Breaking the Silence on Bladder Cancer and Mental Health

February 27, 2025

She also discusses how BCAN’s Survivorship Task Force is working to close the gaps in psychological support. Whether you’re a patient, caregiver, or healthcare professional, this episode sheds light on the urgent need to normalize mental health discussions and create accessible resources for those navigating the complexities of bladder cancer. Don’t miss this powerful conversation—listen now!

Transcript

Voice over:

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit BCAN.org.

Rick Bangs:

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for by and about the bladder cancer community. I’m also a survivor of muscle invasive bladder cancer, the proud owner of a 2006 model year neobladder and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network, or as many call it BCAN, producers of this podcast. I’m pleased to welcome Mary Dunn back for her second podcast. Mary is a certified adult nurse practitioner, joining the University of North Carolina Urology and Medical Oncology in a multidisciplinary role in 2010, and as adjunct faculty for the UNC School of Nursing since 2011.

Mary was the first nurse practitioner invited to attend the annual BCAN Think Tank and has attended each year since 2012. She was a founding member of the North Carolina Triangle chapter of BCAN and has proudly served on its board from 2013 through 2023. In 2022, she helped establish and she co-chairs the BCAN Survivorship Task Force, which consists of providers, patients, and caregivers, and has a shared goal to identify gaps in bladder cancer survivorship, and develop resources to improve this aspect of patient care. Mary has also been a valuable organizer for the BCAN North Carolina walks to end bladder cancer. Mary, thanks for coming back for a second podcast.

Mary Dunn:

Thanks, Rick. It’s always great to connect with you and I appreciate the opportunity.

Rick Bangs:

We’re going to have some fun. This is going to be an interesting podcast, I think. So mental health challenges quite common in bladder cancer, as you know, quite common across cancer, and you are very passionate about this topic. I know that from experience. You covered at the think tank this past summer in your panel, and that panel was titled Navigating the Emotional Landscape: Addressing Mental Health Challenges in Bladder Cancer Survivorship. And you also covered the topic at a recent patient summit. So why is this so important to you?

Mary Dunn:

Well, I’ll start with the caveat that I’m not a trained mental health professional and I don’t have any formal training, and the things I’m going to touch on shouldn’t take the place of any one person’s own healthcare provider’s advice. The things I’ve become passionate about over the years tend to be areas where I see gaps and room for improvement, not only in my own personal practice, but at a larger level as well. I’ve always had an interest in this psychological aspect of cancer care and it’s become more important to me as I’ve learned more about it and grown professionally.

It’s hard to believe for me, I’ve been an oncology nurse for 20 years now, my entire career, and a nurse practitioner for 15 of those years in oncology. And the evolution of recognizing and treating psychological health conditions continues to make strides, and we also have a long way to go. I believe that partnering with patients and caregivers can really help us make more headway in this space. And when I joined the Survivorship Task Force, it became very clear after several meetings and multiple surveys with patients and caregivers that one of the most important aspects to them was psychological health. So that’s why it’s become more important to me and it’s become one of the main focuses of our group.

When we talk about psychological health, that’s really a broad umbrella term for discussing our wellbeing that encompasses how we think, feel, connect with others and navigate our day-to-day life. Our thoughts, perceptions, emotions, motivations, relationships and behaviors are shaped by our experiences and the coping skills we have developed to face challenges in life. And it’s important to note that for patients with bladder cancer, the psychological journey can vary greatly. And while some may not experience significant mental health concerns, others might, and these challenges may be temporary or long-lasting.

It’s important for folks who are listening to remember that it’s always okay to reach out to your healthcare team about your mental health. You are not alone. Some general components under the umbrella of psychological care are mental health, which sometimes we use interchangeably with psychological health, emotional health, which is the feeling side of all of this, social health, which is the relating side, how we relate to others and spiritual health, which is the being side. So Rick, as you can see, this can be quite complex.

And in talking about mental health, that’s not the same as mental illness, which refers to a diagnosable mental disorder, though both can be true. And I just want to say one last thing in this particular spot as a warning for folks who are listening, there may be difficult topics such as self-harm or suicide that are briefly discussed during this episode.

