Webinar: Managing Uncertainty and Stress in Bladder Cancer

November 9, 2026

Description:

For many bladder cancer patients and caregivers, the emotional impact of a diagnosis can bring ongoing stress, anxiety, and uncertainty throughout the cancer journey. Finding ways to cope with these challenges is an important part of overall well-being.

Jenna Sangastiano, LPC, CSAC, from Inova Peterson Life with Cancer, shares practical strategies and tools to help individuals better manage the emotional challenges that come with bladder cancer. Drawing from her experience supporting people affected by cancer, she focuses on building resilience and developing healthy coping techniques.

In this webinar, Jenna covers:

• Ways to manage stress and anxiety related to a bladder cancer diagnosis
• Tools for coping with uncertainty during and after treatment
• Techniques that can be incorporated into daily life for ongoing support

Year: 2026

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Full Transcript of Webinar: Managing Uncertainty and Stress in Bladder Cancer

Patricia Rios:

Welcome, everyone. Thanks for joining us. I’m going to give a couple seconds for folks to enter the Zoom Room. And as you are getting settled, what I am going to do is just go over a few housekeeping items. First, I just want to remind all of you who are joining us today that you are on listen mode only. That means that for our Q&A session, which will be held at the end of Jenna’s presentation, we’ll ask you to use the Q&A button at the bottom of your screen, so if you want to submit questions or have any comments, you can use that. Also, this session is being recorded and will be available on BCAN’s website and YouTube channel sometime this month or in November, so if you need to re-watch this, it will be available to you. I also want to remind everybody that at the conclusion of this webinar, you will receive a webinar program evaluation. We really value your feedback and would love to hear what you thought of today’s presentation, and what kinds of topics you would like us to explore in the future.

Speaking of webinars, we have one more webinar scheduled next month for the remainder of the year. There’s a couple more that we’re working towards scheduling, but the one I want to put on your radar that registration is open is one around understanding systemic therapies in muscle-invasive bladder cancer. We have Dr. Jon Chatzkel from Moffitt Cancer Center in Florida who will talk about the different roles of systemic therapies, because there’s been a lot of evolution there in the past year, so it’ll be really exciting to hear that.

And with that, I think we have everyone inside the room, and so we’re going to go ahead and get started. First, I would like to thank our sponsor for today’s Patient Insight Webinar series, UroGen. And I want to welcome you on behalf of the BCAN family to our Patient Insight Webinar series. My name is Patricia Rios. I am the director of Education and Patient Navigation here at BCAN, and your host for today’s webinar on managing uncertainty and stress in bladder cancer. So, for many people affected by bladder cancer, including patients and caregivers, uncertainty can be one of the most difficult parts of the cancer journey. And questions about treatment, recurrence, test results, and what comes next can bring ongoing stress and anxiety, and learning how to manage that uncertainty and finding healthy ways to cope are important parts of overall wellbeing. So today, we are so pleased to have Jenna Sangastiano from Inova Peterson Life with Cancer to talk to us and provide some practical tips.

Let me tell you a little bit about Jenna. Jenna is a licensed professional counselor with nearly 20 years of experience. For the past six years, she has worked as behavioral health therapist in Oncology at Inova Peterson Life with Cancer, supporting individuals diagnosed with cancer as they navigate their journey from diagnosis to survivorship. Jenna also serves as a co-facilitator for the Bladder Cancer Support Group at Inova, and provides individuals and couples within family therapy. And today, as I mentioned, Jenna will share some practical strategies and tools for managing stress and uncertainty throughout the bladder cancer journey, drawing from her experience supporting people impacted by focus on building resilience, developing healthy coping strategies, and finding ways to support emotional wellbeing, even when the path ahead may feel uncertain.

So with that, I am going to hand over the screen to our wonderful guest and really a great friend of BCAN, Jenna Sangastiano. Jenna, the screen is all yours.

Jenna Sangastiano:

Thank you so much, Patricia. Appreciate it. Okay. Okay, everyone can see my slides, right?

Patricia Rios:

Yeah, perfect.

Jenna Sangastiano:

Perfect. Thank you. Thank you, Patricia, for that very warm introduction. I really appreciate it. And of course, I want to thank BCAN for inviting me to speak on this topic today, because as Patricia noted, I think it really is front of mind for many folks after they receive a bladder cancer diagnosis. And more importantly, I want to thank all of you for joining us today. As a therapist, I think it really is critical to focus on your mental and emotional health just as much as we focus on our physical health, because my goal is for folks to have optimal quality of life, and I think that includes our mental and emotional health as well.

