Ask the Nurse Series: Mesothelioma Live Q&A
Our goal is to answer your questions on asbestos and provide the appropriate information about mesothelioma to families battling from the disease to empower them to participate in making the decisions about their care, and to offer some measure of hope and support.
Welcome to the Mesothelioma Help Ask-a-Nurse interview session. We're privileged to be talking to a doctor and two nurses with Mesothelioma experience. Lisa Hyde Barrett, who has been a thoracic surgery nurse for nearly 25 years and has had the privilege of caring for countless Mesothelioma patients over the years, offers key medical information to the readers.
Ellie Erickson has been working in the surgical intensive care unit at Brigham and Women's Hospital since 1985. Before then, she worked in the cardio-thoracic ICU and the ICU float pool. She earned her diploma in Nursing from the Mount Auburn Hospital School of Nursing in 1978 and earned her BSN from Worcester State College in 1982.
Dr. DaSilva [inaudible 00:00:57] at Loyola University Medical Center and Professor of Surgery at the Stritch School of Medicine in Chicago. He is the co-director of the lung cancer program and the director of the International Midwestern Mesothelioma program, Cardinal Bernadine's Cancer Center.
So, we'd like to start off by first asking you, Dr. DaSilva, what program you're currently working on.
So, my program is really a comprehensive program. We have both chest, thoracic, pleural mesothelioma, as well as abdominal mesothelioma. Under a larger umbrella that we call regional therapy treatment for mesothelioma. Regional therapy really means heated chemotherapy applied to both the chest cavity, abdominal cavity with another surgeon by the name Pappas, he's a general surgeon, I'm the thoracic surgeon in the program.
To our knowledge, it's probably the first program to be so comprehensive [mesothelioma care 00:02:06] in the Midwest and we're very proud of it. Because many programs have thoracic or just have abdominal, but most of the programs do not have a purely thoracic or abdominal combined. So we're happy about that and that's what we're working on creating which we heard before a team approach. So we have a multiple disciplinary clinic with medical oncologists, radiation oncologists, thoracic radiologists. I'm afraid to say most of them are seasoned they're very experienced. Radiology, which is so important in the detection of mesothelioma, radiographically speaking. We also have a dietician, we have two nurses who help us to navigate the system. So we're beginning to put all of that team together.
The chemotherapy perfusion part of it, it's been already in place even before I got here by Dr. Pappas and they use the same system that I use at Brigham when I was at the [inaudible 00:03:14]. So for me, really it's the same procedure. We're just creating and uniting, putting together those two areas, the abdominal and the thoracic together under one umbrella. So we're very happy with that program.
Thank you for that. I guess the next thing we'll do, we'll jump right in and whoever wants to answer this can take it away. The first question we have is how is mesothelioma diagnosed?
It's a very good question. Most of the patients they present with what we call either a dry cough that's caused by a pleural effusion or shortness of breath. They just get short of breath because the effusion's pushing on the lung. Effusion is water around the lung, right? So for those who are not clear what effusion means, it's just water around the lung pushing onto the lung. Most of the patients present with that. They get treated for a while, it doesn't go away and when they represent a few months later, it may be too advanced of stage. So for us, the most important diagnosis is a very synced into the mesothelioma clinician.
What I mean by that: if someone has a high index of suspicion. Something doesn't look right for pleural effusion, the patient's too young or there's no lung mass, or something is not really clear why the patient has an effusion. Should pursue an aggressive diagnosis. And most of the patients they do do up, let's say a thoracentesis, a drainage with a needle, it's negative.
Well, we know that 50 percent of the effusion will be negative anyway. So we recommend more aggressive therapy approach, diagnostic approach such as a biopsy, a VATscopy, a pleuroscopy, in which a camera into the space and then biopsying it.
So the really clue for it a patient presents with a sort of, not clear why they have an effusion. And we should jump at it instead of saying, well, it's a cold or it's a pneumonia that's resolving for still farther diagnostic modality.
Do you plan on doing the abdominal and thoracic together? Or, just following the patient, or? How many cross over?