Rick Bangs:

Okay. Yeah, and I like the fact that you mentioned the fact that it can kind of ebb and flow. So if some people may have an issue, some people may not, but even the people who have them, it may vary across time. They may be fine and they may have challenges after that. So I think that’s really important.

Okay. So the other thing I really liked about what you said was that you mentioned both the patients and the caregivers, and as I think you’re aware, I’m doing some caregiving and have done some for quite some time, so there’s lots of challenges there. Can you talk about the statistics that are underlying these mental health challenges across cancer or specifically in bladder cancer?

Mary Dunn:

Sure. So after our last think tank session last summer, we sent out a survey to participants to see what mental health or emotional issue was of most concern for them. So this is not a formal research, this is Mary Dunn surveys. So just keeping that in mind. But the top was fear of recurrence. So 67% of folks chose that as their main concern, followed by sadness and depression at 17%. And then some others that folks pointed out were grief, appearance, changes in relationships, and financial worries.

But we do have some hard data from some really important organizations who are heavily involved in mental health and folks with cancer. So according to data from the American Psychological Oncology Society and the Association of Oncology Social Work, about 19% of patients with newly diagnosed cancer and 28% of those with advanced cancer access mental health services in this country. In addition, a study presented at the 2024 ASCO Annual Meeting found that only roughly 14% of recently diagnosed cancer patients reported receiving any form of therapy from a mental health professional in the past year. So these findings underscore the need for improved access and utilization of mental health services for cancer patients in general. But when we think about bladder cancer specifically, we know it is significantly associated with mental health issues including depression, anxiety, post-traumatic stress disorder, or PTSD. And there have been several studies that I’ll highlight a few statistics from looking at bladder cancer and mental health.

So there’s one study that found that the prevalence of depression, anxiety and PTSD among newly diagnosed bladder cancer was 78%, 69% and 25% respectively. These are very, very large numbers. Another study showed that mental health service use is common among bladder cancer patients, particularly during the peri-treatment and post-treatment periods with roughly 25% of patients using these services, with higher rates observed in those who had some baseline and mental health concerns. And then yet another study reported that a new diagnosis of bladder cancer is associated with an increased incidence of depression and anxiety, and women and patients undergoing more radical treatments like cystectomy and chemotherapy were more likely to develop significant depression and anxiety. It’s unclear why this is the case. So it just highlights more opportunities for research in this area.

And then one more here. It’s been shown that both pre and post-treatment mental health can significantly impact patient outcomes including survival rates and post-surgical complications. So thinking about that, that mental health can impact outcomes I think is huge and never leaving out our caregivers. Several studies have shown high rates of depression and anxiety amongst caregivers, yet relatively low percentage of those folks actually accessing mental health services. So another area that is definitely understudied, and these are just a sampling, and regardless of the studies and the statistics, the high prevalence underscores the substantial psychological burden faced by patients.

Rick Bangs:

So we still got work to do, right.

Mary Dunn:

Always.

Rick Bangs:

How do mental health challenges present themselves? And you talked about grief and sadness, but what are the most common symptoms?

Mary Dunn:

Everyone’s different, of course. So these are not applicable to all patients, but can be. Some common things that we see in the clinical setting or that loved ones and caregivers may notice at home are things such as depression, which can manifest itself as persistent sadness, loss of interest in activities, changes in appetite or weight, sleep disturbance and feelings of hopelessness or worthlessness. Anxiety can manifest as excessive worrying, restlessness, fatigue, trouble focusing and concentrating, and even some physical symptoms such as increased heart rate and a sensation of heaviness in the chest. Fatigue is common. So both physical and emotional fatigue are very common and we characterize that by, it’s a persistent sense of tiredness that is not relieved by rest. Fatigue is also the most common side effect of all cancer treatment. So it may go unrecognized as a symptom of psychological health condition because everything can make someone tired. So that’s a tricky one.