So, a little bit about what we’re doing today. First, I want to really talk a little bit about why uncertainty can feel really intense, and why our minds and bodies respond the way they do to uncertainty. Because I think once we have a little bit of a greater understanding about our response, it can be easier to recognize when these reactions are coming, and that it isn’t necessarily something that we’re doing wrong, but really it is a normal response to a difficult situation. We’re going to talk about a few practical tools and skills that hopefully can help during times of uncertainty or stress. And really, I think one of the foundations I want to leave for folks is that these tools are really around not eliminating uncertainty, so uncertainty disappearing or not having any feelings around this is not necessarily the goal, because we have brains and they’re going to feel and we’re going to think. But really, we’re thinking about this from a reduction perspective, so it’s not necessarily elimination, but it’s reduction around the feelings that we’re having.

We’re also going to have an opportunity to practice a nice mind-body exercise together, and my hope is that that gives people a bit of a flavor or taste to understand what that can do for our bodies and our minds. And then folks can decide whether or not that’s something that they want to take with them into practice in the future. And then by the time we wrap up together today, I hope that each of you can identify maybe one or two strategies that we’ve talked about today to really create a personal coping plan for yourself. Again, it’s really about identifying a few realistic supports that hopefully can help you during difficult moments of uncertainty.

So, while many of you know this, I can’t start this presentation without really naming what type of stressors and uncertainty come up in bladder cancer. It can feel especially stressful, this diagnosis for people, because frankly, some of the stress doesn’t even start at diagnosis. For many folks, navigating just getting to the diagnosis can be really stressful. It can take a really long time with, again, misdiagnoses or a lot of uncertainty. And then once somebody does receive the diagnosis, that uncertainty and that stress continues with procedures, with pathology results, with treatment decisions, especially because many of those treatment decisions need to come very quickly, follow-up visits, cystoscopies, scans, and of course, fear of recurrence.

Bladder cancer also can affect very personal parts of our life, including things like urinary function, our sexual health, our body image, and just confidence, how we show up in the world as who we are. And on top of that, there are practical concerns and practical pressures, things like transportation, time away from work, that could be for both patients and their loved ones, insurance concerns, financial stressors, and of course, just the sheer mental load of keeping track of all of these things. And so, when people feel really overwhelmed, it’s not a weakness. It’s a valid response to what is a very difficult situation.

So, cognitive behavioral therapy, or CBT as we refer to it, is really based on the idea that our thoughts, our emotions, our physical reactions, and our behaviors all influence one another. And so, a key part of CBT is recognizing automatic thoughts, which are quick thoughts or interpretations that arise based on how we appraise a situation that’s in front of us. So, a situation may be that we’re waiting for a pathology result. Maybe we’re noticing a body sensation that is new and uncomfortable for us. We may be receiving a reminder about an upcoming scan, or we may be preparing to start treatment. So, with that sort of cancer-related uncertainty, those automatic thoughts are very understandable.

And often what is happening is that the mind is doing what the mind does, which is engaging in self-protection and self-preservation. That’s a pretty human response, and it’s part of our evolutionary safety that’s kept us here as humans. And so, the mind starts to fill in the unknown, it starts to fill in the gaps, but often, it’s doing it with unhelpful predictions. So, thoughts like, “This may mean something is wrong,” or, “I will not be able to cope if my cancer recurs,” are fairly common responses to those situations. So, the situation isn’t the only source of distress. The appraisal of that situation and the thoughts can arise really start this stress cycle.

And so, once we’re in this stress cycle, the emotions that then we feel also may intensify, so that may be increased feelings of anxiety, increased feelings of fear, sadness, irritability. And at the same time, our body’s stress response is being activated, which means we may notice things like tension. We may notice restlessness, nausea, poor sleep, racing heart, difficulty concentrating, or changes in our breathing. And so this cycle continues, and one of the ways that we often think we can get out of this cycle is sometimes through behavioral choices.

So, when we are noticing maybe a change in our body sensation, we may repeatedly search online for information to seek reassurance. Sometimes when people notice something that’s happening in their body, they may avoid appointments, because they just don’t want to think about hearing more bad news. And really, these behaviors, it’s a way for them to make sense of what’s happening and an attempt to feel safer and to have more control. But they may offer some short-term benefit, they may sort of keep some of that uncertainty at bay, but sometimes, they actually can feed into this stress cycle that keeps going.

And so, one of the things that’s really hard to acknowledge in this process is that uncertainty is part of the cancer experience. A lot of what we’re learning to do and what we’ll be talking about today is how we’re learning to coexist with the uncertainty that is part of our lives, and really give ourselves some tools that we’re not here to never feel anxious, we’re not here to eliminate all uncertainty, or to force positive thinking, but we’re really here to start to notice the cycle we’re experiencing, and to identify where we can disrupt that cycle in order to feel more supported and to help take the next best step. You’ll hear me say that phrase a lot in this talk. Really, it’s thinking about the next thing that’s in front of us. So, the goal today is to think about how we change, how we respond to our thoughts, in order to reduce our distress and support ourselves in navigating the uncertainty. One way that we really like to do that is through some mind-body tools that can help disrupt the cycle.

