Neha Pathak, MD, FACP, DipABLM: Welcome to the WebMD Health Discovered podcast. I'm Dr Neha Pathak, WebMD's Chief Physician Editor for Health and Lifestyle Medicine. In today's episode, we're going to talk about cancer survivorship. Despite cancer affecting millions of Americans every year, we rarely talk about the wraparound impact of the diagnosis on ourselves and our loved ones.

There's also the misconception that cancer survivorship comes to an abrupt end when you finish treatment. That's why we're sitting down with an expert in the field to highlight this often-overlooked experience and discuss how survivors can cope with the anxiety and fear of recurrence, the trauma that cancer can leave behind, the emotional toll of grief, loss, changes in self-image, and the complexities around parenting while also trying to survive with a cancer diagnosis. 

We'll explore how to rebuild relationships, connect with loved ones, and find support in the survivor community. Because no one should have to walk this path alone. This episode is all about providing practical advice, emotional validation, and hope for the future as you continue your journey beyond cancer.

It's a conversation we don't want you to miss. But first, let me introduce my guest, Dr Donald Rosenstein. Dr Rosenstein is the director of the comprehensive cancer support program at the University of North Carolina at Chapel Hill. He's a tenured professor in the departments of psychiatry and medicine and also serves as division head of general adult psychiatry.

Welcome to the WebMD Health Discovered podcast, Dr Rosenstein.

Donald L. Rosenstein, MD: Thank you so much. It's great to be here.

Pathak: Well, I am very excited for our conversation today, but before we jump into it, I'd love to ask you about your own aha moment or health discovery around the importance of your work in cancer survivorship.

Rosenstein: The first one was when I was working at the National Institutes of Health years ago, and I felt like I was a double agent because I was and am the father of a now young man who has severe autism. And in my official duties, from time to time, I would be at government research agenda-setting meetings. I felt like I was listening through two sets of earphones. One is as a government science employee, and the other is a parent. Fast forward many years later, my aha moment came in doing work with parents who lost a co-parent to cancer and then were raising their children on their own as they managed their own grief and their children's grief.

That kind of work pointed out very clearly to me that we can't do health care without the voices of patients and family members, and it reminded me of those early days when I tried to keep separate in some ways, my role as a parent, my role as a physician.

Pathak: I'd love for you to then help us define some terms. Define what cancer survivorship is in the medical context. And how are you marrying that with what it means to people who are living and experiencing cancer in their lives?

Rosenstein: It's a wonderful question and one that's generated a lot of writing, discussion, and revision of some of the definitions by the National Cancer Institute. Probably about 10 years ago, there was a revised definition of cancer survivorship to include from the moment of diagnosis on and well into time past active treatment.

Not everyone agrees with that definition, and I can tell you that I've had patients and family members, and when I've asked them, do you kind of think of yourself as a cancer survivor, they would say, well, I'll tell you in a year or two or three, I don't know that yet. And so for much of the cancer survivorship work, it's been focused on a time of transition from when active cancer treatment comes to an end. Then, there's a transition into the post-active treatment phase. I think that works for much of survivorship work. I also think that for many people, focusing on survivorship issues from the time of diagnosis makes a lot of sense. I don't know if there is ever really a hard endpoint when that stops.

So, how far out do you consider yourself a cancer survivor? If you had cancer and it was treated definitively and you're doing well, 5 years, 10 years, 20 years later, is that still survivorship? In some senses, yes, but in others, I think it becomes less pressing.

Pathak: When you first approach someone that your team is going to work with, how do you start that conversation with the individual or their family? 

Rosenstein: If you allow me a quick digression, I think partly what you're asking is what the best way to screen for various concerns, and there are lots of different ways that people do that. What I can tell you is that there are multiple doors into the building literally and figuratively where I work. There are some people who will say to their oncologist, I cannot sleep, or I cannot get through a conversation without bursting into tears or haven't had sex with my partner in over a year, and I don't even know how to talk about that or whatever the problem is. Then, there may be a very specific referral to one of us. That's traditionally what we call the chief complaint in medicine. There are also systems in place throughout almost all cancer centers where there's screening for various symptoms and problems. So you may get a piece of paper with a checklist or a tablet where you tick off whether you're having trouble with appetite or with pain or with your bowel movements or whatever it is.