And then there’s sleep disturbances. So insomnia and other sleep-related issues are prevalent among cancer patients and caregivers, which can exacerbate anxiety and depression. I mentioned post-traumatic stress disorder. Symptoms of that can include things like intrusive thoughts, flashbacks, avoidance behaviors, and hyperarousal. Lastly, we see cognitive disturbances, which again can be attributed to a million different things, so fatigue and chemo brain and all these things. But things like difficulty concentrating, memory issues and reduced cognitive function are reported. And interestingly, not only in patients who are undergoing treatment or post-treatment, but this is something that has been heavily reported in caregivers who are under significant stress, report a lot of cognitive disturbances.

Rick Bangs:

Yeah, yeah, they definitely have a lot of stress. So why is this area so underserved? Are we under-measuring it? Are we maybe insufficiently screening it in the clinic? Are we under-treating it? What’s happening that we’re under-serving?

Mary Dunn:

All of the above. I think that acknowledging, identifying and treating psychological health has been overlooked and underserved for a really long time. And I do think we’re doing a better job. From my side of the street as a provider, there are lots of barriers that may prevent me from recognizing symptoms of mental health challenges and addressing them in a timely way. Many of us, a dinosaur at this point weren’t given adequate training in school. We may not know what resources are available at our own institutions, and sometimes we worry about saying the wrong thing. But what my patients have taught me over the years is that they’ve rather me say something than say nothing at all. I think that screening is, put this politely, inconsistent at best.

There are different types of screening tools, many that have been validated, but something I’ve run into is what do we do with that information once it’s collected, once someone is screened and perhaps found to have a high distress level, what are the steps for getting folks the support and help that they need? Especially with acute issues, the pathways aren’t always clear. And I’ve also found that oftentimes if we aren’t asking the questions, for example, how are you doing with the emotional aspect of your cancer experience, patients may be reluctant to volunteer that they’re struggling. So that can just kind of remain in the room, that so-called elephant in the room. We aren’t asking and patients aren’t telling us.

Rick Bangs:

So somehow we’ve got to get people to be more willing to be open about these issues and recognize there’s things that can be done. So what’s causing mental health challenges for patients and caregivers? I know some of the things are going to be obvious, but I suspect there’s some other things that people collectively won’t have thought about.

Mary Dunn:

So the psychological burden is influenced by various factors as you alluded to, and including the stage of disease, treatment modalities, and a whole host of socio-economic variables. Mental health challenges are almost always multifactorial. It’s almost never just one thing.

So receiving a diagnosis of cancer, hearing that dreaded word, no matter the stage, is life-changing for many people. There are individual characteristics such as age, gender, religion, our biological factors like our genetic makeup and our brain chemistry, cancer treatment, and its acute and long-term complications like pain, nausea, neuropathy, sexual dysfunction, body image concerns, financial toxicity, time away from loved ones and other socio-economic factors like education level and social support can cause challenges, uncertainty regarding prognosis. Patients tell me all the time about just sitting on the edge of their seats waiting for their test results. It’s awful.

That anticipation, thinking about death and dying and other life experiences. So thinking about what are people bringing with them to this? Have they had a friend or family member go through a cancer experience? Do they have underlying mental illness at the time of diagnosis? Is there any family history of mental illness? There are a lot of my patients who come from homes where they weren’t allowed to talk about mental health growing up or so-called negative or bad feelings were dismissed or even shunned. Caregivers report things like guilt, guilt about being the “healthy one” or guilt about getting burned out by all of the responsibilities that they now have. They also report fatigue, juggling other obligations and constant worry about their loved ones for all the reasons that you can think of and if they bring any personal history of mental illness. So believe it or not, Rick, that was a short list of causes of mental health challenges. But it just goes to showcase the complexity of all of this.

Rick Bangs:

Right. You’ve laid out the spectrum, which is really broad.

Mary Dunn:

It is.

Rick Bangs:

So what are some unique mental health challenges of bladder cancer? Or is it the collective challenges that might be unique in bladder cancer?

Mary Dunn:

Patients with bladder cancer can face the same psychological concerns as patients with other types of cancer. Like some things we’ve already touched on, depression, anxiety, fatigue, etc. There are unique factors that can exacerbate these things such as body image issues with ostomies or urinary incontinence, sexual dysfunction after any treatment, shame or stigma that unfortunately comes with urologic cancers. We’re talking about below the belt stuff and urine and things like that. Shame and stigma if they feel like they “caused” their cancer. I hear this from my patients who’ve used tobacco products. They feel a lot of shame there. And then the length of follow-up after active treatment.

