Advancing bladder cancer care: The importance of integrating mental health support

In this interview, Mary W. Dunn, MSN, NP-C, OCN, RN, highlights the importance of integrating mental health support into routine care for patients with bladder cancer. This was discussed during a session at the 2024 Bladder Cancer Advocacy Network (BCAN) Think Tank titled, “Navigating the Emotional Landscape: Addressing Mental Health Challenges in Bladder Cancer Survivorship.” Dunn is a urologic nurse practitioner at the University of North Carolina in Chapel Hill.

This transcription has been edited for clarity.

Mary W. Dunn, MSN, NP-C, OCN, RN

Could you highlight some of the key takeaways from your session at this year’s BCAN Think Tank?

I was joined by my co-chair, Krisztina Emodi, FNP, MPH, CNS, who is a nurse practitioner at the University of California, San Francisco, as well as by Dr. Nihal Mohamed and Dr. Deane Wolcott. We had this wonderful, robust discussion about the often overlooked mental health challenges in patients with bladder cancer. We found [that] some [of the] key takeaways actually came from different parts of the audience. For example, for patients and caregivers, some folks noted that they were never asked about their emotional or mental health needs. They had no idea how to bring it up with their cancer team, or they weren't sure of resources that were available for them to address it. They also expressed some fear about bringing up their fears due to perceived stigma around mental health.

From the health care provider side of the audience, some key takeaways were barriers. We're constantly talking about barriers to care in all aspects that we do, but in particular for mental health [these include] lack of time during visits to bring up this important topic and lack of training to address mental health needs, so not feeling well equipped or properly trained to even ask questions about mental health. Then on the back end of that, [there are some challenges with] asking questions and then not knowing what to do with the information that's given, not having access to resources at their own institutions, or, if there are resources at their institutions, not knowing the right pathway to get patients what they need and to the right people. So, those were the were some big takeaways from our session.

What are some of the common emotional and psychological challenges faced by bladder cancer survivors?

I think that you and I could probably talk about this for an hour. In fact, I had a meeting earlier that talked about this for an hour, but there are some common themes. [For starters], there are some physical aspects that play a role in the mental aspects. For example, include living with long-term side effects from treatment, such as intravesical therapy, surgery, chemotherapy, immunotherapy, and pain management, whether that's post-surgical or due to pain from their actual cancer. Changes in body image are also a physical change that can play a huge part in people's mental well-being. Sexual dysfunction [is another] as well.

There are also some emotional components, such as uncertainty and fear of recurrence. We've talked a lot about grief. Grief, in and of itself, is quite complicated. Folks talk about tangible things that they grieve, like the loss of their bladder or the loss of their hair or loss of urinary control after they get medicine into their bladder, for example. Then [there are] these intangible things that people grieve, like for a future that wasn't what they thought it was going to be. So, grief is a very complex one.

Then other [challenges include things] like changes in relationships, whether that's relationships with their partners, their family, or their co-workers. There can be trauma associated with all of this, which is another very complicated and complex topic and can encompass lots of feelings like sadness, depression, or anxiety. We know that everyone experiences cancer and cancer treatment in their own unique way. So, of course, not all of these things apply to any 1 person. We know that patients with bladder cancer at any stage have unique emotional and psychological needs due to the nature of their treatment, [such as] feeling isolated or not knowing anyone else who has bladder cancer, amongst others. So, it’s all pretty complicated.

How can urologists and APPs integrate mental health support into their routine care of bladder cancer survivors?

We know that addressing mental health concerns is an important but often overlooked part of cancer care, not just in bladder cancer, but in cancer care in general. There is no one to blame for this; no one's at fault. With all the complexities and barriers that are tied to cancer care, it really is nearly impossible to address every single need at every single visit. However, I think we're moving toward a shift in incorporating mental health assessment kind of as a vital sign, like we did with pain years ago. Just like how now we ask everyone about their pain number, I think we're seeing a shift in incorporating talking to folks about their emotional well-being into regular standard of care. That's because there's a lot more research in this arena, but also because patients have become more vocal about it too.

So, how can we as providers do a better job? I think how that looks will vary widely depending on each individual institution and practice. Do we use existing screening tools? There are several out there. If we're using those screening tools, when do those get done? Who gets the results? What do we do with the results? All of [those are] the major challenges to this part of patient care.

What I hear from patients of my own and also folks who are involved in a survivorship task force with me is that they want their cancer providers to ask them how they're doing emotionally, whether that's the urologist, the APP, the medical oncology team, whomever, even if that cancer provider isn't the one who's an expert in that domain. When we ask patients the question, it makes them feel heard, and it can lead down a path to getting them additional support from a multidisciplinary team such as social workers, therapists, psychiatrists, and psychologists. I do think it's important for all of us to have a basic understanding of how to help people manage mental health concerns, even if that's simply listening and being able to identify a pathway in our clinics to connecting people with mental health providers.

