Managing Fear and Anxiety that can Accompany Bladder Cancer

With Dr. Sermsak (Sam) Lolak

Year: 2023

Anxiety and PTSD after a Bladder Cancer Diagnosis

Video (23 min) | Transcript (PDF)

Managing Anxiety after Bladder Cancer

Video (20 min) | Transcript (PDF)

Question and Answer about Anxiety and PTSD after Bladder Cancer

Video (12 min) | Transcript (PDF)

Full Transcript of Managing Fear and Anxiety that can Accompany a Bladder Cancer Diagnosis

Stephanie Chisolm:

Welcome to Managing the Fear and Anxiety that can Accompany a Bladder Cancer diagnosis. Any cancer diagnosis can cause fear and anxiety, but bladder cancer with its high rate of recurrence can be very fearful and it can also lead to a great deal of distress, both financial distress and personal distress. Today we’re going to talk about how to manage the fear and anxiety that can accompany bladder cancer. This session is really meant to highlight and provide strategies to address the many stresses that accompany this diagnosis.

If you have questions beyond this call or if you think of something later on, I’m delighted to let you know about BCAN’s new partnership with CancerCare on our bladder cancer call center, which is open during regular business hours, Monday through Friday, Eastern Standard Time. And all you need to do to speak to a licensed clinical social worker is call 833-ASK-4-BCA. Tonight, BCAN is honored to host this important conversation to help you navigate and understand these difficult feelings and issues. I’d like to welcome Dr. Sermsak “Sam” Lolak from Inova Schar’s Life with Cancer Program. Dr. Lolak specializes in the management of mental health issues like depression and stress and anxiety in the context of cancer diagnosis and treatment. And this includes drug interactions between cancer therapies and psychiatric medications. He also has a special interest in mind, body and contemplative practices, especially mindfulness and compassion cultivation. And I know he includes that in his slides. And he’s very aware of the clinician burnout issue as well. I’d like to welcome Dr. Lolak to our presentation and I am going to turn my screen over to you.

Dr. Sam Lolak:

Thank you. Thank you so much Stephanie, and thank you BCAN for having me today. And also I want to thank Morgan who is in the background helping with everything today. First I’m going to share my screen. Just a slide show. I don’t hear you, so I’m assuming that everyone see my screen.

Stephanie Chisolm:

Yes, we can see it.

Dr. Sam Lolak:

Thank you. Today we are going to be talking about some of the strategies that can help you manage anxiety and fear that accompanies the bladder cancer diagnosis and treatment. So as you know, cancer not only affects your physical health, but also emotional, spiritual and cognitive health. And when we talk about fear and anxiety, the way I look at it is as a spectrum, right? Spectrum, meaning that there’s one end that could be viewed as normal, normal fear, normal anxiety, and then on the other end of the spectrum it could be what we call dysfunctional or starting to impact your daily lives. So first, fear. Fear is a reaction to clear and specific threat or danger. It could be reasonable like when you have a difficult exam coming up and you have some fear or it could be totally out of proportion, which can lead to some distress.

What about anxiety? Anxiety usually is defined as a less specific worry or apprehension. A lot of time it’s in the background, but it can come into the forefront when it’s triggered. And it is often about the future. Most of the things that we feel anxious about, most of the time it’s something that hasn’t happened yet. But the trick is the brain doesn’t know that. The reason we have anxiety or we feel anxious is because the brain wired mechanism to respond to the threat. And sometimes the brain thinks that something is a threat, even though it’s actually not. At least it hasn’t happened yet. The anxiety can be situational. I think of all of you here can relate to anxiety when you are waiting to see the doctor for the test result or the scan result, it could be episodic comes and goes, or it could be chronic running in the background for a long, long time.

And in the context of cancer, especially cancer diagnosis or even phases of treatment, anxiety can be triggered usually by incomplete information or the sense of uncertainty. When the doctor doesn’t know the answers or the test results haven’t come back or the treatment effectiveness is still not apparent, right? There’s a sense of uncertainty that can lead to anxiety. If the anxiety is excessive or it interferes with function, then we can classify it as an anxiety disorder. Anxiety is especially common at crisis point, for example, like I mentioned, whenever the treatment change, new recurrence or even around the time of routine follow-ups or procedure, could be on ongoing. Some people continue to have anxiety years after cancer diagnosis or even years after their cancer has been stabilized.

