Janet Freeman-Daily: I started coughing up green gunk and blood, which didn't look right. So I went to the doctor. Two rounds of antibiotics did nothing, and the doctor asked me to come in for an X-ray. I started to head out the door, and they called me back and said, “We want a CT scan.”

Neha Pathak, MD, FACP, DipABLM: This week on a special episode of Health Discovered,

Freeman-Daily: I drove home, and as I'm walking in the front door, my phone rings.

Freeman-Daily: The doctor's office called to say they found a mass in my lung.

Pathak: We're taking a closer look at a common form of lung cancer that accounts for 85% of all cases.

Freeman-Daily: When I first heard the words “you have lung cancer,” I was in shock. Um. I got a big glass of wine and put on a bad science fiction movie. I am Janet Freeman-Daily, and I've been living with non-small cell lung cancer since 2011.

Pathak: Non-small cell lung cancer—it’s a diagnosis that changes everything, and yet the conversation around it too often stops at the biology and misses what patients are actually living through every single day.

Freeman-Daily: I had exploratory surgery, and I remember while I was in the recovery room, a whole bunch of doctors came in and were standing around my bed. And it sounded an awful lot like the Charlie Brown situation where the teacher is saying, “Wah, wah, wah, wah.” I didn’t get any of it. So afterwards, I asked the doctor to explain to me what they did.

Pathak: Janet’s instinct to ask questions is more powerful than many people realize. The science shows that active engagement in your own care can meaningfully affect your outcomes.

Freeman-Daily: Fifteen years later, and I still write down all my questions. You only get like 20 minutes with your doctor. So I will ask the doctor if I can record the session, and then I can go back and review the session afterwards.

Pathak: But even the most prepared patient can find that the hardest part of a cancer diagnosis isn't the treatment itself.

Freeman-Daily: There are some things you used to be able to do that you can't do anymore. It's easy to become depressed when you're dealing with all those changes. And when you're depressed, you're not as good at taking care of yourself, and your treatments may not work as well. So mental health plays a really big role.

Pathak: And unlike almost any other cancer, lung cancer comes with a loaded assumption that patients somehow brought it on themselves.

Freeman-Daily: In lung cancer, you realize that you might encounter some stigma, whether or not you have known risk factors. Remember that anyone with lungs can get lung cancer, and no one deserves it.

Pathak: So what does it really mean to advocate for yourself when you're living with non-small cell lung cancer? How do you protect your mental health through a diagnosis that touches every part of your life?

Pathak: And what does palliative care actually look like? The answers when Health Discovered returns.

Pathak: To explore all facets of non-small cell lung cancer, I wanted to speak with someone whose work lives at the intersection of cancer care and mental health. Dr Donald Rosenstein is a professor of psychiatry and medicine at the University of North Carolina, where he serves as director of the UNC Comprehensive Cancer Support Program and division head of General Adult Psychiatry.

Pathak: He spent nearly 40 years working with cancer patients and their families and knows what it means to truly treat the whole person. Dr Rosenstein, welcome to the WebMD Health Discovered Podcast.

Donald Rosenstein, MD: It's great to be here. Thanks so much for having me.

Pathak: I am so thankful for you taking the time. So let's talk about the shock of hearing you have non-small cell lung cancer. For many people, the emotional toll of hearing something like that, a phrase like that, is as hard as the physical symptoms that they may be dealing with. So from your experience, what are some of the common emotional reactions patients have early on? And the second part of that is what are a few concrete things they can do in those first few weeks to steady themselves?

Rosenstein: So if you'll allow me, I'd like to start with just a general comment. As I was reflecting on this subject beforehand, and I've been working with people who have cancer for just about 40 years now, and over that time, I have to tell you, I've developed an inordinate amount of respect for my patients, their family members, their clinicians, because there's really no easy way to say it. That cancer diagnosis, and I think especially a lung cancer diagnosis, is hard.

Rosenstein: It's frightening. The experience is associated with shortness of breath at times and pain, and it can take so much from us, and that's just the truth and the hard news. But the inspiring part of this is that I've been amazed at the human spirit over the years and just the capacity for courage in the face of a really serious diagnosis.