What we're planning to do is if they come in predominantly with abdominal disease then we'll take care of the abdominal disease first and then follow the patient and see if anything were to develop in the chest. On the other hand if [vice versa 00:06:08] if they present with chest disease predominantly then we do chest first and follow them knowing that the percentage of patients that represents with abdominal metastasis or spread through the abdomen. And then treat them when that happens.
By having the program set up so that we can see the patients together we keep a close eye. Myself on the chest point of view, and Dr. Pappas from the abdominal point of view both looking at the scans very closely.
And I think that's the best for the patient because I'm not an abdominal surgeon. I've been trained as a general surgeon. But that's all he does is abdominal cancer surgery. So he's more accurate as it's diagnosed in cancer than I am in the abdominal, and vice versa the chest. So we do the chest first if the disease is predominantly in the chest. Or [inaudible 00:07:04] ... The abdomen first if the disease is predominantly in the abdomen.
Hi; thank you. The next question that we have is can malignant mesothelioma be diagnosed early?
Doctor, can you hear us? Hello?
Should we continue?
I think so.
Until he comes back, Lisa and Ellie can guide these questions. So I'll re-ask it. It was, can malignant mesothelioma be diagnosed early?
I think malignant mesothelioma can be diagnosed early if you have known asbestos exposure. Recently we took care of a woman who had mesothelioma. Her father had passed away from mesothelioma. Her biopsy came back positive. She has three other sisters. They all got tested. I think two of the three sisters were diagnosed early disease.
So when I think when you have a family history it's easy to kind of watch and screen. Often times it's a difficult diagnosis if it's just one person. Like Dr. DaSilva said if you're young or something just seems astray. But, if there's any sort of family history I think that's a big red flag. Ellie?
Yeah, the exposure to asbestos, too, is proven. The exposure could be anywhere from 20 to 50 years ago. You really have to kind of think about it. And I think another point is... Memorial Day was yesterday. A third of all meso patients diagnosed in the United States are veterans. They're tracing that back to exposure to asbestos on the ships and all that.
I don't think you can, it is actually a test that you can say, okay, I'm going to take an early test for mesothelioma. It's just a lot of warning signs and family history like Lisa was saying. Like Dr. DaSilva was saying when something doesn't make sense that's usually... That can be the reason. But there is no, per se, test to say okay you're going to get mesothelioma in 20 years, 30 years, 40 years.
So going along with that what kind of signs and symptoms should family members and people be looking for?
Pneumonia, a lot of times people are diagnosed with pneumonia and they don't get better. We also noticed things like some people get injured. They might fall or play tennis. We've met a couple of people of playing tennis or doing something then they would fall. And end up with fractured ribs and just never get better.
The symptoms like Dr. DaSilva was saying, it's like shortness of breath, pneumonias that don't get better, pain. Sometimes it's a dry cough.
Shortness of breath.
Yeah. And just don't feel right. Some people just don't feel right. And pain sometimes, but sometimes not, you know? Sometimes people can present with pain. And sometimes people say they didn't know they had anything wrong with them except their chest X-ray was... There was something wrong with their chest X-ray. And that they also kept having pneumonias and it wouldn't go away.
Thank you. Next what is the typical treatment then for mesothelioma?
So [crosstalk 00:11:44]
Often the treatment is that you go to your primary care physicians with, like Ellie said, chest pain, back pain, shortness of breath, dry cough. You might get a chest X-ray like Dr. DaSilva spoke about there might be a pleural effusion or water around the lung. They might drain it. 50 percent might come back negative. But it re-accumulates and that kind of raises a red flag.
And then they might have to go for a biopsy. And again sometimes those biopsies come back negative. But usually they're followed with CT and MRI's. Once they're diagnosed they have to figure out how advanced the mesothelioma is. Is it gone into the lymph nodes? And that's through a small incision through your... Right in your chest and they stick a scope in. It's a very quick procedure under general anesthesia where they check to see if the lymph nodes have been involved.
If they have been involved then they offer chemotherapy first to shrink back the tumor. And then they would opt to take you to the OR and see if they can remove the tumor from your lung, maybe a pleurectomy or an extrapleural pneumonectomy. And again everybody's treated differently just like everybody has different fingerprints. Sometimes you take them to the OR and you think you're going to do one certain sort of procedure. And it's a different game plan once you get in there.
