Survivorship: Managing the Fear of Recurrence

Transcript of Presentation.

(00:01): Marsha Seligman: Introduction. Welcome to the workshop, Survivorship: Managing the Fear of Reoccurrence. My name is Marsha and I will be your moderator for this workshop.

(00:10): It is my pleasure to introduce today's speaker, Dr. Dawn Speckhart. Dr. Speckhart is the clinical health psychologist for the Blood and Marrow Transplant, Leukemia, and Immunotherapy programs at Northside Hospital in Atlanta, Georgia. She has worked with cancer patients for the last 25 years. Her research focuses on how psychosocial issues impact transplant outcomes. Dr. Speckhart is a dedicated health psychologist providing individual, family, and group psychological assessment and support throughout treatment. It's my pleasure to introduce Dr. Speckhart.

(00:52): Dr. Dawn Speckhart: Overview of Talk.  Thank you. We're here today to discuss managing the fear of recurrence as part of survivorship. As she said, I've been in bone and marrow transplant for about 25 years now, mainly as the transplant psychologist at Northside Hospital in Atlanta, where we do allogeneic and autologous transplants and CAR-T.

(01:22): Fear of recurrence in cancer patients is normal but varies with diagnosis, relapse rate, and a patient’s prior tendency to worry. Fear of recurrence is normal. With oncologists unable to say that treatment is a hundred percent effective, there's always going to be a fear of recurrence. Research shows that 30% to 70% of survivors have moderate to high levels of fear of cancer recurrence - this is more than just a fleeting thought in the back of your mind. This is an actual anxiety, or a moderate to high level fear. Based on your specific cancer diagnosis, the level of fear will vary. For instance, each disease has its own different relapse rate or risk rate of recurrence. Based on your personality, the level of fear of recurrence also varies. If you are a worrier, and this is something that is normal in your life, it will likely be a factor that increases your fear. For those who don't worry and go with the flow, their fear might be less. But as we know, those people with more anxiety tend to fear more.

(02:26): Let's talk about your individual fear of recurrence. Do you have a history of anxiety or problems coping? Coping skills impact anxiety in general, which will impact the amount of fear we experience. How much anxiety do you have and what coping skills do you have? Do you have good coping skills or poor coping skills? If you have a generalized anxiety disorder or a history of panic attacks, those things can increase your fear of recurrence because an overall increase in anxiety typically increases fear.

(03:01): The risk for your disease, leukemia versus another cancer diagnosis, can impact your anxiety about recurrence. If you had ALL, do you have a higher risk or a higher fear of risk than someone with Hodgkin's disease? You may or may not, but your type of disease may impact your fear of recurrence. Do you have poor risk leukemia versus favorable risk leukemia? What you understand about your specific diagnosis and relapse rates impacts your fear of recurrence. Therefore, all these factors contribute to your individual fear level.

(03:40): Regarding general relapse rates, the rates referenced on this slide are generic. This is not my area of expertise, talking about specific percentages, but this was given to me by physicians and is something that I was asked to include. These relapse rates are based on literature related to these outcomes. I’ll start with general relapse rates after an allogeneic stem cell transplant. For patients with acute leukemia, the recurrence rate is approximately 20%. This varies by disease and disease risk, so Acute Myeloid Leukemia (AML) versus Acute Lymphocytic Leukemia (ALL), high-risk AML versus low-risk AML. For lymphomas and Myelodysplastic Syndrome (MDS), the risk varies. No two people are the same. Relapse rates can vary based on your specific disease. You can ask your transplant physician for a better idea of your specific relapse rate.

(04:33): General relapse rates after an autologous stem cell transplant for Hodgkin's disease are approximately 20%. For diffuse large B-cell lymphoma, it’s approximately 50%. As for Multiple Myeloma (MM), it's not curable with an autologous transplant.

(04:52): General relapse rates post Chimeric Antigen Receptor Therapy (CAR-T) are a little harder to predict because CAR-T is newer. About 60% of people with Diffuse Large B-cell Lymphoma don't respond or will relapse. For ALL, for which we do CAR-T for now, about 90% of patients will respond to CAR-T and about 50% will relapse with a plan for allogeneic transplant if they haven't already had one. With MM, most, if not all, will eventually relapse.

(05:26): Since recurrence can never be ruled out, fear about it needs to be managed. Now, let's talk about managing the fear of recurrence. We know it's there.  Everybody knows that there's a possibility. When I meet with patients pre-transplant, I don't talk about relapse rate. But I do talk about the fact that nothing we do is a hundred percent. Whether we're doing this treatment either for curative intent or to keep the disease away as long as possible, we have to be aware that nothing we do has a hundred percent cure rate. Because of that, we know that we have to manage the fear of recurrence.