I think most places have a triage system where they will get folks to the specialist that they need. In my world, I tend to see most patients when they have problems with depression, anxiety, post-traumatic stress disorder, fear of recurrence, communication problems, trouble talking with partners, and so on; how to talk with your kids about your cancer, and so on.

And so where I begin is where I begin all my clinical work. Essentially, how can I help? What's most pressing right now?

Pathak: When you're thinking specifically around the chief concern or the main concern, your entryway to the other concerns is this anxiety or fear of the beginning of the journey or whether it's now you're at the end, and there's a fear of recurrence. How do you start talking about that with the patient?

Rosenstein: For me, it's a question of what the antecedent context is and what the current experience is right now. What I mean by that is, was someone cruising along in life, really never having seen a mental health professional before, they're in an important relationship, they're doing work that's meaningful to them, maybe they've got a family, maybe they have hobbies, and then this cancer thing happens. And then it derails them. Is this, out of the blue, new experience, and no one's had anything like this before. That would require perhaps a different approach than someone who has been struggling with anxiety or attention deficit or some other problem their entire life and now this is making it even harder. 

One of the things that many people in mental health focus on is what we call functional impairment or functional abilities. It matters to me as it does to my patients if they can't go to work, or they are having real problems in their relationships, or if their sleep is so terribly disrupted that they can't think straight the next day, or if they're drinking much more than they usually drink in response to stress and so on.

I want to know what are the symptoms. What is it like for them? And in what way that interferes with their lives. Then we focus on trying to decrease the impact by lowering the volume of the symptom burden.

Pathak: I'm curious, what, if anything, do you offer or how do you advise the social support of the patient that you're working with so that the 24/7 that they're not interfacing with the clinical environment or the hospital setting in their real world in their life, how can someone best offer this type of support? What advice would you give to that person?

Rosenstein: Well, first, I want to know if there is someone else in their life. Who is their support system? One of the questions that I began asking many years ago in my evaluations was some version of, do you have a best friend? Do you have a confidant? Is there someone that you really can speak your mind to?

I think that's very protective when you do, and as you suggested just a moment ago, most of us in medicine get a very brief snapshot of someone's life. A lot of times, people are on their best behavior, so to speak, or they want to minimize their symptoms, or they say yeah, I'm doing fine. Somehow, they want to be a good patient and not disappoint their doctors and nurses and so on. If someone has a life partner, a best friend, a parent, a sibling, or someone who is invested in them, I encourage them to bring that person along to appointments. There are some interesting data that suggest that clinicians spend a little more time and explain things more clearly when there's another person in the room. There's evidence to suggest that informed consent conversations go a little bit better. It's just interesting that the patients I worry less about are when there's a very engaged, quiet, and deferential but engaged partner, someone else in the room who's taking notes and who's keeping track.

Because I can tell you, when you're sick, it's really easy to get anxious and not hear certain things. My wife has had cancer, and I go with her to appointments, and she said it was fine if this came up, and I could share her story. But it's really interesting to compare notes after we both were in the same room with the same doctor and having the same conversation. It's like, oh, I didn't quite hear that. I heard something a little different. So I think you're less alone in that regard. And then that's all assuming that it's someone who you actually find supportive rather than someone who doesn't help.

Pathak: Thank you for sharing your wife's story. I can completely understand how having a partner with you in the office, particularly someone who comes from the medical world can capture a lot of the shorthand explanations that we fall into as health professionals.

It's really helpful when you shared; your approach is really based on what the person is sharing their main concern with you. And then that kind of gives you this entryway to learn more. What are some of the concerns that you find that people feel stigmatized or don't feel like they want to share because it doesn't feel like that's important enough?