So, when our nervous system is activated by automatic thoughts, it can be very hard for us to think clearly, to take in any information, or to decide really what that next best step is. The body often shifts into a stress response, as I mentioned earlier, and we have a hard time processing what’s happening. So, as we’re observing these physiological changes in our body, that’s usually a good indicator to us that we may need to offer ourselves some more support.

One of the things that I like to have folks begin with in order to help the nervous system settle is through a physical reset. So again, not about making the anxiety disappear or forcing ourselves to feel calm, but about creating that space in our bodies to allow for us to think about how we’re going to respond to something intentionally versus react automatically. And that is an important distinction here, because often when we’re in that stress cycle and we can’t disrupt it, we find that we’re reactive, right? It’s more automated, whereas if we can disrupt that cycle, things feel like we can actually be intentional and thoughtful in the choices that we make.

One of the things that I invite people to do, and I invite you to do it right now, is to try some simple, low-pressure body adjustments. So one thing may be to loosen your jaw. Sometimes we don’t recognize that our jaws are clenched and that our tongues are at the roof of our mouth. So soften your jaw, make sure your tongue is at the base of your mouth. Just soften your shoulders, relax your shoulders a bit, and place your hands gently on your thighs or on the tops of your legs, and just notice the support of the chair that’s behind you or beneath you. Sometimes folks like to do this practice on the floor so you can also notice the support from the ground that you’re receiving. And if it feels comfortable, we really encourage folks to take a big gentle inhale in, but we want that exhale out to be a little bit longer, because a slow, longer exhale can actually signal to the body that safety is coming, and that can reduce some of the physical intensity that we’re feeling.

The key here, though, is that there’s no really right or wrong way to do this. Some people don’t like focusing on the breath. It may feel uncomfortable for them. Sometimes it actually is difficult due to other physical limitations, and so it’s okay to skip the breath component or the breathing component. And this particular one that I’m offering for folks is this idea of we’re going to inhale for four, so you’re taking that inhale and counting to four, and then you’re exhaling out for six. But again, if that doesn’t feel comfortable, we’re going to talk in the next slide about some neutral physical sensations that we can engage in that can, again, help with resetting that body. And the goal is here, as I said, what is the next helpful step? We’re trying to bring awareness to this present moment and think about the next thing we can do to support ourselves in that time of uncertainty.

So, when I talk a little bit about this idea of neutral physical sensations, this is where the tool for grounding can be really helpful, and grounding is a really nice tool to have when that worst-case thinking or that flooding happens in our brain. And so, we’re not aiming to argue with the fear or to, again, force the worry to go away, but we’re hopefully returning attention to the present moment. Often a lot of our worries are about what is going to happen, and again, we’re making these predictions. So really, this idea of grounding helps to bring us back to the present moment. And if we can bring ourselves back to the present moment, can we feel more anchored in our body to reconnect our brain and our body together and then identify that next manageable step?

Specifically, I like using senses to help people ground, for multiple reasons. One, it’s portable. Hopefully, you’re taking your senses with you where you go, but it can be done in an exam room, it can be done in a clinic, it can be done in the car as you are on the way to an appointment, please don’t do it while driving, naturally, but in the shower, in bed. I think this is a really easy thing for folks to access. So, identifying and naming what is happening, my mind is overwhelmed, or my mind is racing, is sort of that first step, to observe and notice what’s happening, whether through those physical sensations or those thoughts that are unhelpful. And then using our senses to orient ourselves, so five things that we can see in front of us, four things that we can touch, three things that we can hear around us, two things that we can smell, and one thing that we can taste.

The taste one sometimes gets a little hard for folks. Sometimes it may be something that’s lingering in your mouth. If you’ve had a cup of coffee, sometimes it can be grabbing for a piece of gum or mint. If there’s nothing really resonating when it comes to taste, I encourage folks to think about something they’re grateful for. And again, you can cycle through this series as many times as you need to.

The other thing that I also like is practicing this in nature. I think nature or walking outside is a really good time to figure out how you can access this tool. But really, after you’ve done this exercise, that next question I want you to ask yourself and come with that curiosity is, “What do I need right now?” That may be I need to get more information, that may be I need to actually take a rest. Maybe I need to connect with somebody I love. Maybe I need food. Have I eaten today? Maybe I need some movement in my body. Maybe I need to go back to some breath work, but really thinking about what that next step is. But grounding, again, is a nice way to get some more of that distance and bring us back into the present moment.

