We've created a document to help you navigate your lab results. Download it here:[download id="4"] Dr. Michael Misialek, MD Interview date: November 8, 2013 Summary Diagnostics are the foundation of our disease and our care. Dr. Michael Misialek reminds us that we have a pathologist that can help understand the confusing results we see on our lab work. He shares that pathologists are not just the Quincy or CSI foresics expert behind the scenes, but they are an important member of our myeloma heath care team who works with our myeloma specialist/oncologist and others to help watch our progress and direct our care. He tells us that the pathologist reviews all lab work including blood, urine, bone marrow and imaging studies and is willing and available to sit down with us and our family members to help us better understand our results. We can set up an appointment with our pathologist and the meeting is typically offered as a courtesy to patients. To ensure more standardized myeloma testing, he recommends we ask the facility if the lab they use is credentialed and board-certified. We thought it might be helpful to have a document that describes all of the lab results and important markers for multiple myeloma. This Word document contains a diagnosis summary checklist, a treatment summary form and each lab result described and color-coded for relevance. Special thanks to Dr. Michael Misialek, Dr. Guido Tricot and Jen Higbee for their contributions to this helpful document. The live mPatient Radio podcast with Dr. Michael Misialek
Jenny: Welcome to today's episode of mPatient Myeloma Radio, a show that connects patients with myeloma researchers to better understand how we can move research forward faster by participating in clinical trials and find the best personalized approach. If you'd like to hear about the very latest in this series in a weekly email, we invite you to subscribe to our mPatient Minute newsletter. Just go to the homepage, www.mpatient.org where you will find the links to our Twitter and Facebook pages there as well. Because we've been talking with myeloma experts about personalized care, today I thought we would address a really important question we all have when we go to the clinic, "What in the world do my lab numbers mean?" Now some of us track our numbers vigilantly and will ask for a printout at every visit and some just say, "Never mind. Tell me when something goes wrong." It can be pretty overwhelming when you're looking at a list that makes no sense. Being on medication certainly doesn't help. But because so much of our treatment depends on what happens to us individually, in our last interview Dr. Morgan said, we shouldn't bury our head in the sand. We need to be aware of what is happening in our own care and we are our own best advocate. Fortunately, we all have a resource at a facility that can help us make sense of these numbers. I had no idea that this was available but I think it helps us get to more personalized care and better individual outcomes. Did you know that you have a pathologist waiting and ready to review your lab numbers with you? Today, we have with us Dr. Michael Misialek from Newton-Wellesley Hospital in Massachusetts and he joins us to share with us what a pathologist can do to help us improve our myeloma care. Dr. Misialek, we are so pleased to have you with us. Thank you for joining us.
Dr. Misialek: Thank you very much, Jenny. It's my pleasure to join you and I look forward to our conversation and hopefully our viewers will find it interesting and call in with some great questions.
Jenny: Let me first start out by giving a little introduction for you. Dr. Michael Misialek currently serves as Associate Chair of Pathology at Newton-Wellesley Hospital in Newton, Massachusetts. He is the Medical Director of the Vernon Cancer Center Chemistry Laboratory and Point of Care Testing. He practices in all areas of pathology in a busy community hospital. Holding an academic appointment at Tufts University School of Medicine as a Clinical Assistant Professor of Pathology, he regularly teaches medical students and pathology residents. Dr. Misialek is a strong advocate for pathology and is very active in the College of American Pathologists, serving on the Personalized Healthcare Committee, the Political Action Committee PathPAC and as chair of the Massachusetts delegation in the CAP House of Delegates. He is an inspector with the College of American Pathologists and has conducted several hospital laboratory inspections. He's a member of the Clinical and Laboratory Standards Institute Document Development Committee on Reporting Critical, Life-Threatening, or Life-Altering Lab Results. He received his medical degree from the University of Massachusetts, did his internship in Internal Medicine at Boston Medical Center and completed his residency in Anatomic and Clinical Pathology at the University of Massachusetts Medical Center. He performed the fellowship in general surgical pathology at the University of Florida and is board-certified in anatomic and clinical pathology. Thank you very much for joining us.
Dr. Misialek: Thank you again.
Jenny: Dr. Misialek, should we start with an overview first of what a pathologist does and their roles and responsibilities?