So you get chemo or maybe you don't get chemo. And then you go to the OR and you become an operative. And then you have to recover from that and sometimes it's followed with chemo or radiation, as well. It really does depend upon how advanced the disease is and what other kind of past medical history you have. Do you have a healthy heart? Do you have other comorbidities that go along with it?
So each person is treated very individualized. It's not like everybody who has mesothelioma is going to get this procedure. It's very individualized according to what your needs are and what obstacles that you have to overcome.
So the question, the typical treatment as like Lisa was saying, in this day and age there really isn't typical treatment. Everyone is treated differently. A lot of it also depends on your functional status, which is how can you take care of yourself? Can you participate in care? Are you able to cough and deep breathe? Are you able to ambulate? Are you able to... [crosstalk 00:14:26] in your treatment?
Maybe when people say a typical treatment for meso, that's why you really need to go to see your specialist like Dr. DaSilva or many of the ones that are around the country. Because there's always something new happening with it. And it's not stagnant. Two years ago treatment might not be what they're doing right now. A lot of times people get diagnosed and they don't go to a meso center. And really you're not doing yourself any favors by not going.
Especially in the United States there's enough of them around. There's enough professionals that are dedicating their life and they are making gains in this so that you really should seek out somebody like a Dr. DaSilva or a center. Is that what you think, Lisa?
I agree. Yes. Going to a specialist is key.
Once you've been diagnosed you want to find somebody who is very well versed in this disease process.
Yeah. And like we were saying earlier it's also a team. You want a whole team this is what they do. This what they're focusing on. They're up on the newest things. They know the clinical trials, and they know what might work for you.
For a primary care physician who might just see it once or twice in their career and is relying on the latest published data might not know that there are clinical trials, for no fault of their own. Whereas, the centers are much more specific and much more ... Oh, there he is.
Hi, Dr. DaSilva.
I'm back. I lost my connection as I drove in. So, we left at the early diagnosis, right?
Okay. Really for us, the most important thing is staging. As we all know the four stages for mesothelioma. One, two, three and four stages. First, stage one and stage two are considered early stage. And really, unfortunately, most of the patients when they show up they show up at advanced stage.
What's important is early diagnosis. You have to have a clinician where a physician, a family practitioner, or whatever that has seen that patient early in the game to be more invasive, more assertive what it is that he wants to be done. A lot of times physicians are concerned that those invasive procedures will add to the patient pain and suffering, which is not really true. We can do a biopsy today in an outpatient setting, same day, in and out of the hospital. Minimal pain.
I have really good tissue diagnosis. And early diagnosis is the best treatment. That's what I tell them. When it gets to mesothelioma early diagnosis is the best treatment. And that followed by multi modality therapy in early stage.
But when they show up with advanced stages in three and four then it's more challenge.
My next question would be how can one ensure early diagnosis?
You really have to be ... Patients shouldn't take a no for an answer. That's where I think the one point that I try to make. I go around the state in Illinois I give lectures about mesothelioma. And I tell patients and I tell physicians don't take no for an answer. If you do a puncture and a drainage out fluid and the result is negative. But the pleura effusion doesn't go away. Don't accept that as being negative.
Then you have to step up your procedure either by a pleuroscopy or by a CT guided biopsy, ultrasound guiding biopsy, you need to start invading the patient. Yes, it's more pain and suffering. It's an invasive procedure. But the price is much better if you don't. As soon as you get something suspicious and the diagnosis is negative but the effusion doesn't go away don't take that as a no answer. Just pursue other invasive procedures.
Thank you. The next thing that we would be wondering is what steps can one take to receive the best treatment? This is something we talked about a little bit while you were gone. We talked about getting a good specialized mesothelioma team. But in addition to getting a specialized team what other steps can one take?
That's a very good question. I think today people are more educated. And the information is easily accessible on the internet. So I think patients need to search for centers that have been treating mesothelioma or centers that are engaged in a malignancy modality, multi special treatment. What do I mean by that?
