Transcript of “What Does It Mean to be a Bladder Cancer Survivor?” with Mary Dunn

November 1, 2023

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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 Banks, 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 today’s guest, Mary Dunn. Mary received her BS in nursing from the University of Virginia and her MS in nursing from Duke University. She is certified as an adult nurse practitioner. Mary joined the University of North Carolina Urology and Medical Oncology in a multidisciplinary role in 2010 and has served as adjunct faculty for the University of North Carolina School of Nursing since 2011. Mary’s work has received numerous regional and national recognitions, among them the University of North Carolina Oncology Nursing Excellence Award, the Oncology Nursing Society Excellence and Medical Oncology Award, and the American Urologic Association, AUA, Advanced Practice Provider of the Year award.

Mary was the first nurse practitioner invited to attend the annual BCAN Think Tank and has attended each year since 2012. She was one of the founding members of the North Carolina Triangle chapter of BCAN and has proudly served on it’s board since 2013. In 2022, she helped establish and co-chairs the BCAN Survivorship Task Force, which consists of providers, patients, and caregivers. The task force 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 joining our podcast.

Mary Dunn:

Thanks for having me, Rick. It’s such a pleasure to be here.

Rick Bangs:

We’re thrilled to have you, and survivorship is such a big topic. I thought it would make sense. Just start by simply defining who is a cancer survivor.

Mary Dunn:

Yes, excellent way to start. Years ago, we used to define cancer survivors as people who were cancer free for a minimum amount of time after their diagnosis and after their treatment was complete. For example, an arbitrary number of five years of being cancer free. And that definition was quite narrow and is now pretty antiquated. A more inclusive definition of a cancer survivor, and one that is widely used and has been adapted from the National Coalition for Cancer Survivorship and is supported by the National Cancer Institute, reads as such, “An individual is considered a cancer survivor from the time of diagnosis through the balance of their life. Family members, friends and caregivers are also impacted and therefore included in this definition.”

Though I think a nuance to keep in mind and remember is not everyone who has or has had a cancer experience identifies with the term survivor, but it’s a blanket identifier we use for this population, and it means different things to different people. For some, it’s having no signs of cancer after treatment. For others, being a survivor means living with, through and beyond cancer. And some people don’t like to be labeled at all and prefer to look toward a future that’s not focused on cancer. And all of these perspectives and many more that I didn’t mention are all completely valid.

Rick Bangs:

And I’ve heard people use… They’ve run the whole spectrum from, “I don’t want to be called a survivor. I want to be a thriver. I want to be something else.” To not including it. And I really like the fact that this definition includes the family members, partners and caregivers, because they are certainly impacted by the disease.

Mary Dunn:

Absolutely.

Rick Bangs:

Now that we know what a survivor is, what is survivorship?

Mary Dunn:

Well, there’s a lot of overlap between defining a survivor and survivorship. Where we start to see separation of that terminology is when we talk about survivorship specific care. When we think about people who are in the post-treatment surveillance survivorship phase and were treated with curative intent, I tend to think about their needs in three different buckets, so to speak. The first, what are the results of their diagnostics? Things like labs, scans, et cetera. Secondly, are they having any post-treatment, long-term side effects? And if so, how are those being managed? And the third is a big bucket of everything else. For example, emotional and psychological health, healthy behaviors, for example, balanced diet, exercise, not smoking, alcohol use, adequate sleep, all of these good healthy behavior type things, making sure folks have a primary care provider, making sure people are up-to-date on other age appropriate cancer screenings, and collaborating with other disciplines to ensure these needs are being adequately managed.

This group of people, those have been treated with curative intent, have been the focus of a lot of research. However, if we think about the broader and more inclusive definition of survivorship, we can also think about those who are diagnosed with advanced or metastatic disease, or have progressed to metastatic disease, where the goal of treatment is no longer cure, but to prolong life. And those survivors who are diagnosed with or progress to end-stage cancer, where there are no more cancer directed therapies and the goal is end of life care, their priorities and the focuses of their visits with their treatment team will look pretty different than those who are treated for curative intent.