Dr. Misialek: Yes, absolutely. The public may not be very much aware of the pathologist, role of the pathologist. We've been stereotyped in the past as Quincy or more recently with shows such as CSI, people seem to think pathologists are purely involved in forensics which is true in some respects but the vast number of pathologists actually practice in hospitals, medical centers, clinics, laboratories and they're involved in your day-to-day care behind the scenes, assisting your other physicians, your care team and are involved in developing a plan, going over lab results, advising other clinicians about next steps and other important aspects that you may not be aware of. Pathologists are board certified in anatomic clinical pathology. We go through a residency and fellowship just like other specialists or physicians in medicine. We are members of your care team. Often, we're referred to as the doctor's doctor in a sense that many clinicians will consult us for questions that may arise out of lab results or next steps to do in an investigation of a patient's illness. So whether patients know it or not, there's a lot of background discussion that goes along about their care among clinicians, the healthcare team and it very much involves pathology. Many people will often comment and say that all care begins with pathology and that you do need a tissue diagnosis before you can embark on treatment for say myeloma or as many as 70% to 80% of the data within a person's medical file is actually generated from the lab. Pathologists oversee we direct, we run the hospital laboratories. These can include chemistry departments, hematology, microbiology, the blood bank. Anytime you're seen by a doctor, whether you have your blood drawn, a biopsy taken, you've gone to the operating room for removal of some tissue, all of that ultimately comes to a pathologist. It comes under a microscope, we diagnose it, we generate a report. Many of the listeners have probably seen their pathology reports and their lab reports. All that data is compiled, generated by a pathologist and which brings up another big role for pathologists. We're central to a lot of this information and data gathering so that we really do have at our fingertips are large repository of information which is useful in areas of research. Many of us will participate in basic and clinical research where we take a look at this information and go back and look at patients and their outcomes, look at different diseases and collaborate with our other clinicians. Pathology really touches many fields because of this central aspect of our function. We really intersect and touch paths with all other physicians in medicine whether they be primary care physicians or specialists. That's really what the pathologist does as part of your care team.
Jenny: Well, it's nice to know that we have an extra resource that I don't think most of us knew about.
Dr. Misialek: No. The reason I think pathologists are becoming more engaged and more active, visible in your care team is that we're being asked to do more. With healthcare reform, there have been a number of changes where we are being asked to do more with less resources and pathologists are central to developing best practices, algorithms for laboratory medicine in how particular illnesses and diseases are worked up such as myeloma. Anyone who really has a lab test is one of our patients whether they know it or not. Many of my colleagues are starting to see patients now directly in consultation or as part of a care team with other clinicians and just recently we've introduced here at my institution a process by which a patient can come in and review their pathology with a pathologist just like you would go to your doctor for a visit, for another purpose, you can also request a visit with the pathologist and perhaps discuss your pathology reports or any questions you might have. We've been asked to do more and we think that best medicine really requires us to know as much as we can about our patients so it's only natural that we are reaching out and trying to become more engaged and know more about our patients rather than just what we see under the microscope.
Jenny: Well, that's wonderful. How frequently will you be looking at my lab results?
Dr. Misialek: Really every day. In the background here of most hospitals, there's blood testing that goes on really 24/7, whether it's patients coming in to an office for a visit, patients in the operating room, in-patients within a hospital coming in to the emergency room or in an outside clinic. All of this material comes in to the hospital. It's being run in the background. These labs are being generated. And on occasion when there are questions, either one of the laboratory technicians may have a question about a result and bring it to our attention or when that result is in the information system, the ordering clinician may give us a call and have us look over the results and if they have any questions we can try and help them make sense of it. It's pretty much daily that we're looking at lab results. As far as biopsies and tissue specimens, that's an everyday process as well. Procedures go on every single day. In particular for myeloma, patients will be having bone marrow biopsies, they may be having blood tests, protein electrophoresis, other laboratory testings surrounding myeloma that commonly occurs and that's analyzed every day by pathologists across the country.
Jenny: When you say you work with the myeloma specialists, can you describe a little more how you do it? Is it a two-way communication? If you see something alarming on the results you're going to call or send a note or something to that myeloma specialist? Or do they review all the results and then they contact you or does it just go both ways?
Dr. Misialek: Absolutely, that's a great question. I think myeloma care can almost serve as a paradigm for a lot of other cancer or tumor care in that we collaborate real time with your other treating clinicians, your hematologist, your oncologist, in that a lab result may come up, they may give us a call, we discuss it. Typically, most institutions, whether they're a community hospital, a large academic medical center across the country, have daily and weekly conferences to discuss patients who are actively being cared for. Rather than looking at historical data, we look at patients who are having procedures currently and we will meet as a team. So you'll generally have a pathologist with a hematologist, an oncologist, other clinicians, particularly radiation oncologists, surgeons, nurses, other internal medicine doctors and we will regularly meet at least once maybe more times a week depending on the volume of patients and we discuss cases real time about diagnoses. Pathologists will show the slides that show their pathology to these other clinicians the other clinicians will likewise show their portion of the case as well. You might have a radiologist discussing some skeletal surveys, some X-rays, some bone scans, MRIs, PET scans, which would complement and go along with the pathology data so that a care plan can be developed. It's this meeting of the minds where patient's plans are developed; patient's next steps are outlined. This all goes on behind the scenes, after patients have left the office and gone home, the work really just begins for us and this series of meetings plays out in hospitals across the country and then a plan is developed and put into place and the work still doesn't stop there because as you and other listeners are aware, there will be follow up visits where patients come back for repeat testing, repeat surveillance and again bloods are collected, specimens maybe obtained and again this is reevaluated by pathologists and with your team of clinicians, your healthcare team, we all discuss care and what should be the next step. It's a really a daily occurrence that pathologists will interact with other members of your care team and it's this team approach that I believe provides the best quality of care and that certainly something that we stress everywhere pathologists practice.