Well, I'll give a classic example. If you come to Chicago for one reason or the other, it's not really surgically driven mesothelioma treatment. What do I mean by that? Most of the academic centers will not be aggressive in the surgery end. Therefore, you're more inclined to get chemotherapy as probably the only therapy than if you went to another center which you can get chemo, surgery, either chemo or radiation following it.
So patients need to say, okay, if there is a doctor in Maryland who has this trial and it sounds like a great idea. But he's not talking about anything else about the trial. I'll say wait a minute. Everybody's telling me that, and it's written in the literature and published, that the best therapy is multi-modality therapy: chemo, radiation and surgery.
If the best results are with combined therapy why should I just go and get the latest, or the sexiest therapy? And no one's talking about the other modalities of therapy? If just because you don't have anything else, just because there's other interests behind that trial? So I say this to patients look for the best place to get treated and that has to be a malignancy modality center. In which they offer you all of the sub-specialties.
Thank you. And how about Ellie and Lisa? Any thoughts on that?
He's right. He's absolutely right.
Dr. DaSilva, what do you see about intraoperative PD chemo? Do you think that's the future totally? What do you think?
I don't think that's the future. That is the present.
The future ... We just acquired a mind-boggling intraoperative radiation therapy. So now we have a-
Radiation machine that we're openly transfer abdominal cavity. And we write in a protocol with our radiology oncologist. So we'll do the surgery, whatever we think it's too bulky or too invasive, question mark about the marks or whatever. We're going to bring the probe into the chest and just deliver local radiation. Never been done before. Very excited with that.
So- [crosstalk 00:22:45]
Is that a clinical pattern?
Well, but then, within a protocol. So I would say this, chemotherapy still is heated chemotherapy, mainly from my point of view, still is the best result for what we call local control after surgery. Not in place of surgery. In other words if you open the chest, done chemotherapy there, don't take out the tumor, I'm afraid nothing's going to change. The heated chemotherapy is really to control what's left around that we can't see.
And if there's question in margins or depth of penetration, because the chemotherapy has a depth in which it will stop working. Not radiation. Radiation can bust through it. So maybe that the future will be intraoperative radiation. Maybe in the future it will be something different, immunotherapy. But as it stands now the present I think it's surgery, chemotherapy, and intraoperative chemotherapy.
Now the intraoperative radiation therapy you do it intraoperative you follow it up later?
So the protocol is being written right now. And again, we're very excited with this because we got the machine and we're going to sell it lung and then mesothelioma is going to be next to it. So we're writing two protocols. One for lung.
So the whole idea is you can have lung cancer but we really can't take the cancer out. Can we remove part of it and just bust it with radiation? So when we wrote the protocol I said why can't we do this for mesothelioma? Has anyone done it for mesothelioma? And we looked it up and no. No one has done it. So we're very excited to be probably the first program to offer that. Now that's just adjunct to everything else that we're going to be doing.
So I think one of the ... Talking to patients and everything one of the things I think a lot of people have the impression that it's Cisplatin and that it's chemotherapy.
Or Carboplatin, right, based-
So within a protocol, Cisplatin based chemotherapy, we're just reviewing a book chapter that we wrote. It's coming out next year about that. So, the Cisplatin base, it works good for everybody.
So it's not an ideal drug but it's been time and time over and over again proven to be a safe drug, has good penetration, good killing of the cells. So what we've done is add different drugs to the Cisplatin base. So the Cisplatin will be the base of your house, the foundation. Because really what's across the border for cancer.
Then on top of that foundation we go with different blocks of chemotherapy. So Gemzar is one of them. Ellipta is something that we look into doing. Intraop, no one is doing it.
If you look in most of the research done in that area really triple chemotherapy will be ideal. The best result with cancer in general across the board whether it's GI, lung, mesothelioma, is with triplet therapy. So it would be carbon based, carbon toxin based chemotherapy followed by two other drugs on top of it.
So that's what we would say. There's so much going on that you have to-
Give yourself a chance.
That's right. And there's immunotherapy, target therapy. I want to make a point that patients, and patient advocates, really need to understand that most of the trials they are trials. They are not to be used in place of, or to replace the current therapy that we know it works. Which is chemo, surgery, surgery plus chemo/radiation.