Rick Bangs:

So there’s some calibration to the patient’s context, which makes complete sense to me. As we know, not all cancers are alike. What are some of the unique aspects of bladder cancer survivorship?

Mary Dunn:

We could probably dedicate an entire episode to this one question, but I’ll try and hit some highlights in thinking through the different patient populations and categories of survivorship. For those treated for curative intent in the surveillance setting, some things that we think about are for patients with non-muscle invasive bladder cancer, some survivorship needs have been identified, including fear of recurrence and also fear of progression to muscle invasive bladder cancer. The frequency of follow-up, which is often lifelong, all of those invasive cystoscopies and any side effects from intravesical therapy. For example, bladder pain, irritative urinary symptoms, and even sexual dysfunction. For patients who have muscle invasive bladder cancer, it depends on the treatment that they received, but some of their unique needs include long-term side effects from chemotherapy, radiation and or surgery. We think a lot about body image issues for those who have urostomies. For people who have urostomies, that is a 24/7 reminder of their cancer experience, you look down and there it is.

And then of course, fear of recurrence goes with every patient population. And we think about sexual dysfunction as well, which the sexual dysfunction piece for folks who have had a bladder cancer experiences is unique to this cancer. We think about it a lot with prostate, but sometimes gets a bit overlooked for our bladder cancer patient cohort. And then for those who have advanced disease, if they’ve had treatment before they progressed, lingering side effects from their initial treatment, the road of living with an incurable cancer and the burden of that, uncertainties about the future and discussing and planning for end of life care, and then really difficult decision about treatment plans. And I think it’s important to not forget about all of the subgroups of survivors, general things like caregiver concerns, financial toxicity, social barriers, like time off work and childcare, insurance coverage, distance from their cancer center and their psychological health. While these things are not unique to bladder cancer, we always have to take these things into consideration.

Rick Bangs:

Sure. And you’re absolutely right, we could do a whole podcast just on this one question, which might not be a bad idea.

Mary Dunn:

Might not be a bad idea for the future.

Rick Bangs:

No. BCAN is, from the beginning, taking a strong interest, part of the BCAN DNA, working to advance bladder cancer survivorship. Some of this work precedes the current Survivorship Task Force that you’re co-chairing, can you tell us a little about some of the historical work and the scope of some of BCAN’s interest in this topic?

Mary Dunn:

Yeah, sure. Absolutely. I have to give a lot of credit here to my colleagues across the country. I specifically think about people and experts like Heather Goltz and David Latini, Nehal Muhammad and Cheryl Lee, and certainly many others who identified that their work apps in addressing this very broad topic of survivorship in bladder cancer care. And as part of the early think tanks, a survivorship working group was developed, which included clinicians and patients who really laid the groundwork for advancing knowledge around bladder cancer survivorship. These are just a couple of examples, there are many, but through their work, several papers were written about unmet needs in bladder cancer survivorship populations, and also developing survivorship care plans. In addition, this group with BCAN support have written patient-centered educational materials and various tip sheets that are available on BCAN’s website. A lot of groundwork has already been done by a fantastic team of experts across the country.

Rick Bangs:

I want to go back to survivorship care plans, and if you could just give a quick overview of what that would be because it’s a really important topic.

Mary Dunn:

Absolutely. A survivorship care plan is a document that we typically give to patients once they have completed their definitive therapy. And what it does, it outlines who their treatment team members are, so who their providers are, what treatment they got, so whether that’s intravesical therapy or for patients with muscle invasive bladder cancer if they got chemotherapy surgery and or radiation. And then it outlines what is the follow-up schedule so that patients have an idea of what to expect in the coming years. And along with that, we like to include information about healthy living behaviors, smoking cessation, potential long-term and late side effects from cancer directed therapy, and then other resources for people to have.

