Ask the Nurse Series Mesothelioma Help 2013
Many of the people involved with Mesothelioma Help are also advocates on behalf of mesothelioma patients, so we take our responsibility to provide the latest information about the disease in a factual and unbiased manner very seriously.
The information provided on our blog is designed to complement, not replace, the relationship between a patient and his/her own physician.
Mesothelioma Health Ask A Nurse Interview Session. We have Ellie Ericson and Lisa Hyde-Barrett, Barrett, I'm sorry. Ellie has more than 30 years of experience with bedside nursing. She has been working in the Surgical Intensive Care Unit at Brigham and Women's Hospital since 1985. Prior to that time she worked in the Cardiothoracic ICU and the ICU Float Pool. Ellie is committed to raising awareness for asbestos dangers and asbestos related diseases. Lisa Hyde-Barrett has been a thoracic surgery nurse for nearly 25 years and has had the privilege of caring for countless mesothelioma patients over the years. Lisa is always looking for a way to make the difference and help patients through their meso journey.
My name is Lisa Barrett and this is Ellie Ericson as you can see as well.
My name is Ellie Ericson. Why don't we start with a question that we received. What would be the best way to help my cousin who was just diagnosed with mesothelioma and the first thing that comes to my mind is to be positive and to find out as much information, factual information about the disease that you can. To become more knowledgeable about it and to be positive to the point of, it is a serious disease. It is cancer. To look at the research. Look at the clinical trials. Look at what's going on in the mesothelioma world. Find some support groups for them. Find conferences. There's a conference next week in New York by Mesothelioma Applied Research Foundation. Look at that. There's an awful lot on the Internet and there's an awful lot of important things that you can help them with. What would you say Lisa?
I guess the other thing that I would add is I would try to get myself a mesothelioma specialist. There's a lot around the United States and I think if you have to travel a little bit, it's okay. They do have provisions to help you out financially sometimes or they have housing or something to help out. I would definitely go to a specialist, because they know what is cutting edge. They know what works and what doesn't work and people who have never seen mesothelioma, sometimes they can be very pessimistic about the prognosis and so again I would say get with a specialist.
Yes, absolutely, because what you'll find at a specialist is someone that sees it every day and you'll find someone that has a whole team that can support you and your family through this. You need a whole group of people on this journey, because it will be a journey with a lot of bumps, but there's a lot of, it doesn't necessarily mean the quality of life from now until the time that you die, the quality of life could be very good.
You need like Lisa said you need to get . . .
You need a team approach.
You need a team and you need a specialist. That necessarily doesn't mean you have to have your treatment in a far off city. Most of the time you can have the chemo, you can go there for the surgery and then go close to home for the chemo and the follow-up. A whole team that sees meso all the time, because it's a very rare cancer. There's only 3000 cases about a year in the United States as compared to what 230,000 of lung cancer and lung cancer is the most prevalent cancer in the United States. I would say the best way to help them is to get some knowledge.
Yes, yes, there are a lot of supports out there too. The American Cancer Society, the Mesothelioma Applied Research Foundation. There's a lot of supports that are available for patients.
You just have to reach out and let people know you're there.
Right, right, exactly and not to be afraid to reach out either.
Yes, yes. Because, there's progress being made and you want to be on the cutting edge of it and you want to get the best and help them the best way you can. I think that . . .
I think that pretty much, that's what we would suggest if you want to help your loved one.
To recap we would get as much knowledge that you can through the Internet, through the American Cancer Society, through reputable websites and then from there find yourself a mesothelioma specialist. They're out there. We're very lucky in the United States. There's been a lot of research and progress being made. Then go from there. Then investigate that and then again look into clinical trials or anything like that. Just kind of take your clues from the patient. Take your clues from . . .
Yes and some people might decide not to have anything done and you have to respect that, but that doesn't mean you can't support them. You can also go into pain and palliative care, that's what we would suggest.