Because if you start replacing, especially early stage disease, if you start replacing the multi-modality therapy that we know it works by a single trial then you're setting yourself up for... I'm going maybe to have to take this call, I guess.
Someone from Boston just called me. I want to put that in.
Imagine, I can't even pronounce his name because it's one of those foreigner names. Anyway, so joking apart, all I'm saying is you shouldn't be lured into doing a trial. A trial. A patient should go to a trial after the standard of care has been applied to that patient.
So a lot of patients come and ask questions, well, I want to see you but you said surgery, chemo. But Doctor X, Y, and Z in California has this new drug. It's a trial. Yeah, I say it's not the standard therapy. I would not suggest you do that. If you want to pursue that's fine. It's your life. It's your choice. As a physician I can't, surgeon, I really can't suggest that.
You've got to go through the steps. If those treatments fail, which, as we all know eventually they fail because there's disease progression and so forth and so on. Then you go into a trial because there's nothing else. Now if you go to a trial you may have burned bridges. No. The trial doctors are brilliant doctors. And they want to make sure that their trial works really well. And we support them. Of course, we have trials here, too. For lung cancer. Not for meso at this point, but for lung cancer.
And they put barriers in which to say if a patient gets X, Y, Z, can't qualify for my trial. They almost want to replace everything else for the trial. I think the trial is reserved for those patients in which multi-modality therapy is not really indicated. Or, a multi-modality therapy has been applied. It failed. And you're looking at early recurrence. And then, yes, I think you should go into a trial.
Thank you. I think a common question that our people, our viewers, would have is what do I need to do to participate in a clinical trial?
Right. So my point of view is there's a very strict, every trial has a very strict, very narrow window through which you can squeeze in. So I think the first thing you need to do is A) the type of mesothelioma you have. Cellular type, is that epithelial alveoli, is that mixed, sarcomatoid? Those are like the number one information the patient needs to know.
To say I have mesothelioma but they really can't tell what the diagnosis is? Uh-uh. No. You shouldn't be in a trial. You've got to have the diagnosis. That's number one. And that may require surgery. That may require invasive procedures which I was telling you before. So that's number one.
Number two is the patient needs to be aware that there's other treatment options. If the patient has been in a trial usually that's not... Prevent the patient to go into surgery multi-modality therapy. We still take those patients. But if you're going to go on a trial usually they don't want you to have the multi-modality therapy. They want it off. Other declaration.
So if the patient's going to go on a trial they have to know their stage, their type of cell, right? Mesothelioma cell. Stage they are in, that early versus late stage. Stage one or two, early. Stage three or four, late. But most importantly, we need to see the patients. If they can't tolerate surgery, in multi-modality a lot of times they can't. And then a trial it's different.
Are you making progress with sarcomatoid? I guess that's ...
With what? I'm sorry.
That's a very good question. I did a patient, my very first patient here in Chicago is a sarcomatoid mesothelioma. Which again, he had two biopsies in an outside hospital. First an ethelial biopsy, then a core biopsy, then a VATS biopsy. They're all negative. They couldn't tell. The chronic tissue, blah, blah, blah. He came to me and said I will not take a no for an answer my life is on the line. We have to go to open biopsy. I'm sorry to tell you that. You got to go to the OR. You got to have surgery, but I'm not taking that for an answer.
Looks like meso, smells like meso, runs like meso, has all the colors of meso. You have meso until proven otherwise. And it was sarcomatoid. It was high grade sarcomatoid. And that's why it's so hard to treat sarcomatoid mesothelioma. Because most of the cells they are so aggressive that they will not even eat the Carbotaxol.
So we did surgery and now he's going to get radiation therapy. So the progress, again, is aggressive surgery. It's sarcomatoid if you can't. All the way in. Or chemotherapy, we do have the [inaudible 00:32:13] now, we do have here, which I'm part of it, and I was just actually named a Co Director or something, a sarcomatoid clinic that we see Thursday afternoon.
So right, I guess, anyway they heard that. I do sarcomatoid surgery, they want me to be part of that. But, and I go to their clinic, to their meetings, and again it's another different meetings, it's a multi-modality.