Jenny: I think the team approach is a wonderful approach and I know sometimes it happens and sometimes it doesn't happen and I'd love it to happen all the time. My brother-in-law was fighting AML and sometimes, the fourth floor wasn't talking to the fifth floor. What can patients do to ensure that a team is looking at their case? What questions can they ask to see if that's happening?
Dr. Misialek: I think that's an excellent question. Patients nowadays, you are very well-aware and many of the listeners are definitely more educated. I think with this internet age, people are doing a lot of research before they come to a doctor. Even after they do come to the hospital and receive care, many healthcare systems have patient portals where patients at home can log on and see their results almost as fast as their other doctors can see the results. Patients are definitely more educated and I think it's this education and engagement by patients that is really necessary to further drive the process. I would encourage patients to take an active role in their care, ask questions after visits, ask if they have a question about their pathology, if they could get a copy of their pathology report and go through it, have their doctor go through it if there's any particular questions that their physician may or may not be able to ask, have your listeners ask to see a pathologist or oftentimes, their doctor will call us directly, sometimes even while they're in a room with the patient. I've gotten several calls like that, it happens fairly frequently, and a question will come up and they'll give the pathologist a call and we'll try and help them out. I would encourage listeners to take an active role in their care, be their own advocate, speak up for their care, look at as much material as they can, their lab results, their radiology imaging studies, biopsies and go through them and if they have questions, ask the appropriate people and make sure you understand everything that's being done. Don't be afraid to question. As clinicians, we love questions. We love questions from our patients. In fact, those are some of the best and toughest questions that we do get. It causes us to reevaluate, to think about our plan and again, that's good medicine. That ensures quality care. I would definitely encourage patients to ask questions and make sure that communication is maintained so there isn't a breakdown in communication like you've mentioned in your unfortunate situation there.
Jenny: It's important to have everyone working together and that's wonderful when it happens. I love the online lab work. It's great. A lot of facilities have that now.
Dr. Misialek: That's very, very helpful for patients. I've gotten phone calls from patients who've seen lab results and are concerned about something that maybe trending a little bit different in their lab results and they've called to ask these types of questions. Oftentimes we're able to answer. I do feel like they're very relieved when they hear an answer and it gives me enjoyment to be able to help a patient in that way which is something pathologists haven't typically done in the past, this is direct patient consult and interactions. It adds a new dimension to our practice. As we've mentioned, it's good quality care.
Jenny: Let's talk about that for a minute. How would I go about meeting with you at the facility? How would I set up an appointment and what would I do to review my lab work with you?
Dr. Misialek: I think listeners could first start by asking their doctor who ordered the lab work. We've got a lot of myeloma patients listening. You could start off by asking your hematologist-oncologist if it's possible to meet with the pathologist If you do have a question on one of your lab reports. Oftentimes, the hematologist on call just wouldn't be able to answer that question directly. If not, you should ask if it is enough, if there is an opportunity to meet with the pathologists at your facility. It's a relatively new phenomenon of pathologists meeting with patients. It's not widely adapted yet across all practices across the country but it's definitely an idea that's catching on quickly. A lot of my colleagues are doing similar things and I've expressed the same sentiments as myself as far as their desire to see patients, to help out and to be more visible member of the care team. Pathologists not only are active in patient care and these types of consultations but many of my colleagues in other areas of pathology have been seeing patients for some time now. Many listeners maybe have had radiology procedures, interventional radiology where there might be a biopsy of say a thyroid nodule or a fine needle aspiration of a different mass somewhere, a lymph node and oftentimes when they do have their procedure, they may be seen by a pathologist before and definitely during a procedure a pathologist is often present in real-time evaluating the cells that are aspirated. Pathologists have been consulting with clinicians for some time and we're really looking forward and enjoying our newfound role of consulting with patients as well. I think patients can start off by just asking their doctor, "Is there an opportunity to talk with my pathologist?" Say, "I have a particular question," and I am sure that they would be more than happy to make the introductions.
Jenny: Well, I know when you first get started with treatment, everything is such a shock so you're going through multiple levels of stress and have to change your life in pretty radical ways. It might just be nice to have somebody explain what everything means to you.
Dr. Misialek: Definitely. There's real information overload when patients are first diagnosed with a serious illness and it may take a couple of days for patients to process all of this. It may not be appropriate at the first visit or patients may not even think about a pathologist or asking a particular question until they have digested and slept on it and thought about it, talked with their family members. In fact, many of the patients that we've seen here in our practice who've come in to look at their pathology of their breast tumors bring in family members who also have questions. It's definitely an entire engaged process where I think once patients process the information to speak with their family members, they can come back in a follow-up visit and ask these educated questions. That's the best time probably to be thinking about contacting a pathologist or asking if you have that opportunity at your facility.