A lot of information about BCAN goes out on the one that I give to patients. And importantly, this not only goes to the patient, but it’s a really helpful tool for us as the cancer team to send to primary care providers so that they have a comprehensive idea and record of what their patient’s cancer follow-up and surveillance is going to look like in the coming years, so we can make sure everyone’s on the same page about what that’s going to look like.

Rick Bangs:

These are really important documents, particularly if you’re going to a major city or what might be called an academic center, and then going back into the community. It’s important regardless, but it would be particularly important there.

Mary Dunn:

Absolutely.

Rick Bangs:

All right, excellent. All right, so now let’s talk about the BCAN Survivorship Task Force. Why was that task force formed?

Mary Dunn:

In 2019, which seems like eons ago with this structure, for heaven’s sakes, but Dr. Deborah Mayer, who’s one of my mentors and friends, was the keynote speaker at the Think Tank. Deb is an oncology nursing legend, to put it mildly. And she served in many prominent roles, including interim director of the Office of Cancer Survivorship with the NCI’s Division of Cancer Control and Population Sciences. In my eyes, this was a big moment for BCAN and for the attendees, not only was our keynote speaker a nursing professional, but she was speaking on survivorship, which is not a topic that had been on the big stage before.

So this really inspired me to think about how we could keep that momentum going. And then, as we all know, after 2019, we had a couple of years where momentum on a lot of things stopped, because of the pandemic, but the Survivorship Task Force was officially formed following the 2022 Think tank breakout session, which we’ll touch on more later. Krisztina Emodi, who is a nurse practitioner at UCSF, co-chairs this with me, along with Stephanie Chisholm from BCAN, recognized the opportunity to piggyback off the important work that the working group had already done with the focus of gathering data from patients and providers to help us focus on future survivorship related initiatives.

Rick Bangs:

Now, you’ve mentioned a couple names. Tell us who’s on the task force and what disciplines do they represent?

Mary Dunn:

We have a variety of participants on the task force. Some folks are able to participate more than others due to scheduling constraints and meeting life on life’s terms. But we have advanced practice providers, nurse practitioners and physician assistants who were either working in urology or medical oncology and some of whom are also researchers themselves nurses. We have nurses represented from oncology and WOCN, so wound, ostomy and continence nurses. And we have patients, we have patients who have had non-muscle invasive bladder cancer or muscle invasive bladder cancer. And we have some caregivers as well. Some of our physician colleagues join us during the live breakout sessions and give feedback if they are able to make the quarterly calls that we have as a task force group.

Rick Bangs:

And tell me, why is this task force important to you? Because I know it is.

Mary Dunn:

It is. Lots of passion here. It’s important to me because I truly believe that with a multidisciplinary approach to addressing the needs of patients who have or have had a bladder cancer experience, that we can identify gaps and important needs, and brainstorm together and prioritize projects that will ultimately directly benefit patients, which is what it’s all about. And the end result of all of this will hopefully be more comprehensive survivorship care. And you’re right that I’m a bit passionate about it.

Rick Bangs:

Well, that’s why you’re here. Talk a little bit about some of the task force’s accomplishments.

Mary Dunn:

We’re still in our infancy, I think, but the task force has worked over the course of two think tanks to build on the existing survivorship foundation. One of our first accomplishments was getting people interested in the work. Survivorship, historically, has not really been a sexy topic, for lack of a better way of putting it, but over the years, we, from a provider side of the street, have really started paying more attention to this part of care. We had a really nice turnout for our 2022 breakout session, and that garnered robust discussion and momentum to continue the work. We’ve ran out of time, as we normally do during these breakout sessions.

And since then we’ve put together a really solid group of people who are vested and interested in this work. We’ve disseminated surveys in order to narrow our focus for future projects and meet regularly to continue to refine our objectives so we can have more things listed in the accomplishments box, so to speak.

Rick Bangs:

A lot of maturing of your group is happening, that’s very clear from your response.

Mary Dunn:

It’s really exciting.

Rick Bangs:

I’m excited for us.

Mary Dunn:

Yes, thanks.