I just wanted to point out real quickly that even though we talk about anxiety from a psychological perspective, it is also important to be aware that sometimes the symptoms of anxiety or the sense of feeling anxious could be from medical symptoms. For example, pain can cause anxiety or could be from the disease itself, like pulmonary embolism can cause symptoms of anxiety or the medication, for example, steroid or some chemotherapy. It is important to discuss with your medical providers, especially whenever the anxiety happens acutely without obvious stress. There are several symptoms of anxiety. If you look at these slides, a lot of these will be familiar to you. When we feel anxious, we feel like our heart is pounding. You feel sometimes short of breath, butterfly in stomach, even nausea or muscle tension.

And there’s psychological symptoms, excessive worrying, irritability, mind racing, difficulty going to sleep. And then behavioral symptoms. Sometime being ruminating, obsessing over something or avoid of some situation. What about treatment of anxiety? There’s several treatments that works for anxiety and most of the time some of the most effective treatment that we have for anxiety is going to involve some sort of counseling or psychotherapy. One type of psychotherapy that has really good evidence for anxiety is called cognitive behavioral therapy or CBT, which aims at trying to identify the pattern of thinking or thought that leads to anxiety. For example, catastrophic thinking. When you start to think of the worst possible outcome, usually a lot of people can relate to that, because that’s what we do when we deal with some life altering events like cancer.

So this type of counseling or therapy can really help identify those thoughts and give you strategies to manage those thoughts and behavior so that it doesn’t lead to anxiety. Other types of counseling or psychotherapy work as well. And there are techniques what we call in general relaxation exercise. This includes breathing techniques, in and out, deep breath, progressive muscle relaxation. And you can find out more information about this online, just go Google it. Tensing your muscle and then relaxing systematically from head to toe can help with that sense of anxiety. Or a technique that’s called guided imagery. Stress management typically, generally will work. Healthy coping mechanisms, for example, things like hobbies, spiritual practices, mind body intervention, mindfulness practice, yoga, acupuncture, massage.

Those things work for anxiety, because not only we kind of manage the anxiety from the top down, starting with our thinking to anxiety behavior, but we can also manage our anxiety from the bottom up. Anxious thoughts make us feel tense, but if we feel relaxed, whether it’s from breathing practice or doing yoga or massage, it can also send the feedback signal back to the brain that everything is okay now, what you worry about is actually hasn’t happened yet, which can help also with anxiety. And then lastly, exercise actually has a lot of really good evidence that can help with anxiety. It’s one of the most effective coping mechanisms that we have for anxiety, but you have to do it. It requires some effort and some discipline to do exercise. And then other self-care practices, diet, sleep as well.

And then lastly, medication, which can be helpful in many patients, especially when they’re already doing those things that I mentioned but they still struggle with intense anxiety and there are several types of medication that we use for anxiety. This talk we’re not focusing on that, but you can find those information pretty readily online. Then I want to spend the next part of my talk focusing on the concept of cancer and post-traumatic stress disorder, about PTSD. You might be familiar with PTSD from traumatic events like being in a war or sexual assault, things like that. But cancer experience can also be traumatic. But it’s important to know that the studies that we have suggest that diagnosis of cancer, a treatment of cancer, can elicit full PTSD syndrome, but only in a minority of patients.

Most of the time the cancer experience itself doesn’t lead to full diagnosis of PTSD. Nevertheless, even if you don’t have a full diagnosis of PTSD, you only have some symptoms, what we call subsyndromal symptoms, they’re very common and also associated with reduced quality of life. For example, we have studies that use structured clinical interview methods that reveal a mean prevalence, statistical prevalence for cancer related PTSD to be 6.4% ,and then 12.6% for lifetime PTSD diagnosis in cancer survivors. Which when we compare to general US population, it’s actually almost double. Cancer clear clearly is a risk factor for PTSD. And if they have to summarize, set up how PTSD works, why PTSD happen, and this is probably too simplistic, but basically when the brain doesn’t know that the trauma that you have is a memory.