When uncertainty spikes for folks, I also like to help people think about sorting their stressors into three buckets, what I cannot control, what I can influence, and what I can control right now. The first bucket, what I cannot control, that may include when a result comes back, what a scan is going to show, what happened in the past, or every possible future outcome. And naming these things aloud is not necessarily about giving up or saying that you don’t care about those things, but it is about recognizing where our energy is unlikely to be useful at this moment. Oftentimes we’re putting our energy into places where we actually can’t shift the outcome, and that leaves us feeling sometimes very hopeless and helpless, which is not where we want to be.

The second bucket, which is what maybe I can influence, and I sort of look at this as influence, right? It is something that is in your control, but sometimes some of these things are efforts we can put in but may not yield an outcome in the present moment. And so, examples of that may be things like, what questions I can ask the medical team when I see them next, and getting information about how my results will be communicated to me, asking someone to come with me to an appointment, or letting my team know about a new symptom or concern.

That third bucket is what I can control right now, and often this is pretty small, pretty straightforward, and very immediate. That may be … Oop, sorry about that. That may be taking a slow breath. That may be thinking about who I can call in this moment, or can I text someone? Can I go step outside and get some sunshine on my face? Maybe I just need to put both feet on the floor, but really, thinking about what small manageable step I can take.

And so putting it all together, I may not be able to control when a result comes back, but I can write down my questions. I can ask who will call me. I can decide who I want to come with me at an appointment, and I can choose one calming practice for the waiting period. And so, this exercise helps reduce the emotional overload by moving that brain from helplessness and hopelessness towards an actionable step. And I think that is really wonderful, because it does give us a sense of control and it gives us a sense of hope that we can do something. And when, again, everything feels really big, we sometimes are looking too far down the road, and so this is also a way to bring back to the present moment. I may not be able to solve the whole situation or get all the information I need, but what is the next helpful thing I can do?

When life also feels really uncertain, routine actually becomes really important, and I want folks to think about how they can create more routine for themselves, not less routine. And so, a simple daily rhythm can actually help the nervous system feel a little less chaotic, and that it can create a sense of steadiness when other parts of life feel unpredictable. And so again, this is not about doing everything perfectly, but it is about thinking about the basics. What’s your sleep like? Do you maintain good sleep routines? Do you eat regular meals or snacks as you need to? Do you stay hydrated? And do you have some realistic movement practice that is helpful and in alignment with what your body can do?

In my work, I find that if people are noticing shifts in their mood when things have been pretty steady, maybe there’s increased anxiety or increased sadness or even low energy, I actually ask first about these foundations, these foundational questions, like, “Have you been sleeping okay? And have you been moving your body?” Because we don’t realize sometimes how that actually affects our emotional wellbeing, especially when appointments and treatment and worry have really disrupted a lot of our normal routines.

The other thing that I also wanted to just again make space for is the thoughtfulness about internet searching. More information is not always more calming. Repeated unstructured searching can actually increase our worry, especially when the information that we are receiving or reading is frightening, it’s outdated, or it’s not specific to our situation. I want for folks to consider, if you need to, setting boundaries around how and what information you find. That may be choosing a trusted source to get that information, such as BCAN. That may be writing down questions, again, for your medical team, or limiting your searches to a specific amount of time at a specific time in the day. Small stabilizing practices really do matter here, and again, this skill and thinking about this is really taking a proactive approach to managing your wellbeing and thinking about, again, uncertainty and stress from a routine perspective. It really can create a steadiness for you that helps you to manage whatever is coming your way one day or even one moment at a time.

I also encourage folks to think about one small moment of meaning each day, and I think meaning is really important to managing things like uncertainty and fear, especially in oncology and in cancer. So, that may be things like time outside, music, journaling, stretching, talking with a friend, prayer, a cup of tea, a creative activity. These moments don’t need to be large, they don’t need to take all day, they don’t even need to be productive, but the goal is really around making intentional space for something that brings you comfort, joy, or connects you with your values.

And the mind-body tools are helpful, that routine is helpful, but another tool that I always want people to think about as a tool in their toolbox to reducing isolation and to managing uncertainty, and really to help us feel connected, is our support system. Many people say they don’t want to burden anyone, and they really then try to carry the load themselves. And this is the time at any point in this process to ask for help. So today, I do want you to think about, who are those people in your support system? Who is that person who’s going to have great attention to detail and take copious notes during your medical appointments? Who is the person in your life that’s going to give you a good belly laugh? Who is that person who you can share deep, dark fears with and not have them problem-solve it for you or judge you for what you’re experiencing and sharing? Not everyone is able to provide the same level of support, and I would love for you to take a look at who’s on your team in addition to your medical providers, and how they can provide you with meaningful support.