Jenny: And then a follow up question, how often should I meet with you as a pathologist, just if I have a question or before or after treatment? What do you recommend?
Dr. Misialek: Right now, as we're beginning this new process of seeing patients and seeing how it works in with our workflow rate, right now, it's just been sort of an as-needed scenario. When questions do come up, patients can call their clinicians, ask if it's possible to see a pathologist and schedule an appointment with us. We don't require -- I don't think patients should feel like they're required to see their pathologist or they need to see the pathologist. But I think, for those patients who are really actively engaged in wanting to know everything about their care, I think it would be a great eye-opener, a very empowering event when they do meet with their pathologist and see some of these things under the microscope that they've only been hearing about. Many of the listeners I'm sure have been to their doctor's offices and their doctor may show x-rays or an MRI scan on a computer or a light screen in the office, it's very analogous to that. We were offering the opportunity for a patient to see their pathology, to see their slides. It's not for everybody but I think everybody should be aware that we are there. We are a member of their team and we're ready and willing to answer questions and to help out.
Jenny: As a follow up to that, is my insurance charged for the visit or no? Is it like a traditional appointment?
Dr. Misialek: So I can just speak from our own experience and my practice here is that, we are not charging for this service. We are providing it as a courtesy to patients. Probably, the best model for how this is occurring I can tell you here at my institution is that we first rolled it out for the breast cancer clinic in that when patients come in for care, it's a very coordinated process with a team approach where patients after diagnosis will meet with their radiologist, their oncologist, a surgeon, a radiation oncologist and also be offered the opportunity to meet with the pathologist. So in one day, during one series of appointments, they will be offered that opportunity and may come over here to the lab to take a look. It's not something that you have to get a pre-authorization or check with your insurance. We're not charging for it right now but I can't speak to how it occurs at other areas across the country or how it may evolve over time. But right now, I would encourage patients to reach out to their pathologist and ask if it is available, if the opportunity does exist for them to take a look at their slides, their biopsies and ask a few questions that may in their mind solidify their understanding of their disease or their understanding of the treatment regiments that they're currently undertaking or why things do occur as they do.
Jenny: Do you as a pathologist are you looking at the bone marrow, the urine and the blood or are you including the imaging too when we go to you to talk -- to look at everything or just the bone marrow, blood and urine?
Dr. Misialek: For myeloma care in particular, we are looking at everything. When I look at a bone marrow biopsy from a patient, I look at a variety of clinical lab work to supplement my report, understanding of what's going on and try and issue the most accurate diagnosis possible with maybe some suggestions for follow up. That does include looking at other lab work such as protein electrophoresis, urine analysis, regular chemistries, blood counts. I'll even look at radiology films. That's one of the nice things about practicing in this day and age, is that, many practices across the country have all of this information at their fingertips. Many of us have multiple information systems, medical records, electronic medical records that have a lot of this information there. If a patient were to meet with us, we do have access to all of that information. It is definitely helpful when a pathologist generates a report, puts together report to have this information. Questions may come up with the patient where it's useful to take a look in to some of that information or a patient may feel like they've got a couple of questions all over the place. Maybe the pathologist might be the best one to take a stab at answering some of those questions.
Jenny: I know it makes a big difference that patients are aware of what's happening and at some level are tracking it. I have a friend who has tracked their numbers faithfully and was given -- I can't remember if it was Revlimid or which drug they were given -- but it started having change in their numbers and they were able to notice that change and then ask their doctor about it. It was doing organ damage. So they were taken off that drug and another one was used in its place. It was just because they themselves were paying attention.
Dr. Misialek: Right. That's an example of an engaged patient who's keeping very close tabs on their care and something we do encourage. It brings up a good point about the role of a pathologist behind the scenes is that since we do oversee labs and there's a lot of information that come out of laboratory testing on a daily basis, we're involved, I mentioned earlier with developing algorithms that allow for more cost-effective workup of patients illnesses to get at a diagnosis quicker, faster, in a more cost-effective way which in the end provides better care because we're getting to a diagnosis quicker, a clinician is able to act on that quicker and a lot of that is harnessing this technology that's available in pathology labs across the country as being this repository of information and being able to mine this digital data. One of the new healthcare reform laws is moving towards more of accountable care where that we're trying to deliver quality care with quicker results, faster results, in a more cost-effective manner. The example that you mentioned is a real thing that's occurring in practices across the country. There's a so-called medical home model of healthcare where patients are monitored at home and in the hopes of picking up trends and things of the nature like you described where a bump in one of the blood tests might be noticed before it becomes a real problem. That's what we're trying to encourage. That's what we're working on behind the scenes, is to pick up problems before they become problems. It's helpful to have patients involved in this process as well.