And it's kind of disheartening to see that they really are against the wall. They don't have a lot of chemotherapy options. They do have some. And with the way that we play this they give chemotherapy, two rounds. If we see regression I charge in. If there's progression then I'll step back and then they try to figure out what's going.
But to answer your question, Ellie, there really isn't, at this point, something that we'll jump up and I will say oh wow, this is a miracle drug. There isn't.
Oh, boy. Now what about the new drugs? The new biologics? Are you having...
Yeah, so those are trials. That's going to take a while to really pan out. I think that what that Rafael Bueno is doing in Bringham, it's leading the ground. He's breaking ground. It's a few years from now. But I have to tell you that it's close as it's ever going to get to determine genetic material mutations to... What we call epigenetics... Someone said how much asbestos do I have to have to get mesothelioma? That's called an epigenetic factor. Something that changes the DNA after you're born like a grown up person.
And no one's doing more work on that then Rafael Bueno. But he's still five or six years away from actually getting some place. So when I learn about that and he and I talked about that several times, actually, the last three months for other reasons that we've been in contact, he and I sat. And I said, Rafael, I think you're still... That's great. It's the right direction. But we're not there, yet.
And he said yeah, we're probably five to six years out before we come up with something that will make a difference in the mesothelioma world.
But there is progress, though.
There is a lot of progress.
Yeah, I think that's the message you're getting it out.
Right. So there's a couple myths about mesothelioma patients and I learned that and people laugh at me when I say this. But one is you got to stay positive. You got to think positive. You have to understand there's hope. And you have to understand there's very intelligent, capable doctors all across the country. Medical oncology, radiation oncology, surgeon, they're passionate for what they do. They all are.
If you get on a table they all want more chemo, all want more radiation, they want surgery because of passion for what we do. And there's a lot of people involved with that. I was at AATMS in Toronto and the group in Toronto are very strong with radiation, followed with two weeks later with surgery. I'm going to adopt their protocol, as well. So there's people really looking into this.
There's another friend of mine from London. I should go visit him soon. He's got a different protocol with iodine. Of all the things. Iodine is [inaudible 00:35:16] in the chest. And get great results so I'm thinking oh my golly this is fantastic. People really going at it. At some point we're going to find the answers for this.
Yeah. I think you will.
You kind of touched on this in answering that last question. I wanted to ask how long or how often does a person need to be in contact with asbestos to have a high risk of developing mesothelioma?
Right, so that's a very good question. So there's two factors here. One is the amount of exposure, right? So if you're in a room like this closed, and it's white, pale. White with asbestos. Sometimes we get that from patients saying that I was working in the Navy and they put me down in a submarine or whatever it was. And we couldn't see each other because it's white like snowmen in there. And you know the exposure's really high.
And then they say, but I was there for two weeks. Well, it doesn't really matter. The matter is time. So here we go. Now we have something called the epigenetics, which is something that jumps over like a cell on a horse. Right? So the horse is your DNA. The cell is something that you put on the horse to drive it around.
So, the epigenetics is something that comes onto the horse, and changed the direction that horse is going. So, asbestos exposure, the more you have altered the horse more chances that horse will change its direction. In other words, the more chance the cell will change its direction into a cancer. That's one. The amount of asbestos.
And the other is prolonged time. For example, someone says, well, really I wasn't sure because my Dad was walking in it, bring clothes with asbestos I would clean every weekend or so, whatever it may be. But for 15 years. So then you have that little epigenetic factor jump onto the cell. Even though it's a small amount, throughout a long period of time until a certain amount of time the cell changes. It's cycling goes into cancer cycle.
So both exposure and time are input factors. Which one's more important? In our experience it's exposure.
So I say this because we saw a patient who once said I think I worked in the summertime in a camp in Australia. And the beds were full of asbestos, but, you know. I was 17, I needed some cash. And I did that for three weeks. But this is 40 years ago, 50 years ago. Yeah, but there was enough that left in there, and make those cells change in a different direction.
And that's the fascinating part of it. It's almost like a detective. You have to go back and find the reason for that.
So Dr. DaSilva is there a ratio of people who are exposed to asbestos versus who come down with mesothelioma and who don't?