The other thing that I think also gets challenging sometimes about asking for support is sometimes folks themselves don’t actually know what they need. They’re new to all of this or they’re still trying to figure it out, and I think their loved ones in their lives want to offer support, they want to help, but they don’t know what would be useful. And so, as you think about who’s in your network, I also want you to think about, what specific ask can I make of those people when I need them? So instead of, “I need help,” a clear request like, “Can you come to my appointment on Tuesday?” Or, “Can you pick up groceries for me after my cystoscopy?” That can be really impactful and I think everyone sort of wins there, because you’re hopefully getting what you need from your loved one, and they hopefully feel like they can support you in a really robust way. So like I said, everybody wins when we can make those specific asks.

And furthermore, when I think about support, I really also want to acknowledge that for some, bladder cancer can feel very isolating. It can feel isolating for many reasons. I know in my group, sometimes folks have mentioned that they didn’t even know bladder cancer was a diagnosis until they were diagnosed with it. So, peer support can be especially wonderful, because it really does connect folks with someone who truly understands that lived experience, and not someone who just says, “Oh, I can imagine,” but someone really who can understand because they’ve been in those shoes. And so really, peer support’s invaluable and I think they provide practical information, but I also think they provide hope. And so if you’re finding that there are people who … you want to talk more about this experience, but the people in your life don’t necessarily have the ability to understand, peer support, I think, is really integral in that space. So, encourage folks to utilize those BCAN resources to get connected to peers.

Okay. As I said, I wanted to make sure that we got an opportunity to do a mind-body practice together, so in order to get ready for our meditation today that we’re doing together, I encourage you to find a comfortable seated position, to allow your hands to rest naturally on your lap or by your sides. And when you’re ready, gently close your eyes. Take a deep, slow breath in, and as you exhale, let go of any tension, stress, or worry. Feel yourself settling in to the surface beneath you, fully supported and at ease. Begin to bring your awareness to your breath. Notice the gentle rise and fall of your chest as you breathe in and out. With each inhale, imagine drawing in a sense of calm and clarity. With each exhale, release any distractions or concerns. Let your breath guide you into a state of relaxation deeper and deeper with each cycle.

Now, imagine that you are standing at the base of a magnificent mountain. This mountain is tall and strong, its peak reaching high into the sky. It’s solid, unmovable, and deeply rooted in the earth. Take a moment to observe this mountain. Notice its size, its shape, and its presence. Feel the strength and stability it represents. As you breathe, begin to visualize yourself becoming one with this mountain. Feel your body grounding into the earth, your feet like the strong roots that anchor you to the ground. Imagine the strength of the mountain flowing up through your legs, filling your entire body with a sense of stability and power. You are steady, you are strong, just like the mountain before you.

Picture yourself as the mountain now. Your body is the base, wide and rooted deep. Your head is the peak, touching the sky, surrounded by the clear, open air. No matter what storms may come, the mountain remains still and unmoved. It stands strong through the wind, the rain, and the sun. You too can embody the same calm strength and resilience. As you breathe, feel a deep sense of groundedness. Imagine the mountain’s solid foundation beneath you, anchoring you securely. Let this feeling of rootedness spread through your entire being, bringing a sense of stability and peace. In this moment, you are as unshakable as the mountain, connected deeply to the earth below.

Now, notice the view from the peak of your mountain. The air is fresh and clear, the sky open and expansive. You can see far into the distance, beyond any worries, beyond any fears. Take a deep breath in, filling your lungs with the crisp, clean air. As you exhale, let go of any lingering doubts or anxieties. Feel a sense of freedom and openness, like the vast sky above you.

Let’s take a moment to connect with the qualities of the mountain. It is strong, steady, and enduring. It remains still through all seasons, through sun, wind, rain, and snow. As you breathe, imagine absorbing these qualities into yourself. Feel the calm and resilience of the mountain merging with your own energy. No matter what comes your way, you are grounded, stable, and strong.

Now, bring your awareness to your heart center. Imagine a warm light glowing here, like the sun shining on the peak of a mountain. Let this light grow brighter with each breath, spreading warmth and love throughout your entire body. Feel this light filling you with a deep sense of inner strength and peace. As you sit here, embodying the mountain, silently repeat these affirmations to yourself. I am strong. I am steady. I am unshakable. Let these words resonate with each breath, reinforcing your connection to the mountain’s strength and stability. Spend a few moments here, resting in the stillness of the mountain. Feel the calm and quiet that surrounds you. Know that this strength is always with you, ready to be accessed whenever you need it. You are as solid as the earth, as unshakable as the tallest peak.