The next question is, what will the next 12-18 months look like to someone just diagnosed with mesothelioma? What do you recommend for the family to do to make it easier on the patient? I think whatever the patient decides of the course of treatment. I think it's good to be with them and be there when they get their decision or their choices of what their treatment plan could be and support them. Maybe you think they should have surgery, but the patient is like I don't want surgery. I'm just going to have chemo. I think you have to support the patient. It's their decision and it makes life a lot easier when you have some support. 12-18 months of mesothelioma, it really does depend upon what kind of course you decide to take. If it's chemo, radiation, maybe you choose to do nothing. Maybe it's surgery. That road looks very different with every different option that is available. It's a tough question just to answer and not to be too vague about it.
It also would depend on the stage of the mesothelioma, the type of mesothelioma.
The location. Has it gone anywhere else. Also a lot depends on the functional status of the patient.
The functional status is can you do your own acttivities of daily living? Are you functioning? Are you able to withstand the treatment? That also brings up the point about the next 12-18 months is going to look different for every single mesothelioma patient, because every single mesothelioma is different and that's what the doctors have discovered, that every tumor has its own characteristics. Every tumor has its own almost identifiers.
Like a fingerprint.
Yes, like a fingerprint.
Everybody's situation is unique.
Everybody's treatment plan is going to be unique, because maybe you know you have some other medical issues that the next guy doesn't have and so all that has to be taken into consideration.
Yes and again you just have to, I guess at this point, the next 12-18 months during that time the most important thing, one of the most important decisions is your care team. You have to have a team that you can work with. You're all working towards the common goal that you feel comfortable with. That understands your wishes and goes from there. You just have to have that trust and maybe recommend to the family to even make it easier, it's like what Lisa said. Just be there and take your clues from the patient. Just do what you can. There's so many people in the world today that don't have a lot of support and that's what they need to get through and it's a difficult journey. Now let's see, the next question is how is mesothelioma different from lung cancer from smoking? Let's see, when the doctors do the test they will come out differently. Obviously the pathology of it will come out different.
It's interesting with lung cancer from smoking, that is one of the leading cause of lung cancer, it's the biggest cancer in the United States in both men and women which is kind of interesting. It causes more deaths than the next three cancers combined which are colon, breast and prostate. With that smoking is a leading cause of lung cancer and they also know that exposure to asbestos can cause lung cancer, can lead to lung cancer. It's kind of interesting if you're exposed to asbestos and that can lead to lung cancer, but it doesn't necessarily translate into mesothelioma. Again meso is very rare, it's only 3000 compared to what 220, 220,000 a year. The numbers are small on this disease.
The other thing is that trying to get a diagnosis of mesothelioma can be very, very difficult as opposed to lung cancer. A lot of times these diagnoses come from a biopsy maybe it's in the OR or fine needle aspiration, but mesothelioma can be very, very difficult to diagnose. Sometimes you will meet a patient who is already lined up for surgery and they had three attempts on getting a diagnosis because it's so difficult to diagnose. That's another reason why you want to go see a specialist, especially if you've been exposed to asbestos and you are developing symptoms that are out of the norm. Getting a diagnosis of mesothelioma is much harder than just the routine lung cancer that people diagnosed every day. Oftentimes people have fluid build up in their chest and that's how it starts. That's another difference between lung cancer and mesothelioma.
Now according to the American Lung Association, the combination of asbestos exposure and smoking greatly increases the risk of developing lung cancer. Nonsmoking asbestos workers are five times more likely to develop lung cancer than nonsmokers not exposed to asbestos, so if they also smoke the risk factor jumps to 50% or higher. Environmental factors can also increase the risk of lung cancer. I guess again there is different criteria for the lung cancer and mesothelioma.