The experience of trauma, whether it’s from war or from assault or violence or from experience of having cancer or going through cancer diagnosis, those experiencing are sort of still floating around in the brain. The brain still responding to it as if it’s happening every single day as opposed to it being a memory. It doesn’t become a memory until it’s properly processed and given their proper place. So in psychiatry, we use the criteria called DSM-5 to properly diagnose mental health disorder, PTSD is one of them. I just want to give you an idea of the range of symptoms that would meet criteria for PTSD, and this is sort of the abridge version of it. So to meet a diagnostic criteria for PTSD, patients have to have symptoms, have to meet criteria for A, down to A, B, C, D, F, G of the symptoms in order to meet the diagnostic criteria.

When we see the patients to go about properly diagnose them, you start with the first criteria, which is a stressor that the person was exposed to death, threatened death, actual or threatened serious injury or sexual violence. This one, it’s hard to say whether cancer experience itself meet the criteria for this one all the time, but there’s certainly a situation where patient was exposed to threatened death, actual threatened serious injury because of the cancer or the treatment. The next criteria you have to have what we call intrusion symptoms. Basically the brain is persistently re-experienced trauma in a number of ways. For example, nightmares, having flashbacks, having physical reactivities after exposure.

The next criteria is called avoidance. So you have a behavioral symptoms as a result of traumatic experience that you avoid seeing the things that remind you of the trauma, avoid of any stimuli that reminds you of the trauma. In this case it’s the cancer experience. The next criteria is what we call alteration in cognitions and mood. And that includes having depression, negative affect, decreased interest in activities, inability to recall the actual details of the trauma. And this happened a lot in cancer patients where if you ask some cancer patients during the key event, they just went blank.

And then you have what we call alteration in arousal and reactivity. We have what we call hyper arousal or hypervigilance, difficulty sleeping, difficulty focusing or having irritability. And then the next three criteria is the context of the symptoms that you have to at last for more than one month. It creates functional impairment or distress, and it’s not due to specific medication, other medical illnesses or substance abuse. This is just to give you an overview of how to properly diagnose PTSD. But as I want to mention that, like I mentioned before, a lot of patients, cancer patients, even though they don’t meet the full criteria of PTSD, they have only substance trauma criteria, it’s still more than enough to cause a lot of distress, emotional distress, physical distress, and it interferes with function enough that they would benefit from support.

So what’s relevant in terms of bladder cancer? Because we know that of the high recurrence rate, some of these survivors are required to have frequent test cystoscopies, right? Every few months you have to have that procedure and it’s that same procedure, repeated procedure over and over that sometimes can trigger that memory, that trauma. And this may trigger some of the symptoms that I mentioned before, impacting quality of life. It can also prevent some survivors from sticking to their treatment or their surveillance because of their reactions that they have going into the doctor’s office, having the same procedure, medication over and over. So that’s why this may be relevant.

There’s one study that showed that almost 30% of bladder cancer participants met criteria for one of the symptoms cluster. Not all of them, but one, either intrusions or avoidance or negative mood of hyper arousal. So that’s pretty significant. And we know that younger patients or patients who have active disease or have more comorbidities, they have several medical psychiatric illnesses, may have lower social support or have higher cognitive problems associated with higher PTSD symptoms. That’s their PTSD. But on the other hand, it’s not all bad. Traumatic events are bad, but doesn’t mean that everything that happened as a result of that is bad. Even though the distress, the trauma and the threat from cancer can lead to extreme distress, it can also prompt positive shifts, whether it’s in priorities and values, self views or sense of meaning and spirituality.

We have a term for this. It’s called post-traumatic growth or stress related growth or existential growth. For example, cancer patients sometimes will describe a change in several areas of their life. For example, improved relations with others, whether it’s partner, family, friends, or other cancer survivors. They report enjoying new life experience because their priority in life has changed. They may decide on new career choices or focus. Report a greater appreciation for life or a sense of gratitude or a sense of personal strength, because they are able to develop that new personal narratives. So again, this does not imply that trauma is good. Nobody wishes cancer or traumatic events for anybody, and oftentimes we do not have a choice and people can have both.

It doesn’t have to be either or. You can suffer from the effects of traumatic experience, but you can also grow from it. They’re not mutually exclusive and it’s not a given. Some people don’t have that post-traumatic growth, and that’s okay. That’s sort of the part of my talk that has to do with PTSD and the anxiety diagnosis. The next part I’m going to give you some strategies to help you deal with cancer anxiety. First of all, you don’t want to deny. Having anxiety around cancer is very common, but at the same time you don’t want to over-identify with it, meaning that you don’t want to let this anxiety consume or become your identity. So one thing that can really help is to create that healthy routine and then stick to it.