Rick Bangs:

Tell us some of the ideas that were generated during the breakouts.

Mary Dunn:

Prior to the 2022 session, we disseminated a survey to help identify different groups to help us understand what the most important survivorship issues were to them and help shape the future of survivorship focused research. This particular survey went out to everyone who registered for the think tank, and we got nearly a hundred responses. The top three survivorship needs that were identified from this survey were uncertainty related to recurrence, post-treatment side effects, and emotional and mental health. And the top three ways to address these needs were identified as having dedicated survivorship clinics, having more support groups, and also survivorship care plans. And a lot of ideas came out of this session, such as evaluation of support groups on decreasing that worry and uncertainty, better pre-treatment education about side effect expectations, nurse-led post-treatment follow-up interventions, bladder cancer specific post-treatment surveillance clinics, and incorporating our mental health colleagues into care of our patients with bladder cancer.

And we met several times in between the 2022 and 2023 Think Tank to start to refine our goals and ideas for the think tank breakout session for ’23. Prior to the 2023 Think Tank breakout session, we wrote two surveys, and sent one out to providers and one out to patients. And with these surveys, we aim to get an idea of providers current practices around survivorship care and patients’ experiences with survivorship care. And we learned that providers are interested in bladder cancer survivorship clinics, they’ve identified a lot of barriers to making that happen, and also they recognize that advanced practice providers can play, and currently do play, a key role in survivorship care. Some interesting things came out of the patient side of the survey, where a large portion of patients didn’t know about resources that were available to them at the cancer center where they received their treatment.

They identified telehealth as a really important part of care, and most people weren’t sure about survivorship clinics at their cancer centers, if there was a dedicated clinic for that part of their care. Some ideas that came out of this most recent think tank were vetting information that already exists, finding ways to disseminate our surveys to underrepresented populations to make sure we’re reaching other people, other than folks who are connected to BCAN and connected to academic medical centers, and creating a dedicated space on BCAN’s website for survivorship care and partnering with academic and community cancer centers. Lots of big things, and we have been able to narrow our focus down some after the think tank.

Rick Bangs:

Excellent. What would some of the current active initiatives be? Because I loved, loved, loved, loved what you just walked us through.

Mary Dunn:

We have several action items we are working on. We are going to be holding an open discussion at the upcoming BCAN Patient Summit in Nashville to get more input from survivors who may not have had a chance to fill out any of our previous surveys. We’re hoping to reach a broader audience to get more data. We’re looking at survivorship care plans. There’s several templates that already exist, there are ones that experts around the country in bladder cancer have worked on and have created, and we certainly don’t want to reinvent or recreate the wheel. We’re just working on reviewing what already exists to see if it needs any updates or revisions, because we’d like to have this document available to the broader bladder cancer community to use as a template, for example for something providers can use in their practice. And it could also be a resource for patients as well.

They could take it off the BCAN website and take it to their cancer team and say, “Is this something that you all could offer me, or fill out for me, or incorporate into the care here?” Also, one of our active initiatives is we’re working to define bladder cancer survivorship. We have definitions for general survivorship, but not specifically really for bladder cancer. We want to think about incorporating language that is specific. We’re also creating survivorship guidelines and standards. We’re thinking about our vision here as a one to two page document for providers that goes beyond the general things like scans, labs, and timeframe for visits, but to also include health promotion, disease prevention, cancer screening, long-term side effects, management and emotional and mental health screening. And then also considering making tip sheets that don’t already exist. Lots of things. I have to calm myself down and realize that… Very big visions here, but knowing that there’s so many wonderful people who are interested and dedicated to this makes these things seem very, very doable.

Rick Bangs:

You’ve got the right list. That’s the good news. And the challenge is, as you point out, moving forward, getting initiative around a very broad spectrum of a wonderful activity. We’re the kids in the candy store, aren’t we?

Mary Dunn:

It’s very true.

Rick Bangs:

How do you envision the task force’s work and other work in bladder cancer being leveraged?