(06:00): This is Lisa. Lisa is my best friend since childhood and she was diagnosed with cancer in 2021. As part of her cancer treatment, she needed radiation treatment. This is a picture of her at radiation treatment number five. She held up the fingers of her hand(s) to designate the number of each treatment. Eventually, she had to write the treatment number on a piece of paper. Overall, she is an anxious person. She would tell you that herself. She worried about the side effects. She worried about choosing the correct treatment plan based on risk of relapse and toxicity.

(06:33): She's now four years out. She has a better handle on coping with her fear of recurrence and has for about the last two or three years. She has found a strategy or multiple strategies that allow her to cope better and that won't allow fear to impact her current quality of life.

(06:55): Some anxiety about recurrence is good if it motivates patients to get appropriate follow up care, take medications, and live as healthy a life as possible. In general, we think of fear as being negative. However, some fear or anxiety related to recurrence is good. It keeps us attending our follow-up appointments. You don't want to avoid showing up because you don't want to hear the answer. We want you to come to your appointments. We want you to do your follow-up tests. We want to catch something that might be problematic as soon as we can. Fear of or anxiety about relapse keeps us taking our maintenance medication correctly if there are maintenance medications. You want to do these things to keep yourself as healthy as possible and engage in healthier habits such as eating well, exercising, avoiding substances you're not supposed to have, and socializing with others. A little bit of fear and anxiety will keep us going to our follow-up appointments, taking medications correctly, and engaging in healthier habits.

(07:49): However, we know that too much fear of recurrence is not helpful. While there's a healthy balance with all fears, too much anxiety is not helpful. For example, if we think of a student taking a math test, they need to have sufficient fear of failure to study hard, but not so much anxiety that on test day, their anxiety decreases their performance and they do poorly on the test.

(08:13): Fear of recurrence can diminish our quality of life in several ways. Fear can make it difficult to concentrate. It can decrease your performance. It can also decrease your ability to enjoy things. Too much fear hinders survivorship, which is what we're trying to maximize. It's why you went through transplants or through CAR-T. Now you're a survivor. We want to maximize your survivorship. Too much fear will make you unable to focus on today so you can enjoy what you're doing. It can also increase physical symptoms, such as headaches or stomach aches, and really impact your overall quality of life.

(08:55): Fear of cancer recurrence can be triggered by symptoms, follow up appointments, or stories about others who have relapsed. What triggers this fear of recurrence and how do we notice it? There may be symptoms such as a headache, a cough, or an ear infection. I have a patient who before being diagnosed with leukemia, got an ear infection. She went to her doctor. She got antibiotics, but the ear infection didn't go away. She went back to the doctor with the same symptoms: ear aches, ear pressure, and not getting better. She received a second course of antibiotics that still didn't work. She went back again, feeling fatigued. There were more symptoms. Eventually, she was diagnosed with leukemia. Anytime she has feelings similar to those she experienced before she was diagnosed, i.e., anytime her ear starts to hurt, she starts to worry about whether she's relapsing.

(09:36): Approaching a follow-up test or an appointment usually increases someone's anxiety, too. Sometimes we forget, or do our best to forget, that we had cancer and are getting checked to see if it's back - that's how people view follow-up tests or appointments post-cancer. These appointments usually increase anxiety because they put this possibility of relapse in the forefront of your mind.

(10:02): An advertisement on television or a story of a celebrity being diagnosed with cancer sometimes triggers relapse fear. When Robin Roberts was diagnosed with MDS and had an allogeneic stem cell transplant at Memorial Sloan Kettering in New York City, she was on TV all the time talking about her disease, her transplant, and her recovery.  For our patients going through allogeneic transplant at that time, it was a constant reminder of their disease and what was happening to them

(10:31): Beng notified that someone you know has relapsed post-transplant can be triggering. In your clinic settings, you sit next to somebody.  You're in the waiting room or in the hospital with five or six people that you see all the time. You see their loved ones, or your spouse or your caregiver sees their caregiver, and you get to know each other. We try not to make anyone else's business known to anyone else in the clinic, but we're aware that people meet each other and sometimes become friendly. If the person who was transplanted at the same time as you relapses, it hits close to home - that tends to trigger a real fear of relapse.

(11:15): We need to figure out tips to manage this fear of recurrence. The first thing is to educate yourself. No two people are the same. Relapse rates for twenty people with AML will be different. While a generic relapse rate for AML patients is available, your physician can talk to you about your specific risk of recurrence - that's something to find out.