Like what I've heard, for example, with certain patients is when they are starting their cancer journey, and they're really concerned about the hair loss piece of it, but they don't necessarily feel like that's something that they want to, or they need to, or they should spend time talking about during their doctor's appointment because they should be really thinking about the chemotherapy or asking questions about the treatment, but really that's a piece that is going to be powerful in their lives for their own mental health and their ability to feel like their children recognize that they're okay, 

Rosenstein: It's a really astute question because I think that there are shared expectations about what is important enough. To quote unquote complain about, and I'm thinking now of a patient I had several years ago who had breast cancer and was treated with chemotherapy and developed peripheral neuropathy. She was not able to use her knitting needles, and that was her thing.

That was the thing that she felt great peace doing, and she made gifts that she would give to other people, and it kept her hands busy when she was, with family and she couldn't do that anymore. That was a big part of her enjoyment and identity, and she would literally say, I don't feel right bringing this up because I'm glad to be alive, but in the world in which she lived, this was a big deal for her. Same thing with losing one's hair. I say this is a man who's completely bald. I've come to terms with my own loss of hair, but what I can tell you is that it matters to people how they look and how they feel about themselves and having lymphedema, which is swelling of a limb that sometimes happens after lymph node dissection and so on and it can really be quite disfiguring and uncomfortable and painful.

Same thing with head and neck cancer, same thing with mastectomy. There are so many consequences of cancer and its treatment that change how we think about ourselves, who we think we are, what we look like, and how we interact with other people. As far as I'm concerned, none of it is trivial. None of it is unimportant. If it's important to you, then it's important to me as a clinician. I'll just give you one other example of what's come up a lot, which is heartbreaking, really, in the work that I do. And that is, cancer, for many people, can be very traumatic, and it can be re-traumatizing.

The Public health statistics about how many Americans and how many people around the world have experienced some kind of trauma, some kind of physical abuse, sexual abuse, or exploitation are shockingly high. So it should come as no surprise that when people come into the hospital and get diagnosed with and treated for cancer, it can be re-traumatizing.

I can't tell you how many times I've had patients say to me that they remember things that happened to them earlier in their lives, but I'm not allowed to talk about that, right? Because I'm supposed to talk to you about my reactions to the cancer. And I have to say, of course, you can talk about that, and it's relevant. So yes, we do have some lines of demarcation that I don't think should be there about what is and is not okay to explore with a clinician.

Pathak: I think that's a really powerful piece of information that people should know. Let your healthcare team know that this is critical to your recovery or your purpose and meaning in the journey.

Rosenstein: Absolutely. The other thing I've learned a thousand times in my career is not to make assumptions about how people put things together in their heads. Especially with cancer, there's a lot of obvious data that we're all exposed to with respect to tobacco, alcohol, and sun exposure, secondhand smoke, all sorts of things. A lot of people have a tremendous amount of guilt. And that can extend even to people wondering if who they are, how they are, or how they react to things, which may either increase the chances of getting cancer in the first place or affect the likelihood of them responding to treatment.

So if only I weren't so shy, or if only I could speak my mind more and not hold in anger, and there are all sorts of popular psychology notions that I think have very soft data behind them that people carry around with them related to cancer in particular.

Pathak: That's actually really interesting. I totally take your point that oftentimes, there's this unsaid idea that perhaps there's a guilt that comes from having this diagnosis and being able to share or talk about that can also be powerful. Maybe not with your healthcare team, but someone in your life, someone in your support system. So, how do you advise folks that don't? You said that oftentimes, when you can help someone identify, or you recognize that they do have a lot of support in their lives to leverage that. But what do you do in those situations where you're identifying somebody who does not have much social support? How do you support that person?

Rosenstein: So I feel like the answer to that question is particularly germane in this post-COVID world that we live in. You and I are talking to each other over a computer. Many medical appointments are done virtually these days. Community has taken a hit around the world in the last five or six years, and it's starting to make a comeback. That's good. So my answer to that question is to lean into community, lean into a bowling league, a faith community, a support group, a softball team, a knitting circle. It doesn't matter. I am such a firm believer in the power of groups. 