Jenny: The data is there in a lot of the facilities now that you can access the data but making sense of the data is a whole another step both for you, the model that you're talking about in the clinic but also for the patient. Sometimes, you don't understand the relevance to your numbers changing and sometimes that might make you feel a little panicked and sometimes you just don't know what questions -- we don't know what we don't know I guess as patients sometimes. But having those tools would be remarkable.
Dr. Misialek: Right. I think you're developing a tool that you're going to introduce to listeners in the future here. I think having a tool, having a logbook where patients can keep track of their data is very important. Knowing what their labs are, what they mean, the trends and watching for some of these deviations that might signal a problem is very important for patients to keep tabs on.
Jenny: Let's talk for a minute about testing because we've had some of the myeloma specialists remark that some of the testing isn't standardized across facilities. Sometimes, it's the specimen quality problem like you might not get a great sample for your bone marrow biopsy or for FISH test. But sometimes, different facilities have different levels. For example, in flow cytometry some people say, "Well we run a two-color flow cytometry or "We were on an eight-color flow cytometry and test," and patients and also their doctors about this. And they've said, "Oh, no. the patients can't have any idea what kind of level of sensitivity the lab is running." But if we want the best results and patients can possibly help move things forward, how do you address that? How can we get to better standardized care?
Dr. Misialek: That's an excellent question. That's really been the realm of the pathologist for years here is that we've really worked hard on developing standards, developing quality control, quality assurance in laboratory testing and assuring our patients, our other fellow clinicians that we are delivering not only accurate results but precise so that if a patient does come in, they can feel confident that their testing is true and reflective of their underlying condition. The long-held tenets in medicine about quality, a lot of that was developed in pathology labs and continues to this day. I think one way in which patients can be assured that they're receiving quality lab work is to ask their ordering clinicians, their ordering doctor, where their lab tests are being done. Are they being done in-house, in a lab with their facility, are they being sent out and if that's the case, is the lab that's doing this testing credentialed? Is it a certified lab? There are a number of different credentialing agencies that oversee laboratory testing. One of the major ones is the College of American Pathologists. Patients can ask their ordering provider, is the lab, say College American Pathologists credentialed? Are they certified? Knowing that a lab is certified, knowing it's staffed by board-certified pathologists, I think patients can have a really strong sense of comfort that only the highest levels of testing are being upheld. You mentioned a few examples about flow cytometry testing whether the number of colors of different probes that are used. Personally, I think that's great if patients are aware of that. I think the take home message is, is it a credentialed, certified lab with board-certified pathologists because then they can be assured that everything is being done to the highest quality possible.
Jenny: Well, that's a good question because sometimes we don't even know the right questions to ask.
Dr. Misialek: I think that would be a great question for patients to ask their doctors. Not only does the opportunity exist for me to meet with my pathologist. I've got a few questions on my lab tests and I'm wondering if this is available. As a follow up question to ask, "By the way where is my lab testing being performed? Is it in a lab that is staffed by board-certified pathologists? Is it a credentialed lab?" As I mentioned, there's a number of credentialing agencies. One of the major ones is the College of American Pathologists. That would be very important information for patients to learn about and could be the first foray for them into a discussion about revealing their pathology.
Jenny: Well, the diagnostics are the foundation of all of your care. A question about this and my friend just her lab results come back and her calcium number was up. She was kind of alarmed and said, "Is this a problem?" They ran it again and it was different. One of the doctors in one of the interviews had said,"If you don't like your lab, run them again." Is this common? How do you address the variance as a pathologist or the differences?
Dr. Misialek: Right. So that's an excellent follow up question to our last topic there in that there is in a very minor variability in lab testing and it is true that if you did run a test a couple of times, you might get a number that's fractionally different but as part of these strict criteria in which certified qualified labs operate, there's a very strict tolerance that we have to adhere to. It maybe just a few percentage points, it varies for different lab tests but it's in a range such that patients can be assured each time that the result is clinically accurate and valid. They can feel confident about it. I would encourage patients to again ask about the quality standards of the lab. If it is a certified laboratory, then these parameters will be in effect. Patients can be assured that that does happen. You might think with the number of patients that do come through our labs, labs are medium-sized community hospitals and certainly larger academic centers are doing upwards of a million plus lab tests a year.
Jenny: That's a lot.
Dr. Misialek: Yes, that's a lot. Even a medium-sized community hospital will do close to a million lab test a year and a big academic medical center will do multiples of that, millions. That's a lot of individual runs of an instrument, a lot of blood that goes through, a lot of allocations. You can imagine that many labs are automated. There are a lot of robotics, automations in these instruments. These instruments are checked daily many times a day often multiple times during a shift or at least each shift. The technicians do run quality checks and calibrations to make sure that these strict parameters are in effect and being held. Many labs do or many hospitals do look at your prior labs as they're being run. Your friend there who had the outlier of the calcium, that may have been picked up even before it was reported in a lab by looking at the prior lab. Many laboratories have programs written into the instruments that a result will be internally checked against that patient's prior result. If there is a difference, what we call a delta, if there's a significant delta or change between the prior and the past or the current one is just outside of the normal limits, it's an abnormally low or abnormally high. That specimen is often is always ran again and repeated. Patients can feel really confident of the result that they do get has been double checked and sometimes triple checked. If it is significant, they're alerting systems. There is notification, structures that are set up for notifying clinicians of these potentially clinically significant critical results.
