What Are the Best Actionable Resources Available for Lung Cancer Patients?

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Topics include: Living Well , Patient Stories and Understanding

What resources are available to me during and after lung cancer treatment? What financial resources are available if my insurance doesn’t cover costs? Can having second-opinion conversations actually be good for your health? Can the role of faith help? Meet lung cancer patient Matt Ellefson, oncology nurse Katie Michelson, and social worker Sandra Manley-Eichler, as they join forces to share how you can most the most of resources available to you today.

The Living Well With Lung Cancer series is a Patient Empowerment Network program produced by Patient Power in partnership with SURVIVEiT® and the Lung Cancer Awareness Month Coalition (LCAMC). We thank Celgene, Helsinn, Novartis and Genentech for their support.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

And greetings from near San Diego—Carlsbad, California. Welcome to this Patient Empowerment Network program produced by Patient Power. I’m Andrew Schorr, your host for the next hour. We have a lot to cover, as we discuss what are the best actionable resources available for lung cancer patients? I’m very excited about our guests today and to bring you the information that you need. I want to thank our financial supporters for this program, and they are, of course, Celgene, Helsinn, Novartis and Genentech; and also, our partners in this program, SURVIVEiT, and the Lung Cancer Awareness Month Coalition. And as you know, as we do this program, this is the very end of Lung Cancer Awareness program. But that needs to go on, day by day, month by month, year after year. And hopefully, as therapies are improved, you can live longer and live better, even if you’ve had a diagnosis of lung cancer. And let’s all pray for cures. 

But what resources are available for you as you proceed? That’s what we’re gonna be discussing. Now, if you have a question, or a comment, or a suggestion of something that’s worked for you, send it in now or anytime during the program to lung@patientpower.info. Again, that’s lung@patientpower.info, and we’ll do our best to answer your questions and include your comments. And remember that there will be a replay of this program available soon thereafter, within a few days, and video clips discussing the individual topics that we’ve covered.

Should we get started? Okay. So, I’m in California, but now let’s go all the way over near Sarasota, Florida, Longboat Key, and connect with my friend Matt Ellefson. And he’s been on our programs before. I know Matt really well. And man, Matt, you’ve been living with lung cancer for almost eight years now, the end of this month, with six recurrences along the way.

And of course, you founded SURVIVEiT back in 2013. First of all, thank you for being with us, and you’re looking good. 

Matt Ellefson:   

Well, thank you, Andrew. It’s always a pleasure to be part of your organizations. They’re so informational and helpful to those who need to hear it. Thank you for that. 

Andrew Schorr:

Now, we’re talking, Matt, about resources, and certainly, SURVIVEiT is a resource. And you’ve worked with so many other organizations, and you’re aware of it. People with lung cancer today should not feel alone, should they?

Matt Ellefson:   

No, no. Never, never. And that’s one of the biggest things that SURVIVEiT stands for, is nobody should ever face cancer alone. And I don’t care if you have lung cancer or what cancer you have. You should never face it alone. And it’s our goal to be sure that nobody ever faces a cancer diagnosis alone.

Andrew Schorr:

Well, we’re gonna talk more about it. We were dealing—I was talking earlier today with someone else who’s a mentor in the lung cancer community with a more rare subtype, Janet Freeman-Daily, who has the ROS1 mutation. And not everybody knows whether they have that mutation or another. And so, we’ll talk about that. How do you connect with others, and maybe, then, there’s a subcommunity that can help you as you move things forward. So, Matt, it’s a family affair in your family.

There is another guest we have, and I want to go to Katie Michelson, who is with the Cancer Care Institute in Rapid City, South Dakota—your home state, Matt. And Katie’s your niece. Katie, welcome to our program. 

Katie Michelson:               

Hi, guys. Thanks for having me.

Andrew Schorr:

Katie, you are very devoted to cancer patients that you see in South Dakota. Would you agree, though, that patients need to speak up when their care team works with them, and that often, there are resources that can help—sometimes financially, emotionally, connecting with other patients and other families that are going through it, and the right care?It’s that relationship, but the resources are there, wouldn’t you agree? 

Katie Michelson:               

Right. It’s about building the relationship and having that open communication with your provider and the nurses, pharmacists—everyone within the system.

Andrew Schorr:

Great. Well, communication is important. Now, there are emotional things that go along with it. And that’s where our next guest really comes in, an oncology social worker from our partner, the Lurie Cancer Center, Sandra Manley-Eichler. Sandra, welcome to our program, an oncology social worker. When someone’s diagnosed with lung cancer, it’s a pretty heavy load for the family, and certainly for the patient. And people like you are there to help, right?

Sandra Manley-Eichler:

Certainly. I think it’s a really great part of my job. I really enjoy the work that I do. And I encourage all patients and families to reach out for the support that they need.

Andrew Schorr:

Well, let’s get started. So, first of all, Matt, how did you find out what might be available? I mean, you were diagnosed, you were coughing up blood, right?