(11:37): Are there symptoms you should look for, if any? There may not be, but what symptoms should you be looking for so that you can alert your physician if you have any concerns? Is there anything you can do to lower your risk of recurrence? Not everybody gets maintenance medications. Usually, there's not a lot you can do. But, if there's anything you can do, we want to do everything we can to prevent recurrence and relapse.

(11:59): Patients should identify the specific fears they have around a possible recurrence. Now that we're talking about relapse and what may happen, let's talk about what really scares you. Obviously, you're afraid of the disease coming back. Are you afraid of going through more treatment or feeling sick? How toxic was that chemotherapy for your autologous transplant? Were you miserable for those first two weeks? Does the idea of going through more chemo sound awful? Are you worried about finances or losing your job? Were you able to keep your job and work remotely, but now you're worried about what will happen if you get sick again? Death and dying - are you worried that if you relapse, they will tell you that your disease may go back into remission or that it is no longer curable? 

(12:53): Are you concerned about your family having to deal with this illness again? We all know that transplant and CAR-T are team sports. They impact the entire family. You need a caregiver. You need grandma or grandpa to take the kids to school or somebody else to do things. They are team sports. Are you worried about how this might impact your family?

(13:14): Are you worried about missing events? Sometimes people miss high school graduation or walking their daughter into kindergarten, whatever it might be. You gave up a lot during the first treatment and if it comes back, are you worried about things you might have to give up again?

(13:34): Some of these fears are expected. They're easier to manage if you create a plan. Most people's fears increase during restaging. We know it's coming. We know they're going to look for disease. Restaging, the time between the tests, and meeting with the physician for the test results feels like forever. Since these are events are scheduled, plan ahead. With Lisa, she was very anxious during those first two years. We couldn't quite figure out how to make sure she’d be okay starting from the day she scheduled tests until she received the results. Luckily, she's been in remission.

(14:11): Lisa had somebody accompany her on test day. Then, we mapped out a calendar as to whether it was seven or 10 days until she met with the physician for results. People in her circle signed up to connect with her for at least one hour on each of those days, whether it was a phone call, a Zoom call, FaceTime, an in-person lunch, whatever it might be. She had something on her calendar with one of us for each of those days. For the day of her test results, she scheduled a dinner in advance of knowing what the results would be. No matter what, she had a dinner scheduled, as a way of celebrating getting through the week, whatever the results might be.

(14:56): Everybody needs to schedule what works best for them. Have a support system - work on that. What plan is most helpful for you? It depends on how you cope and what you find most useful, as well as who you choose to take to appointments. Do you want somebody to talk about nonsense, anything other than cancer and sickness? Do you want to be alone? Would you find it irritating to have someone trying to talk to you while you're sitting in the waiting room waiting for your scans? Do you just want to listen to a podcast or read a book? What works for you during intervals between tests and receiving test results? Do you want to stay busy? Do you want to exercise? Do you want to travel? What will work for you? Make that plan so that you have a way of coping between test day and the day you get the results.

(15:50): The other thing to do is work on acceptance versus anxiety. Cancer is unfair.  But, this anxiety, this fear of relapse, is part of survivorship. It takes time to get to acceptance. I think Lisa got there. While she still gets anxious, she accepts that anxiety as part of her life’s routine every six months or every year. She accepts it and she schedules accordingly. It's just part of what's going to happen in her world.

(16:28): It's also helpful to think about what symptoms are normal post-treatment. Normal symptoms vary based on the treatment you have and the length of time since your last treatment. How far out are you from transplant - are you six months, two months, two years? What you're feeling varies by time in terms of fatigue and appetite. Certainly, two weeks after transplant, you're exhausted and you have no taste buds. Hopefully, by two years, those taste buds will have come back, along with your appetite.

(17:03): Did you have CAR-T or did you have a bone marrow transplant? They each have different side effects. What might be normal for you isn't normal for somebody else. Did you have an autologous transplant versus an allogeneic transplant? The toxicity of the chemo and the recovery post-autologous transplant are rough those first few weeks. With each week, though, you tend to feel better and better. With an allogeneic transplant, do you have graft-versus-host disease? Do you have a skin rash? Do you have GI toxicity? Do you have dry eyes? Are you having infections? Do you still have a risk of infection? Are you taking immunosuppressants? If so, do those medicines have side effects?

(17:39): What is normal varies from person to person. When we tell our patients that they’re doing great post-transplant, they look at us like we're crazy, because they don't feel like they did before transplant or before they got sick. Our version of normal at two months or six months is not the same as what you might expect. It may help to realize which symptoms are common and which symptoms may not be typical post-transplant or CAR-T.