Jenny: Well, that's great to know that there are alerts, in place. Now, can we talk for a minute because we've been talking about personalized medicine and personalized care and kind of divide and conquer in myeloma I guess you could say. Can you address how lab work and how the role of the pathologist can help possibly determine, a treatment protocol that I might want to select or weigh options or are they involved in that type of advising?
Dr. Misialek: Yes, we are. In these weekly conferences that I mentioned earlier, these are exactly the types of topics that we discuss with our clinical colleagues in that putting together all of the information, different protocols or trials may be discussed. My colleagues may have a question about an assay and making sure that it's running at a particular fashion that qualifies the patient for a particular trial. The pathologist is not the main decision-maker in enrolling in different clinical trials but we provide the information to your care team and as part of the care team the information is collated and from there a care plan can be devised whether it involves standard therapy or going on a trial. Either path always involves knowing laboratory results, pathology data. So I would say yes, the pathologist is part of the care team and part of that decision-making but the ultimate decision on your care does come down to your treating physician.
Jenny: Right. You mentioned that you're being asked to do more with less and so you're using some extra tools to do that. When I look at let's say myeloma or cancer in general, I think doing the pathology or the lab work is so much cheaper than not doing the lab work and waiting until the disease progresses. In my opinion as a patient, I look at it and think, "Gosh, we need to do more pathology, more lab work than less in order to detect diseases earlier and treat them less expensively because we're finding them at earlier stages."
Dr. Misialek: Right. Well, that is also a double-edged sword and I completely agree with you that we should be looking for these things. But one problem that often comes out is, are we going to find things that aren't clinically significant? One terrific example right now is there is a lot of debate about prostate cancer. Watching patients' PSAs rising and when do they get a biopsy or when do they not get a biopsy and even when we find the cancer, do you treat it, do you not treat it, do you watch it? So I think with more information, we definitely benefit but there is also a downside of knowing more in that are we going to find things that aren't clinically relevant or would never even harm a patient? For example, in the realm of myeloma care, many listeners I'm sure are familiar with the entity of monoclonal gammopathy of unknown significance (MGUS) which is a small clone of plasma cells that is secreting a protein that's abormal. Many of these patients go on with no problem at all.
Jenny: For years.
Dr. Misialek: Yes, for years. And there's a very, very small percentage that will progress to more advanced and clinically significant disease but I think we're struggling with this information overload now is that as we are understanding the genome and we're into the molecular revolution and unraveling the secrets of cancer, we're discovering more information than we're really equipped to deal with at this point and we're trying to process it as quick as we can, trying to figure out what's clinically significant or not. Hopefully, I think in the case of myeloma, we come to a day and age that I don't think it's too far off where it follows the same course as colon cancer and lung cancer in that we have through this very rigorous testing that you're talking about, we found targets, we found particular mutations in patient's cancer and have been able to develop drugs that are active against those cancers so that patients now can be put on what you've mentioned personalized medicine, personalized care. We're not quite there yet with myeloma but I believe we're on the same track, the same trajectory and we will get there. So we will have a day where we do find patients' myeloma signatures, their genetic signature that puts them in line for a particular drug versus another patient who may have a different profile. I believe we're on the way to there but we just haven't gotten there yet. It does all begin with testing.
Jenny: I completely agree and I love that it's headed in that direction. It's great especially when they say myeloma is not a single disease. So I don't think we'd get to better care unless we start dividing and conquering.
Dr. Misialek: Right, absolutely.
Jenny: In your experience, have you seen particular tools that patients have used to help track their myeloma markers for example?
Dr. Misialek: I have seen patients who have kept a very detailed logbook of their lab results and I do think that's important. I often mentioned earlier, many patients do have access to their labs online and all of that information is stored online so that patients can go back, track results, trend results. They may be able to see a graph of how their lab results are displaying overtime. But if patients don't have that ability or they aren't able to have that access, I think keeping a copy of their labs and knowing what their results are, what's important, looking at the flags on the lab results, what's high, what's low, what does it mean and how was it different before, and asking these types of questions with their clinicians is important. Keeping a file of their laboratory records just like you might with your immunization histories for your children. I think it's important for patients to try and develop a record and keep this information together. One of the things that the medical profession is struggling with right now is trying to harmonize all of these different information systems that may exist particularly if patients travel from one hospital to another, ensuring that information flows with them. You can imagine and I'm sure many listeners have felt like if they've gone to a different doctor, a different clinic, maybe some of the testing feels repetitive to them and maybe some of it is and if we had a better way of filtering and tracking and suggesting to clinicians as they are ordering, flagging that this had just been done at another hospital, that's what we're working towards. That's one area that pathologists have been called to help with. It's to try and implement some of these laboratory information systems and help make them talk to other hospitals. That's my vision of where we're going to go and I think patients can help with that by keeping track of their lab results and questioning their doctors about abnormal results or if they feel like something had been tested, suggesting it to their doctor who may or may not have known that if it's an outside hospital.