Yes. The majority of patients don't. And that is the conflicting. But if you look into lung cancer 60 percent, 60, six zero, depending where you read, 60 percent of patients who have lung cancer never smoked. Not even though with cigarettes. 40 percent smoked.
But, if you go around and say of the patients who had lung cancer, present in lung cancer, what percent of them smoked? 90%. So there we go. And say, well what's up with mesothelioma? If you go around and say what percent of patients that are exposed to asbestos that has mesothelioma? The incidents is going to be low. But if you go back to the patients who had mesothelioma and say where do you work, were you exposed to asbestos? Yes the majority of them would be exposed to asbestos. So it crosses over.
I don't know if it makes sense to you what I just said. So, in other words if a 100 patients had been exposed to asbestos about one, two percent of patients would have mesothelioma. But if you can say, well forget about that. Let's see all the patients who had mesothelioma around the world. What percentage of them were exposed to asbestos? 90 percent.
Why is that important? Well, that tells you that asbestos, nothing else, all the components involved with it, but asbestos was the predominant factor to change that cell direction.
Are you seeing people from all over the world? Because it seems like there's... Are they coming? Or, will they come?
Right now they're coming from Boston. Which for me is the other part of the world. No, I mean, we've got people from Canada coming down here. We have... Illinois, Michigan, Wisconsin, they have what they call unions for pipe heaters and plumbers.
They call Locals, LOCL, Locals. So we sent 51 information set to those places and try and get people to come in here because a lot of people don't know there's a program up and running in Chicago. We do get them...
Some of them, Brazil was going to come and see me. And then they started to go for a trial first, which is perfectly fine. So, yes, we're open for business.
And so people from the Locals, whether they're symptomatic or not, come and see you?
No, only when they're symptomatic when someone saw... So, what I'm trying to send, I sent to the Locals because when pipe heaters or plumbers get sick they have to report they're sick to the Locals.
Then the Locals they don't know where to send patients. They said, well, we'll go to Boston, go to Maryland, go to some place else. Go to Pittsburgh or Philadelphia. Now, I'm telling them you don't have to send them out. I'm in Chicago. You can send them to us.
You brought up a good point at the beginning about patients navigating the system. That mesothelioma's an unique disease because I think a lot of people hear about it, probably in ads and all that's on the TV. But, they don't really know what to do about it. So, like you speaking it kind of gives it a face more than anything.
Can you speak a little bit about patients navigating the system? Because I don't think a lot of people know how to get into contact with you, or you know what I mean?
Right. So we've been working. I've been here since September. I'll take September out because it's one of those months just move in and then December was kind of another kind of down month. We've been here for about six months now. And I have put a lot of emphasis and contacting different local agencies, web connection, Cure for Meso, IMG, the study group for mesothelioma, and let them know that we exist.
There is going to be a publication. I think one of the sites for mesothelioma. And we're trying to get support from media here in Chicago to have either TV or newspaper advertise what patients telling that they had a good experience in our program. So, I think when patients go out and try to navigate there's a lot of misinformation.
So I think for this sidestep you don't have the input of both nurses and doctors highly involved in treatment and care of mesothelioma you should exclude them. The other option is to go to sites where people have the most hits and ask the question what are the places that I can go?
One of the sites list universities by location where you can go and get comprehensive mesothelioma care.
So that's a good site. But they don't know it. So they have to select which one's best.
Yeah. I think it must be very confusing for them.
Yeah. Now do you think in the United States and Britain, well I don't know how aggressive Britain is, but the United States are they leading in aggressiveness?
Yes. So is England. England's beginning... I should say the UK. Get them to change a little.
Not much. But a little. That's mainly because there's a new generations of thoracic surgeons coming up like myself. And we have this very selective group that we exchange information across the pond. And then they're completely more aggressive included in France and Belgium. Switzerland is beginning to do more. So...
That's good. Can you touch upon that, there's a little controversy in the meso world about the EPP's versus the pleurectomies versus, you know, whatever?
Yes. So every patient's different. Every disease is different. To say that one treatment fits all is wrong. I mean we do have passionate people on both sides of the stream, right? We have passion about EPP's, and have people passionate about pleurectomies. If you really select your patient appropriate to their disease stage with the correct treatment there really isn't different in survival. Okay?