If you don't see yourself as someone who's a support group kind of person, that's fine. I've done lots of support groups with people who don't see themselves as support group kind of people, and it turns out they are. But if instead, taking a car mechanics course on Saturday morning and it's over a cup of coffee and a messed up engine, that may be where you get your sense of community. But there are lots of services and support groups online, which, in my opinion, are second best to being in person, but way, way better than nothing at all. There are Facebook groups. There are advocacy organizations the American Cancer Society put together, as well as individual organizations related to specific cancer disease types and sites. So what I would say is even if you tend to be shy and you have never experienced some kind of group, it's worth a try because when it comes together, it's really quite magical.

Something really cool happens when people get in a room together, and they, at some point, feel like they're part of something that's a little bit bigger than themselves.

Pathak: It feels like having a social support component helps you find a venue or a place where you can talk about any of those concerns that you might be having. That brings that to the fore so that you can address those concerns that may be hidden even to yourself.

Rosenstein: Yes. It also occurred to me that I kind of skipped over something really important and fundamental. That is, for a lot of people, a group is not something that they're going to opt to do. This is where counseling comes in. And there are so many counselors who are bright and kind and compassionate and skilled and who do this work because it brings them meaning and importance in their work. And so, for someone who is struggling with whatever it is, there are social workers, psychologists, nurses, psychiatrists, clergy, counselors, there are so many different people who understand that being in a room where you feel comfortable, where it's safe to talk, where what you're going to share is not going to be brought outside of the room, can be a great life-changing and life-saving, quite frankly, for a lot of people.

Pathak: Going back to a point you made earlier with regard to your parenting, sort of over time, informing us of your work as a healthcare provider and a scientist. I would love to touch a little bit more on that in terms of survivorship and parenting. How do you approach a parent who's struggling, who may have children at home that they need to care for? How do you talk about an approach that you can take from the cancer survivorship standpoint when you're parenting with cancer?

Rosenstein: I really love that question. I think this is one of the misses that we have in medicine these days. I think that there are certain assumptions that we make that when someone is young and they have younger children that they would want the most aggressive cancer care possible to keep them alive at all costs. That's certainly true for many, many people, but it's not true for everyone. And so I think that whenever oncologists are talking with patients or patients are talking with their oncologists, I think that both sides have kind of a responsibility to communicate who they are and what's important to them or to elicit that on the part of if you're talking about a clinician.

What I mean by that is it may be the same type of cancer, but it affects everyone a little bit differently. I think to provide good care, it's incumbent upon us to say, Help me understand who you are. I want to know about your work. I want to know about your family. I want to know about your exercise interests. I want to know what you value and what's important to you. It's surprising to me how infrequently the question comes up: do you have kids, and how old are your kids? And how does having children affect how you think about your cancer and some of the decisions that you need to make? Whether it's related to surgery, chemotherapy, how much time you're going to spend in the hospital, whatever it is. The work that we've done here at the University of North Carolina and groups at Massachusetts General Hospital and other institutions have really emphasized that being a parent is at the heart of so many people of how they think about what's important in their lives. And so I just think it should be part of the conversation more often than it is. 

Pathak: We've been talking about pieces of information that one might not want to share with their healthcare provider because they might feel like this isn't the right time, this is not the right time or place or in the case of another type of toxicity, financial toxicity, they might feel like, they should be thankful for the care that they've received, or they may not feel like they have the right person that they should be talking to. Should I be talking to my healthcare provider about this? Or do I need to go find someone else in the system to discuss my financial concerns? Can you talk a little bit about how someone can potentially unburden themselves from these types of fears and concerns?

Rosenstein: It's a terribly important topic, and it's one that affects a very large number of patients with cancer. The term financial toxicity may seem like hyperbole, but it's really not. In more recent studies, up to half of people report financial hardship related to their cancer or their cancer care.