The reason is that when you do something over and over, it becomes a routine. And then like I mentioned before, anxiety is about the future. But when you do something the same thing over and over, every day, every week, it helps transcend time and it helps you regain that sense of control, because they’re predictable. So you want to anchor your day with routines and healthy habits. Exercise is a good one, socialization’s a good one. It doesn’t matter. It can be anything. It could be your morning routine, how you wake up and exercise and sit with a cup of coffee and reading newspaper and then maybe in the evening go out for a walk and then once or twice a week having coffee with your friends, and then weekend going out, do some more exercise.

So when you starting to fill your calendar with those routines, it does help with anxiety. That’s one strategy. The next one is to find balance. And a lot of this I have to admit that it’s easier said than done, but nevertheless if you keep working on it, it can really help with your anxiety. What type of balance that you want to find? First, balance between control and acceptance. Like I mentioned before, anxiety is your brain’s attempt to try to control the situation, but most of those situation is easily out of our control. That’s when acceptance can be really handy, right? Because you want to focus on the things that you can control. And then balance between enjoying the moment and worry about the future or plan about the future. When you have cancer or in life in general, you cannot, if you spend all your time thinking or preparing a plan for the future, it’s going to take that energy and time away from actually living, actually enjoying the moment.

But on the other hand, nobody can just live their life as if it was their last day either, right? Because you have to have some plan. You have to be able to strike that balance. Another balance that may be good to think about when you have cancer is balance between distraction. Sometimes when you feel overwhelmed, it’s easy or it’s helpful to distract yourself and do something else, especially if it’s moving your body, talking with friends, so that it can help you shift the focus from the things that you’re stressful about. But again, you cannot live your life trying to distract yourself all the time, especially when you deal with cancer. At some point you have to be able to experience the feeling that coming from having the cancer, the feeling of grief and loss and sadness and anger, whatever it is, and then be able to reflect on it and process it, so that eventually you make sense of your experience.

And there are many activities that can help you do that. Journaling, including just writing freely, can help. Sometime reading cancer memoir. Doing art or meditation can help with that. Or you can also engage in counseling or psychotherapy to help the professional help process your experience. When you in the midst of cancer treatment or diagnosis, it’s easy to look into the future and just assume that this is going to be how you feel every single day, because this is how you’re feeling now. But you have to remind yourself that usually it’s not accurate when you try to project your current feeling outlook into the future, because we change all the time, we change every day, and actually our brain changes literally. There’s a process called neuroplasticity. The brain changes connection, changes the wiring all the time.

So sometimes, most of the time it’s not helpful to try to predict the future that I’m going to be feeling this and that way. Instead you want to focus on maybe developing new narratives. So trying to make sense of your whole experience, find a thread that links your pre and post cancer self so that you can tell your story in a more coherent fashion. When you feel anxious, what do you do? There’s a lot of literature or information online that’s written about this, and you can find quality ones, just Google and go into repeatable websites. But there’s some guidelines. So first of all, when you feel anxious, because anxiety almost always lives in your body. You want to first notice a sensation in your body, and then you want to acknowledge the feeling, right? That right now you’re feeling anxiety, you’re noticing anxiety.

Notice that I don’t say I am anxious. Instead I encourage you to think of anxiety as a state that comes and goes, right? So you notice anxiety versus you over-identify with it. Saying I’m anxious because anxiety is not you, it’s just the experience that you have. And then you want to make space for your anxiety by slowing down, slow breathing. There’s a good breathing technique called 4-7-8. You breathe out, you breathe in four seconds, you pause for seven seconds, and then you breathe out eight seconds or count to eight, doesn’t have to be eight seconds. You move your body, that’s why things like exercise and yoga can really help, because you make space for that anxiety.

What if you have a lot of rumination? So rumination is basically you’re thinking something, the same thing over and over and over, and you can’t get out that rabbit hole. And we all know that that’s not helpful, just to think the same thoughts over and over. There’s some strategies that can help with that. First, you want to ask a question, why is that rumination there? And is it helpful? How helpful it is to your situation? Sometimes you get insight from that, but most of the time you come to a conclusion that it’s not very helpful. Because it is, basically it’s a futile attempt to control the future. Rumination is basically your brain trying to get some sense of control. It gives illusion that you are something that can help even though it doesn’t, right?