The next question is about, my father was exposed to asbestos 30 years ago or so for over a year, no mask, working with asbestos. Should I be worried and is there anything he should do to take care of himself? There's no sign of anything, but worries me that he was exposed this much to the dust. I think I would be worried too if that was my father. I think that oftentimes people who are diagnosed with meso they will tell their siblings that they've been diagnosed and oftentimes the siblings will get routine serial chest x-rays to make sure that they are without any evidence of any growth in their chest. I would say if you could get a routine chest x-ray I think that's a great step and of course if you have any symptoms of, you know shortness of breath, coughing, pain in your back or chest. These are all very vague symptoms, but they do sometimes, that's how the onset of meso starts. I guess my best advice would be that I would get a chest x-ray routinely. Ellie, what would you suggest.
I would agree with you, but I think you'll also find physicians, a lot of the doctors will say, it won't do any good. They're just doing it more to placate you. I guess there's no evidence that would support that you'll be found earlier with lung cancer, with mesothelioma anyway. I would agree with what you said. Again, the number of people that actually come down the mesothelioma compared to the number of people that are exposed to it is incredible. It's estimated, it's like 20,000,000 people in the United States that are exposed to asbestos and again 3000 a year. The other thing that they're working on is there seems to be some genetic, maybe there's some familial genetic component to it. That's really what they're looking at. They're looking at different genes, like the BRCA gene, different ones like that that might provide a breakthrough at some point in research, but again it is a worry. There's no doubt about it, it is definitely something you just worry. You don't want to but you just worry about it. All right.
You want to go to the next question?
Yes, you want to do the next one?
Okay, so it says my father was diagnosed with mesothelioma recently and I would like to know what my family can do to assist him? What we should expect in the coming months and and any other tips you have? Thank you. I think it's similar to maybe a previous question or two, but one thing that does pop in my mind that maybe we haven't spoke about is besides getting the support and getting to a specialist I think the other thing would be that I would focus on nutrition if I could, because these people get nutritionally depleted so quickly. If you can keep their nutritional status up, their weight up, I think that that's 20%, 35% of just kind of staying healthy. Again I would get to a specialist. I would get support for my family. I'd get myself a team. It doesn't have to be a team of surgeons. You family can be the team. Who's going to take them for rides to the hospital or the doctors? Who's going to make life easier for them? I think that's what I would, how about you Ellie?
Yes, I agree and I think also, one thing that we talk about sometimes too is getting a notebook together and kind of keeping it all, keeping records of okay, yes in September he was diagnosed. October we started chemo. It's interesting to look back to and you can refer to them as the journey goes on. It gets very confusing when you go to multiple doctors. You have your primary care physician. You have your mesothelioma team. You have your oncologist. You have everybody and it just gets confusing for everyone. I would almost get a spiral notebook and put everything in it and just kind of file it away. It will help all of you more than anything. Look back and also to refer to it.
I think that's a great idea again and I just thought of one more thing, because sometimes when somebody gets sick, whether they have surgery or chemo and you have the patient in the center and then you have all the family members around them. The phone is ringing constantly because wondering how so and so is doing. They have a website called caringbridge.com where you can just kind of give daily updates, so people can logon and see how the person is doing and sometimes you can just designate one person to write on the website. Like got their second round of chemo today. They're hanging in there. They haven't lost any weight. It's just like little blurbs where you don't have to have a telephone constantly, having to call people and update them, because people really are concerned during it, wishing them well. Sometimes when you can just go on the website, put in a couple of remarks for the day or maybe every other day. It kind of pacifies everybody and everybody feels like they're still in tune with what's going on.
Yes, that's great. That's a great idea. Yes, that really helps a lot. Also as time goes on too, because at the beginning like with anything, at the beginning everyone rallying around, but life goes on, so after a while people are still interested but they have to lead their own lives, but the caring bridge really can help keep people connected as you go forward. Yes, that was a good one. Okay, so we have another question. I have heard that mesothelioma patients often have both chemotherapy and radiation and sometimes surgery. Sometimes all three. I know about the side effects of chemotherapy, but I don't know much about radiation and its side effects. Can you talk about that? I just want to re-emphasize that one point, it's not one size fits all. Sometimes people have chemotherapy, then they have surgery. Sometimes they have surgery and then they have chemotherapy.
