Just diagnosed with cancer? What to do first and how to cope  

Hayle Lopez, Social Work Counselor, UT MD Anderson The Woodlands Hi, my name is Hayle Lopez and I'm a social work counselor at UT MD Anderson The Woodlands. Today, I'm joined by my colleague, Dr. Craig Kovitz, who is a GU medical oncologist at UT MD Anderson. And this is the Cancerwise podcast. Welcome, Dr. Kovitz. 

Craig Kovitz, M.D., GU Medical Oncologist, UT MD Anderson Happy to be here. 

Hayle Lopez, Social Work Counselor, UT MD Anderson The Woodlands Today, we're going to talk about something that affects all cancer patients upon diagnosis: the fact that they're faced with a lot of decisions that they have to make about their care, and the ripple effects that a new diagnosis can have on their personal lives. And we're also going to talk a little bit about some practical ways that patients and caregivers can manage stress during this time. Dr. Kovitz, I want to start with what is your experience like with recently diagnosed patients and how do you help them? 

Craig Kovitz, M.D., GU Medical Oncologist, UT MD Anderson So, as you know, a new diagnosis of cancer is extremely overwhelming for people, regardless of your background, education, or anything else. So, when I first get into a room with a patient, I try to get to know them first before we start to delve into the depths of what's going on with them. So, we talk about where they're from, what they do for a living, or what they did before they retired, their family, the people that are in their support network. And I try get a little into what maybe their expectations are of coming to see us. Sometimes people are here for a second opinion, sometimes they're here with a new diagnosis. The first thing I do is try to maybe calm the situation a little bit by just having a conversation with them and sort of getting to know those pieces of information that can make a big difference not only for how they're going to approach the information I'm going to give, but also how I'm going to respond and be able to interact with them in the best way possible. We usually take a step back to the beginning of when they first found out about this, how they found out about it and kind of assess what they know now, not just about their own diagnosis, but their medical knowledge in general. I'll try to give the information to them about their diagnosis and treatment in somewhat smaller chunks, rather than trying to do everything all at once, because people get quickly overwhelmed and they tune out. But if I can get to know who they are, their expectations, a little bit about their background, I think it can calm the situation and then we can move forward in a way that's productive for them. 

Hayle Lopez, Social Work Counselor, UT MD Anderson The Woodlands Absolutely, I agree with that. And it does make it a little bit more personal. And I think it can be a big support to patients just to be met where they're at, and to get, from a provider standpoint, just to kind of get to know them and what's important to them. Beyond information about their condition and the next steps for treatment, what else do you consider? 

Craig Kovitz, M.D., GU Medical Oncologist, UT MD Anderson One of the first things I like to consider is what their expectations are. Not just from a visit with me, but also their expectations about their diagnosis. Do they think their disease is something that is curable? Do they think their disease is something that’s going to be a long road or something from which they may not survive? "What do they know" can help me give them more information and also correct information. I think trying to build trust with them and their family members is important for all of us. Because what they're ultimately trying to do is build a team to help them treat their cancer. There are other things that have to play into it, and I think it's important that we make sure we know these things, whether it be cultural things, religious things. Language barriers can be an issue when we're talking to patients and making sure that the proper people are available to help us get the information to them correctly. So, I think that making sure that all of those are addressed is going to let them have the most comfortable experience and come to trust us as we move them through, you know, maybe one of if not the hardest thing they'll ever go through. 

Hayle Lopez, Social Work Counselor, UT MD Anderson The Woodlands So, a patient gets diagnosed. Where do you guys as providers go from there? What does that look like? 

Craig Kovitz, M.D., GU Medical Oncologist, UT MD Anderson Once a patient's arrived in our clinic, we will try to go through the details of what information's already been provided. We step them through the diagnosis, where we'll deal with testing after that, and where we see things headed. And we recognize that it all doesn't happen in one sit-down as we talked about before. Some of this happens at the beginning, and we then call them and have to talk to them more about it or have another visit. But even during the course of that visit, I outline the details of what's going to happen next. We're going to do this test today. This test will be scheduled and you'll have to come back in a week or two for it, or you'll go back to your home oncologist wherever they may be and I'll call them and give them some thoughts about what I think might be best to do next. And once I'm done, I then go to my nurse, other people on my team and I tell them what I've said and they go back in the room and re-emphasize it for both the patients and the family so they know what to expect is happening today, tomorrow and the next day. And they're usually very clear about that. We leave but it's a very important point. Because we talk about so much during that first visit sometimes that often people are, well, they've tuned you out at some point often because they're just overwhelmed and they've been so busy kind of understand and learn what's wrong with them and where things are headed that sometimes the details of what to do next are left out. So, we make sure that we emphasize that people should never leave confused about what the next step is, whatever that might be: a test, a phone call or communication that we'll have by phone or through MyChart messaging. So, I hope that people leave with that kind of information. 