Jenny: Well, I think it's very critical. I always ask for a printout every time I go because we were living out of the country and I had to travel to two different facilities. I just always, after I get my lab work done, can you just send me a lab or can you print it out for me. I have a big pile. Sometimes I don't know what to do with it, but I have a big pile. I think it's critical especially when it comes to compiling patient data. So I think you've hit on something very important and critical to bring us forward to personalized care and also to just solutions if we could compile all our data and all the results and then we could compare ourselves to people who have a similar profile, then we could really start seeing outcomes. It sounds like that's what you're working on.
Dr. Misialek: Absolutely. I think all of healthcare is going in that direction. We've always provided personalized care. The concept is not new but I think the implications are just because of the amount of information that we're now able to learn about a patient, about their disease, about their illness. So it's personalized even more so in the sense that we really need to be careful in what we pick and choose to order for lab testing. Patients should be aware of that and should be keeping track of it as well.
Jenny: Okay. Well, great. We have callers on the line. I would like to open it up for caller questions, if that's all right with you.
Dr. Misialek: Yes, absolutely.
Jenny: If you have questions about Dr. Misialek's work in pathology, you can call (347) 637-2631 and once you're on the call, if you like to ask a question, press 1 on your keypad.
Caller: Hi. Can you hear me?
Jenny: We can hear you.
Caller: I was wondering, you mentioned tool earlier, about aggregating data and I'm just wondering how I can arrogate all my pathology data so I can get a view of it. Is there a tool there now? If so, where can I get that?
Dr. Misialek: Jenny I know is developing such a tool. She's asked me to take a look at it and she's worked with a number of different specialists across the country to put together exactly these types of questions. Did you want to say a few words on that, Jenny?
Jenny: Sure. I'm working on a document right now that's called Deciphering Myeloma Lab Results because sometimes when you get these labs back, you don't what the creatine means or you don't know what the beta2-microglobulin means. Dr. Misialek is working with me and I've had help from several others to help put this document together. I know that the International Myeloma Foundation also have a tool where you can enter your labs and then it can help you graph some of your lab work. I'm also going to put together a spreadsheet that just tracks the most vital myeloma markers and allows you to put them in and just keep track of those files because sometimes when you get your lab results back they're pages and pages and not everything is critically relevant. So it might not be the number you want to track but there are some considered myeloma markers that you might want and then maybe we can evolve that document overtime.
Dr. Misialek: I would also add in that when you do ask your doctor about the opportunity to meet with the pathologist and if you do have that option, when you are with the pathologist ask them for the past information because just like a blood test, a CBC where everything is online in the computer information of the hospital, your pathology is there as well. We are required, I have mentioned earlier about one of our certifying agents is College of American Pathologists is that we're required to keep for at least ten years, the glass slides, the paraffin blocks from biopsies from patients, and certainly, the paper lab results are in the information system indefinitely. Your path results will be there and you can get a copy if you ask your doctors for those.
Caller: Okay, great. Thank you.
Jenny: All right. Thank you for the question.
Caller: Hi. Thank you for taking my call and this is more of a general observation but I have more general comments. When I was first diagnosed or prior to a diagnosis, when they were running a CBC and the C word, the cancer word was just never addressed with me. I never in a million years thought that's the route we were going with my blood work. My training physician's office, they were able to send me my lab results online and it was too much information for me. I would get these random emails, "Oh, you have new blood test result available online," and I would go and I would click on that and then I would try to figure out what's happening. I was going online and self-diagnosing. It was absolutely terrifying. For me, having that kind of information that with no one who'll actually sit down and go over them all at once with me was just not good. And so I think that sometimes too much information without help and deciphering that is just not good news and the results was that here I am almost two years later and I'm still afraid of looking at my lab results. Every time we get lab, I tell them, "No. I don't want to see them. Is everything okay?" And they say, "Yes." Then that's good enough for me. I think the more that we can educate patients that it's really important that we really do kind of pay attention to our lab results I think that’s pretty critical and after today's call, I'm going to actually start looking at my lab results again. Just a general observation. Thank you.
Dr. Misialek: I think that's a great observation. Thank you for calling in with those comments. I certainly agree with you that every patient is different and the involvement of a particular patient may vary from one person to another for the desire to know more about their condition. I think many of these online patient web portals where you can see your lab results or you do get these email notifications that lab results are ready, we could probably do a better job with helping to filter those or like the caller mentioned, not to overwhelm patients at once with all of this information just when patients are diagnosed and discuss the C word with their doctors. It's very overwhelming and it can be very overwhelming at home to just all of a sudden get all these lab results. I think both of those scenarios are a perfect opportunity to involve a pathologist to help explain some of these lab results. I would definitely encourage the caller and other listeners to ask about the opportunity to speak with the pathologist. Jenny: Well, thank you for your comment and for your answer.