So you want to remind yourself that the energy and effort that you put into worry actually doesn’t have any effects on the future, especially if it’s the rumination type. Now you can plan things and then you can do things that affect your future. But when you ruminate on thing, when you think the same thing over and over, even though you spend a lot of energy, it doesn’t affect your future at all, right? And you want to remind yourself that this rumination can be unconscious attempt to avoid dealing with the loss. When your brain is trying to focus on controlling the future so that you don’t have to think about the things in the past that is painful. So now those are some of the reminders, and then once you recognize that these may be what’s going on, then it gives you some power to do something about it.

Once you ask those questions, you do the breathing techniques, you do those things that I mentioned, you feel a little bit settled, then you can ask more questions. What am I anxious about? Just pick one thought that you have, that you seem to be ruminating, and then ask, what’s under my control in that situation and what’s not under my control? You can ask, is it worth spending energy for these things that I’m worried about? Does it really matter how important it is? And then you can start to manage them by asking questions like, what can I do now or plan to do to deal with this in a way that is consistent with my values and priorities? That’s when the information about your priorities and your values can come in really handy. Because all the activities and actions that you do should be consistent with your values, whether it’s compassion, it’s family, things like that. It helps you make the right decision.

Then once you know what you’re going to plan to do with it, have the next step, then you can let that anxiety or let that thoughts go. And this is when the distraction may be helpful, because if you have a hard time letting go, then you can distract yourself. Again, you want to have time to think or reflect on your values and your priorities. You want to think short term. This strategy can be really helpful when you try to manage overwhelming anxiety about a lot of things when you in the midst of the treatment. Think about short term first. Over the next couple weeks, what’s my focus? Don’t think six months, 12 months yet, think you’re trying to pull back a little bit and just say, okay, what about next week? What about next couple weeks? And then what about the next month? And then once you do the short term right, the long terms will come. Okay?

And then the next thing is you want to turn what we call FOMO, which is fear of missing out. Whenever you see Facebook or social media, you start to compare, I wouldn’t be able to go to this nice vacation, go to this concert or having a good time, you have fear of missing out. But instead you turn that into what they call, JOMO or joy of missing out. That missing out is not necessarily a bad thing because that’s what life is about. When you choose one thing, then you miss out on the other things. Instead you make the most of the things that you have to do or you choose to do. And these other practices, what we call gratitude practice, can be really helpful in this, right? And the easiest way to do this is at the end of the day, every day, you write three things that went really well that day or three things that you are feeling grateful for and you keep doing that every single day.

What it does is it help prime your brain to look for more positive things, the things that go well in each day. It can also help you re-experience the meaningful, happy moments that you had that day to experience it again. So you benefit from it twice. Reminding yourself or recognizing that sense of awe can be extremely helpful in counteracting this sense of anxiety. And you don’t have to be at Grand Canyon to experience a sense of awe. It can be daily thing. Sometimes just seeing animals playing, kids playing or rainbow after the rain, can give you that sense of awe. And then you learn to celebrate small wins. Not every win has to be big. It could be really small and the things that you’re grateful for.

And then you can learn some practices that can help you be more in the present. Like I said, anxiety is about the future. So the more you can train your brain to know the difference between present and future, then the better you’ll be able to manage the anxiety. Exercise can help, physical activities, mind, body techniques, and then specific practices called mindfulness can be really helpful. So what is mindfulness? This is a big topic, but I’m going to not spend a lot of time because we sort of running low on time, but again, you can readily go online. There’s a lot of good websites, podcasts, apps, publication that can help you learn more about mindfulness. Which is essentially the awareness that immerses through paying attention on purpose, in the present moment and doing it in a non-judgmental way.

So essentially it’s really learning how to pay attention to how we pay attention. And it can help you feel, you look at life more clearly, right? It’s just a cartoon that I like to put in my slides. When you walk your dog, who do you think is happier? Right? Between you that’s kind of thinking about a hundred million things and then the dog, which is enjoying the scenery. John Kabat-Zinn, who is a mindfulness researcher and teacher, famously said, “You cannot stop the waves, but you can learn to surf.” That’s how mindfulness works. And there are many apps and programs and resources that you can search out, classes that can help more and practice more about mindfulness, but that’s a key word, because it is a skill, so it gets easier and better with practice.

