Wendy Griffith Hi, I'm Wendy Griffith, a program director of the Adolescent Young Adult Program here at MD Anderson. And I'm joined today by Dr. Michael Roth, who is a professor of Pediatrics, as well as the director of Cancer Survivorship. And this is the CancerWise Podcast. Thanks for joining me today, Mike.  

Michael Roth, M.D. Wonderful to be here.  

Wendy Griffith So, I think today we're going to talk about some of the myths and misconceptions about cancer survivorship, which is something that effects cancer patients of all ages. So, I guess before we get started, can you talk a little bit about like, what does it mean when we say survivor? What does being in survivorship mean? Like, what is that definition? 

Michael Roth, M.D. Sure, yeah, there's different definitions of who is a survivor. We follow the National Cancer Institute's definition of you are a survivor from the day of diagnosis. Survivors can be any age, they can have any cancer diagnosis, they could also go through any treatment type. I think for the purposes of the discussion today, we're going to focus mostly on life after treatment and survivors who have completed their cancer-directed treatment. 

Wendy Griffith Yeah. And I guess, do you feel like a lot of patients ascribe to the word survivor? Like, do they identify themselves that way? 

Michael Roth, M.D. Not typically. Yeah, when we see patients in clinic, it's not, 'Oh, I'm a survivor,' or 'I'm an active patient.' It's, 'I've gone through cancer treatment, and what's next?' 

Wendy Griffith And I guess what comes with when you see those patients, what are some of the complications? Like what do you see when patients come in and they're in their first survivorship or even later on? Like what does that look like for them? 

Michael Roth, M.D. To be honest, a lot of patients don't know what survivorship is. They've never heard of survivorship. They've had the concept of survivorship talked about. It's mostly been about this is what I need to do to get through cancer treatment and then we'll deal with everything after that. 

Wendy Griffith Right. 

Michael Roth, M.D. It's a struggle. 

Wendy Griffith So, then you would think that after treatment, people would feel this like massive sense of relief, right? Which I think is probably a very common, what I would say, myth. What are your thoughts? 

Michael Roth, M.D. Yeah, I agree, it's a myth. People have in their minds, they ring the bell and then all of a sudden life goes back to pre-cancer and let's just get back to life doing what I was doing before cancer. And it's just different for everyone. I think most people go into cancer treatment nervous, anxious, understanding that treatment's going to be difficult no matter what it is, if it's chemotherapy, radiation, surgery, some combination. Most folks think that after treatment's done, all of that concern, all of the worry, the challenges, just goes away and gets better and it's just not the reality for most people.  

Wendy Griffith Right. And I think specifically, people assume physically, things will kind of go back to normal because the treatment's the thing making them ill. So, once that thing making them ill is over, then they go back quote unquote normal. So, physically, I think there's definitely that expectation. Also, I just think sort of mentally and emotionally, there is an assumption that they'll just continue on and again, things will go back to this quote unquote, normal. So, can you speak a little bit to that in these like physical side effects, late effects, the emotional, mental, all that. 

Michael Roth, M.D. Yeah, the answer is all of the above can happen and can be a challenge for patients. So, for many patients, their cancer treatment can cause long and lasting late side effects of treatment. They can be physical, they can be psychosocial in nature. Some of those physical late side affects that persist can be fatigue or it can cause disabilities like challenges walking, lifting things. Some of it's predictable based on what their cancer was and their treatment. A lot of it is not, and you can't tell up front who is going to have what challenges in the future. I think the biggest and probably the most important thing to do is to accept the fact that these patients are at risk for long-term health issues, and as providers, we need to ask those questions. We need to make sure that patients are not keeping these issues to themselves, and we're addressing them because, again, life after cancer matters. We don't want them just to make it through cancer. We want them to live a long, healthy, and productive life after cancer as well. 

Wendy Griffith This might be digging into the weeds a little bit, but so as you mentioned, sort of like that prolonged fatigue or a lot of patients talk about brain fog or just, you know, difficulty sort of living their day-to-day lives physically. So, I don't know, what are some of the, not resources, but specialties, like what can be done about that? Who do they see about that, obviously they'll ask their provider, and so then what happens? 