And when you’re ready, begin to gently bring your awareness back to the room around you. Feel the surface beneath you, the air on your skin, and the gentle rhythm of your breath. Wiggle your fingers and toes, inviting small movements back into your body. Take one final deep breath in, and as you exhale, slowly open your eyes. Carry this sense of inner strength and calm with you into the rest of your day, knowing that like the mountain, you are resilient and grounded.

Okay? I hope everyone enjoyed that. That’s a mountain meditation, a little bit of an abridged version, but I think a really powerful message about feeling steady and feeling almost unshakable in this life. So, thank you all for participating in that. And just a note about meditation and why I think it’s really powerful. I think meditation gives us a moment to slow down. It gives us a moment to sort of focus in that present moment, and sometimes can actually help us to build some comfort with difficult feelings, this idea that I don’t have to have an answer right this moment. I can sit with a little bit of discomfort. I don’t necessarily need an immediate answer. And that can help change our relationship with the uncertainty, that we can sort of tolerate not knowing for a little bit.

I think people often don’t love the idea of meditating because I think they get concerned that their brains are going to wander, and I want to reassure you that that’s what brains do. Many of these guided meditations will make note that if your brain’s wandering, just gently bring it back to the present moment, or bring it back to the breath. And so I think I just want to, like I said, normalize that that does very much happen, and it’s okay if that happened today. And I still encourage small practices of meditation. Even five minutes a day can have some real benefit, and not all meditations I would say are created equal for a particular person. Some people like a different voice or a different style or a different format even. And if meditation is something that you’d like to sort of take with you or add in for a mind-body practice, there are several apps out there that have wonderful free guided meditation, so I encourage you to check them out.

I also wanted to take a moment to acknowledge sort of the role of uncertainty, especially with the adjustment that comes as folks transition to survivorship and surveillance in bladder cancer. I think many people are actually very surprised with how emotionally complex life after treatment can feel. I think there’s an expectation that once active treatment ends, life will immediately return to normal, but anyone who’s made that transition knows that that reality is that that transition can take time, and it doesn’t always look like what we thought it was going to look like. Often when I talk about survivorship, I talk about it as a both/and experience. So you may feel relieved to have fewer appointments or treatment-related demands, or more time to do the things that feel more a part of your identity outside of this diagnosis. But also at the same time, having less frequent contact can actually increase worry, increase uncertainty in that regard. And so, even when people are doing maybe yearly follow-ups or lab work on a routine basis, that can still bring up that fear of recurrence, or memories of the diagnosis and treatment.

Often as well, people may be ready to celebrate you being done with your treatment or encourage you to move on, but you are still adjusting physically and emotionally, and figuring out what life looks like now. You may be learning how to trust your body again. You may be managing ongoing symptoms. You may still be adapting to changes in your daily routine, or even just making sense of how cancer has affected your priorities and relationships. Some days in survivorship may feel hopeful and steady, other days may feel more uncertain, but both experiences are part of survivorship. And please know that this is common if you are feeling unsteady or uncertain. It doesn’t mean that you’re not grateful or that you’re doing survivorship incorrectly, but the goal is not to also dismiss or minimize those feelings. It’s really, again, to think about how you’re supporting yourself and responding with compassion and care to that experience.

The other thing too that I wanted to know is, in terms of managing uncertainty from the practical perspective, follow-up care plans or survivorship care plans can be really helpful to provide a little bit of structure to clarify for folks what clinicians need to be seen, what tests or surveillance looks like going forward, sometimes just about what appointments need to be scheduled or what symptoms should be reported. And as well, they give, a lot of times, healthy living and emotional support and other resources available. So, if that is something that your provider does do, some type of survivorship care plan, I would encourage you to ask for that so you have a little bit of practical knowledge to help manage some of that uncertainty.

So, as you come into the days and weeks ahead, while I want this information to … Hopefully this felt helpful and gave you a few takeaways. I don’t want it to just stay as information. I want for folks to think about how this could actually become a routine practice for you. And so, as you are heading into the week, I want folks to think about, “What is my coping plan? What am I doing to support myself proactively, and then also to respond to uncertainty as it comes up?” And so, I would love for folks to look at, to think about some of the things we did today, and to think even bigger about what are some actionable items in some of these categories that you can maybe choose to say, “Hey, I’m going to give that a try, and I’m going to try to do it on a regular basis.”

And I would actually say things like grounding and breath work and physical reset and even meditation are also helpful to do when our nervous system isn’t activated, when our nervous system is calm. Because it actually makes it a little bit more tangible for us to reach for those mind-body tools. So in the coming week, as you go ahead, I want you to ask yourself, “What is going to support me in this week for managing stress and managing uncertainty?”