Rosenstein: And so the first big message is that I do think that more times than not, people sort this out in their own way and in their own time. And having a lot of patience for how people get to what that sorting out is, is a big part of it. And so I would say the first thing to do is to take a beat and really take a deep breath, literally and figuratively. And the reason that's important is because in the first few weeks, things unfold so rapidly. The whole story isn't written in the first hours, days, and even weeks.

Rosenstein: And then the second thing I would do is I would gather information because I think that empowers people to know what your options are. I would seek expert opinion. I would maybe consider a second opinion if you need to. And I would go to trustworthy sources because there's a lot that's nonsense on the web. And then the last thing I would say initially is this is not the time to go it alone, even if you have a tendency to be stoic, stiff upper lip, and go about things on your own. This is the time to find people close to you and ask for help and accept that help.

Pathak: So many points that you made there that I think are so important, but I want to pull on one thread because I think it is really important when we think about a cancer diagnosis. That is shocking, but there's something different about lung cancer. I think there's this feeling often that lung cancer is associated with behaviors like smoking or maybe something we did. So there's sometimes a lot of guilt that's overlaid with the feelings, just in general, of like, why did this happen? So how do you help your patients acknowledge those feelings and then sort of move past them? What's the right way to think about tackling those types of feelings as well?

Rosenstein: You know, that's really tough and that's complicated. The first thing I would say is that it's a very common experience to have regrets, to have guilt, and to have a tendency toward self-recrimination in a situation like that. If you've been a smoker, I think the last part of your question is the most important one, which is what will be helpful going forward. And I want to loop back to that in a minute, but let's just stay with the guilt thing for a minute because I think it has to be hit head on.

Rosenstein: We can't really expect that if we have warnings on the side of cigarette packages and very graphic advertisements on television warning against the risks of smoking, that if someone were to be a smoker and then develop cancer, that they wouldn't connect those dots. And all things considered, it's better not to smoke in the first place from a health point of view, not just lung cancer but cardiovascular problems and others. And if you do smoke, it's better to cut back or to stop.

Rosenstein: The other thing is that smoking is a risk factor, but it's not the entire story, and we don't know the entire story yet. We all know people who were heavy smokers throughout their lifetime and they never developed cancer, and we know people who have never been smokers and developed lung cancer. It's a fact that the smoking exposure doesn't explain the whole thing.

Rosenstein: But having regrets about things that we've done is part of life, and it doesn't help to just stay there and it doesn't help to ignore it entirely. I think that is different from somehow drawing the conclusion that you deserve to have lung cancer. Nobody deserves to have lung cancer, whatever their kind of behavior has been. And so what I would say is that it's worth talking about that with someone so it's not just in your head, without trying to succumb to it and without trying to push it away entirely. But as soon as possible, move to the place that you talked about, which is okay, that was then. This is now. What can I do going forward? What are the choices that I can make now that will make a difference in how this goes?

Pathak: I love that. So I want to move forward in that line of thinking, recognizing two things: that we're talking about short term and long term. So there's going to be this long-term processing that's going to need to happen. So how do you help folks recognize that there's going to be a long-term process of shifting forward from “why did this happen to me?” to “what are my options?” What concretely should I be focused on right now? What are some of the concrete action steps that you give folks that, as they're processing, here's a way that you can really get out of your head and just also focus on what needs to be done right now?

Rosenstein: I have a lot of respect for the individual variability in this regard. Not everybody needs information delivered in the same way, and everybody's got their own style and preferences for this. This is a high-anxiety time. If you're not anxious about this, then you're not paying attention, as far as I'm concerned. I think that's a normal reaction. And so how do people respond to stress and anxiety? It's quite variable.

Rosenstein: I would say that the first thing to do is to try to get honest with yourself about what you need and what you don't need, and then prioritize what the most pressing needs are. So if that is getting a game plan from your doctor, even if that's going to change, just so I can organize my life—am I going to be able to work? Am I not going to be able to work? When are we going to know for sure exactly what kind of tumor type this is and what medications there are going to be?