Sometimes they just have chemotherapy and sometimes they have radiation. They have radiation to the chest wall. They have radiation to different things as the journey goes on. A lot of times people can have all three, right Lisa?
Yes, they do and so I would say the side effects that I'm familiar with radiation. I'm certainly not a radiation specialist, but usually if you go for radiation, it's consecutive treatments Monday through Friday to a certain area. Usually I think it's probably between 15 and 30 treatments. It can be very difficult. It can be very grueling. I think fatigue is the number one side effect. I think the burning of the skin, people will say that it was like the worst sunburn of their life. Again it depends on probably what area has been radiated that also plays into factors about what side effects you can possibly endure. Radiation isn't easy by any stretch, but it does help quite a bit if that's what's been ordered for your care.
A lot of times the radiation is used for pain. If the tumor is impinging on a nerve that's giving you a lot of pain. Sometimes it's used in the course of the treatment.
To shrink the tumor.
Shrink, yes exactly and after a pneumonectomy to get any other spots that might be there. Again, like Lisa said the fatigue is usually the one that people really complain about. They feel great the first week or so and then it just hits them the third week and it's just overwhelming fatigue. I guess that's, maybe we should say a little bit more to about, at this point about pain. Pain management has come a long way in the past 10, 15 years and a lot of the, there's specialists in that area. Pain and palliative doctors. There's ways to keep patients very comfortable, so that it's not something that they should be totally focused on, that the pain won't be under control, because they've come a long way in the last few years, especially with any of these side effects. There's creams, there's different things that people can do.
Okay, I think we'll go to the next question. I have read several of your blogs where you talk about palliative care and the need to plan for end of life. Even at the start of a mesothelial diagnosis, as a mesothelioma patient I understand the need for it and why. However, my doctor hasn't been very helpful. I need some information on what [inaudible 00:23:40] of a person offered palliative care. Where I should look. What is the correct terminology to ask my doctor, the right question so I can plan for palliative care? Kind of like if I had to look up someone in the yellow pages, where would I turn. That's a very good question and like Ellie said, a lot of the hospitals and medical facilities now have a pain and palliative care department. Oftentimes when people are diagnosed with cancer, not just mesothelioma, they are part of the team as well.
Ideally if you can bring in the pain and palliative care group right at the onset of your diagnosis and start building a relationship with them, because they'll get to know you just like everybody else, the medical oncologist, the surgeon, whatever your team is comprised of. They'll develop the relationship with you and they'll learn what works for you and what doesn't work for you and if the pain gets better. They really are very, very, it's a great asset to have on your medical team.
Yes, I think one thing, people when they hear pain and palliative care, they think oh my god, it's over. They think I'm not going to live and actually palliative care is control of symptoms. It's to make people as comfortable as possible with the symptoms. It doesn't necessarily mean that the end is near. Their focus is to manage the symptoms and the symptoms of mesothelioma, shortness of breath, pain, chest pain, so they can have regimes. Sometimes after surgery you might have a post-thoracotomy neuralgia or something like that. They're experts in the field. Where would you go? I think like Lisa said, they usually try to follow their team. Maybe you've got a mesothelioma specialist and now you're being followed by an oncologist.
Ask your oncologist, they would know. Because, the oncologist they work pretty closely with them, because the whole thing, the other thing that palliative care can do to is help with the psychology pain. The pain of having mesothelioma.
Help the anxiety.
Yes, because the anxiety, if you're short of breath, you get anxious, but if you get anxious before you get short of breath, they can work with you. Again, coming back to what I said before, if you have a notebook and you keep very good records of the pain, when the pain started, when it was its worse. That can help them get down to it, because it's tricky trying to figure out the pain regime and everyone wants you to be as comfortable as you possibly can. The way that they can do it is you're an active part of it. You just say, you come in with your notebook and you say okay, I have continuous pain. They say okay, well we can, for continuous pain we'll do this. Whereas maybe you're having a sharp neuralgia. Maybe you're having peripheral neuralgia.
