doesn't really play a role again until we get to the point where we're suspicious that a patient may be resistant to radioiodine treatment or has lost iodine uptake. One of the ways we find thyroid cancer besides imaging is a blood test called thyroglobulin, and thyroglobulin is a substance that's made by the normal thyroid in thyroid cancer. Once we've taken a patient's thyroid out and treated them with radioactive iodine we don't expect to see thyroglobulin any more, and if we have evidence of the tumor coming back by thyroglobulin and don't see evidence of it on the thyroid scan then we're concerned that the thyroid cancer may have lost its thyroid iodine uptake. And so PET scanning comes very much into play in those patients where we try to look at PET scanning which looks at the cancer in a different way to try to identify if the thyroid cancer is active and if it's active where it is. So PET scanning can play a very important role in those patients that Dr. Capell mentioned that have lost iodine uptake capability and are resistant to iodine to tell us where they are and to hopefully tell us how to treat them. Wow. Here's a question I wanted to ask for, Dr. Javid might be a good place to start. And I'll try to summarize it. It's pretty long. It's from Sam in Seattle. So Sam said in a recent physical examination by his endocrinologist, and by the way Sam is 60 and is a diabetic, the doctor detected a slightly enlarged thyroid, and he had an ultrasound scan. The scan showed at least four nodules on the right side of the thyroid, if I've got these right. And I think he said one measures nine millimeters, just a small nodule on the left side, four millimeters as well. And then he had one of these fine needle aspirations as you talked about, and that one is suspicious for malignancy. And so he's wondering does he need surgery. So the largest was nine millimeters on the right side. And then should he have the other one removed at the same time if he does, and then would he need anything beyond surgery. So I know we can't do medical practice over the internet, Dr. Javid, but is this one of these gray areas when they're so small, what to do. You know the small nodules do present a problem because oftentimes we typically don't advise biopsying them. One centimeter around one centimeter is kind the cut-off area, so the nine millimeter nodule that did get biopsied often get biopsied. And the finding of a suspicion of malignancy I'd want to know what type, the cell type that was so important we talked about earlier, the papillary type or the 13

14 follicular type. If it's suspicious for a papillary cancer the majority of those go on to be a proven papillary cancer when the nodule is taken out in the form of removing part of the thyroid or half of the thyroid gland. If it's a concern or suspicious for a follicular neoplasm it's still, as Dr. Capell mentioned earlier we really count on our pathology colleagues in terms of raising or lowering our suspicion of whether it represents a malignant growth or neoplasm versus a benign neoplasm, so I'd want to know what the pathology, what features of the cells on the pathology specimen they were concerned about. Certainly a nine millimeter nodule, I would probably, again this is a very multidisciplinary effort, and in these cases I often do go speak with Dr. Capell and Dr. Mankoff because the decision about removing half of the thyroid as opposed to the whole is somewhat based upon what type of therapy will be planned after the surgery. So if a tumor is large enough or invasive enough to warrant Dr. Mankoff getting involved with radioactive iodine ablation, that's much more effective therapy in the setting of having the whole thyroid gland removed. However, a nine millimeter nodule may very well not get radioactive iodine therapy advised postoperatively, so in that setting I'd recommend removal of half of the gland. Now, having said that it's really important to look at the pathology features of the cells on the needle biopsy as we've talked about earlier. Now, you and I talked on the phone the other day about how this is really one where it really requires smart people putting their heads together to make recommendations to a patient on what to do. Right. It's not a unilateral decision, right. No, it isn't. And I had a question for Dr. Capell. Dr. Capell, you had this multidisciplinary team at the University of Washington and the SCCA, and so you regularly are meeting to put everybody's head together to talk about what you would recommend, right? That's correct. So on these cases where there is no clear right or wrong answer, it's a matter of how everybody feels this case is going to turn out, what's the best way to protect the person without putting them through undue procedures, and that's where the questions can fly back and forth about, well, review the pathology for me. So we turn to our pathologist. What about the patients themselves? What kind of physical condition are they in? How can they tolerate this? What does the imaging look like? And then try and come up with the best advice that you can give recognizing that there's not just one way to go in that setting. Now, this relates to sort of the multidisciplinary team. So, Kim, you beat a path to the University of Washington, the SCCA, when you saw you had quite an advanced situation. And both Dr. Capell and Dr. Mankoff have been your doctors although 14