Michael Roth, M.D. It's a challenge. Fatigue, specifically, is something that is more universal, affects more patients, and it also impacts so many different areas of their lives. Think about waking up in the morning, not having the energy to go to work or play with your kids or do what you need to do to stay physically healthy. So, a lot of these domains overlap. So, what do we do about it? We're proactive. We identify, ideally, what is the main issue and what can we do to address those issues? With fatigue, this may sound a little bit strange, but the main treatment is actually exercise. 

Wendy Griffith Hm, interesting. 

Michael Roth, M.D. So, the goal is to get patient's endurance up. It's not necessarily to bring patients back to where they were pre-treatment. So, if you were a marathon runner before treatment, that's really hard for patients because they expect that they'll get through treatment and just go back to pre-treatment life. And it's just not the reality for many. Some patients thrive after treatment, others struggle. Our job is to support patients where they are and help them get better and improve the trajectory of their health. Now, Wendy, you do this just as much as I do, and specifically you're an expert in caring for a patient's mental health. I was hoping you can share a little bit about what struggles patients go through after treatment when it comes to relationships, mood, and some of those other issues that are incredibly important. 

Wendy Griffith Yeah, because that really is a big one. So, I think for one patient, we hear a lot about scanxiety. And a lot of patients will talk about how, while they're on treatment, you know, getting the scans, getting the imaging can be difficult. But it's almost kind of more of a drag. Like, it's like, 'Oh, I have to go back for an appointment.' Financially, it can be draining. Just being at the hospital all day can be draining. And it's just kind of a thing that they wish they didn't have to do. Well, then after treatment ends, it can often be a surprise to them that instead of coming. Every week and every month and seeing their teams regularly, now it's three months or it's six months and then you're waiting a really long time and you're not having labs regularly. You're not seeing a provider regularly. You can't just ask those questions off the top of your head. And so, then when it does come time for that imaging, it becomes very scary. And I've heard from a lot of patients that they're just as scared at year 10 as they are at year one. And for different reasons sometimes, but just, you know, year 10, now they have this whole life that they've rebuilt and now they're even more scared of what they might lose or what could happen if the results are bad. And so, I think there's just a lot of scanxiety that pops up. There is a lot of what you talked about this like sense you think you're gonna go back to normal. And so when that doesn't happen, it's frustrating. You know they feel a lot of anxiety about what's happening in their body. Can they trust their body? You know, it took them a long time to even find the cancer maybe. So, what if cancer's growing in their body this whole time and they're just sitting there, you know, trying to go back to work? And so, there are a lot of things that pop up after treatment ends, I think really surprises people. 

Michael Roth, M.D. Yeah, we, you know, I see that every day in my survivorship clinics is patients come in, you know I've been doing pretty well and then six weeks, four weeks before the appointment, the anxiety starts to increase and the worry and the thoughts of 'Well what if the cancer has come back or what if I've missed something?' Patients get a cough, or a cold and they feel a lymph node in their neck which is normal because they got a virus, and they worry immediately that this is cancer and that anxiety builds. What do you do about it? So, I try to reassure patients, you know, you are far from cancer treatment. The likelihood that your cancer is coming back is exceedingly low, but it's easy for me to say, much tougher for patients who are going through it and have a different experience.