Matt Ellefson:   

Yes.

Andrew Schorr:

Oh my God, what’s that? And then how did you go from the terror of that to getting grounded again and starting to see who could you network with, what, where do you go? How did you do that?

Matt Ellefson:   

You know, Andrew, the first thing I did was say a prayer. And I believe God answered that prayer. And he was able to call me to the point where I was able to—okay, it’s battle on now. I’m in battle mode. And I did—I researched, and I searched, and I looked. And my wife and my brother-in-law helped. And we were on three laptops. We kind of divided and conquered, and we just tried to learn as much as we could about cancer, about lung cancer, and my specific type of lung cancer, and what I needed to do to treat it effectively—where I needed to go for a second opinion. 

Who should I talk to? And the biggest thing, though, that I wanted to do was talk to somebody, a stage IV survivor, that was living a happy and productive life. I wanted to see them, and I wanted to ask them, what did you do? How did you get through it? But I couldn’t find anyone. I couldn’t find anyone. And so, I said, you know what? If they aren’t out there, maybe I’ll be the first one, because I’m not giving up. I’m going through this. And God answered a prayer, and away I went for a second opinion. And I ended up at that cancer center in a clinical trial that proved to save my life.

Andrew Schorr:

Right. And then of course, you’ve been continuing to get informed about did you have certain mutations, what tests did you need. If one medicine pooped out on you, and you’ve had that, was there another medicine approved or in research, a trial, that you could benefit from? So, let’s talk about that for a minute. Katie, you’re at a community cancer center, where most people are treated, community cancer centers. 

How do they connect with the information? And let’s face it, lung cancer, aging, there’s been a lot of research. There have been a number of new treatments, immunotherapy, all that. So, what—we talked about communication. What should patients be saying, rather than just feeling so forlorn that they’ve been diagnosed with such a life-threatening condition?

Katie Michelson:                 

I think, again, having open communication with your provider. It’s important to listen to what they have to say about your diagnosis and treatment options, but instead of just listening, also ask a lot of questions. Ask what are other treatment options? What are genetic testing that I can do? People are well informed if they ask questions. I feel like that’s the most important part.

Andrew Schorr:

Right. Sandra, you’re in an academic medical center, and so, you have a lot of research trials going on too. So, first of all, people say, oh my god, I’ve been diagnosed. Does anybody else have it? 

So, maybe you can talk about how do we make connections for patients, and how do also they make sure that the full range of treatment options are available to them? How do you coach people about that?

Sandra Manley-Eichler: 

So, I often work with patients, and I recommend kind of like what Katie was saying, asking a lot of questions of their physician, and not necessarily asking about the resolution from their physician. So, asking where can I find a resource to connect with other lung cancer survivors? And that connection could be, like what Matt was referring to, something specific related to your own diagnosis. I wanted to know – I want to hear from somebody else who has stage IV disease who’s living their live. Where do I go for that? The same thing with treatments, clinical trials, etc. We are fortunate that we are in an academic medical center where we can get connected with a lot of different groups of people with clinical trials, as well as the physicians. 

But I think that it’s more than that. It’s sort of you figuring out what is your next step? Because I think when you’re first diagnosed, I think as we know, it can be really scary. And so, at first, it may be a little too intimidating to go right into it. So, sort of taking time and being patient with yourself, and figuring out, is the next step that you want more information, or is it more support? And only you as the patient could know that. 

Andrew Schorr:

Go ahead, do an ad for oncology social workers like you. And when I was first diagnosed with leukemia many years ago, it was a social worker who sat down with me pretty quick at the major cancer center I was at, and we chatted. And I think if you’re consumed by fear—you, or your spouse, or family members that are with you—you can’t—you start talking about resources, and you’re not even there. So, I think dealing with the emotional overlay—how do you get that out of the way first, Sandra? How do you lift that cloud a little bit? 

There’s still tremendous uncertainty, but how do you lift that cloud so then when you say, well, you can call this number, and you can apply for this, go here and go there, you can think about it? 

Sandra Manley-Eichler: 

I always joke with my patients that I feel like I have a whole stack of papers that I just throw at them. And I say, “Well, here you go.” And obviously, the joke is that that’s not gonna be helpful, right? Like you said, you’re sort of consumed with fear. There’s a lot of paralysis, I think, that comes in. And what I recommend is trying to just take one thing at a time. And that’s easier said than done, of course. Something that’s actually evidence-based for cancer-based stress and anxiety is mindfulness practice. Mindfulness-based stress reduction comes in many forms for many different people, whether it’s meditation, or one-to-one mindfulness practice, or even a lot of electronic resources and apps available for that, local courses. 

And so, finding some way that makes it easier for you to focus on one thing at a time. And that can be through soliciting the help of friends and family to do that, or through working with a counselor, or, like I said, just engaging in an actual mindfulness practice. There’s a really good book—you can find it on Amazon—Mindfulness-Based Cancer Recovery. You can get it at your local library as well. And I recommend it for all my patients for exactly that, that anxiety that comes in and that overwhelming feeling.