15 Dr. Mankoff is kind of waving hi because they haven't seen you in a while. So you were diagnosed with a really scary situation, but we're talking about what now, over five years. How are you doing now, and what role do you think these folks played in you being here? Oh, gosh. I honestly at the time when I was diagnosed and had first met Dr. Capell and Dr. Mankoff, before I had even gotten to them I can honestly say that I really thought that I was going to die. Because, you know, I think as soon as anybody hears the word "cancer" not really knowing what it's doing or where it's at or if you're going to make it I honestly believe that you've got that flash in front of you that says, oh, my god, what are we going to do now. Am I going to make it tomorrow, am I going to make it a month from now or a year from now? That's what really led me to them, and I truly believe that if I had not sought the medical attention from them I really don't know if I'd be here today. I had actually, after meeting Dr. Mankoff and Dr. Capell I can honestly remember seeing Dr. Mankoff for the very first time and him having some x-rays in front of him up and him explaining to my husband and myself what it was and what was happening and him actually saying that, you know, there's not a textbook that can tell me how to treat you. All I know is that I'm going to do everything that I can to save your life and to make sure you're here tomorrow. And I felt like the weight of the world had been lifted off my shoulders. I thought, wow, I actually have somebody in front of me telling me that they're here to help. And that's what I had to do was just kind of, you have to be positive, and I truly believe that your mind is everything. If you believe that you're not going to be saved or to get better I really think that you've put yourself or you've put one foot into the grave, and that's how I feel. You have to make that decision and that choice to want to make it. And again like I said earlier you do have to become your own advocate. You have to learn and know that you want to find out more, you want to survive, you want to do everything that you can, and you have to literally put your trust and your faith in to these wonderful people and doctors that really are truly here to help you. And these doctors that we have with us today, folks, this is what they specialize in. They specialize in these what we call endocrine tumors, thyroid cancers. You hear Dr. Mankoff, Dr. Javid, Dr. Capell, they know this backwards and forwards, and they're dedicated to this and they work together as a team. We're going to take a quick break. I want to give a phone number if you want to call in to the studio and ask a question. And we'll hear more from Natalie, and we also have some more questions from our doctors. We'll be right back with more of our live webcast sponsored by Seattle Cancer Care Alliance discussing thyroid cancers. Stay with us. 15

16 I want to mention, this is really a definitive program as we discuss thyroid cancer, and it's just terrific that we have three members of the multidisciplinary team with us, and then two women, and we'll hear more from Natalie in a minute, with different thyroid cancer situations. Now, here's a question that came in from Amber who is listening from Los Angeles. I want to address this to Dr. Capell because we, you know, people worry, does it run in the family. She says, "My sister was just diagnosed with thyroid cancer. She's 19 years old, and our family has a history of thyroid problems. Should I or all of us be tested to see if we have some sort of gene that indicates we're at risk? What sorts of tests should be done, and what kind of specialist should we see?" Dr. Capell? Listener Questions Well, I think to answer that question I'd first need to know what type of thyroid cancer was found in her sister. So if it was medullary thyroid cancer in a young individual there's no question that genetic testing would be indicated. If this is the more common papillary thyroid cancer or the second most common, follicular thyroid cancer, there we look at family histories and say they're positive when we see at least two if not three members of the family that have had thyroid cancer, and we do not have a genetic marker for those individuals. So if it's a single individual the chances of it running in families is low, so we have not traditionally recommended that the rest of the family be screened but it's always worthwhile keeping that in mind should any nodule develop that you can feel in your neck or be discovered in any other way. But with the genetic variance, namely the medullary thyroid cancers, that would be a different story. And when she asked about what kind of specialist, it would typically be someone like you, an endocrinologist? That's where I would start, yes, in endocrinology. All right. Here's a question we got in from Anna Lisa here in Seattle and maybe for you, Dr. Javid. She writes in, "I had a mass removed from the left side of my neck in October 2006, and that had papillary thyroid cancer." In December, so a couple of months later, she had the whole thyroid removed. It was determined to be follicular thyroid cancer there with something called tall cells. "And recently I've had problems now with hoarseness, and it's gone on for six weeks." And she saw an ENT doctor, and they found a lesion on a vocal cord. "The doctor put me on a medicine for GERD to try for one month then he said he'd recheck, but he wasn't concerned about removing it." So her question is, "Could this be related to any of 16

17 the earlier thyroid cancer," or should she just watch and wait? So I know again this is what she's disclosed here and maybe we can't be that specific, but any general guidance in this case, Dr. Javid? Sure. So the type of variant that she has, the papillary and follicular there can be variants with one another. A follicular variant of papillary cancer, and that may have been what she had, and it sounds like she had complete surgical therapy with removal of her entire thyroid gland. In terms of the vocal cords, it's very unusual, almost never do we see thyroid cancer spread to the vocal cords directly from an internal perspective where you'd see that from what the ENT surgeon does, take a look down the throat to look at the vocal cords. Certainly with the very unusual or more unusual types of thyroid cancers, like Judge Rehnquist had, the anaplastic, very rare types of cancers, those sometimes do invade into the vocal cords from the outside in. But what he's seeing it sounds like on an exam is a nodule that may be related to scarring from reflux disease, which we do see. That's a more common reason for those kind of vocal cord growths. However, if it doesn't respond or improve to the antireflux therapy that he's placing her on it may be advisable to just do a biopsy of that, and the ENT surgeon could do that. I'd be very surprised to hear that that would be a recurrence, especially if she's had no problems with lymph nodes in the neck because lymph nodes are really the first place and the most common place for this type of cancer to come back into. Dr. Mankoff, so anybody treated for any cancer always worries, does it come back or had it been hiding somewhere and now shows up later own. So what sort of follow-up or scans might somebody who has had thyroid cancer have if any and what sort of frequency? Follow-ups and Screening for Thyroid Cancer Dr. Mankoff: Again, Andrew, it's going to depend a little bit upon how advanced the cancer was at presentation and what kind of treatments have been done. In general for those patients who have been treated with radioactive iodine we like to do at least one follow-up radioactive iodine scan to make sure that everything that looked abnormal that took up radioactive iodine has gone away. Maybe more importantly for the vast majority of patients especially after they have had radioiodine there is a very sensitive blood marker which I mentioned before, thyroglobulin, which is a very effective way for screening for tumors. And so once we have done the initial rounds of scans, then at that point it's very important for the patients to have close follow-up with somebody like Dr. Capell, an endocrinologist who will check blood tests, check their thyroid hormone replacement and be able to follow them yearly. 17