One study did find that patients with bladder cancer may have an increased risk of suicide, particularly older, unmarried men with advanced disease. So this is something that we should be aware of. And as I touched on, there have been studies looking at the prevalence of PTSD in patients with bladder cancer, which sometimes we attribute to things like accidents and war and things like that. But this is something that has to be diagnosed by a trained professional, but something that oncology providers should be mindful of and to know the warning signs and symptoms.

Rick Bangs:

Okay. So let’s talk about some of the things that can be done to address these mental health challenges. So what’s in the toolkit?

Mary Dunn:

I think we have an opportunity to have a treasure trove of a toolkit, but realistically, it’s going to look different depending on where patients are receiving their care.

Some things I think are in toolkits or should be in some toolkits are communication. So communication is a big key. Empathic, effective, clear communication about diagnosis, treatment, side effects and resources, asking patients about psychological health and acknowledging that mental health is just as important as their physical health is a must. Another tool is screening. So effective, efficient screening tools with systems in place to address any acute distress. Teams, we need access to mental health professionals, multidisciplinary care with teamwork amongst the cancer team and the psychology teams. Social workers are heroes and we need more oncology, social workers in our toolkits.

Fast resources. So keeping resources written or digital resources for patients in the office or part of the electronic medical record. We need more research, Rick, [inaudible 00:20:40] research.

Rick Bangs:

Yes, we do.

Mary Dunn:

Patient-centered research about psychological challenges and screenings, interventions and prevention, and of course caregiver-centered research as well. All of this takes money and funding, and I think we need to continue better education for providers. So for non-mental health providers like myself, things like going to conferences, grand rounds, guest speakers, et cetera, and starting at the ground level with better training in psychological health in nursing and medical schools.

And I think if I had a magic wand to change society, I would. But I think we’re starting to see a shift with the younger generations being more open to talking about mental health, prioritizing it and trying to break down some long existing barriers. So really holding out some hope there.

And then accessibility, telehealth visits. Telehealth visits can be such a barrier breaker for people who don’t have easy access to mental health professionals, I think is also huge. And then breaking down some misconceptions about treatment I think is important in our toolkit here. So treatment, it’s not just all about tossing medications at people, and I think there is misconception about that. Treating psychological concerns almost always includes more than one treatment, which may include therapy, medication, and non-medical management like mindfulness, exercise and journaling, just to name a few. And lastly, empowering patients. So patients talking to your providers, recognizing the emotions that you’re feeling and naming them. So we know that naming emotions helps us cope with them more effectively. Utilizing support systems and reflecting on barriers that you may have and keeping an open mind about getting that extra layer of support from mental health professionals.

Rick Bangs:

Yeah, I’m glad you mentioned the telehealth because when I was diagnosed, as you know, I was recommended that I should see a counselor, which I did. And I had a very supportive work environment, my boss was extraordinarily supportive, but taking the time to get to and from and then go to the counseling session, that’s a big hurdle to overcome for a lot of people.

Mary Dunn:

That’s huge. Yes.

Rick Bangs:

Okay. So I want to talk a little bit about the kind of healthcare professionals that are providing this support. And I know the oncology social workers are part of the mix, but who’s playing in this space?

Mary Dunn:

Lots of people. So psychiatrists, psychiatrists are physicians who specialize in the diagnosis, treatment and prevention of mental health disorders. So psychiatrists can prescribe medications and offer therapy and other interventions to support mental health. And there are psychiatrists who have a special interest in helping people who have been through or are going through a cancer experience. There are psychologists, so they’re mental health professionals who specialize in the study of the mind and behavior. And they can also diagnose in treatment health conditions using things like therapy and behavioral interventions.

There’s a blanket term for therapists. So therapists are licensed counselors with training in various therapeutic approaches. A lot of these folks come from backgrounds in social work, which is why we need more of them because they are our heroes and they offer support through psychotherapy and counseling. There are people like me, so nurse practitioners or physician assistants who have a specialty in psychiatry. We have several here at UNC in our cancer hospital and they’re phenomenal. They can diagnose and treat mental health conditions with medications and therapy as well. So those are just some of the people. It definitely takes a multidisciplinary team to help with this aspect of patient care.