(18:17): We know from the literature that everyday emotional stress post-treatment is well-reported in cancer patients and cancer survivors. Post-treatment, 35% to 80% of people complain of fatigue, 35% to 40% complain of distress, 20% to 40% complain of depression, and 31% to 70% complain of body image issues – which could include weight loss, weight gain, or an immune phase based on steroid use. Thirty to 64% of patients report problems with sex or intimacy, while 20% to 45% report problems with minor memory loss, chemo brain, difficulty getting back to work, and difficulty studying for class. Therefore, these characteristics are common among all survivors, regardless of the type of cancer.

(19:16): When you're having stress, which we know most survivors have, you need a plan to talk about your feelings. Most people don't want to talk about their feelings. Is it because they think it's a sign of weakness? Who knows? But most people are keeping their feelings inside and that's not a good tactic.

(19:32): If you're feeling fearful, if you're feeling anxious or concerned, you should talk about it. You should share whatever's going on in your head with family, friends, or professionals. You should tell them if you just want them to listen, or if you want help with problem-solving. This is a big one. This is something that my kids do with me. They walk in and say, "I'm going to tell you something, but I don't want you to try to fix it. I just want you to listen." Sometimes, we just want to say, ‘I'm worried about what these test results are going to show. I'm worried about the cancer coming back.’ There's clearly nothing that somebody can do to fix that, to fix that fear. Sometimes you just want to share. So, if you tell them, ‘Listen, don't have an answer at the end, just listen to me. I just want to feel supported.’ It will help them as much as it will help you.

(20:22): Don't waste your energy trying to protect your loved ones. Most of us don't want to get our kids upset. I don't want my spouse to worry about me. I don't want my parents to worry about me, so I just hold it in. But, if we work together, it will decrease everyone's fears. If you're holding it in, your caregiver is holding it in, because they don't want to upset you. Nobody's talking about anything. Everyone's in a panic and everyone's wasting energy on anxiety and fear. If we talked about it, we could probably come up with coping strategies that would better enable us to manage fears and loved ones.

(21:01): What coping strategies do help? There are several out there that have been proven to help with anxiety and this fear of relapse or recurrence. There are online and in-person support groups. There are BMT Infonet online support groups for people with GVHD and for CAR-T cell recipients. There are places such as the Cancer Support Community. There are all kinds of online or in-person support groups. There are also peer support programs where you can connect with other patients or caregivers. BMT Infonet has a Caring Connections program. The Leukemia & Lymphoma Society also has one. Our transplant program at Northside Hospital has something called the Network of Hope, which we don't use very often, but that connects transplant patients or caregivers with those who have already been through the process. We know this is helpful. This is the part where I am going to promote support groups. I don't feel like people trust in them enough. I think they're very valuable. But a lot of people think they’re a waste of time. In my work with survivors and in my work with Lisa - that's why the slide says trust like Lisa - they're useful.

(22:24): Lisa, as I told you, was very anxious. She was struggling. She had finished her treatment but found herself unable to get back to real life. She was able, at that time, to go back out, drive the kids around, go to schools, do whatever she wanted. But she was struggling. We, as her friends, asked her to join a support group - just to try it out and give it a chance. This was in 2021 when COVID had just happened. Everything was virtual anyway, so she didn't have to leave her house. She just had to log on to this Zoom support group. She agreed she would do it once, at least for that hour.

(22:59): As she logs on, all the windows pop up on her computer screen and she sees all the people participating. They're all older than we are - not that we're young. But they were at least 20 years older than her - not all of them, but a large majority of them. She told us she thought at that moment, this is going to be the biggest waste of time. I need to hang up and do something else. This is ridiculous. However, since she had promised that she would spend the whole hour in the support group, she did it. There she was, listening to these people talk. It was her first time and she loved it. By the end of the hour, she loved it. She told us she may be learned one or two valuable things. But, just being in a virtual room where people understood what she was feeling, where she knew they understood because they described their feelings in a way that she would describe them having gone through the same thing, was so helpful to her. While it wasn't necessarily exactly what she needed, it was helpful. To this day, Lisa joins this support group once a month at least. Even if she just says something that she thinks somebody else found useful, she feels like it’s a positive. Occasionally, she hears somebody say something and it just works for her. Try the support groups. Don't rule them out. Stay the whole hour. If you get one thing from it, that is one more thing than you had before you went to the support group. That is my support group pushing.

(24:42): Cognitive behavioral therapy or counseling is something very well-known for helping with anxiety. It helps the general population deal with anxiety and learn coping skills. Through therapy, it teaches skills that help manage fears and improve coping abilities. It can be used with or without adding an antidepressant or anti-anxiety medicine. You don't have to take medication to go to therapy or counseling. You can find a mental health provider who can teach these skills. BMT Infonet has a directory of mental health providers. Your insurance company will also have a directory of psychologists or therapists to which you can refer. Our cancer program or transplant program should have somebody to whom they could refer you.