Andrew Schorr:

Okay. So, first resource besides that book is wherever you were being treated, ask if there’s a social worker you can talk to, and they can help guide you through that. We’re gonna talk about other things social workers can do. Related to the jargon of lung cancer—so, I used this word “mutations” before. Somebody’s diagnosed with lung cancer. They’re terrified, and they have had no training. Nobody goes to school, if you’re not in the medical field, to learn about any of this.

And the doctor starts talking about this mutation, and that test, dadada. How do you, Katie, recommend people cut through the jargon to begin to understand?

Katie Michelson:               

Well, in our practice, we utilize nursing navigators a lot to kind of take the time to go over what each targeted therapy would be for their specific diagnosis. It’s important to break it down into layman’s terms so that you understand what’s going on better. And specifically in our practice, we rely a lot on the nurse navigators and on the social workers to help us with that. Obviously, if patients have more specific questions, we can sit down and talk about that further, and talk about it in more detail. But initially, I think it’s important to just kind of keep things simple at first. 

Andrew Schorr:

Right. But ask. Ask.

Katie Michelson:               

Right.

Andrew Schorr:

So, Matt—so, you talked about, of course, your faith. But how did you lift the cloud or the terror of the diagnosis for you and your family, and then have this plan? You said, well, we’re gonna get a second opinion. What does that mean? What are they gonna do? What’s gonna happen to me? Where should I go next? How do we pay for it? How did you march through that with you and your family?

Matt Ellefson:   

You know, you just do the best you can. You said it well, and so did Sandra and Katie. The patient does not know. None of us are studying lung cancer ahead of time in anticipation of receiving this diagnosis someday. So, it’s something that’s new to us. And cancer is very complex. It is not something you can learn in two days. And you feel as a patient that you have to make decisions really quick. You have this disease in your body that’s doing its best to kill you. I mean, it is terrifying.

And so, I think one point that I want to make to patients is it’s okay to just calm down, give yourself a couple of weeks, and really understand all of your options, and not be so terrified to jump into something immediately. And that was really my most difficult, most difficult time, was from the point when I was diagnosed until I began treatments, I was going—it was terrifying. It was just horrible for me. I think my oncologist handled it really well, because at that time, I was really not convinced with this treatment plan. It didn’t fall into line with what I had researched. And I wanted to ask around a little bit. I wanted to check—I wanted to get a third opinion. And he said, “That’s perfectly all right. You do that.” And I said, “How much time do I have?” And he said, “You go ahead and take a couple of weeks, but I wouldn’t take any more than a month, because we want to get started.”

And I thought that was handled really well, because it did allow me then to slow down a little bit. I realized that cancer, it may be aggressive, but it isn’t something that’s gonna change overnight. And that’s the fear that a lot of us patients have. We think that, boy, by the end of the week, it’s gonna be growing so bad, we’re not ever gonna be able to stop it. And that’s just—that’s not true. So, people need to really need to be sure that they understand their diagnosis fully, ask all the questions. And SURVIVEiT provides a great tool called “21 Questions to Ask Your Oncologist.” It’s a free, downloadable tool at surviveit.org. Go through that list in detail with your oncologist, and just be sure you understand what your options are available to you, and that you’re making the right choice.

Andrew Schorr:

Well said. I want to tick off some other resources people—Matt, you and I know, in the lung cancer community, there’s some other groups. There’s the Lung Cancer Alliance. There’s Free to Breathe. There’s the Lung Cancer Foundation of America, the Bonnie J. Addario Lung Cancer Foundation. There are all these groups that you can call or go on their websites, and they can often connect you with other patients, and they can also help you—guide you, for instance, if you’re trying to seek a second opinion, where is maybe a center you might go to where there’s a lung cancer specialist? Maybe even, if you’ve been identified and had the right diagnostic testing, where there might be research into that mutation you have, that type of lung cancer, or is there a specialist in small cell lung cancer, if you have that, right? 

Matt Ellefson:   

Right.

Andrew Schorr:

So, you’re gonna—what we’re finding out now is different subtypes of lung cancer. And then I just want to put in a plug for Facebook, because there are a number of lung cancer Facebook groups as well. And I mentioned this more rare mutation earlier, ROS1. So, there is a group of people with this rare ROS1 mutation worldwide. There are groups for small cell lung cancer. And there are certainly many groups for lung cancer and all this, and advocates. So, we kind of triangulate this.

So, Sandra, it sounds like a lot of work, though. I mean, a lot of people might say, “Oh my God, I’ve been diagnosed with this life-threatening condition. I just want people to just take care of me.” But it sounds like today, if you can martial family and friends around you, though, you do have a lot of horsepower to be a knowledgeable consumer. I mean, you want to say, heal me, but on the other hand, you want to make sure that all your needs are taken care of.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on March 7, 2018