Rick Bangs:

So what would be… And you’ve already mentioned, like we talked about logistics and you’ve touched on finances. What kind of barriers would keep people from seeking out a solution?

Mary Dunn:

Yeah, I’ll try to hit some highlights here. One is having no clue what those solutions are. So just having not a clue what potential solutions are. I think unfortunately that one big barrier that I’ve seen is guilt and shame and stigma. I have had innumerable patients tell me they don’t feel like that they can be authentic, that they have to “be positive” all the time. So when they aren’t having a good day, they feel bad about it and have this unjustified guilt and shame and they feel like they should just be strong. Cost, of course, is a barrier to everything. Costs for these services depend on what services are being sought out, insurance coverage, etc. That’s a whole other rabbit hole we can go down.

Rick Bangs:

Yeah, that’s a couple of podcasts right there.

Mary Dunn:

Podcast [inaudible 00:26:06] 150, right?

Rick Bangs:

Yeah.

Mary Dunn:

Logistics, like you mentioned, it’s like one more appointment. If it can’t be coordinated on a day they’re already going to be at the cancer center or if they don’t have a ride care coordination here is key. And I think key players here are nurse navigators who can help with care coordination, and there can be some things that are hard for folks to talk about as barriers. So family, not wanting to “burden” family with this, I put burden in quotations because it’s not burdening, right? Thinking they need to stay positive and upbeat and constantly optimistic for their loved ones. Patients tell me they don’t want their loved ones to have one more thing to worry about.

And don’t get me wrong here, Rick, there’s nothing wrong with positivity and optimism as long as it’s not used in a way that may invalidate what people are going through. And rarely is that anyone’s intent, but recognizing the impact of our words is really crucial. And then lastly, generational. I’ve heard many stories from patients who confide that they grew up in a house where they didn’t talk about feelings. So seeking out mental health support makes them feel like they’re weak, like they somehow are a failure. And I think it’s important to recognize generational patterns and stigma and help patients get unstuck from things like avoidance or coping skills that just don’t serve them well.

Rick Bangs:

Yeah. So let’s suppose I know that I need to get support, or maybe I’m a caregiver or a family member and I know either I or the patient needs to get some support. How would I do that

Mary Dunn:

Ask. Which I know is scary. And if the person you ask does not know, push, they’ll find someone who knows the answer to the question. Whether that’s members of the cancer team or primary care provider. Primary care providers are very well-connected with mental health professionals in the community, so they’re also a great resource.

Rick Bangs:

Sure.

Mary Dunn:

There are support resources through BCAN. So calling BCAN is always the right thing to do, but specifically, there’s a free support line for patients with bladder cancer and their caregivers that’s staffed by oncology social workers. For anyone who wants the phone number, it’s (833) 275-4222. For urgent or crisis situations, always call 911. And there is a national crisis and suicide hotline, and the number for that is 988.

Rick Bangs:

Okay. All right. I want to go through, I suspect sadly is a common scenario. So we’ve got a patient or a caregiver and they’ve got mental health challenges, but they refuse to get any help. So what is your suggestion? Because I have a feeling you’ve seen this before.

Mary Dunn:

Just a time or two. And this can be tricky. Really, really tricky.

Rick Bangs:

Oh yeah.

Mary Dunn:

On my side of the street, we want to help people get what they need. So it can be tricky when folks are reluctant or kind of dig their heels in a little bit. It can be really hard when you know someone is struggling and they won’t or can’t accept additional layers of support to get them through. One thing I always have to remind myself is that we, whether that’s the medical professionals or caregivers, can only plant the seed. So be open, accepting, attentive and non-judgmental, offer support, resources and referrals. And if someone is not ready to accept that help, it’s really our job to meet people where they are. In these instances. I do a lot of listening and support in ways that I know how. And again, of course, if there’s any concern for an acute crisis situation, calling 988 or 911 is always the right thing to do.

Rick Bangs:

So how do you think we can overcome stigma here?