(25:26): Cognitive reframing and restructuring are things we do naturally and often unconsciously. We reframe our thoughts and think, “Maybe this isn't good.” Usually, we can reframe things in a more positive way. But, when we're anxious, we struggle more. When we're worried, we struggle more.

(25:45): Cognitive restructuring can alter our thoughts in a more positive direction and help with anxiety. Cognitive restructuring is a similar process, but it's done systematically and deliberately. When a psychologist guides you through this process, it's called cognitive restructuring. Let me give you an example of cognitive restructuring in general life. Let's say there's a situation where you have friends going out to dinner this weekend and they didn't invite you. The first thoughts you have are that they don't like you. ‘They think I'm boring. I have no friends. I feel sad. I feel disliked. I'm alone. I'm stressed out. I was left out.’ Evidence supporting these thoughts is the fact that I do get moody every now and then, so maybe they don't like me. Evidence that doesn't support these thoughts is the fact that my friends have told me several times they think I am fun and make them laugh. Other friends have not been invited to some activities. I do get invited to most things. An alternative or balanced thought that a therapist or psychologist might redirect this person to is, ‘My friends like me, but that doesn't mean that I have to be invited to everything.’ The outcome is I feel happier. I feel less stressed about this situation.

(27:01): Let's go into an example of cognitive restructuring that is more along the lines of what we're doing. ‘I have a headache and my chest hurts from coughing. When I was diagnosed, my chest hurt. I'm relapsing; my cancer's coming back. I'm sad. I'm afraid. I'm stressed. I felt chest discomfort when I was diagnosed and I don't feel well today. When my chest hurt last time, it was cancer.’ The evidence that doesn't support these thoughts is that I have a cold. I had a headache, a fever, a cough, and an achy chest when I had bronchitis, before ever having cancer. There are other symptoms present that are unrelated to my cancer diagnosis. A more alternative or balanced thought is, “I'm sick, but that doesn't mean my cancer's coming back. My doctor gave me a logical reason for my current symptoms. I feel happier and I no longer feel stressed about it.’

(28:03): I don't know if it's a real saying, but sometimes a duck is just a duck. Sometimes, the flu is just a flu. Sometimes, an ear ache is just an ear ache. You're not necessarily relapsing. You're not fearful that your cancer's coming back. Sometimes, post-transplant, we just have regular problems that occur in regular people. You don't want to overthink it. Sometimes the flu is just the flu.

(28:28): Other things that help with coping that work include: relaxation, meditation, and expressive art therapy techniques.  These techniques can be done in person or virtually on YouTube. Survivors that I work with talk a lot about these activities. They learn and they get involved with things. When you're in isolation post-transplant, these are activities you can teach yourself or learn virtually on YouTube. It's very important.

(29:00): Distraction is huge. Your mind can't think of two things at the same time. If I say, “Think of a purple elephant” and you think, ‘Why would I think of a purple elephant, that makes no sense,’ you start pondering other questions. “Why is she talking about elephants? Did her kids go to the University of Alabama? I don't like the University of Alabama. I like Georgia, but since I don't watch football, who cares? I'm from the north. This whole series of questions makes no sense.’ But, while you were thinking those thoughts, you weren't thinking about your fear of relapse. Distraction really helps. 

(29:29): Exercise is nature's way of fighting anxiety and depression. It makes you hungry. It keeps you active. We know that people who aren't cancer survivors treat anxiety and depression through exercise. It’s very, very important.

(29:42): Purpose and a job are also useful. Survivors tell me that these are two of the most important things. You need a schedule. You need to make a schedule. Before you were sick, before you were diagnosed with cancer, you had a schedule and you had a purpose. You woke up. You went to work. You stayed home. You took care of the kids. You went for a walk. You played cards. Whatever you did, you did. When you were sick, you went to clinic. Now that you're no longer going to clinic, you need something to do. It could be exercise, such as walking to your mailbox twice a day. It could be doing puzzles, like a real puzzle on a dining room table that you can touch with your hands, as you did in the olden days. Put five pieces in each day or work on it for ten minutes a day.

(30:27): Find a hobby. Schedule phone calls. Schedule a lunch with one person. Talk to your kids every Thursday. You need a schedule and you need a purpose. You need a job. It may not be a paid job, but you need something that you need to do - again, purple Elephant. Distractions come in all forms. Find your distractions and use them. They're very, very useful.

