How to Be a Proactive Patient

April 7, 2022

With Dr. Stephen Riggs and Mary Dunn, NP

You can read the entire How to Be a Proactive Patient webinar transcript at the bottom of this page.

Year: 2022

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Part 1: How to Be A Proactive Patient with Your Healthcare Provider, From a Urologist’s Point of View

Video (20 min) | Transcript (PDF)

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Part 2: How to Be A Proactive Patient Outside of the Doctor’s Office, From a Nurse Practitioner’s Point of View

Video (25 min) | Transcript (PDF)

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Part 3: Question and Answer

Video (17 min) | Transcript (PDF)

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Full Transcript

Stephanie Chisolm:

Today we have wonderful presenters for you, and I’m very excited about this program. But I wanted to talk a little bit about the definition of proactive. Proactive means acting in anticipation of future problems, needs, or changes. And when we talk about a proactive patient, we’re saying that once a patient has an idea of the big problems going on in their bodies, the thinking goes that they can be more proactive about their health. They can help cut healthcare costs and foster better relationships with their doctors. And we know for a fact that this is challenging and especially important in bladder cancer.

So tonight, BCAN is very delighted to welcome urologist Dr. Steven Riggs and nurse practitioner Mary Dunn for today’s program. They both joined us from North Carolina.

Stephanie Chisolm:

So Dr. Riggs, it’s a pleasure to have you here. And Mary, it’s a pleasure to have you as well. So Dr. Riggs, if you would like to share your screen and put the slides up, you are welcome to do that and I will stop the share. And we just need you to take your mute off when you get ready to go.

Stephen Riggs:

Well, thank you so much. I appreciate the opportunity to work with BCAN. It’s always a treat. I know Mary and I did this a couple of years ago, and it’s a real treat to work with her not only on this but in North Carolina. I think I’ve personally evolved a little bit in how to think about how to be a proactive patient, and I appreciate the introduction. We’re going to just talk about some tips on how to accomplish this. A lot of this is just around engagement, questions to ask, and some of the key topics, how to prepare for your meeting.

How can you think about improving your chances to get the best care? What is the concept of a second opinion? What questions should you ask about the procedures and treatment options? Where to educate yourself, and who and what to bring with you. So this is from my perspective as a urologist and urologic oncologist. And then I think, in a well-thought-out way, Mary will give you a different perspective from her end and the way she looks at it. And I think the balance of those two will hopefully give you some insight.

I always tell people, we talk about informed consent. And I think, in medicine, that’s a little bit of a misnomer because there’s always what I call information asymmetry. It is impossible for you or a patient or really anybody to walk into a doctor’s office and understand everything that’s going on. And you add in the anxiety around a cancer diagnosis and I believe that becomes amplified. And I think you want to be very cognizant as a patient in the moment to understand and be thoughtful about the emotions you’re feeling, and really try to center yourself to start asking some thoughtful questions. And those questions do not have to be perfect. What they accomplish though is they start to engage the physician. And they do that to start to create a connection, because I believe it’s that space of that connection that starts to help get a cadence in the conversation to allow you to start exploring what is important to you. And what I have typically found is what is important to one person is not necessarily important to the next.

Stephen Riggs:

So you need to know what that is. That does not come from a textbook. That comes from knowing who you are. And you want to get into a space of comfort. And believe it or not, I will tell you that sometimes some physicians are good at interacting with patients and some, that’s not necessarily what they’re great at. So you want to sometimes lead up. You want to help your physician get comfortable with you. And you want to be a little bit thoughtful about that. So that is being prepared and being engaged. I have that on the slide. And I think if you can go to the BCAN website or really the NCCN, but the BCAN really is a spectacular website to just start familiarizing yourself with some of the key terms. Because what we tend to do as providers is talk in a language that is not digestible. We’ve got to catch ourselves. And in the moment of the conversation, you’ve got to help us understand what you do not understand. All right?