Now the different comes from two points. One is staging. Again, the early diagnosis in stage and number of disease is paramount for survival of the patients. That's number one.
Number two, you can go and have an EPP and don't do without, or do a pleurectomy and do well. The issue there was wrong treatment for the wrong patient. You have to tailor it. A few patients will benefit from left ecto pleurectomy, early stage young patient is female. No question about it. With good pulmonary function.
Someone who is elderly and has got poor pulmonary function to take a whole one out, they might not do well. So we have to tailor your surgery. Having said that I for one have been a great advocate for saying you really have to select the patients for the right operation. The results, survival very little difference.
What is different is sometimes you have early recurrency or more recurrence in the pleurectomy side. But now we know that we can go after those with recurrences, as well.
I don't know if I answered your question. But we have as many patients one arm versus the other with long survival and doing extremely well.
Yeah, which is a good message to get out there.
That there is patients surviving. But more importantly, are doing well.
They're living. They're living a good life, a good quality of life.
And are you seeing younger patients, Dr. DaSilva?
Not yet. Didn't have it come my way, yet. I'm getting the pipe heaters and the plumbers. When I came here I thought pipe heaters? I thought they were extinct. Yes, they are except in Chicago.
But, you know I hope in all honesty, I hope I don't see young patients.
We're plenty busy. And we're passionate about mesothelioma care. But mesothelioma, as we all know, it's a dreadful disease. But we have hope. We have ways to treat those patients.
All right. What else? I think that's the important message that you want to get out here that in Chicago we are up and running. And there is hope.
Correct. There is hope. There is very intelligent, capable advocator physicians involved in the care of the patients. We understand much more about the disease now than we did 10 years ago. We understand much more about which treatment is better for every different patients than we knew 10 years ago. I think the future for mesothelioma patients is really bright.
I do not subscribe to a nihilistic approach. I don't believe in it. I don't believe giving someone a fishing rod is the right treatment although it might be for a few cases. But I don't believe in that. I don't subscribe to that.
I'm one of those half-full glass type of guys. So I usually tell a patient let's go. If you're up for it. I saw an 85 year old lady. She needed surgery. She says am I too old for that, Sonny? I said, no, you're not. You called me Sonny. You're not. You're on the schedule.
Again, positive attitude always helps.
Any other questions, Katy?
I think that's all the questions that I had so if there's any questions from you or Ellie, feel free to ask them. But if there are no questions we can conclude-
Dr. DaSilva, do you have a website?
I do. What I will do for you is I will send that to you.
But it's a lot, it's Loyola.something else. I have to go back and get it then I'll send it to you guys.
Just send it to us.
There's a website and we're trying to create a mesothelioma website. I don't know why all the website has two of my interviews, What you Need to Know About Mesothelioma. And wwww.loyolamedicine, one word, dot org. And then you have to search dot DaSilva, and it comes right up.
So what I've been working with the hospital now is to create my own website within the hospital website for mesothelioma. But somehow that has become a challenge for me, believe it or not, within my own [inaudible 00:50:45], but I'm used to that already.
Well, thank you.
[crosstalk 00:50:54] Yeah, I want to thank all of our nurses, Lisa and Ellie, and Dr. DaSilva for taking your time to talk to us and to answer some questions that people will have. If any viewers have any more questions please leave comments or fill out a comment card on MesotheliomaHelp.org, and we can provide more resources and answers for you.
So just before I go I also have a blog at the Loyola site. I'm going to send that to Lisa. I've been answering a lot of questions about mesothelioma and lung cancer in my blog. The month of March, February/March, we're the number one responders to the blog. I had the highest hits on the Loyola site.
And the reason why I just like to talk to patients. And the blog is a great way to answer the questions.
All right; great.
Well, thank you for sharing that.
Yes; thank you.
Okay; you're welcome. I'm sure Lisa will get all this information to you guys later.
Absolutely. Have a wonderful night.
Have a good evening.
You, too. Thank you very much.
Thank you very much. Good night.
Free Mesothelioma Patient & Treatment Guide
We’d like to offer you our in-depth guide, “A Patient’s Guide to Mesothelioma,” absolutely free of charge.
It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.Download Now