I didn’t want to wrap up this presentation without folks thinking that they have to handle all of this alone. Cancer really does affect the emotional wellbeing as it affects many other parts of someone’s life, and needing additional support is not a sign of weakness. Anxiety, sadness, fear, or stress is very much understandable after a bladder cancer diagnosis. However, I do want folks to consider if they, at any point, need to reach out for more support, if those feelings are persistent, if they are intense, or if they really are beginning to interfere with daily life. That may look like difficulty sleeping or eating, trouble concentrating, withdrawing from people, missing appointments, feeling unable to manage daily responsibilities, or relying on things like substances in order to cope. Cancer-related distress is very much treatable, and we have counselors such as myself that give space to process these fears and concerns and changes and grief in a safe space.

Support groups, as I noted, can really reduce isolation by connecting people to each other, and asking on your team, what resources are available to me to provide some of that ongoing support. Sometimes psychotropic medication is also part of those tools in the toolbox, and medication may be an important part of treatment for their emotional and mental wellbeing. And again, of course, if someone is feeling hopeless, unsafe, or has any thoughts of self-harm, that absolutely should be treated as urgent, and I want to make sure folks know their resources, to go to an emergency room, call 911, or they can utilize 988 as the crisis lifeline here in the United States. But the message that I want for folks to take away is that you don’t have to wait for things to feel unbearable to ask for help. Reaching out early can really make a meaningful difference.

And of course, I want to just acknowledge all the incredible, incredible work that BCAN does to really provide support and resources for people. This is also part of managing uncertainty and managing the unknown and the stress that comes in a bladder cancer diagnosis. Whether it’s education, whether it’s the support line, whether it’s Survivor to Survivor, whether it’s webinars such as this, they really have a robust set of services and supports that I really encourage folks to continue to utilize and take advantage of. I also encourage you to talk to your local urologist or your cancer center where you’re getting treated to see if they have any resources for counseling, support groups, nurse navigation, chaplaincy, or survivorship services. Because again, I think the really most important thing is that you are living your best quality life, both emotionally and physically.

So, key takeaways for today, the emotions that you’re feeling are valid. They are a real response to a difficult and uncertain experience. Fear, sadness, anger, frustration, and worry do not mean that you are coping poorly. They are responses that happen in cancer care, and especially with the treatments, the daily changes, or the changes in our daily life and the unknowns that come with all of it. And while uncertainty is not going to disappear, there’s going to be times of waiting, there’s going to be times of unanswered questions, or worry about what comes next. But when we can’t control the outcome, we can become more supported and more skillful in how we respond to ourselves. We can notice when the stress cycle is starting. We can use our tools to ground ourselves. We can ask questions about how we’re feeling and be curious about what we’re noticing in ourselves, and we can focus on that next manageable step.

Also, acknowledging that effective coping isn’t just usually one thing. It often combines things like mind-body-based tools that help calm the stress response, practical planning that creates more structure in our lives, and emotional support from loved ones, peers, counselors, support groups, and your healthcare team. Different tools may be helpful at different times, and it’s okay to keep adjusting what works for you. And finally, as I said in the last slide, I want for folks to remember, needing help is not failure. It is wise care. Asking for support, accepting help, and speaking honestly about your experience and what you need are all really meaningful ways of caring for yourself, which is so important in this process. So, with that, thank you so much.

Patricia Rios:

Thank you, Jenna. That was a phenomenal presentation, very comprehensive, and you even included a small treat for us, a meditation session, so thank you for walking us through that. And I have to say, you have a very soothing voice, and it was very helpful as I was trying to calm all the thoughts and practice some of the strategies that you shared with us around grounding.

We have some comments from our listeners today, so one of them is sort of a comment/question, and I wanted to get your thoughts on this, from Jane, who says that some of the stress for her revolves around how much to share around whether it’s things with the family or just with coworkers, or how much to share with family members? And also, how to plan for the future, future events and the uncertainty that comes with that. Do you have any thoughts or tools to share with Jane?

Jenna Sangastiano:

Yeah, I do. I think I’ll start with the planning future events, because I think that is a common one that comes up for folks is that uncertainty of not knowing how I’m going to feel and what things are going to look like. And that’s a very real concern, because things are sometimes changing fairly rapidly for folks. And so, one of the things that I encourage folks to do is, when they are making some of those future decisions is, recognizing that they’re thinking about what’s right in front of them. It’s almost bringing mindfulness back to what we’re experiencing and thinking about, “Well, how am I feeling in the present moment?” And acknowledging that if I’m making a decision, is it in fear or uncertainty or unknown, or is it because there is a real legitimate barrier or a legitimate concern or uncertainty that we don’t know of?