Self-care is always important, especially when it comes to stress, anxiety, and health in general. So basically you want to do these things well, eat, sleep, rest, exercise, socialize, laugh, learn to play, and also pray, quote unquote, pray, whatever that means to you. If you do those well, then you practice good self-care. Self-compassion is another big topic that can be really helpful in many patients. A lot of us seem to have a higher standard when it comes to ourselves that we are not so self-compassionate, but we can be really compassionate to the others. But when you think about it, we are a difference, whether it’s you or it’s me, ourself or the others. We are experiencing losses and pain and things that happen in our lives. So you are not less deserving of compassion than anybody, right? Because we all share that common humanity. So that self-compassion or that self-love can be really beneficial things to practice.

I’m going to leave you with this easy practice that I usually recommend. It’s called 5-3-1. It’s by the Center of Healthy Minds, which is part of University of Wisconsin. They recommend that every single day if you find time to, five is five minutes, five minutes doing quiet reflection, meditation, breathing. And then three is three things. Should practice. You write a thing of three things that went well or three things that you are grateful for. And then one random act of kindness. And this can be kindness for strangers, kindness for people that you love, that you care for, or a kindness for yourself. If you do that every single day, I think it will improve your sense of wellbeing and happiness.

I’m going to leave you with a quote from Amanda Gorman, who’s the nation’s first youth poet laureate. And she says, “If you are alive, you are afraid. If you are not afraid, then you’re not paying attention. Yet fear can be love trying its best in the dark. So do not fear your fear. Own it. Free it.” Okay, so I think that was my last slide, and thank you very much for your attention and I believe we have some time for Q&A.

Stephanie Chisolm:

Thank you so much, Dr. Lolak. There’s always a great presentation. As the mom of two golden retrievers, I loved your slide. I know I am guilty of my mind being full, and yet my dogs are walking and they’re mindful and they’re paying attention and they’re sniffing everything. It was just such a nice image to keep in my mind, and I think that really helps. There are a couple questions that have come in, and I had one too. Catastrophic thinking. That’s something that as a loved one, as a caregiver can be really hard when maybe a patient, or likewise the patient feeling the same way about a loved one is kind of stuck in this mode of catastrophic thinking. What are your suggestions for bringing that to the forefront so that the couple can address it, the patient and their caregiver can address the catastrophic thinking?

Dr. Sam Lolak:

I think that that’s a good question and also a tricky one, because we all do it. We all tend to go to the worst possible outcome, even though we know that the real chance of that may be low, but that’s how the brain works. I would say that there are many steps of this, but the first step is in awareness. When you have that awareness that, okay, I’m doing this again, you or your partner pointed out to you in a compassionate fashion, that you’re doing this again, and then we reflect on it together. Like I said, mindfulness skill can be really helpful in this because it helps give us space from you and your thoughts, so that eventually you can see that pattern. You can learn from, the last time I thought this was going to happen for sure, then what happened? It didn’t happen.

So what about this time? That means that this time there’s a possibility that it might not go as bad as I imagined. So you develop those reflections, recognition, and then the practice around it.

Stephanie Chisolm:

I know. I’m one of those people, I play a mean game of worst case scenario. I always can think about the worst and it’s sometimes really hard. And you did a really nice job explaining that. So a couple of questions. I feel like even if I beat this disease, I’ve lost all ability to feel carefree or joyful due to the chronic anxiety that it will eventually come back and progress. Do you have any thoughts on dealing with this specific feeling? You can summarize, you covered so much in your presentation.

Dr. Sam Lolak:

That’s another good question, but unfortunately there’s no quick answer to it. I think this is very common. What I would say is that if you feel like you need additional support, I would encourage you to seek out maybe first a counselor, a therapist that can help you, first of all give you space to process the experience that you have and then might be able to coach you or help you develop those skills that I mentioned. Right? Because it is something that happens very commonly after you have cancer because of how traumatic it is like I’d mentioned. But at the same time the brain is also capable to change with enough support and practices, whether those support involve counseling practices or even in some cases medication, then I would say explore those options.

Stephanie Chisolm:

Okay, great. All right. I have anxiety about exercising because I fear it will cause a problem or make something worse. I feel like bladder cancer has robbed me of my ability to enjoy exercise. Any suggestions of working through this? You mentioned exercise as almost a therapy for the stress and distress, so how do you get over the fear?