I also think there should be clear pathways in place if patients come in for a visit and are in significant distress, so that those of us who aren't psych experts can get patients acute help if needed. I don't think that that necessarily has to fall on the urologist or the APP. I think that aspect––creating that pathway––should be multidisciplinary, including clinic leadership and nursing leadership.

Also, I feel that it is important to recognize what we don't know. I tell my patients all the time, “I will be your expert in managing your cancer, but I'm not an expert in mental health.” But sometimes patients are reluctant to add someone else to their team; they're already seeing a lot of folks. But I find that they tend to be more accepting when I offer reassurance that while I am their cancer care expert, our partners in our psychiatry department are the experts in managing their mental health, and we'll work together to help coordinate all of this. It makes them feel like it's not just 1 more person they have to see, or that they're being abandoned by their cancer team just to have 1 other person help them. The words that we use as their cancer team matter. I think simply acknowledging what their concerns are, listening, and having pathways in place can make a huge difference. I know this all sounds like it could be very easily done overnight, but there are a lot of barriers. However, I really think we're getting where we need to be in making this more of a priority for folks.

In your BCAN session, you brought up this idea of "scanxiety," which is a term used to describe the anxiety related to diagnostic scans and screenings. How can urology professionals better support patients in managing this specific type of anxiety?

This is a very specific type of anxiety. I think that one of the main things that we can do is acknowledge it and warn people about it, for lack of a better way of putting it. It's normal for people to have some worry leading up to these things, specifically scans or cystoscopy or things like that. Patients have described that when there are gaps in between their visits and gaps in between scans, they have increased worry. We would want to know if people were worrying all the time, though. So, [if they're] thinking about that next scan 3 months from when that scan is coming up, or ruminating about it every single day, such that it's interfering with their ability to enjoy their day to day life, that [is what] we would absolutely want to know about.

A lot of times, what I hear about scanxiety is that they've been okay, and then a few days before their scan and their visit comes up, it starts in their head, [thinking] "oh, gosh, what if my scan is bad? What if I get bad news? What if my cancer is back?" So, as their urology providers, giving folks basic coping skills for how to plan ahead for those pre-scan days or pre-cystoscopy days can be a useful tool. We know that focusing on breathing and things like journaling and gratitude practice can help with mindfulness, which can, in turn, help with some of those anxious feelings that people experience.

Are there any recent innovations or emerging practices in survivorship care that show promise in enhancing mental health support for bladder cancer survivors?

I think the biggest promising thing is that we're having discussions about this. I know there's a lot of folks working behind the scenes on stuff that I am probably not aware of, but what I am intimately familiar with is the work that the Bladder Cancer Advocacy Network is doing to bring survivorship issues front and center. That includes mental health and emotional well-being. There is a survivorship task force that was formed a couple years ago after another breakout session at the 2022 Think Tank. I'm honored to be a part of that group, and we meet frequently to talk about specific survivorship needs. [We're] currently working on developing some resources for mental health and the emotional well-being aspect of cancer care for patients with a bladder cancer diagnosis. I think the fact that we're having these conversations, that they are being talked about at national meetings, and that we are bringing the patient voice into this is hugely important.

There are institutions who are leading the way for showing us how to effectively and efficiently integrate distress screening into clinic visits, so that we have the proper tools to use and understand who is going to assess that information and what to do with it. Having those pathways in place that we can adopt from other institutions will only benefit our patients. We're recognizing mental health is as equally as important as physical health. Providing documents to patients like survivorship care plans, which have a basic outline of what their treatment history was, their diagnosis, what their follow-up care plan should look like, and also resources for emotional and mental health [is helpful]. We're taking a lot of steps in the right direction so that we can continue to improve on this crucial aspect of patient care.

Is there anything else that you’d like to add?

There are 2 unique groups of people that sometimes get overlooked when we're thinking about the emotional and psychological aspect of patient care, and 1 group is caregivers. They have their own unique needs. I know sometimes it can be tricky from our side of the street as the professionals, since that person's not our patient, but they're such an integral part of our patients’ well-being. How do we make sure they're okay, too? I think having resources at institutions that are specifically tailored for the unique needs of caregivers is critical.

The other group of people who I think sometimes often get overlooked are patients who are living with advanced or metastatic disease. Historically, when we talk about cancer survivorship, we talk about patients who are being treated with the intent for cure, and not talking about people who are living with metastatic disease, which is oftentimes incurable in nature. These people are living longer because we have more medications to offer them for treatment, but we haven't often included their voice in what it means to be a survivor. It's important to point out that living with cancer is still surviving, and oftentimes thriving as well. Being mindful of the unique needs of caregivers and also patients living with advanced disease is something that we should we should focus on as well.