Maybe if you have to stop the cancer treatments or the chemo treatments, because it's just too painful and debilitating. In order to sort that all out, you would be the expert on it. The patient would be the expert on it and then explaining it to the specialist could really help you. I would say your oncologist, your medical team like Lisa said for everything.
The one other thing I wanted to add which isn't really about palliative care, but another person I think who should be on the team is probably a social worker. Somebody who can kind of just sit with you and kind of figure out where you're coming from. Where you are emotionally. Maybe you just need someone to talk to or maybe you need some help with, I don't know, maybe with lodging or something. I think those social workers are really worth their weight in gold and so again I would get hooked up with a social worker as well. Because this is going to be a long road and the more support that you have and the more expertise you have, your road is going to be that much smoother.
Well that brings up another good point is caregivers and caregiver support. Caregivers, most of the care that's given now not in hospitals, but it's given by loved ones and family members at home. That's a huge burden. If you're not use to, burden probably isn't the right word, but it's a huge responsibility and if you're not used to, even if you are used to it, it's virtually impossible to take care of someone 24/7 and maintain your own health. There's a lot studies out there that say, that people that take care of someone and go through a long journey like this and then at the end if the patient dies, usually something happens to their health within a year. They're not sure of the reasons, but they expect that it's probably a collective stress of taking care of someone and going on this emotional journey with someone. It just takes a toll.
If you're the caregiver, you've got to remember to take care of yourself. You can't totally, you just have to make time for yourself and that's something that the families could do too. One of the first questions was how can we support my cousin. Well maybe you could take out your cousin's wife or your cousin's husband. Just go out to lunch or just do something to get them off of the whole thing. Caregiver stress is a huge thing that's being studied and just actually being recognized in the last couple years.
Okay, all right. Next question is I have read so much about genetic biome markets and oncologists who are leaning towards personalizing care for mesothelioma. Are you aware of any treatment or doctors checking for specific biome markers before prescribing a mesothelioma treatment plan? I am not aware of any specific biome marker that says you have this biome marker and you should have this drug. I'm not aware of any of that. I think a website I could send you to is maybe clinicaltrials.gov and you could plug in mesothelioma and I think that then you might be able to see if there's anything out there. I really don't know of a biome marker that says you have this biome marker and there's a drug available for you. I'm not familiar with that.
We can research it more. We can e-mail you. We can call you, whatever you prefer, but I guess we don't have anymore information on that. Do you Ellie?
The one, what was it, the BRCA1 that they're researching that runs in families, I think. That was the one that I had heard of and there was, yes, here it is, the BAP1, scientists have found that individuals who carry a mutation in a gene called BAP1 are susceptible to developing two forms of cancer, mesothelioma and melanoma of the eye. When they're exposed to asbestos the risk of developing mesothelioma may be markedly increased. This was a study from 2011 and the way they did it was it was two US families that had a high incidence of mesothelioma as well as other cancers. Again, like Lisa said it was out of the National Cancer Institute. It was funded. It was at the University of Hawaii.
There's a lot of that going on, bu that's all coming under personalized medicine. That's the advantage of having mesothelioma now instead of 10 or 15 years ago, that the research is being done and they're making breakthroughs all the time, so like Lisa said check out clinicaltrials.gov too, because they have that and the National Cancer Institute would have a lot more specifics. The clinical trial is very interesting. I think there's over a 100 right now clinical trials going on with mesothelioma. The statistics are only 5% of the patients participate in them. The way that research has to go to lead to a cure is through clinical trials. Again it's another thing that a family member can do or a friend to see, okay there's a few clinical trials going on over here that you might qualify for, let's look into them, because that's the future. That's where you're going to find your cure and your quality of survival.