So if you ask the questions, you will help us help you. And I think this is the other big thing that people miss or the one thing. You are not going to learn everything about your disease in one visit, right? There is time pressure on everybody. There’s pressure on the physician. You want to just understand that. There’s some anxiety on your side. There’s a lot of things going on at play. And so you want to be a little thoughtful about what you can get out of that visit in that particular time but not make it so broad that you get nothing out of it. And I think that’s a really important thought to have in. What am I trying to get out of the visit today? That could be, hey, what’s the staging of my cancer? I think that’s always important because when you think about it, we stage cancers.

The art of medicine, the art of cancer is do I get the stage right? Do I understand the T, the N, the M? Is that a stage I, is it a stage II, a stage III? A lot of times when we know that, it’s very clear what your options are. But a lot of times, we have to invest a lot of energy and a lot of thought about what’s the staging, why it might have that staging right or not. So you want to think what that means because once you understand the staging, you’ll be able to put that in a bucket and start educating yourself around that.

Stephen Riggs:

And so the other things I just wrote here, low-grade versus high-grade. And I put this in, I’m going to talk about this a little bit later. What if I choose nothing? And I think that depends on the lens with which you look at your disease and where you are in life. And again, that’s a personal characteristic, a personal question like, “Hey, do I have to do anything? What if I do nothing? Are there simpler, easier, safer, less-costly options?” And so really, again, just really using the questions to get information and then start to define what’s important to you. Take notes. I think that’s big. Again, in the dynamic like, hey, I can’t write down everything. I personally will draw a lot, write on a grease board for patients in front of them and then let them digest that. But at the same time, you’re just jotting yourself some notes.

And if you have a few things organized in preparation for the visit, then you can note underneath that or at least use the words and get clarity around the words to then go back and research on the topic, right? Because what I’m going to preach to you is this dynamic of prepare, listen, and then revisit. Because it’s coming at you fast and you need to be respectful of that.

Try to bring someone with the visits. Probably if you said, “Give me one thing to do,” bring someone else. They’re hearing things differently than you are. They’re not emotionally as invested as you are. And they can often help you translate later. Some physicians don’t mind you taping the visit. A lot of patients ask me if they can tape the visit. I think it’s actually a great idea, so you can listen to it again. And so I would suggest that’s a good idea to think about if you just are so overwhelmed.

Stephen Riggs:

What about your options? Well, listen, it quickly jumps to, again, you start out staging, you start out, hey, do you need to do anything else to determine the right stage? Once we understand stage, then we’ll really talk about treatment options with cystectomies, the dominant life-changing event that we talk about in bladder cancer, usually associated in generic terms with what we call muscle-invasive disease. And so when you hear that, you want to start thinking, okay, this appears to be an involved surgery. Is this something that this practice or this individual performs a lot? Because again, it’s not just the surgeon per se but just the team around them, are they used to the surgery? And you’ll get a little bit a sense of is this somewhere that understands what they’re doing, that would provide me a good opportunity to achieve the best possible outcome? Asking what are your outcomes, I find that patients are a little sheepish about this. And again, I think physicians, we will discuss what sometimes the reported data is. I think it’s very important to understand what the individual surgeon or surgeons in that group… Do they track their outcomes? And if so, how do they compare to national standards?

Again, you are engaging. I don’t know so much you’re always looking for a perfect answer. I don’t think there is a perfect answer. You’re just trying to be an educated and engaged participant. You’ll hear about laparoscopic or open surgical approaches. I think if that’s of interest to you, if you’re thinking one’s better or not, you can look for the surgeon to compare and contrast those. And what are the differences? Why would one or the other be favored?

Stephen Riggs:

And then really, again, we talk about personalized medicine all the time. And we tailor a lot of treatments, a lot of options, right? There’s often never one perfect answer. There may be a book answer, but there’s often not one perfect answer. And that may vacillate between who is sitting in front of us. So why would one be favored over the other? And then really, in particular, why would one be favored for you over the other? I think quality of life is often under-discussed and sometimes over-represented in terms of what we can and cannot do. And so you want to be thoughtful. Listen, cystectomy has a fair number of quality-of-life concerns. And so you want to be thoughtful. What am I giving up? Life’s a trade-off, so is treatment. And you want to be thoughtful of where does that balance sit for you as an individual and how you align and your views on what’s important and what’s not.