Rosenstein: And other people may want to focus on kind of prognostic considerations early, but I wouldn't do that too early. And then I would get busy with the choreography of the cancer care because what's really cool about most modern cancer treatment centers is that they have the treatment process, the protocol down pretty well. And so figuring out where do I have to be when—what's happening first? Is surgery first, or chemotherapy first? Is radiation going to be in the picture? Just having a game plan, a treatment pathway, can really bind a lot of anxiety. Just feeling, okay, I at least have a plan going forward, even if that gets modified.

Pathak: I want to pull in something you mentioned earlier as well into this choreography that you're mentioning, that this is not necessarily a time to go it alone, to really pull in that social support network that you already have, whether that's your partner, other family members, caregivers, friends. Help us talk through how to pull in that network of support that we have.

Rosenstein: Honestly, is the short answer to that. Cancer is a hard thing to talk about with someone who you love and someone who loves you because it's scary. And what I would say is that this is such a critical part of the coping trajectory, and it can go really well or it can come off the rails easily. And I've seen it come off the rails a lot, and I recognize that the ones who are struggling are the ones that come to me.

Rosenstein: And so I see it when it comes off the rails, and it's usually people who are very well-meaning but not knowing quite what to do. Whoever it is that's helping someone out may feel like their job is to be a cheerleader at all costs and to stay positive and to stay in this mindset of this is going to be okay, we're going to get through this. We're not really hearing when someone is scared or when someone doesn't want to hear a positive message.

Rosenstein: And I wish I had a nickel for every time a husband or a wife said to me, “I just wish they would listen to me and not try to fix it.” And my response usually is, you’ve got to tell them that because people are scared and they do what comes naturally to them, and sometimes it just doesn't land right. Because what's needed is someone solid, stable, and with them but not trying to fix something that may not be fixable, at least not in the short term.

Pathak: Yeah, it's so important. I love how it comes back to the key word, honesty. So it's really just thinking honestly about how you're feeling and being comfortable sharing that with yourself, with your loved one, with your care team. And it strikes me that as someone who is newly diagnosed, you are also struggling not only with guilt but also, I don't want to be a burden on my family member. And so how do you help people kind of navigate that as well? Because it's hard to be honest when you are sort of struggling with how to navigate this other person's feelings as well.

Rosenstein: One of the things that I do think is helpful is it's okay when both people are up and optimistic, and it's okay when one person is up and the other person is dragging a little bit. And it's tough when both people are feeling overwhelmed and pessimistic and down.

Rosenstein: And so I do think that if you are the caregiver in this dyad, to be aware of that you each have needs. And part of the task is to read the room and kind of see when it is that you need to put your own needs on pause—not indefinitely, not completely, but just for a little bit—and then kind of loop back around to that or ask yourself, is there a way for me to get my needs met outside of asking this of my partner who has cancer and is going through treatment?

Rosenstein: What's so challenging but so beautiful when it happens is when they find that place where they can sit with the uncertainty, they can express love and support for each other, they can ask clearly for what it is they need and what they don't find helpful, and they can really move along in this uncertain pathway as a team rather than as two scared people who don't want to either burden or let the other person down.

Rosenstein: It's not easy to do, but it's beautiful when that happens, and it happens a lot. And this can be really helpful to talk with a counselor along the way, just to get some tips about strategies to have those conversations.

Pathak: Stick around. More answers to your questions after the break.

Pathak: Welcome back. Thanks for staying with us. I love what you said about it being beautiful because I do find that in the clinic, in the office, when you have this team coming in and saying, well, this is what's really important to us. And I heard you say on another podcast, from the health professional side, we don't have time to rush when it comes to communicating with patients and caregivers about those pieces that are most important to them.

Pathak: So talk to me a little bit more about what you mean by that and what it means to actually slow down in that office encounter.

Rosenstein: It's funny you should remember that, because that is a line that my father said to me when I was in college and it was exam time. And I called him up, very worried one night thinking that I couldn't get it all done.

Rosenstein: And I remember him saying, slow is faster and you don't have time to panic. Time is important. So try to be focused and clear about the things that you need to get done. I think that what is most helpful is a priority setting process. Taking a moment in a quiet time in between appointments with your clinicians to really say, okay, what's most important right now?