Caller: Dr. Misialek, thank you for the time today. I'm definitely going to go seek out the pathologist next time at the next doctor visit. I didn't even know he was behind the curtains there.
Dr. Misialek: That's great to hear. Thank you.
Caller: So I'm going to shake his hand or her hand and say hello. But my question is will my doctor get upset if I am going directly go to the pathologist? Somebody I didn't even know existed before who was one of those lab people behind the scenes, will my doctor be offended if I'm going around him?
Dr. Misialek: That's a great question. That was something that we were actually a little bit worried about when we first started seeing patients and offered the opportunity to patients was that, "Geez, would our other clinicians, would they feel like we're stepping on their toes, overstepping our bounds?" and absolutely to the contrary. I can tell you that it was welcomed with open arms. The feedback from patients was overwhelmingly positive that they do enjoy it. It does give them better insight into their disease and my fellow clinicians have also been equally supportive. They do encourage it. They like it. I think it helps to coordinate care and in fact, it encourages care to stay in one place in that patients feel like they truly are part of this team approach. They have multiple doctors taking care of them under one roof. This sense of camaraderie, team work, really is enlightening and empowering to patients. When they do see this, I think it gives them more confidence in the care that they're receiving.
Caller: Thank you.
Jenny: Okay, thank you. Our last caller.
Caller: Mine is more of a tactical question. Do I need to bring my information with me when I meet with my doctor's pathologist or do you already have all this information in your system?
Dr. Misialek: That's a good question. We have everything. You can certainly bring paperwork with questions. As I mentioned earlier, some of the patients that we've met with bring family members. They'll bring spouses, children and people may have different questions or be able to remember things differently and it's often good to involve your family in your care. We've had a number of occasions where a couple of people come in and we will all sit down at the multi-headed microscope and look together. You need not worry about bringing in your lab results. We will have them in the system. We'll have your pathology reports. We'll have your blood work. We'll have radiology results. We will have everything and be able to pull it up if needed.
Caller: Thank you for the suggestion. I'm bringing my family there as well. Thank you for answering again.
Dr. Misialek: Thank you.
Jenny: What if you are attending or you go to two facilities? For example, so you're seeing a myeloma specialist and then you go to general oncologist for some of your care. You should probably bring what you have or do they have access to all of that if they've shared the records?
Dr. Misialek: That's a good question to ask your doctor when you go is that, are they on the same system of information sharing, the same electronic medical record as some of the other hospitals you might be going to. I can imagine a lot of the listeners may be having specialized care at an academic center but then returning to the community for follow up or more routine care. Often, those hospitals or those clinics are part of the same system. Generally, if a patient knows that their different facilities are in the same healthcare system, it's often a shared information system but usually if they're going outside of that information system for any one reason or another, the care may become disjointed and some of these information may not flow which is something we're trying to work on, something we're trying to have a better control over but it also brings us back to the point of centralizing care, keeping care within one facility, within one health system. Not only is it better, good quality care for everybody but your doctors will have all of the information at their fingertips.
Jenny: I have one final question for you because you mentioned that you're doing a lot of data gathering and research and clinical trials. Do you run specifically clinical trials and could we develop let's say a myeloma tissue bank for everybody, that everybody has access to and that everybody could donate to because that would be a treasure trove I would think.
Dr. Misialek: Yes, and those things are occurring obviously at the larger academic medical centers, there are protocols, there are clinical trials where many of these options or experimental trials will be available but some of that and many of those trials are even available to patients in the community. I know in my practice in particular, our clinicians participate in a nationwide cooperation of community oncologists who can pool their patients together and with numbers comes power and they're able to enroll patients in some of these trials that weren't originally available to a patient in the community. That model of care is definitely moving to the community and I think patients can feel confident of the care that they do receive. With this data mining and collection, we will definitely learn more. We've entered a new realm of discovery. Every day, we're learning more about cancers and I do firmly believe we will get to a point where we have many actionable such targets in myeloma that we're able to specifically target.
Jenny: We are looking forward to that day and it's great. It's wonderful. We have been very enlightened today by your interview. Thank you so much for sharing what a pathologist can help us to do for our care. Dr. Misialek, we're so grateful that you joined us today. Thank you for showing us that we have more help than we realized.
Dr. Misialek: Thank you very much. It's been a pleasure and I hope enjoying for the listeners as well.
Jenny: Oh. It's been very, very informative. So we wish you the best in your continued great work.
Dr. Misialek: Thank you very much.
Jenny: Thank you for listening to another episode of Innovation in Myeloma. Join us next week for our next mPatient Radio interview as we learn more about how we can help drive to a cure for myeloma.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.