(30:53): Find your coping strategies. Find your purpose. Get that puzzle and put it on a table. Go for a walk. You're not really building a house, but you are building a foundation again. You need to start over and figure out what works for you. Sometimes there will be things that work for you that you can build upon - like Lisa participating in the support group she loves. Not only does she get something from the support group, she gives. That giving, that volunteering, which people often do, also helps her cope. It makes her feel more useful.

(31:35): You want to avoid negative responses to fear. Coping skills are so important. You do not want to skip or delay your follow-up appointments. I know it's easier to avoid them. If you don't go for that scan, it's not bad because nobody can tell you that it's bad. You want to know what's going on in your body. You want to know what's happening. You want to get these results. If there's something that we need to treat soon, you want us to take care of it. You want to avoid substance use, which is an obvious indicator of poor coping, whether you're a cancer survivor or not. You want to work on better coping skills. 

(32:13) Social isolation is poor. You want to force interactions if you find yourself staying in your room. Make that schedule. Agree to speak to your children on the phone once a day and maybe your best friend every Friday. You want to escape that isolation. You want to avoid sedentary behaviors. You want to force yourself to do exercise. It doesn't matter if you walk a mile, ten steps, five minutes, how fast or how slow. You want to be active. You want to stay independent. You fought so hard to become independent, so continue to be independent.

(32:49): Practice healthy eating. You want to focus on being healthy. You've gone through so much, going through CAR-T or a bone marrow transplant. At this point, you want to be as healthy as you can so you can enjoy the time you fought so desperately to get. Here you are. You've gone through so much. Let's be healthy so that we can enjoy and have quality of life.

(33:11): You also want to pay attention if you're constantly requesting excessive examinations beyond what the doctor suggests, including treatments or pills. If your focus is on fear, on needing to see the doctor, or on thinking there's something wrong, then we need to change your focus. We need to figure out what approaches might help you cope a little bit better.

(33:38): You want to choose how you spend your time - spend less time with the medical team. I know it sounds crazy, but I know, as much as you can't wait to get out of clinic, you can't wait to come back. It's hard to transition from daily or every other day clinic visits to not seeing your medical team at all for three months. But it's very important that you spend more time with your family and loved ones. You should spend more time enjoying things with those people.

(34:03): Look for the positives versus the negatives. The way you change your thought process, the way you restructure your thoughts, is very important. Of course, don’t take anything for granted. I'm still upset if my refrigerator breaks. It is an inconvenience. However, I am so grateful that everybody in my house is healthy today. Don't take anything for granted. You fought so hard to get to where you are, to be a survivor. You really need to appreciate how far you've come.

(34:32): Make plans. You know what things make you anxious - when you're sitting around, feeling like you've lost purpose, and don’t know what to do with your life. Make plans and determine the value of things and thoughts. What you're thinking impacts how you're feeling. Some things are important and some things aren't. You want to think about how you're going to spend your time, what you're going to be thinking about, and what you're going to be planning. I hate to say it, but all survivors (I’ve been practicing for 25 years), tell me that this fear of recurrence will likely last a lifetime. I wish that weren't true, but most people tell me that it is. It’s still there - even if it's just a tiny little piece in the back of their head 20 years after transplant.

(35:24) It is also normal, from what all survivors tell me, to feel that only the medical team that got you through transplant, or other survivors, truly understand. There's this big irritation and frustration with people who say, ‘You know what? It's behind you. Just move on. You're good. You finished the transplant. You got through it. Just move on.’ Family members, friends, and co-workers say those things. Don't get frustrated with them. This is their way of decreasing their own anxiety. They don't want to worry about you anymore. They don't want to think that your disease can come back. For them, it is easier to just move on. Fear of recurrence is not in the tiny little part of their brain. It might be - but it's different than it is for you. We know that.

(36:16): You don't have PTSD. That is very unlikely, although I know it sometimes can feel that way. There are triggers that cause this fear to come back: smells, conversations, ear aches, whatever it might be. I totally understand that. It feels like trauma, which you did go through. Depending on how many complications you have, it certainly feels like trauma.

(36:40): It is great to find comfort in those who have the same understanding or similar experiences. We use Network of Hope and other support groups. It is great to find somebody who understands. You have chronic Graft-Versus-Host Disease (GVHD) that has resulted in dry eyes and everyone says, 'Who cares if you have dry eyes? It doesn't matter. You're cured, right? You're good.' But, you still have dry eyes. It impacts you every day. You're putting drops in your eyes six times a day. You want to talk to somebody else who's also dealing with that burden. Find a GVHD disease support group. It's very helpful to find comfort with those who have the same understanding and similar experiences as you.