And then really within that, there are other treatment options. Your doctor should be talking to you about bladder-sparing options. They are very mainstream now. That doesn’t mean they’re right for you. They have unique pros and cons. Cystectomy has unique pros and cons. But there’s a litany of opportunities of things. As I tell people, that doesn’t always mean what I would choose, but that doesn’t mean that that’s what you won’t choose. And I think getting the information about the pluses and minuses to allow you to choose the option that’s best for you and understand what those risks are.

Other questions to consider. This really gets down to experience. When you’re talking about bladder cancer treatment, really cystectomy, I don’t think it’s any secret, and this is not unique to medicine; you do more, you usually have better outcomes. Right? You just get better at something. That is whether you sew, whether you play sports. It’s really not unique. It’s just experience. And getting an understanding of, is this something you do often or not? Do you track your outcomes? Again, just trying to get a sense of, hey, is the person in front of me or the physician or the provider really looking to always constantly improve? That’s really what you’re asking for. What are their complication rates?

Stephen Riggs:

Cystectomy comes with a lot of risk and a lot of complications. That doesn’t mean they’re not manageable. I mean, no one’s doing cystectomies without zero risk. But do you know what those are? Do they compare favorably to national standards? And just engaging your provider around that. I think you always want to ask about clinical trials. That speaks a little bit to the comprehensiveness of the setting you’re in. Most folks who are dealing with bladder cancer a lot are often also dealing and working in the space of clinical trials.

Stephen Riggs:

And so that’s often an opportunity or an option that then a lot of patients may want to know about or are interested in. And so discussing that and seeing, if something’s of interest to you, if they have it there. Or, hey, how do I look for clinical trials elsewhere? BCAN has a nice resource to search for this. And a lot of providers, including myself, will often help patients look for things that may be of interest to them elsewhere if I don’t have something that suits their needs or desires. So other questions I just put in, I think these are big. And this has actually been published, so these are not mine. But I think they’re just generic questions that are important to consider. Do I really need this test or procedure? Listen, medicine continues to be very costly at an individual level and at a system level. And I think you need to be thoughtful about, hey, is this something I really need to do or not? And it can cause some discomfort or some quality-of-life issues just in the testing we do.

Are there simpler, safer options? Sometimes we forget to ask, is there something else I can be doing on the menu of choices, doc? Help me understand which one may be best for me, but also, what are those choices? What happens if I don’t do anything? I think patients need to be more active about doing this. Just because we can doesn’t mean we should. And sometimes we may not have… We are often compelled, I should say, as surgeons, as providers, to do. Sometimes doing nothing is a better option. And you want to make sure you’re able to engage your provider and let them know that you are comfortable talking about that space.

How much will it cost? I think you should always be engaging around that. I think that’s often important on a patient’s mind. Financial toxicity as well, known and probably under-discussed. And so I’m encouraging you not to be shy about thinking through that with your provider. Diversion types. If you decide you’re going to have your bladder out, this concept can be really overwhelming. I suggest you break it up into two visits or at least two discussions with the first being, hey, am I having my bladder out? And then the second being, if I’m going to have my bladder out, what type of diversion am I going to do? Okay. Is it going to be a continent or an incontinent? Those are the two big buckets. And then within those two buckets, really, incontinent is what’s an ileal conduit. And then the continent comes down to a catheterizable channel or a neobladder. This is very good information on the BCAN website.

Stephen Riggs:

And this is really one thing in the patient handbook that you can start setting yourself up within that information like, hey, I’ve got some information about the disease. And then in the back part of the book, they have information about these diversions, they have drawings. They have word retrieval that’s on the sixth-grade level, and it’s really important for health literacy. And so again, it’s really hard to listen about a diversion if you don’t have any weapons in your bag. If you have no concepts to even frame it, it’s like talking a different language on the first day and speaking it fluently, it’s just not possible. And remember, this is a two-way street. I don’t know if I said that at the beginning, but I’ll say it again, this is not, I show up and the doctor just feeds you the meal. No one manages your healthcare better than you. You want to show up being an advocate for yourself. And so you want to help your physician help you. I will say that again. Help your physician help you. It’s very important.