 Wendy Griffith Yeah, I mean, absolutely. And it's challenging because it's a valid anxiety. It's a valid fear. So, you can't really talk someone out of something that's valid, even though I think well-meaning loved ones try and they'll just say, 'You know, don't worry. Don't worry. You did the treatment. You did everything the doctor said. You're totally fine. Don't worry.' Like that doesn't really help. I mean it does in some ways. It's nice to have someone tell you it's going to be okay. But I think the best advice for patients is one, just to know that that's normal. I think making a plan, just like anyone who feels anxiety, if you know those few days before your scans you're gonna be level 10 anxious, what helps? Do you wanna order food in every night? Do you want to get together with your friends? Or do you just wanna kind of go dark and not talk to anybody and just like listen to your own music and sit in your house for a few days as you kind of prep yourself, whatever works for you. But I think having that ritual and having that routine around your scans can be really helpful, especially for people who aren't used to experiencing anxiety. Because there are some people who make it all through treatment, you know, pre-treatment, during treatment, they're fine, like they don't feel anxiety. They don't even know what anxiety feels like. Then comes after treatment, suddenly they're hit by it, and they don't even know how to describe it. They don't know what it is. And so, I think to your point, of just like talking to your providers about it, you know bringing it out in the open so that you can make a plan together of what that looks like, what the scan process will look like, how often they'll happen. And in the meantime, if you have any concerns, who do you call? When do you MyChart message? When should you call the office? When should go see your PCP? I think there's a lot of questions that just kind of linger after treatment. And so, I think having that really solid plan with the medical team helps. 

Michael Roth, M.D. That's so interesting you bring up that oftentimes patients feel different emotions after they finish treatment and a lot of patients express that they don't process or fully process their cancer and their experience until after they complete treatment and all of a sudden they have more time with their thoughts and they're not running back and forth to get treatment and they think about for many what could be a trauma or was a trauma in their lives and how does this impact their lives moving forward. One thing that I always think about is support networks, and there's this really sort of great time for many patients at diagnosis and on treatment where the troops rally. Family, friends, coworkers, everyone comes together to support our patients, and they bring food and have other sort of connections and support. What have you experienced for patients after cancer treatment ends and patients are expected to get back to normal life? 

Wendy Griffith Yeah, I think you really hit the nail on the head there, and that there is a myth or a misconception that life just goes back to normal after treatment is over. So, I do think the support systems rally, and we really do see it kind of tapered down even towards the end of treatment, because they all think light at the end the tunnel. You know, it's done now. Our loved one's like, gonna go back to normal, and so then they just kind of often fall off at that point. And even if they are still there and supportive, oftentimes there's sort of this still subliminal message of like, 'You're supposed to be okay.' Like what do you mean you still have anxiety? Why are you scared? Why are you still sleeping in all the time? Why are you still feeling this fatigue? You're done. You're supposed to be good now. And so, I think there is kind of this gap even in the ability of their support systems to provide the kind of support they need because they just expect that the patient's gonna go back to normal. 

Michael Roth, M.D. Yeah, it's interesting. I think a lot of patients, they look at the world around them at work, in school, in their families, and they see everyone else's life has gone back to normal, yet they've missed out. Perhaps they haven't advanced at work. Perhaps other relationships have moved forward amongst their peers and their friends, and theirs have not. And it's often a huge struggle afterwards to try to do that catch-up or to realize that you're behind and you lost something during cancer treatment. 

Wendy Griffith Right. Yeah. I mean, we hear that a lot, even just like at work, you know, like you think, 'Okay, I'm going back to work now. I'm, you know, glad to be back in this routine and I have my colleagues, and I feel like I can be productive. I feel fulfilled by, like, my role.' But then you realize, you know, some of your teammates have been promoted or, you know, they've moved jobs and, you know, a lot of patients say that they're kind of scared to apply for a promotion or even to search for another job because they're just nervous about their insurance coverage and they don't want to mess up anything related to their health care because they want to make sure they can still see the same doctors, get the same stuff. And so, yeah, I think there's this feeling amongst them of just, at least we hear this a lot from the young adults, is like feeling stuck and feeling a real sense, I think, of social isolation. Do you see that in older adults also? 

Michael Roth, M.D. We see it in all ages. Looking across the age spectrum, it's children, it's adolescents, young adults, and older adults. It's this feeling of being stuck. And a lot of the support services that we try to provide is to help patients get unstuck or prevent them from getting stuck to anticipate what are the challenges that are going to come up in the workplace, in your relationships? How do we anticipate them? What resources can we provide to make sure that patients have accommodations in the workplace so they can be more successful, whether that's working from home, having more breaks during the day, having a desk or a work environment that's more amenable to someone who has a disability. It doesn't remove the problem, but it decreases some of those barriers to continuing to be productive in life. So, we focused a lot on our patients and what life is like after completing treatment, and we really haven't touched on their loved ones, their caregivers. For our patients, that could be a partner, that could be a parent, and that can be a child. And many of our caregivers go through those similar emotions and challenges that our patients do. I was wondering how much support you've seen patients and their caregivers actually get. What's the attention like to the needs of caregivers and how can we do a better job supporting them? 