(37:21): Remember, though, you are unique; what works for you may not work for someone else, and vice versa. Lisa wants to connect with somebody every day. I don't think I would need someone every day or would schedule a phone call every day. I think I would get a little irritated - but that's me. Lisa loves the everyday. She loves that we do something every day. It keeps her busy. It keeps her distracted. That's her coping skill. Her coping skill is distraction. You need to figure out what works for you. It may take a little while to figure out those unique techniques and how you cope.

(37:58): The main message of this whole thing is that you can't let fear of recurrence keep you from living your life. Transplant is a very difficult process. I wish it were simple. I've been waiting 25 years for somebody to put us out of business and tell us that we don't need it anymore. CAR-T is very difficult to go through. But now that you've gone through it and you're on the other side, you've got to keep going as a survivor and focus on living your life. If this fear of recurrence, this anxiety over 'What if I relapse? What if it comes back?’ is keeping you from living your life, we really need to work with you on coping skills and what other things we can do to make things better.

(38:40): I am a huge sports fan, so I like this quote from Babe Ruth that says, "Never let the fear of striking out keep you from playing the game." What that means is to never let this fear of the disease coming back, of relapsing, keep you from enjoying today, tomorrow, and all the things that you hoped to do before you underwent transplant. You're here. You're post-transplant, post-CAR-T. Do whatever it is you want to do. If something happens, we'll deal with it. For right now, don't let this fear impact your quality of life, okay? Thank you.

(39:20): Marsha Seligman: Thank you, Dr. Speckhart, for this excellent presentation. We will now begin the question and answer session. 

Question and Answer Session

(39:20): Marsha Seligman: The first question comes from somebody who would like to know if all therapists are trained in cognitive behavioral therapy, or whether it is a specific treatment I should seek out?

(39:46): Dr. Dawn Speckhart: That's a great question. It is a therapy that is taught to all therapists who go through school. If you see a licensed professional counselor, an LPC, a psychologist, or any therapist, and probably a social worker, but certainly any licensed counselor or psychologist, they are trained in cognitive behavioral therapy. It is a well-known tool to treat anybody with anxiety, not just cancer survivors.

(40:17):  Marsha Seligman: I am fearful, but my caregiver thinks I am probably depressed and should ask about taking medicine. Would you comment? 

Dr. Dawn Speckhart (40:27): Yes, that's a great question. I would say that there is something in our culture that keeps us all from taking medication for depression. I don't know why that is. If we have high blood pressure, we take medicine for that. If we have high cholesterol, we take medicine for that. But, for some reason, we feel inferior or weak if we take medicine for depression. The good news is that common SSRI medications - Prozac, Zoloft, Celexa, Lexapro - can be prescribed by your primary care physician. They can be prescribed by your primary oncologist. We prescribe them all the time in our program. They're not addictive and they are helpful in regulating the serotonin in your brain. They don't fix everything, but they smooth out the edges so that it's easier for you to use your coping skills.

(41:27): If you're really depressed, you might've been coping well before cancer because you could access your coping skills. But, after treatment, after transplant, you've had all these chemicals in your body. You went through a crisis. You're just not as able to focus and use your coping skills like you did before. These medicines will make it easier to take the edge off and allow you to use your coping skills. That's really what it is. Oftentimes, people just need this medication for a short period of time. Of course, a short period of time can be a couple years or so.  There is no shame in taking them for forever. They help. Usually, people can get back to whatever coping skills they need.

(42:09): If a family member thinks you're depressed, there's something definitely going on.  When our patients take the antidepressant, they usually say, ‘I don't notice any difference.’ But their caregivers or loved ones say, ‘we can tell the difference.’ If you trust your caregiver, trust them on this.

(42:30): Marsha Seligman: How do I deal with a close family member who is more fearful than I am?

(42:38): Dr. Dawn Speckhart: You tell them to get their own help. You don't want to take on any extra emotional burden. You have enough. If they're not in line with how you are coping and how you are thinking positively, they need to get their own help because their situation is not going to help you or help them. It’s not on you to fix. They need to go find their own help. Sometimes caregivers are more anxious than the patient. It varies by case.

(43:18): Marsha Seligman:  Are there any apps that you recommend for meditation or relaxation?

(43:25): Dr. Dawn Speckhart: There are not any ones that I recommend. I'm trying to think. Everyone finds their own sources on YouTube. You can search BMT Infonet and Cancer Care, but I don't have any apps that I recommend. If you find any, let us all know so we can look at them.

(43:52): Marsha Seligman: I know you talked about this in your presentation, but somebody said they have always been a worrier and would like to know how to change that after transplant.