Again, we talked a little bit about this. This kind of falls in line with the cystectomy. Again, complication rates. How many types of diversions do you perform? What’s the breakdown? Most people should know that. Like, “Hey, do I do…” 50% of my patients get continent diversion, 50% incontinent. What does that look like?

Stephen Riggs:

We put patients in contact with other patients I’ve operated on who have diversions. That’s probably invaluable, right? I always say it’s really easy for me to tell what it’s going to be in life to have a neobladder, but it’s a lot easier when somebody’s telling you who actually has a neobladder. And I bet what they tell you are different. I bet what I tell you… Because I’m telling you what I think it is, what it looks like to me, and that may be very different. And then also, I get into the personal characteristics. And maybe beyond the scope of this, there are certain things that would make people want to think about neobladder or catheterizable channel over conduit or not. And some of those just may be their lifestyle, their dexterity, their beliefs about cosmetics and such. And so you’re just going to want to think through that. And again, a lot of that you can start thinking through before the visit by researching really, again, in that BCAN handbook.

Stephen Riggs:

I just think some other general things to give you a sense of the quality of the practice or at least do they do this a lot? Am I in a space at a place that looks beyond the disease? Because the disease, it’s not just a one and done, right? We’re talking of a lot of things that, Mary, you’re going to talk about survivorship, palliative care. Sometimes it’s easy to cure the cancer in the moment. It’s the long-term treatment or the iterative treatment, or the iterative anxiety, or the follow-up that’s really the challenge or where really the needs are. And so just understanding if the place you are currently located is going to be able to support that. Listen, I don’t think anybody’s going to fault you for seeking a second opinion. I’m not saying you always need to do it. This is just going to have to be a general gestalt like, “Hey, I’m a little uncomfortable,” or, “Hey, I’m not connecting with my physician or I’m not understanding, or I just would feel better.” And asking your physician, if they were going to seek a second opinion, where would they go? That’s a very appropriate question to ask. So I would encourage you to be thoughtful about that.

Stephen Riggs:

Support groups. Again, getting a sense of what’s the conference and nature of the setting. Most places are doing this a lot, we’ll have support groups. We talked about putting you in contact with similar patients, especially that have the diversion that you’re interested in, similar stage. That goes across the litany. That support is invaluable. And a lot of people have found reward in engaging with other patients. And you can do that on the BCAN website as well. And then what other additional support? Again, it’s listed here. And I know Mary’s going to talk a fair amount about this. This is on the BCAN website. Again, just some resources, some pictures, looking at that ahead of time, being a little thoughtful, being engaged, having some word retrieval. Right? And really setting yourself up for success.

A proactive patient probably has a better chance to probably get better treatment than one that’s not, just because you’re starting to really understand the landscape. So I can’t say that enough.

Stephanie Chisolm:

Thank you so much, Dr. Riggs. That’s really great that you highlighted those Get the Facts pages. I think it’s important to understand there are actual questions from other patients that are on there that might help guide people when they’re trying to think about, I don’t even know what I need to know. And so those fact sheets are available on our website in a number of different places. But I think just going and taking a look at that to understand the vocabulary, as you mentioned, so that you really are able to speak to your doctor. They’re written in plain language and they’re free of charge 24 hours a day whenever you need them. So thank you for bringing those up. Mary?

Mary Dunn:

Like Stephanie said, I’m a nurse practitioner. I work at UNC in Chapel Hill where it is springtime and pollen time. And I have what I call the best job in the world because I get to work in urology, taking care of patients on the surgery side; and in medical oncology, taking care of patients who are getting medication for their bladder cancer. So I get to do lots of work with lots of patients. I’m going to touch on some of the medical oncology lingo and things that I think are important for people to know, going through treatment if you’re getting systemic therapy. So medical oncology is a specialty where the provider, whether it’s the physician or the advanced practice provider, are trained to diagnose and treat cancer using medication essentially. So in this context, we think about things like chemotherapy, biotherapy; and for other cancers, hormone therapy. And we use immunotherapy, of course, in bladder cancer as well.