Up to three-quarters of people will report psychological burden worries about this. And so, when people talk about financial toxicity, they're talking about material hardships, like, can you pay your medical bills? They're talking about the psychological experience of it, which is worrying about the ability to afford either your cancer care or other things.

And then there are behavioral consequences. A third aspect of this, which is sometimes people will not fill scripts because they can't afford it or they have to make a decision between paying their rent or buying expensive medicines. I think one of the myths in our country is that you either have health insurance or don't.

Clearly, there are lots and lots of people, more all the time, who I would describe as being underinsured, which means that they have very high copayments, very high deductibles, and their insurance. It covers some aspects of their care and not other things, and then they have to make a lot of decisions.

It's a huge problem, and I think it's getting worse, but there is help for it. I think we'll have to schedule another conversation about the kind of health policy, healthcare insurance, healthcare insurance reform, and so on. That's for another conversation, but in the meantime, most cancer centers have financial counselors.

Sometimes, that is someone who, quite frankly, is trying to figure out how to get a patient on a payment plan. That's not the same thing as counseling someone about whether they do or do not qualify for Medicare or Medicaid. Do you qualify for other kind of financial programs that can soften the burden?

There is a national organization called the Patient Advocate Foundation that works with patients to help identify various ways to kind of minimize the financial damage. And sometimes, even if the bill is still quite large, feeling like you've got a plan, feeling like, you know where you can go for help can lower some of the anxiety about what's going to happen of if this is this going to bankrupt your family. 

What I would say is that some of our research and others suggest that people are nervous about bringing this up to their physicians. They're worried that somehow that might negatively affect their cancer care in some way, and they shouldn't. This is, I think, an important part of it because this is an issue that affects people's behavior and outcomes.

So, I think it should be more of a part of the conversation.

Pathak:  I just want to thank you so much for your time and this conversation. I want to yield our final moments to you for anything that you wanted to talk about that we haven't or any bite-sized action items that people who are listening might be able to incorporate into their own lives if they are the ones needing support or the ones that someone is leaning on for support. Do you have any final thoughts?

Rosenstein: What I would say is that there is this notion of agency that isn't talked about very much in medicine, and I think it's really important. If you are someone who has become ill with cancer, it's something that happened to you, and a lot of what unfolds after that is out of your control. I mean, of course, you can make decisions about what treatments and diagnostic tests you want to accept and so on, but so much is coming at you.

I think that having a sense of agency and control and decision-making about how you tell your story, who you tell your story to, who you share certain things with, and what information you want to obtain to make decisions. It can make a world of difference in terms of feeling like you can control the controllables. And the uncontrollables that none of us can, you can't do it. And so I would just encourage people to figure out what they need to listen to their own instincts about that and to be as good to themselves as they would to someone else in their life who they cared about and wanted to help out during a tough time.

Pathak: Thanks so much for being with us today. We've talked with Dr Donald Rosenstein about the complexities of life after a cancer diagnosis. 

Dr Rosenstein shared insights into the multifaceted challenges that survivors face, including fear of recurrence, changes in self-image, and the emotional strain on relationships. 

We discussed how survivorship doesn’t end with the last treatment but is an ongoing journey and emphasized the importance of emotional support, practical resources, and fostering strong connections with loved ones to help manage these unique challenges.

Dr Rosenstein also addressed stigmatized concerns, like the trauma resurfaced by a cancer diagnosis and treatments and financial toxicity, which is a growing burden for many patients. 

He urged listeners to lean on available support networks, whether through groups, counseling, or trusted friends, to maintain a sense of agency over their experience. By advocating for their needs—whether medical, emotional, or financial—survivors can reclaim control and find meaningful support in their ongoing journey beyond cancer.

To find out more information about Dr Rosenstein, we'll have information about how to connect with him and his work in 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. If you'd like to send me an email about topics you're interested in or questions for future guests, please send me a note at webmdpodcastatwebmd.net. This is Dr Neha Pathak for the WebMD Health Discovered Podcast.