Wendy Griffith Yeah, that's actually a great point because I think we can always do better for the caregivers. I think they're often the forgotten kind of population. There really is a parallel. Obviously, caregivers have a very different experience. It's not the same experience as the patients and you never want to compare the two. But they do kind of run in parallel and that the caregivers are experiencing something very scary. It can be physically draining for them. They're right there with the patient a lot of the time. And in the meantime, they're also having to take time off work. They're also probably ignoring some health issues of their own or not being able to engage in their own social life. And so, I think there's also this misconception that after treatment's over, well, now the caregiver's life goes back to normal too. And we know that's not true. And we hear from caregivers, that's not true. Because sometimes also for caregivers, it's after treatment that they realize, 'Oh my gosh, this is what we've been through? Like, that was hard. This is crazy. Like I can't believe that.' And then sort of the weight of it can kind of hit them. It also, same thing, they look around and they realize, 'Wow, I haven't seen my friends in a long time. I haven't been to the doctor in a lot of time. I have a lot of work to do. I also feel drained. I'm also still worried about the patient and wondering, are their labs okay?' It's the same kind of thoughts and questions the patient's having about themselves. Caregivers still have that, like, that caregiving, you know, desire and love for someone and wanting to make sure they're taken care of. It doesn't just turn off when treatment's over. 

Michael Roth, M.D. Yeah, and those roles change often when on treatment. And when our patients and caregivers want to just be a spouse and be a partner, that role becomes a caregiver. And oftentimes, it's difficult to transition back to a partner and the person I love and just want to spend a quiet night with. For us in survivorship, we need to address those issues because there are so many different things which add value and happiness to a patient's life that we can't just focus on what are the exact physical health issues you're having after treatment. It has to be the whole view of their life and what's meaningful and important for you. Yeah, agree. It transitions a little bit into the positive side of things, of what can we do after treatment? How do we make sure that patients not just survive their cancer, but they thrive after cancer. And that's a little bit of a controversial thing to bring up because not everyone thrives after cancer and that means different things to different people. But I was wondering for the mental health aspect of things, how do we support patients to maximize and optimize their happiness after treatment? 

Wendy Griffith So, that's a really good question, and I think we have to be careful with it because there's two parts here. So, I think on one side, there can be a lot of pressure to that, to say, 'Hey, find the meaning. Find your purpose, like cancer has a role in your life, make the best of it.' Just what was its purpose? And that can create a lot of pressure on patients and create really a sense of like forced and toxic positivity. That just doesn't feel good to patients when they're still kind of in the thick of things, just trying to figure it out, because everything doesn't have to have a reason. Everything does not have to a purpose. It does not to have to have a meaning. However, that said, there are, on this other side, there are patients who do find a sense of meaning and find a set of purpose, and that is healing for them, it's meaningful for them. And having that kind of prompting from their support network is really helpful. And so, I think when we talk with patients and caregivers, it's kind of just like, you kind of have to hold both and know that if you can get there and process it and find that meaning, like, let's do it. If you're not there yet, that's okay too. And it's okay just to have cancer be a really hard and difficult chapter that you just want to close and move on from. But ultimately, I think also as a mental health professional, I always say like, see a therapist. Always, like always, always, see therapist. Even if it's for three visits and you're really just coming up with your goal plan of like, what do you want your life after treatment to look like. Great, see a therapist for three sessions. You might find there's actually a lot more to dig into and you need more support than you thought and it might turn into a lot longer than that, but it doesn't have to be. So, I think finding a therapist to talk to who's unbiased and then also just finding your people. And sometimes that is your support network, but sometimes we hear from patients, it's their cancer friends. Like, there's nothing in the world like cancer friends who get it, who've been through it, who you don't have to explain everything to. 