Rosenstein: What am I most confused about? Or what am I most worried about? Or what do I want to make sure that I leave the appointment knowing? Then writing that down, and then if you can bring a friend or a family member, someone with you to the appointment. It's really helpful because when you're anxious, it's hard to remember all the details, and so someone who might be able to take notes or remind you of something.

Rosenstein: But most clinicians work best when they have accurate information and can answer clear questions. Not 10 questions, maybe two or three that are most important. And so that's where the priority setting comes in. If you can go into an appointment and say, I've been thinking about this, and the thing that's bothering me most is that at night I get short of breath and I have trouble sleeping.

Rosenstein: Can we talk about that? It's actionable, it's clear, and it's not overwhelming to the clinicians that you're meeting with. I think that involves a little bit of preparatory work before you go.

Pathak: Yeah, that's really helpful, and I think having this sort of running list that you can shift, what's a priority for that next visit, is really important.

Pathak: How do you help people recognize that these are also important pieces of information for their team so that they can advocate for themselves?

Rosenstein: I love that question, and the reason I love that question is because in the last 15 to 20 years, the number of studies that have demonstrated that early and effective symptom management not only makes people live better and feel better, but live longer than if they don't do that.

Rosenstein: So these are not side effects. These are really centrally important aspects of the experience that also modify how the disease course and the response to treatment is going to go. And this is a really important point that I want to make sure that listeners take with them. There's no question that palliative care clinicians are very involved with end-of-life care, but mostly what palliative care clinicians do is just what you were talking about, which is identifying and helping patients manage symptoms, insomnia, loss of appetite, constipation, pain, difficulty breathing.

Rosenstein: Kind of a long list of symptoms that are not what you normally think of as, okay, what's happening with my cancer? The real question is, what's happening with your body as you're getting treatment for your cancer? And what palliative care doctors and other clinicians do is they actively manage and lower the symptom burden that people live with so that as they're getting their cancer treatment, they're getting good sleep, they're getting good nutrition, they're in less pain, they're more active, and they're more able to live their life along the way.

Rosenstein: They have less depression, less anxiety, and are less likely to get confused. People live longer. So again, the take-home message there is that palliative care doesn't necessarily mean that you're dying. What it means is you're getting active, focused symptom management care to make your life better and hopefully longer.

Pathak: What is so critical about what you said is that it is so important to empower our patients to focus on, or to make us focus on, what is the biggest signal to them. And the biggest signals are the symptoms that you're having.

Pathak: And so if you are able to share that, then that is critical for your longer-term outcome. And how you're going to do that is just a huge aha for me, the way you reframed that. I also want to talk about functional impairments, also financial impairments, other things that you might think, I don't want to bother my team about this.

Pathak: Talk to us about some of the other things you often see that people just feel, this is not something I need to talk to my team about. I don't want to burden my team about that. You really want to empower them to bring up.

Rosenstein: Yeah, it's not even just not wanting to burden your team with it, but it's often being worried that if you do mention it, it might change how they think about you or change how they're treating you.

Rosenstein: So for example, the latest data suggests that over half of people receiving cancer care have some degree of financial hardship. It's a very big deal, and it's not at all uncommon for people to have to choose between filling a prescription and paying their rent or buying groceries.

Rosenstein: The financial hardship, or what's been termed the financial toxicity, is real and it's consequential. And I know that a lot of patients are nervous that if they raise questions about, can I afford this, there's a worry that maybe they wouldn't get optimum treatment and recommendations from their doctors about that.

Rosenstein: And what I would say is that this is now considered standard of care in cancer treatment, to have someone screen you for financial concerns and then intervene with a financial counselor, social worker, someone who can help you address those concerns.

Rosenstein: I think that it's really the healthcare system's responsibility to respond to what the concerns are. And so again, I would encourage your listeners who are patients to feel empowered to state honestly and directly what it is that's getting in the way of them being able to go to work and keep their job, being able to pay their bills, being able to keep food down.

Rosenstein: If it's pain, some people are worried about seeming like they're seeking opioid medications, and so they suffer in silence. I think that this is a relationship with your clinicians, and it's important to be straight, honest, clear, and ask for help when you need it and not pre-filter it based on how you think someone is going to respond.