So medical oncology can be involved in all stages of bladder cancer. So non-muscle-invasive bladder cancer and also muscle-invasive bladder cancer. And I put some definitions up here just in the event that folks want to have them, which I think you’ll have access to this because it’s being recorded, but just what these different things are. Right? Because we throw around these terminologies all the time. But a lot of times in the bladder cancer setting, when we’re talking about giving people medication, we talk a lot about chemotherapy, which is given through an IV. And we’ll go through some of this here. Sorry, my computer is being ridiculous per usual.

Mary Dunn:

So hearing that you need chemotherapy or immunotherapy or any kind of medication for your cancer can be absolutely terrifying. And a lot of people know others who have had chemo because, unfortunately, everyone knows someone who’s had cancer at some point. But a lot of people also know people who have had chemotherapy and have had rough or difficult experiences with it. So what I try and counsel my patients is that it’s important to keep in mind that all chemotherapy is not the same. For example, chemotherapy that we use for bladder cancer is not the same that’s used for breast cancer or colon cancer or other cancers.

So I think part of being a proactive patient is not only the interactions with your medical care team but also with people in your life, in your support system. Typically, very well-meaning people who sometimes, if they find out you’re going through a cancer experience, want to share their stories, which is usually coming from a good place, right? To offer that support. You can be proactive in that setting if you don’t feel ready to receive that information from people. If you simply don’t want to hear it or it’s too scary, it’s totally fine to establish boundaries with your loved ones and say, “Thank you for thinking of me and sharing your story. I’m not ready to hear this right now.” And I always tell my patients, you can use my name in vain. You can say, “My nurse practitioner told me that it’s okay if I don’t want to talk about this.” So people use my name in vain all the time and I’m completely fine with that.

Mary Dunn:

So this is just a list of questions that I think could be potentially helpful when you’re facing potentially getting chemotherapy or immunotherapy or any kind of medication for bladder cancer. So asking the oncology team, why are you recommending this? What are the names of the chemo and immunotherapy drugs? As many of you probably know, the names of these medications are completely ridiculous and everything has two names. I think it’s really important to talk about the potential toxicities and side effects which, unfortunately, can be a lot. Thankfully, chemo side effects are usually very predictable as far as the most common ones. And so we can counsel patients really well on those.

The side effects for immunotherapy are not as predictable and most people don’t have side effects from immunotherapy. So it’s a little bit more of a challenging conversation.

Mary Dunn:

Depending on the stage of your bladder cancer, chemo might be recommended before surgery if you’re going to have a cystectomy. It might be recommended in conjunction with radiation therapy if that’s the route you go. It might be recommended after surgery if you have a cystectomy. And it might be recommended in the context of a palliative setting with more advanced disease. So all kinds of different scenarios where we could be using these medications. It’s also important to ask your team, how long am I going to be receiving this treatment? So how many cycles? “Cycles” is lingo that we throw around a lot. That just means what is the block of time for the chemo? What days am I going to get it on? How long am I going to be up in the infusion center? Am I going to need some sort of IV put in my arm or do I need an IV put in my chest? What are the success rates with this chemo and why are you recommending it? What happens if I decide not to take chemo?

And Steve touched on eligibility for clinical trials is always important to think about too. And then the what-ifs. What happens if I miss a dose? Or what happens if I don’t feel well enough to take my treatment? What happens if this medication doesn’t work? I think a highly underutilized resource is the nurses who work in the infusion centers are a wealth of knowledge, especially when it comes to side effect management and also setting expectations for what to expect when you get home and how to take your pre-nausea medicine, your post-nausea medicine, all kinds of stuff. So the infusion nurses are a wealth of knowledge there. You might run into a scenario that requires a treatment delay. For example, I had a patient come in last week whose blood levels weren’t safe enough to do her chemo so we had to push it back a week. So I think our job up front as providers is to set folks up to know that that might happen, what impact that might have on the big clinical picture.