Hayle Lopez, Social Work Counselor, UT MD Anderson The Woodlands What advice do you have for patients if they're in the beginning of their cancer journey? 

Craig Kovitz, M.D., GU Medical Oncologist, UT MD Anderson I think one thing that I try to relay to people, and I touched on this a second ago a bit, but it's very important is to have them recognize that they are now building a team around themselves and they have to learn to feel comfortable and trust the physician and the medical team. That's super important for them as they go through this. And also, to understand who around them, family and friends, are going to be the sort of pillars of their support network to help them through all these times. One of the things that you and I have talked about before is that there's a lot of noise out there now, right? Whether it be from family members, from friends, from the guy down the street who thinks he knows how to fix your cancer, and also from all the information online, some of which is excellent, and some of can be distracting and confuse people. And I want people to feel comfortable so that they can ask questions about those things, right? Whether it be something that's standard of medicine or some more far out idea. We should talk about all those things. They should feel comfortable doing that. So, what I tell people is, make sure you build a team around you that you trust. Try the best you can to block out some of the noise. You remind people that you have built a team that you trust and you need friends to be friends, neighbors to be neighbors, and not everyone needs to be the expert in their cancer if they've found a way to surround themselves with people that they trust. So, as part of our multidisciplinary team, you and your colleagues are always such important contributors to what we do. And I'm wondering, Hayle, how you work after we've seen the patient or before? How you help to support the patients and their loved ones and maybe tell us a little bit about what your role is and how you helped the patients at their initial diagnosis and beyond? 

Hayle Lopez, Social Work Counselor, UT MD Anderson The Woodlands Usually I'll walk into a patient, a new patient room, and I'll preface it with, "I'm Hayle. I'm the social work counselor. You don't need to remember everything I'm going to be talking about because they've probably already received a lot of information." And I really just like to emphasize; I'm a support for the patient as well as for the caregivers. And support, I think about it like an umbrella. It encompasses a lot of different things. Support can include connecting patients to emotional resources, emotional support. So, that can look like support groups that are moderated by licensed mental health professionals. That can also include connecting patients and caregivers to one-on-one individualized counseling. While a support group might be helpful for some patients, it may not be the setting for some other patients. So, we can present both of those different options. And both of these environments provide patients and caregivers the opportunity to talk about how their lives are changing, how they're processing a new diagnosis, as well as how it's just impacting their day-to-day life. We provide a lot of emotional support around topics like communicating with children, which can be really difficult. And this can also change depending on the age of the child. So, you would talk to a teenager about a new diagnosis with a loved one a bit differently than you would with a child who's in early childhood. We can also provide support around behaviors that can come up with children as well. There are certain behaviors that are very normal and to be expected with children and teenagers. So, we can provide a little bit of normalizing around some of those topics that are challenging. We also can provide education about healthcare directives. Those can be multiple conversations about what's important to a patient, what do they value, what do their wishes include, and who would they want to make those decisions if they couldn't do so at some point. And both of these topics can be really difficult, especially if they're conversations that you haven't had before. Sometimes patients can have a hard time just recognizing maybe these are conversations I'm going to need to have at some point and how do I even have that conversation with my loved ones? So, we can definitely provide a lot of support there. And then a bit more on the practical side, we can provide a resource linkage with different community resources. If people are coming in from out of the area, we can connect them to resources for lodging and stuff like that. It's a lot that they're navigating and sometimes we have patients coming in from out the city, the state, and even the country. So, we provide support in a lot of different ways. 

Craig Kovitz, M.D., GU Medical Oncologist, UT MD Anderson Well, I can tell you as a provider, what you guys do is amazing and super helpful to us. It helps us to bring patients comfort and a little bit of calmness. And those resources are hugely important for not just the patients and the family. So, it's wonderful to have that. So, as you know, with diagnosis, cancer starts to become a big part of people's lives and focus. So, the question is then, how can patients try to maintain some normalcy? How can you get them to that, help move them to that place where they can find this as a part of their lives, not their whole life? 