Pathak: Yeah, that is so helpful. And I think comprehensive cancer centers have really pioneered this within health systems, having someone who plays the role of a navigator. Because we've talked about now your cancer care team, potentially a palliative care team, psychiatry, counseling, social work, a lot of different team members that can play a role to help you with all of these different pieces.

Pathak: So can you help us understand how best to navigate these services? How do we find out who our navigator is? Who's that first call?

Rosenstein: I'm thinking that at times it feels like we need a navigator to manage our navigators. And what's really interesting about that is that it depends a lot on the treatment center, the site where you receive your care. And more and more there is a nurse navigator or a patient navigator to help with that.

Rosenstein: And usually that person is assigned. It should be pretty clear who's my first call. But what I would say is that there is a quarterback on the team, and the quarterback should be your oncologist, I think. And if you're really not sure, that's who you go to.

Rosenstein: It doesn't have to be a big deal. It can be a MyChart message through a patient portal or a question at an appointment. And just say, I don't want to bother you with all of my questions. Who should I reach out to? And within any functional oncology team, there's usually a point person for that.

Pathak: Yeah. You know, where I work, we have been trying to shift to ensuring that we're a high reliability organization, so really imprinting on all of us this “no wrong door” mantra, which is essentially that if a patient comes to you with any question, they have not come to the wrong door. That it's now your job to help direct them to that person that can help them answer the question.

Pathak: I want to shift gears a little bit to your field, to your specialty, and really spend the rest of our time together with your best advice. For when a patient is reaching out for psychiatry services within their cancer care framework, how would one ask for this type of referral? And what are some questions that someone can come to their care team with to get them to this type of counseling if they feel that they need it?

Rosenstein: One of the things that cancer centers are evaluated on is do they have a psychosocial support mechanism and do they have a process for identifying patients.

Rosenstein: And one of their standards is they require that cancer centers have a mechanism for doing what's called psychosocial distress screening. It can be anything from pain to constipation, to having trouble sleeping, to weight loss, to financial concerns, to depression, to parking and transportation difficulties and so on.

Rosenstein: Because what most places do is they have a mechanism of checking off how much distress are you in and what's driving that distress. And then it becomes the responsibility of the cancer center to look that over and say, okay, I think these kinds of issues are best addressed by a social worker.

Rosenstein: This issue is maybe we're going to send you to the pain management service for a consultation. Maybe we need to have you talk with someone in the parking office to see if we can get a parking voucher, and so on. There is no need that should be dismissed as being out of bounds.

Rosenstein: So again, I would encourage patients who are listening to not dismiss something that they think that they need or want help with, and to ask about it if they haven't been asked. And there ought to be a way either in the center or in the community to get those needs met.

Rosenstein: So in my area, the kind of psychosocial, psychiatric, psychological coping area, I would encourage people to have a very low threshold. It shouldn't take very much to say, I don't know if I'm depressed or not, but I'm really struggling. Am I still able to get through my day? Sure. It's an effort. I'm really working at it.

Rosenstein: Here's the worst-case scenario. You meet with a social worker, a psychologist, a nurse, a psychiatrist, and you find it unhelpful, so you don't go back. I think many more times than not talking to a mental health professional is helpful to people.

Rosenstein: And I recognize that there's a stigma. I'm happy to say that it seems like there's much less stigma in younger patients, so hopefully that's moving in the right direction. And what I would say is that the place to start, if you're uncomfortable, is with your oncology team. Very often there are social workers who are embedded in the team who have offices right in the same office suite.

Rosenstein: This is in the same category of active, early, effective symptom management.

Pathak: Yeah. I'm so glad you said that because as a primary care doctor, and we similarly have located in the same area behavioral health support, social workers, et cetera, I'm really interested in helping patients not only connect with behavioral health or counseling services when they are saying things like, oh, I have anxiety or depression, but also when it comes to coping with physical symptoms.

Pathak: Because we know things like fatigue, things like the unpredictability of what can happen with symptoms from day to day when you're going through cancer care. What are you seeing in terms of the role of behavioral health and psychological services for coping with some of these types of symptoms?

Rosenstein: There are many pathways to improvement. It really doesn't matter, at least to me, whether someone is doing better with counseling alone, with relaxation exercises, with certain safe alternative interventions, or even medication management.