Mary Dunn:

Our hope is that this work will be leveraged in several ways. For patients, to really highlight this part of their care, to address their needs, to empower them to talk to their providers and advocate for their needs, and provide more access to materials. And on the provider side, to really highlight gaps, to offer provider resources and opportunities for those of us who work with folks who have had bladder cancer, or have bladder cancer, for collaboration and research. Those are really ways that we’re hoping that this work can be leveraged in the future.

Rick Bangs:

Excellent. What about outreach to clinicians? How does that happen and how difficult is it to move from what’s sometimes referred to as the standard of care? Once that standard of care has been recalibrated with new evidence, so there’s new clinical trial and now we know something and it’s changed that standard of care, how do we incorporate that into the pattern of practice that we might see as patients, what we’re actually experiencing or being offered as patients?

Mary Dunn:

We’re really going to lean heavily on BCAN’s extensive network to help get the word out about our projects, not only to our healthcare professional colleagues, but also to patients as well, because change can be hard for all of us. But this is healthcare, we grow with the times and what our patients need. When there are data, it makes it more attractive to clinicians. When barriers are identified with possible solutions, that also makes it more attractive. We know that realistically, we aren’t a large group like things like the NCCN, we’re a group of volunteers, experts in what we do who just want to make a dent and one day a big difference in the way bladder cancer survivorship care is delivered. We know we can’t change practice for every person at every institution, that’s an impossible task for many reasons, and it’s not really the goal. The goal is to develop and make resources available and continue ongoing collaboration and dialogue as we’ve learned more through data gathering.

Rick Bangs:

I have no doubt you’re going to be having an impact here. This is terrific.

Mary Dunn:

Thanks, Rick.

Rick Bangs:

I hear some rumors, and you’ve confirmed about a BCAN survivorship webpage. Can you give us any insight on that? What’s the scoop?

Mary Dunn:

Yes, I’m so excited about this. One of our main active initiatives is to create a space on the BCAN website that’s dedicated solely to survivorship. Our vision here is that we will house resources for patients and providers. We currently have a group of patient advocates who are gleaning the website for existing resources that we could potentially transfer into a dedicated survivorship space. And then once we’ve compiled those, we’ll be able to hone in on what we need to create and where the gaps are. And it’s really going to be great to have this space on the website. We’ve already thought about some ways once this is complete, to make sure that people know about it as well. We’re really excited about that part.

Rick Bangs:

Excellent, excellent. Keep us posted because I think that’s going to be-

Mary Dunn:

I will.

Rick Bangs:

All right. Excellent. All right. Any final thoughts?

Mary Dunn:

I have all the thoughts, Rick, constantly, but I think one of the challenges I’ve had to navigate when embarking in this task force is that this is definitely a marathon and not a sprint. I’ve talked about a lot of different ideas and initiatives and plans for things, and we have short-term and long-term goals, and my partners on the task force do a really wonderful job of keeping me grounded. So I’d just like to give a shout-out to those folks whose job it is to make sure that I keep my eye on the prize.

And everyone, the patients, clinicians, and BCAN staff bring helpful and unique perspectives to this work. Progress and change takes time, but I’m confident that we will be able to make a difference. Because in 2022, there were nearly 800,000 bladder cancer survivors living in the United States, and each one of them deserves to have expert survivorship focused care, and we hope to make a difference in this space. I could not be more thankful for the opportunity for me to highlight some of the things that we’re excited about and also many thanks to everyone who has contributed to work in this space in the past and currently. I’m very grateful.

Rick Bangs:

And we are grateful for you. So thank you, Mary. I want to thank you particularly for giving us this wonderful understanding of survivorship, particularly the bladder cancer survivorship piece, and the work that your BCAN survivorship task force and BCAN itself are doing to advance this very important cause. If you would like more information on bladder cancer, please visit the BCAN website, www.bcan.org. And watch the BCAN website for a new survivorship page coming soon. 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:

Thank you, Rick.

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, advanced 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.