Mary Dunn:

Well, as you can tell, I love to talk. We have to keep talking. We have to give people space and permission to feel their feelings, to validate them even when we don’t understand them.

We have to make sure people feel emotionally safe with the members of their healthcare team. We need to sit down and we need to be open, and we need to not be distracted when we’re having these conversations. Acknowledging when patients tell us about difficult things, that takes a lot of courage. So acknowledging, thank you so much for sharing this with me, talking about these topics at conferences, on your podcast, on websites, on social media. I feel like the more we talk, the more we normalize. And also hopefully this is not too much of an unpopular opinion, but just toning down some of that, staying positive no matter what language, and allowing people to be authentic in their feelings and emotions. And I feel like that these steps or a combination of these steps can make a difference.

Rick Bangs:

I remember my counselor telling me to give myself permission. It’s okay not to feel great all the time during this period.

Mary Dunn:

That’s right.

Rick Bangs:

Okay. So you’re in a good position to answer the question, what are the future plans in this space, maybe at BCAN or other places?

Mary Dunn:

Yeah, so our Survivorship Task Force is currently working on materials to put on the newly revamped BCAN website, which now has a dedicated survivorship space. Thanks to the hard work of lots of folks at BCAN. This will include things like a fact sheet, so like mental health one-on-one as well as other important resources. Those are currently in the works. And at the think tank later this year, there’s going to be another breakout session dedicated to learning more about psychological health as it relates to bladder cancer. So we’re going to keep these conversations going, Rick, we’re not going anywhere.

Rick Bangs:

I didn’t think so. That’s awesome. That’s awesome. Okay. Any final thoughts?

Mary Dunn:

Always. You know me well, there’s always final thoughts. So everything is complicated, right? With the complexities of cancer care growing every day, it feels like, it’s likely we’re going to continue to see an increase in mental health concerns. And with this, we need better systems in place to educate providers, to screen patients, to get patients and caregivers the resources and support that they need, and have teams in place at every cancer center that specialize in psychological health. As a society, we need to continue to have hard conversations, to be vulnerable and to show up for people when they’re going through challenging times. Often people aren’t looking for solutions, maybe just someone to listen and practicing being comfortable with silence can be a true gift for people. That’s not easy to do, but it’s a good skill to have.

Rick Bangs:

Yeah, exactly. Exactly.

Mary Dunn:

And a question that I like is asking people, do you need me to listen? Do you want help with problem solving or both?

We need to normalize that it’s okay to have a bad day and give people permission to feel what they need to feel. And as a gentle reminder, just because someone carries it well doesn’t mean it’s not heavy. So please check on the people in your life. When folks are going through a cancer experience, at any stage of the process, they often don’t know what they need. So consider action. For example, offering to take their dog for a walk. Or for caregivers, giving them respite by driving their loved one to an appointment. Instead of asking the question, “What do you need?”

Rick Bangs:

Right. Being specific, that’s sometimes extremely helpful.

Mary Dunn:

Yes, and I think those seemingly little things can make a huge difference. Being part of the human club is really complicated, and being a person with cancer or loving someone with cancer adds on a whole pile of complexity to this. So what I’ll say in conclusion is that needing psychological support is not a weakness, it’s human.

Rick Bangs:

Exactly. Exactly. Okay. So Mary, I want to thank you for helping us understand the mental health challenges of bladder cancer and how we can address them.

Mary Dunn:

You’re very welcome. Thank you for the opportunity.

Rick Bangs:

If you’d like more information on bladder cancer, please visit the BCAN website www.bcan.org. In case people would like to get in touch with you. Mary, could you share an email or a Twitter handle?

Mary Dunn:

Absolutely. I am not on Twitter that much, but my email is [email protected].

Rick Bangs:

Excellent. Thank you.

Mary Dunn:

Of course.

Rick Bangs:

Just a reminder, if you’d more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1-888-901-2226. That’s all the time we have today. Be sure to like, comment and subscribe to this podcast so we have your feedback. Thank you for listening, and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Mary.

Mary Dunn:

You’re welcome, Rick. Thank you.

Voice over:

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network or BCAN. BCAN works to increase public awareness about bladder cancer, advance bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast and additional information about bladder cancer, please visit BCAN.org.