I think when it comes to even things like planning and traveling, I encourage folks to think about, hey, take out maybe insurance for that trip that you wouldn’t normally have taken out, if that helps to give some practical support around uncertainty for planning for the future. But I do have this sort of, for today, does it feel like something you want to do, or does it feel like something that you can manage? And if it is, my hope is that you’ll say yes to those things, especially if there are things that bring you joy.

I think when it comes to sharing information, sometimes I want to acknowledge that folks also need to process the information themselves and really sit with and take hold of what they’re hearing, and making sense of it before they can then share that with other people. I am a big believer in boundaries, and that not everybody needs to know every aspect of what is happening. And given that, if there are coworkers who are genuinely concerned and you want to share and that feels comfortable and safe for you to do that in that environment, feel free to share with them. If you’re finding that they are asking too much, you can set another boundary and say, “Hey, you know what? I know you really care about me and I appreciate it, but don’t want to talk about that at work.”

And I think for senior in college or kids, a lot of times families want to be involved, and I think the need-to-know basis is important, especially given the age, but really, just being pretty forthcoming about what is happening and I think being intentional about the details. But I actually encourage people to write a pitch, to create a script before they’re about to share some of that more difficult information so that they can feel a little bit more confident and comfortable in what they’re going to share, especially when it comes to kids.

Patricia Rios:

Oh, my, those are very practical tips. I know we have additional comments, questions, but I do see the comment about sharing the screen or the slides again, so I’m going to put that up while we end the webinar.

Jenna Sangastiano:

Perfect.

Patricia Rios:

And hopefully folks are seeing that.

Jenna Sangastiano:

Fabulous, yeah.

Patricia Rios:

This is the one that was asked about the apps, and then this is the coping plan, so I’ll leave those there for a few seconds. I’ll go back and forth between both, but I just wanted to acknowledge some of the comments from our listeners just expressing just how beneficial this webinar was and how informative. So thank you, Jenna, and many folks looking to replay your meditation session, so we’ll definitely have to get that on our website ASAP, but you do have these apps there that you can also look into to see.

And what we’ll do is we’ll send out, and thank you, Jenna, for accepting to do this, we’ll send out the slides so you have those, and that way you don’t have to wait till the session goes live on our website, and you can start to look into and implement some of these coping plans or look into some of those meditation applications. One quick question for you before we close, Jenna. Just wanted to ask, I know we have a diverse audience here today listening to us and also who will be listening to this recording, particularly talking about our caregivers, right?

Jenna Sangastiano:

Mm-hmm.

Patricia Rios:

I’m curious to know what advice you have for them, as they’re managing their own stress while also trying to remain strong and supportive for their loved ones.

Jenna Sangastiano:

Yes, and I think a lot of what we have talked about today, even if I’m referring to patient as I’m sharing, I think this is very applicable to caregivers. I would say even sometimes more so, because I know a lot of our caregivers, people aren’t necessarily checking in with them the same way that maybe they’re checking in with patients. And so, I do think there is real value for caregivers to think about their own wellbeing, think about their own mental health and emotional health, and to realize that as their loved one may be in treatment, they are maybe handling more of the other concerns, like practical things that are absolutely causing stress, finances, insurance, sometimes people go down to a single income.

And so, I think that is really critical for caregivers, especially to take some of this information to think about, “What is part of my coping plan? How do I care for myself?” Because we got to care for the caregiver in order to care for the patient, especially knowing that caregivers are really the backbone of a lot of our healthcare. So, I think, my caregiver’s on the call as well, even if I didn’t say caregiver, please know that I am speaking to you as well, because I think this is really critical for all of us, frankly, as human beings to actually think about how we support ourselves in our mental health. But yes, my caregivers would love to have you implement this coping plan as well.

Patricia Rios:

Wonderful. Well, that’s a phenomenal way to end today’s webinar. Jenna, thank you so much for sharing your expertise and these practical strategies with us today. I think one of the most important reminders from this conversation, at least for me, is that while we may not always be able to control the uncertainty that comes with life, specifically with bladder cancer, there are tools and strategies that can help us manage how we respond to it. So, thank you for giving us these tools to have available in our toolbox.

And I also want to thank everyone who joined us today. Thank you for being here. Thank you for taking time to prioritize your emotional wellbeing. Please remember that you do not have to navigate these challenges alone, that BCAN is here to provide information, resources, and support you throughout your journey. And so thank you again, Jenna, and thank you again everyone who is here with us today. We wish you all the very best, and we hope to see you next time. Please stay tuned for our program evaluation. We’d love to hear your feedback. I know Jenna would love to hear your feedback. And keep an eye out for a copy of Jenna’s presentation, and see you next time.

Bye everyone.

Jenna Sangastiano:

Take care.