Dr. Sam Lolak:

That’s a tough one. So first I would say maybe talk to your doctor first, what kind of exercise that realistically would hurt or would help. They would be in a position to educate you or explain it to you, that okay, this is good, maybe this is something that you avoid, and then you use that information and maybe working with a professional, whether it’s a trainer, there’s a lot of exercise therapists that specialize in patients with medical problems or physical therapists that may be familiar with cancer patients. And then have them help you to develop that routine. So exercise, right? Because when you know that it’s safe, the doctors say it’s safe and you have professionals help you, supervise you to do it initially, it might help you gain some confidence.

And then if you still have anxiety about it, then sort of like the previous question about what to do, then you starting to engage in those approaches and techniques, whether it’s counseling practices or even medication to help with those symptoms.

Stephanie Chisolm:

Right. And it doesn’t have to be exercise like a big program. I know we just recently did a program on exercise and mental health for bladder cancer patients. So Morgan, if you could drop that link to the webinar that dealt with a little microburst of exercise that Scott was mentioning, that might be something very helpful too, to start small and always go to a pro when you’re a little anxious about it, they may have techniques, especially if you’ve had a cystectomy that might help you to protect your abdomen area or your ileal conduit. Anything that makes you nervous, they can find ways to do that. We have one more. Another question. Do you have any experience with the technique of tapping?

Dr. Sam Lolak:

I don’t have a ton of experience, but there’s a lot of information out there. So for those of you who are not familiar, so tapping is a technique that’s derived from a type of therapy called EMDR, which has some evidence to help with PTSD symptoms. So basically the idea is to use tapping as a form to help two sides of your brain integrate the trauma. And again, I’m not an expert, and the tapping that is not technically EMDR can help with some anxiety from the same concept that you help the brain process all the stress so that the brain knows that the difference between what’s in the present and what’s the memory. And at the same time it can help with relaxation by giving your body a sense of comfort.

So sometime it doesn’t have to be a tap, it could be a soothing techniques like when you feel really anxious. Some people would feel better by just, like a self hug or just self soothing, doing this or tap your legs to send a signal back to the brain that everything is okay. I believe there’s a lot of resources or books about it and there’s some professionals that have a lot of expertise about it. I would refer you to those.

Stephanie Chisolm:

Great. Okay. I think we have time for one last question. For those of us who have undergone a radical cystectomy and are living with a diversion that has changed our body and how it functions, what are some suggestions on how to process or move through that trauma when we have to deal with the new way our body functions every day for the rest of our lives? There’s so many anxieties about having a urinary diversion about is it going to hold up? Is it going to work every day? And that stress and anxiety that comes along with it. Do you have any specific suggestions?

Dr. Sam Lolak:

Again, this is a great question, but I’m afraid I don’t have a quick answer for it rather than, I cannot imagine going through all this day in and day out, whether it’s the real sort of pain and discomfort, plus the sense of body image and sense of self that’s outer by all this treatment and the impact that you have, whether in terms of socializing your routines or even your relationships. This is a lot. Okay. I would imagine that when issues like this is really impacting your day-to-day life, you might really benefit from a professional that can help process and give you some specific techniques in all of this. I would recommend probably finding a therapist, someone that you can trust, that you can develop relationship with and then work with them on these specific issues.

Stephanie Chisolm:

Again, I know that people may be joining us from all over the country. If you’re in the Northern Virginia area, you can stop by Life with Cancer and see Dr. Lolak and his team. But remember that BCAN does have this one additional resource that we just added. Call 833-ASK-4-BCA, and you can speak to a licensed clinical social worker who will help you identify places in your location to really be able to address some of the anxieties that you might be dealing with. Dr. Lolak, this has been very informative and I think it’s been a phenomenal resource for patients. Thank you so much for joining us again today. We really appreciate that you did this program for us at our summit last year, and this is just a wonderful way to remind people that this is an impactful resource. It can really make a difference in the quality of your life.

You’re working very hard to improve your health, but sometimes if your quality of life is not great, it can really be an added distress. And I’d like to thank everybody for joining us. Thank you so much, Dr. Lolak. This was great.

Dr. Sam Lolak:

It was my pleasure. Thank you so much for having me.