(44:03): Dr. Dawn Speckhart: Truthfully, the way to change that is to see a psychologist or a therapist. We worry because that's how our brains are programmed. It's like the Serenity Prayer, where you're hoping to get the wisdom to worry about the things you can change and let go of the things you cannot change. If worrying helped, we would all worry. But it doesn't. Get cognitive behavioral therapy. Work on the way you think about things so that you can let go of what you know you cannot change and focus on the things you can change.

(44:52): Marsha Seligman: Somebody would like to know if worrying is the same thing as anxiety.

(44:59): Dr. Dawn Speckhart: It depends on your definition.  If it's starting to impact what you do, then it is anxiety. We all have worries, such as, ‘am I going to get an A on that test or am I going to get that promotion?’ That's worry. With anxiety, just like depression, it’s concerning when it starts to interfere with recovery. As a survivor, that recovery is a lifetime. If your worrying is impacting your ability to go places and enjoy life, that worry is anxiety. Anxiety needs treatment - that doesn't mean you're never going to worry. We all worry a little. It's the amount that you worry that’s important - whether it's anxiety and whether it's detrimental to your health and your survivorship.

(45:46): Marsha Seligman: Expressive art therapy sounds good. Writing, painting, et cetera. Where do you suggest finding these programs? Is it through transplant centers or do you have any other suggestions where to find such therapy?

(46:00): Dr. Dawn Speckhart: We have a place in Atlanta called the Cancer Support Community, which provides free therapy, as well as the services you mentioned to cancer patients and their loved ones. I would think that you could find these services if you look on BMT Infonet or if you look up the Leukemia & Lymphoma Society. They will have different suggestions for your area.

(46:21): A lot of transplant patients join virtual groups. You could probably even find virtual art therapy. Maybe it's not even about it being therapeutic, but it's an art class or it's a writing class. I know a lot of people, due to having allogenic transplants, are in isolation for a longer time. They often tell me that they're on YouTube, in virtual support groups, or joined a virtual class (not a college class), as a  distraction. It doesn't have to be therapeutic. If painting will do it for you, it's a great thing to do once a week or once a day.

Marsha Seligman (47:08): Would that apply to journaling as well?

Dr. Dawn Speckhart (47:11): Yes. I think anything that works for you is the right answer. I think sometimes we just don't know what works for us. Obviously, progressive relaxation is a very popular tool that people use for anxiety. I can't stand it. I don't like it. I feel like I'm sitting there. I'm deep breathing and I'm getting anxious while someone's teaching me to deep breathe. It's just something that doesn't work for me. But, an art class, a yoga class, they work. Try anything. There's no harm in trying something. Journal for a week. If you find it useful, continue. If you don't find it useful, then move on to the next thing. Anything that gets out your feelings and allows you to cope better is helpful.

(48:02): Marsha Seligman: This is our last question. Someone would like to know, how do I get to the point of achieving better coping skills? You mentioned creating a plan to face your fear. Is this to build coping skills? Building coping skills seems vague to me.

Dr. Dawn Speckhart (48:19): Yes, those plans are the coping skills. Lisa's coping skill is to schedule someone to connect with her every single day from the day of her testing to the day she meets with the physician and gets the results - that's when she needs help coping. She's doing great other times, but that is when she gets anxious. Her coping skills or her coping strategy is surrounding herself with friends every day to distract her. With other people, their coping skill is just having a plan for the day. They get up. They walk for an hour in the morning. They shower.  They make lunch. They have a schedule and can they keep going.

(49:00): Coping skills are whatever you think they are. I know that’s vague. It's because I don't know what will work for each person. I don't know what things you need for better coping skills. During the first year, some people need a lot of coping help. Sometimes, that need dissipates with time. Some people become more anxious the further out they get from transplant, when they're trying to reenter life. It depends on what you need. These are all coping strategies. You don’t need to be doing cognitive behavioral therapy to have a coping strategy or a coping skill.

(49:38): Marsha Seligman: Someone just shared something called Gilda's Club. Are you familiar with that?

(49:49): Dr. Dawn Speckhart: Yes.

Marsha Seligman (49:50): They said it was founded in New York and has chapters in multiple locations.

(49:56): Dr. Dawn Speckhart: Yes. Gilda Radner is a famous actress who passed away from cancer years ago. There are so many great resources and that's one of them. That's a great suggestion.

(50:12): Marsha Seligman: Closing. Well, thank you so much. On behalf of BMT Infonet and our partners, I'd like to thank Dr. Speckhart for this excellent presentation and thank you, the audience, for your questions. Please contact BMT Infonet if we can help you in any way.