Hayle Lopez, Social Work Counselor, UT MD Anderson The Woodlands I think it's so important to emphasize to patients that cancer does not have to be their whole identity and their identity can include still being a parent. They're still a friend. They're a still a colleague. They are still a loved one. Maybe they are a caregiver themselves. They're still all of these things. So, I think it's so important to partake in the activities that make us feel normal. All the day-to-day stuff, so that if you have routine dinners, hangouts with family and friends, continue to go to those. If you have interests and hobbies that you enjoy, continue to do those things because it's usually in those mundane moments that I feel like we find normalcy and we're feeling a little bit more grounded. So, I encourage that a lot. I think it's also important to have parameters around how much a patient would like to talk about cancer. And I think that's kind of touching on what you mentioned about there being a lot of noise sometimes. I think sometimes patients will, you know, they'll just want to have normal conversations with their friends and their families. In my practice, I've often heard patients say, "I wish things could go back to how they were." And I'll usually ask, "Well, what do you mean by that? And what does that look like?" And some of the examples that I've gotten is, "I just want to have normal conversations with my friends. I want to know how their workday went. I want to how their kids are doing." So, all of those things help us, again, to feel a little bit more grounded. And I think it can be challenging for patients to sometimes put those parameters around how much they want to talk about their diagnosis because they recognize that their loved ones care and want to know how they're doing and they want to know if they need anything and things like that. And it's OK to also say, I'd like to update you when things change. Right now, everything's going OK. I'll let you know if something changes. That's absolutely OK to do. So, I think parameters and having some boundaries and some balance can be really helpful during a stressful time. 

Craig Kovitz, M.D., GU Medical Oncologist, UT MD Anderson You know, I'll always, when I see patients, I always focus on a couple of things towards the end of the visit. I remind them, whether it's during that visit or the next one, that we're not just trying to keep them alive; we're trying to help them to live. And they have to live their lives, and they have to do the things that bring them joy. And sometimes, as you stated, it requires building some boundaries around yourself with people that want to help, because they're trying help, and they're doing it out of the goodness of their heart. But sometimes helping is just having a conversation or doing something that doesn't have anything to do with cancer, because as much as patients become focused on it, family becomes focused on it, and so do friends, refocusing on also living is important. Any other advice that you have, or you give to patients in these situations? 

Hayle Lopez, Social Work Counselor, UT MD Anderson The Woodlands When patients are diagnosed - and caregivers - they're kind of in survival mode, right? They've learned something that can be pretty devastating. They're not sure where things are going to go. And there can be a lot of uncertainty, and they're already juggling a lot of stress. You have new patient appointments. You have your regular day-to-day routine, whether you are a parent, you're taking care of kids. You're taking care of your own parents. And then you're navigating a lot of change that, rightfully so, is going to be overwhelming. So, I think it's important; I will usually start with on a basic physiological level, I'll ask patients and their caregivers, "How are you doing? How are you eating and how are you sleeping?" Because those areas are areas where we can begin to neglect to take care of ourselves. And I think we may not always be as aware of it. And sometimes in my experience, I'll hear patients say, "I haven't been able to sleep two weeks leading up to this appointment." And that's really important to know that. That's going to make it really difficult to come into a new appointment where you're learning so much information. You are going to have to make decisions at some point. It's going to be hard to process a lot of that if you're not eating OK and you're not sleeping. We still need overall fuel. So, that's something that I'll usually ask and I want to emphasize again: I'll also ask the caregiver because the caregiver is so crucial to the patient. And oftentimes, for the patient to be doing well, the caregiver also has to be doing well. So, I do like to check in with both of them to see how they're doing and how they're coping. I also think a little bit more on the practical side, some things that patients can do is they can have someone with them at their appointments. Literally having someone within their corner if they can, whether that's a friend, just someone they trust. I think having another listening ear can also be helpful because sometimes I feel like patients may feel a pressure to remember all of the information that they're receiving and it's a lot. They don't have to do that. And having just another listening ear can just make a difference. And just some things like keeping things in a designated location if you're coming into your appointments, your medication list, just different documents that might be helpful. And then jotting things down prior to an appointment can also be really great. Having those questions written down and then coming in, because sometimes patients will leave the room and then, "I forgot! I forget what I wanted to ask." So, that can be a really nice, practical thing to do. And I think during times of distress, when patients are in that survival mode, they, they may forget that they have been through difficult times and maybe some challenges before and they have overcome those. So, oftentimes, we do have tools in our toolkit and it's a matter of are the tools that I have right now going to be effective for the situation, or do we maybe need to consider some other tools? And if that's the case, that's where we can step in and help connect them to those options and just better assess the situation. Some of the things that you emphasized is: It's a lot of information. They're not expected to know every detail and not everything has to be decided in one day. I think sometimes there's that pressure too. I just love to emphasize patients and caregivers aren't alone. There's so much support at any time. Sometimes it may be too much at the beginning, but the support is always there regardless of where they're at in their cancer journey. Dr. Kovitz, do you have any advice for patients when maybe you have noticed they are feeling overwhelmed? How do you support them during that time? 