Michael Roth, M.D. That guidance is so important. And it makes me think about what we can do, and we are doing for physical health side effects. And for many patients, depending on what treatments they've had, they can experience long-term side effects that impact their physical health. It can impact their heart health. It can impact their ability to have endurance and ability to really go about their kind of daily life activities. The key there is to make sure that you are seeing a provider who understands what you're at risk for. So, our patients, in addition to having a primary care provider, and all patients need to have general health care, also need specific care and screening for those health issues that they're at-risk for. So, if a patient received radiation therapy to the chest, they're likely at risk for heart issues in the future. For women, they're at risk for breast cancer. They need specialized screening based on those risks. And it's important to empower patients to say, you're not going to know everything that you need. You need to ask your oncology providers what needs to happen after treatment. And that's challenging because most patients years after their treatment are not with their oncology provider and many are not in a survivorship program. That guidance, having a treatment summary, what did you receive and a survivorship care plan, what do we need to do about it, is absolutely essential for all survivors. 

Wendy Griffith I'm glad you mentioned that because that was going to be my question for you is like, how would patients know, you know, what chemos they've had or what radiation and what dosage and you know what the what the late effects are. So, you're saying just ask your oncology provider for a treatment summary. 

Michael Roth, M.D. Yeah, so most patients never ever receive a treatment summary and most never receive care plans for what they need in the future to screen for late side effects, to screen for potential other cancers. And it is essential because if you don't know what you had, if you don't know what those risks are, there's really no chance you're going to get the relevant screening. And then patients often come back years later with more health issues that we wish would have been detected. Earlier so we can catch it and treat it and ideally prevent many of these issues from coming up. 

Wendy Griffith Right, because I think a lot of patients think of survivorship care as sort of just disease recurrent surveillance. They just are coming back every year to see if their cancer is back. But it really is so much more in-depth than that, right? 

Michael Roth, M.D. Yeah, surveillance is one important aspect of survivorship care, but it's only one aspect. And we need to look at what treatments patients received, and what are the risks based on those treatments. For some patients, they may be at risk for having kidney disease. And what that means is we need stay more hydrated. We need to monitor your kidney function every year. It's important specifically that each patient gets recommendations that are tailored to their treatment exposures. That survivorship care can be provided in different settings. Here at MD Anderson, we have a very large survivorship program. We see over 17,000 patients every year within our walls. And many of our survivors also receive survivorship care by their primary care providers, and we provide them a treatment summary and a care plan so they can get optimal care close to home. 

Wendy Griffith Yeah, which is important, you know, we have some resources here, but also it can be negotiated that you don't always have to come back to Houston if it's not feasible. 

Michael Roth, M.D. Convenience is really important. Patients move around. They live in different locations. They may not be able to interrupt their workday or their family life to come for a visit. What that means is that we need to be flexible. We need to make sure that no matter where they are in life, they are still getting optimal health care because they are at higher risk for other health issues afterwards. And our goal, again, is not just to get through cancer treatment, it's really to make sure that patients live long, healthy, happy, and meaningful lives after treatment. 

Wendy Griffith Do you think that is a focus for patients during treatment or as they're transitioning, like is that a focus? Is that something that's brought up? 

Michael Roth, M.D. I don't think most patients think about it. I don't think it comes up much because the day to day is get through treatment. My goal is to obtain a cure and then I'll just get back to life. We can do a better job preparing our patients for what survivorship is and what they need to do to make sure that they're optimizing their health. And I think survivorship is something to celebrate. It's a goal and it also has challenges, and we need to acknowledge the fact that patients have been through a lot, and that cancer experience, that cancer journey, it's not over, and it doesn't end when treatment ends. There's new things that can come up, and we need to be in it together and make sure that we're addressing those needs as they come up. 

Wendy Griffith Yeah, so what would you say your most common pieces of advice are for survivors? I'm sure there are a lot. 