Then there's another question. I don't have any family members or friends who are capable to taking care of me after my mesothelioma surgery. My spouse is ill as well. I've heard I will only stay in the hospital a couple of days before going home. If I go ahead with the surgery how can I get the proper care I need to heal properly? Would I be able to get into some kind of a rehab facility for post-surgical care? Unless there is an acceptable alternative I will not be able to have the surgery. I think there is alternatives. Usually after surgery and if you need more care than you can get to a rehab facility. A lot of times people go to rehab facilities for a week, couple of weeks. It depends on what they need.
The other thing is everybody, the best case scenario might be that you might stay in the hospital a couple of days, but everybody is different. Some people might be in the hospital for seven days, eight days. Some people might be in the hospital for two or three weeks. Some people might be in the hospital for two or three weeks and then go to rehab. Everybody's different. There are complications that can happen and the disease course might be different than what you expect. Maybe it's not what they expected when they operated on you. Things happen. I think if I was in this situation, I would call the social worker. Research what was available at the center that I was going to and go with that plan. I certainly would have the surgery. I wouldn't let this stop me, because again, it's every difficult to go through any of this without at least one support person, but if you absolutely can't, if you only have yourself you can have people call. You can form your own support system with the social worker and different people. What do you think Lisa?
I think absolutely. I think rehab is a great place for people to go if they have minimum support where you can physically get stronger and get back on your game. I think to where we live, oftentimes we have the visiting nurse who can come into the home a few times a week, so that helps. You could go from the hospital to rehab, get on your feet and still have the VNA come into your home. I don't know what your state requirements are in things like that, but there are options out there for people and so you're not kind of left high and dry and I certainly would research that. I wouldn't think that I wasn't going to have surgery, because there was nobody, because there's always somebody.
Yes, if we can help you with that further, please let us know.
It also brings up, there are a lot of resources out there for families too and caregivers. There's a lot of, there's Joe's House, McDonald. There's just different resources and Corporate Angels, people that will fly you to a center to get treatment. You just kind of have to reach out.
American Cancer Society. There's a whole bunch of resources out there.
Yes and a lot of them are free or with minimal cost. It'd be definitely worth it. Something like this if you get the best treatment that should be the most important thing. You shouldn't let anything, it's easy to say, but you shouldn't let anything else stand in your way, because there are resources. There are options and there's a lot of people that want to help you out there. I would look at resources also. Again with your husband being ill, you could also get him, see if maybe you could get him some respite care, so you wouldn't have to worry about him, while you're in the hospital or call on someone else to help him out as you get back on your foot. Again there are a lot of resources. There's a lot of information. It gets complicated. Feel free to call us or e-mail, whatever, because this is just a special interest of ours. We have a lot of information. We might not be presenting it well, but we have a lot of information.
That's the thing why this conference has kind of come to life is because oftentimes we see people who are just, their loved one had surgery and you watch the caretaker kind of fumble or the patient fumble. We just want to help people. There's a lot of groups out there that help. We're trying to promote the conferences that are in your local hometown. Like Ellie said, there's a lot of people who do such good work and Mesothelioma Awareness Day is coming up, so if we can do anything to improve someone's life who's been struck by mesothelioma we are all for it. We appreciate your time tonight.
Yes. That was exactly, exactly. Like Lisa said, there's a conference next week and there's also a lot of websites out there too that are very informative, the National Cancer Institute. I would Mesothelioma Applied Research Foundation. The NCI, National Cancer Institute plus the American Cancer society. There's a lot of them. They all have up-to-date information. I would encourage people to look at those sites and to go from there, yes.
Contact us if we can help you in any way.
I'd like to thank Ellie and Lisa for taking so long today. Really great questions. Really great answers. A lot of really informative information there. This is the first of a series of interview sessions that we're going to do, so feel free to get your questions in and we'll post on the Mesothelioma Help website the next updated schedule for the interview series, but again thank you, thank you so much for taking the time. A lot of great information.