Craig Kovitz, M.D., GU Medical Oncologist, UT MD Anderson Well, I make sure that we know who the team is that's around them, right? So, they focus with family, they can ask questions too. But when it comes to our role there, I think I make patients understand that we're available to them. It can be me. It might be another member of my team. It's not just at the visit. When the visit is over, we're not done talking. There's a need sometimes to have conversations throughout that. And I also make sure that we remind them of the resources we have at MD Anderson. Whether it's you all as social workers, we have a psychology and psychiatry team, and we have a supportive care team that can be wonderful in helping people through the emotional side of this and reminding them that that's part of it. And for some people who've never had to maybe deal with something this difficult, it's important for them to understand that it's OK to ask for help. And it's OK to ask questions. And it is OK to rely on those resources. And usually that eases them to know that they're not alone, that they have resources both of their own, in their own support network and through us. 

Hayle Lopez, Social Work Counselor, UT MD Anderson The Woodlands Normalizing a lot of things goes a long way because you're right. When we're assessing like, their medical knowledge, we're also assessing how familiar maybe are they with navigating distress and in a stressful situation and a lot of times we're normalizing it's very normal to feel overwhelmed by all of the appointments that you're having. It's normal to feel concerned as well about these conversations. These are hard conversations and I think letting them know they can talk to people about it. And sometimes that's where I think support groups can be helpful because it's others also going through something similar, and they're also sharing the similar challenges that they're having. Maybe they're also struggling with these conversations. So, just, I think even letting patients know these supports are out there because a lot of people are experiencing this can be really validating and reassuring to them too. 

Craig Kovitz, M.D., GU Medical Oncologist, UT MD Anderson I think a lot of people aren't used to having to rely on others, especially people that aren't, you know, in their close network of family and friends. And so, you have to remind them that it's, it's OK to rely on others. It's OK to ask questions. I think a lot of patients are sort of used to being, you know, otherwise healthy and sort of figuring these things out on their own. But it's OK to let them know that it's time in your life to rely on other people for parts of this, just as I'm sure others have relied on you in moments. And they sometimes can relax to that notion as you make sure that you are open to that and when patients call, I'll call them back usually the same day and we'll work through it. It may take multiple conversations and it may not just be me like I said, but making sure that they know that you understand this is difficult and that they may need to pull in different resources and helping them through it that way can be very helpful I think. 

Hayle Lopez, Social Work Counselor, UT MD Anderson The Woodlands I agree. And I think sometimes when our patients also are caregivers, sometimes they have this double role. And it can be really hard for people who have been providing a lot of care to their loved ones to now be the person who needs attention and care. And I think we provide a lot of support around how do you balance that when you are a patient now and you're also a caregiver. So, they're hard conversations and having the space to be able to be candid about it, I think can really be helpful. 

Craig Kovitz, M.D., GU Medical Oncologist, UT MD Anderson I think patients can sometimes feel, I see this a lot, that sort of, that's a weakness, right? That they need to be tough all the time. But they can show vulnerability and they can show the ability to reach out for others for help. And by having us be open to it and by having people like you come in the room and talk to them, I think they begin to, even from the start of their care, understand that it's OK to rely on those resources. 

Hayle Lopez, Social Work Counselor, UT MD Anderson The Woodlands Thank you for being here today, Dr. Kovitz. This was a wonderful conversation. 

Craig Kovitz, M.D., GU Medical Oncologist, UT MD Anderson It was great to be here. Thanks for the conversation. It was wonderful. 

Hayle Lopez, Social Work Counselor, UT MD Anderson The Woodlands And thank you for tuning in today. If you enjoyed this episode, be sure to follow or subscribe on Apple Podcasts, Spotify, YouTube, or wherever you get your podcasts. And don't forget to comment or review. For more information or to request an appointment at UT MD Anderson, call 1-877-632-6789 or visit MDAnderson.org. Thanks for listening to the Cancerwise podcast.