18 One of the things to emphasize is that is this a very slow-moving cancer most of the time and very rarely lethal. But because it moves slowly it can come back many years later, and patients really need I think a lifetime of surveillance which may simple be a visit to the endocrinologist and a blood test once a year just to make sure that the tumor doesn't come back. But our hope is that eventually as we get far enough out from the recurrence most of the follow-up can just be done by blood testing. The only other form of imaging I should mention is that many patients especially those with papillary thyroid cancer we can have spread to the lymph nodes, as Dr. Javid mentioned. We are increasingly using an ultrasound, the same type of test that we use to diagnose the thyroid cancer to be able to look at the neck, the thyroid area and the neck nodes just to make sure there aren't any recurrences that way. So in the long run, in the short term we do some scanning. In the long run it's an ongoing visit with the endocrinologist to manage thyroid hormone replacement and to be able to check mostly through blood tests for follow-up. Okay. Natalie Boisseau, you've been listening so intently I'm sure because you have surgery coming up and you're trying to decide half the thyroid, all the thyroid, and of course you have the past over the last year where you were treated for sarcoma. But do you feel you're in good hands now, Natalie. You've got your doctor on here too, so hopefully you'll say good things, but here there's a whole team. So knowing that there's some decisions to be made do you feel that you've come to the right place, if you will? Natalie: Yes, there's no doubt about that. That's why I accepted to be here tonight. I feel really confident, and it's just a matter of giving myself just a little bit more time to sleep on it, especially having heard everything again tonight and maybe have a couple questions resolved or answers. And I don't know what my cut-off date is to make a decision, but. Well, Dr. Javid, you welcome the questions, Hi, Natalie. and the dialogue, right? Yes. You welcome that, right? 18

19 Yes, I do. Natalie: And that's what I've felt all along in the process. I felt a lot of respect for wondering about what to do and listening, and sometimes you hear things but you need to hear it from a different perspective, and I feel that everyone that I've seen and I consulted with have been so generous of their time and opinion and the facts that were available, that they gave me that. So it's just a matter of making that final little decision that I need to make. And I feel like whatever I decide to do is also within what I feel, I feel comfortable because it's within the range of advice that I've heard from everyone. Right. Well, we wish you all the best. I know Dr. Javid and the whole team will take good care of you. Natalie Boisseau, thank you for being with us, and just all the best as you make your discussion and get the care that's right for you. And that's what we preach on Patient Power, this very active dialogue. You heard Kim. I know you're probably nodding your head, right, Kim? You've got to be a well-informed patient, correct? Oh, most definitely. And just to say one thing to Natalie, I applaud you because you really do have an amazing team of doctors that are working with you from Seattle Cancer Care Alliance, so good luck. Kim, you are a testament too, your courage and commitment and getting the right care, being an advocate. And certainly I know your doctors are delighted you're with us as really hopefully a former patient, okay. Kim, all the best to you. Thank you. And doctors, we have so much we want to cover. We really didn't get to some other less common cancers, parathyroid, adrenal, and I know you see that too and you have very specialized expertise there at the Seattle Cancer Care Alliance. Dr. David Mankoff, I want to say thank you again for being with us a second time. We will have you with us another time to discuss more I'm sure. Dr. Mankoff: Thank you. 19

20 And Dr. Peter Capell, I know you eat, drink and sleep this all the time in endocrinology, and I want to thank you. And we'll talk maybe about some of those less-common tumors another time, okay? Andrew, I really enjoyed the hour. And Dr. Sarah Javid, thank you for being with us as well. We really appreciate it. Thank you for inviting me. It was a pleasure. All right, everybody. We're going to go. Thank you so much for being with us. This is what we do on Patient Power. You can always send us an and just send it to patientpower@seattlecca.org. And we have webcasts basically every two weeks. All the replays are at, and it's usually within a couple of weeks after we do a live webcast like this we add a full transcript. Thank you so much for being with us. I'm Andrew Schorr. Remember, knowledge can be the best medicine of all. 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. 20