Michael Roth, M.D. There are a lot. There's a few things I talk about with every survivor. One is don't compare yourself to before treatment. Focus on making progress, thinking about where you've been. Think about where were during cancer treatment, which was probably pretty challenging, the progress you've made to date and set goals. Set goals in every area of your life. Set goals for your career. Set goals for relationships. Set goals for your physical and mental health and chip away at those goals, and most importantly, be proud of yourself. 

Wendy Griffith Yeah, absolutely. 

Michael Roth, M.D. Cancer treatment, it's not a normal experience to go through. Need to understand that just getting through cancer treatment is a win. 

Wendy Griffith Absolutely. 

Michael Roth, M.D. It's something to celebrate, and there are many more wins coming up, but it's going to take work. 

Wendy Griffith Yeah, I hear you talk with patients a lot about goal setting. And I think that is the one of the keys of like this sense of feeling stuck. It's sort of like, yes, because you know where you've been, and you know life looks so different. It just, it does feel sticky and hard and thick to think about what does the future look like, but that kind of is the first step, even if you don't quite know yet, but to set those small goals that then turn into longer term goals and know what you're wanting to go towards to some extent. 

Michael Roth, M.D. Yeah, I agree completely. And I do want to bring up one more common issue that often presents for our patients, specifically those who do not get very intensive cancer treatment. And that's this concept of survivor's guilt. And do I deserve to feel the way I feel? Is it OK that I'm struggling with my mental health? And the answer is yes. All patients who've been diagnosed with cancer, that diagnosis alone is impactful, and it impacts patients differently. So, I always personally feel bad when a patient comes in and says, 'Oh I only had a small surgery, and I see patients sitting in the waiting room next to me and they got a lot of chemotherapy and radiation therapy, and I shouldn't feel the way I'm feeling. I feel guilty about that.' And I try to stop them and say, 'You didn't ask for cancer. You I didn't ask for this to happen to you. We need to accept that you're feeling the way you're feeling, and that's OK. We need a deal with it. We need address it.' 

Wendy Griffith Yeah, it's kind of what you said early about the comparing. It's like you were talking about don't compare yourself to life pre-treatment. I would also add on to that, don't compare yourself to others in the sense that everyone has just wildly different, even if you have the same exact cancer and the same exactly treatment plan, you could respond wildly differently. And so, there just really is no comparison. But we do hear from patients a lot that they feel like they didn't suffer as much as someone else did. Or they also feel guilt in the sense of like, 'Why did I survive, and my friend didn't? Or why did I survive, and my friend's child didn't, or you know, my grandpa didn't?' And so there can be this sense, we call it survivor's guilt, and that can look very different to different people. And I think that's where that comes from. It's again, a very valid, it's understandable. It just also is exactly what you said. You didn't choose this. You did go through this. And what I would say to any patient is that anyone who's been diagnosed with cancer now has that seed sort of forever planted than their brain of like, 'What happens if it comes back?' It's like the toothpaste is out of the tube. You can't put it back anymore. And so, no matter how much or how little treatment, that still has a big impact on everybody. And so, I always tell patients, just don't compare yourself. There's always gonna be someone better off or worse off, but you are you. This is where you are and what's happened in your life. And you kind of have to just take it in that context of you and what the rest of it looks like. 

Michael Roth, M.D. Yeah, I could not agree more. And Wendy, this has been such a good conversation. I know we are incredibly passionate about this. And a lot of the goals of having these discussions is because so many patients are unaware of what survivorship is and what their needs are. And my hope is that we talk about survivorship earlier in treatment. We talk about survivorship at the end of treatment. And we talk survivorship long after treatment. Because at the end of the day we care about our patients and they have, they deserve to live long healthy and happy lives.  

Wendy Griffith Yeah, totally agree. Couldn't have said it better. All right well, I think that's all we have today. But thanks so much for joining me. I think it was a great discussion. 

Michael Roth, M.D. Yeah, thanks so much, Wendy. 

Wendy Griffith For more information or to request an appointment at MD Anderson, call 1-877-632-6789 or visit MDAnderson.org. And thanks for listening to the Cancerwise Podcast from MD Anderson Cancer Center.