Rosenstein: And more times than not, combination therapy is the most effective way to go. And so I think whatever works is what is most important, and it's very often a matter of trial and error. Quite frankly, you don't always know on the front end what's going to be most helpful.

Rosenstein: But a critical thing is to make sure, at least with the medication approach, that you're working with someone who is familiar with medical illness and familiar with the side effects of certain chemotherapies. You want to be careful not to have drug interactions that are either going to be dangerous or render some medicine ineffective.

Rosenstein: And so I do think that there is a role for expert consultation with people who work in this space. These people are called psycho-oncologists. And for those who are interested in learning more about this, you can search psycho-oncology. There are professional organizations of people who are dedicated to the psychosocial care specifically in the cancer setting.

Pathak: So helpful. I want to thank you so much for your gift of time today. If you could leave patients, families, anyone who's listening with one message about hope or agency or moving forward after a diagnosis, what would it be?

Rosenstein: You are stronger than you think you are. And the fact of the matter is that there is a beginning and a middle and an end to all of this for all of us. No one lives forever.

Rosenstein: That is small comfort when you get a diagnosis of cancer that threatens your life. I understand that it doesn't help to say everyone's going to die. However, I do think that having a serious threat to one's mortality, an existential threat, does provide an opportunity for connection, for finding meaning in one's life, for figuring out how to live with this thing as best you can and for as long as you can, surrounded by people that you care about.

Rosenstein: And so all of the things that we've been talking about, I think, are in the service of that. It's about how you're going to live. It's not about how you're going to die. Exactly. It's about, while we're here, what's most important to us? Who's most important to us? What are my priorities and how can I do the best I can being who I am as I'm getting this treatment for this bad thing?

Rosenstein: There's a really cool book that I read, and the title of the book is The Other Side of Sadness. And he talks about this notion of people's resilience even when terrible things happen. And what his data show is that people do better than you think they might.

Rosenstein: You're allowed to absorb a hit and not be right initially, but that doesn't mean that's the end of the story. So my message is believe in yourself, believe in the people around you, let yourself receive help, and try to find connection and meaning wherever you can find it.

Pathak: So beautiful. Really powerful. Thank you so much.

Rosenstein: Thank you.

Pathak: I'd like to share three of my key takeaways from this discussion.

Pathak: First, for anyone living with non-small cell lung cancer, the emotional rollercoaster you're on is not a sign that you're failing. It's a normal human response to an abnormal situation. Your anxiety, sadness, guilt, and anger all make sense in the context of what you're going through, and talking openly about them with your care team can be just as important as discussing scans and lab results.

Pathak: If it all feels like it's too much right now, it doesn't mean you're falling apart. It simply means your nervous system has been under strain for a long time, and there's real evidence-based help available.

Pathak: Second, taking care of your mental health is not extra or selfish. It's an often overlooked part of your cancer care and may improve your quality of life. Counseling, support groups, medications when needed, and honest conversations about fears, finances, family, and fatigue can ease suffering, improve sleep and coping, and help you stay engaged with treatment decisions and daily life.

Pathak: If you feel overwhelmed by where to start, take one small step, like telling your oncologist, I'm really struggling emotionally and need more support.

Pathak: Finally, you do not have to navigate a life-changing diagnosis alone. If your needs are not being met, it's okay to ask for the right kind of help. Involving social workers, palliative care team members, mental health professionals, and trusted family or friends can lighten the emotional load, improve communication at home, and help you focus on what matters most to you, whether that's symptom relief, more time with loved ones, or just making your day-to-day life a little easier.

Pathak: If the future feels frightening or unclear, remember you are allowed to slow the conversation down, ask more questions, and let your team know what you most want your life to look like right now and into the future. That clarity can guide treatment choices and support in a way that honors you as a whole person, not just as a diagnosis.

Pathak: To learn more about Dr Donald Rosenstein and resources for non-small cell lung cancer, check out our show notes. Thank you so much for listening. Please take a moment to follow, rate, and review this podcast on your favorite listening platform.

Pathak: If you'd like to send me an email about topics you are interested in or questions for future guests, please send me a note at [email protected].

Pathak: This is Dr Neha Pathak for the WebMD Health Podcast.