We’re kind of always, in anything we do in oncology, walking this fine line between making sure we’re doing everything we can to treat the cancer and also making sure we’re doing everything we can to keep you safe. And that can be a fine line there. So if we’re not explaining that very well and if we’re just coming in the room and saying you can’t get your treatment today because your kidney function number is too high, and no other explanation, it’s okay to stop and ask for clarification.

Mary Dunn:

So there’s lots of resources on the BCAN website about immunotherapy. I know that immunotherapy has been such a hot topic in the bladder cancer community over the past few years, given how new and exciting it is in this space. I think there’s another webinar here by Dr. Morgans, who is fantastic, and there are some information sheets as well. Okay. So touching on managing expectations. And Steve and I are going to overlap on some of this information a little bit. But asking questions and asking for clarification can really help manage expectations. So not just at that initial consult, which can be incredibly overwhelming, but at any visit along the way, whether it’s your subsequent visit or post-op visit, or a post-treatment survivorship three years later. Asking questions is what we want for folks to be doing, and quite frankly, what we expect for folks to be doing so that we can make sure we’re using shared decision-making and we’re all on the same page about what the plan is. It’s really hard to predict how each person is going to tolerate each therapy, so whether that’s chemotherapy or immunotherapy. But knowing these things, in general, might help ease some of the worries. So for example, what are the most common side effects? When could I expect to feel this side effect? And what are some things that I could maybe be doing at home to prevent this particular side effect?

Mary Dunn:

The most common side effect with any cancer treatment is going to be fatigue, regardless of stage and/or treatment. Knowing this up front can help ease some of that worry too, and we can help you manage that. So just general questions. Am I still going to be able to do X during chemo? So am I still going to be able to ride my bike 10 miles a day? I had planned a trip next month. What if that falls during one of my BCG treatments? Does that put me at risk for not treating my cancer the way that it needs to be treated? My surgery is in a month. When am I going to be able to go back to the gym or go back to work? And I just included some examples. So for non-muscle-invasive bladder cancer, managing expectations. Those of you who that’s part of your story, knowing that schedule up front, you all know how intense that is, right? So if you’re getting BCG, what that schedule is like. And then that follow-up schedule for those surveillance cystoscopies, knowing that that is years and a lot of procedures I think can help manage expectations so that you’re not surprised when we say we’ll see you again in three months for another scope. Again, talking about side effects with any kind of chemo or immunotherapy. And then as Steve touched on, managing expectations related to cystectomy.

Mary Dunn:

Cancer diagnosis and treatment is life-changing, so I always try and tell my patients, especially in that initial phase because it is incredibly overwhelming. And sometimes it can take a few visits to really absorb what you’re being told and what’s happening to you is to be kind to yourself and remember to give yourself grace through all of this, because there is no manual for how to really deal with this. And that’s why we’re here to help you. Avoiding information overload probably seems like an absolutely ridiculous thing for me to be telling you in the context of a cancer diagnosis because I know a lot of us, when we are faced with something as traumatic as a cancer diagnosis, many people either want all of the information or want none of the information. And then there are some people who are kind of in a middle path.

So visits with your medical team are usually filled with a ton of information. That initial consult visit when the plan is being made can be especially overwhelming, so taking notes to help refresh your memory once you get home. A lot of patients find that keeping a cancer notebook is helpful. You can keep notes, copies of your blood work, and scan reports. So you can also have that as part of your electronic medical record if you connected that with your institution. Sometimes your providers unintentionally breeze through information without realizing that you might need clarification, so please ask. We would much rather take the time to repeat ourselves or explain something again than you leave with unanswered questions.

And again, Steve touched on this a couple of times, and I’m just going to reiterate it. I cannot stress how important it is to bring someone with you to your appointments if you’re able. I do realize there are folks who don’t have a close-by support network. It’s not uncommon for you to miss something. And having that second set of ears can be a huge help. And also recording, like Steve said. A cancer diagnosis is overwhelming in and of itself. Going to a cancer center, meeting a bunch of new people along the way, and receiving this information about treatment is difficult. So if you find yourself becoming over overwhelmed, it is okay to take a break. Get some water, maybe step out of the clinic and get some fresh air. And potentially even see if you can break that consult visit into two separate visits if you’re finding yourself getting overwhelmed. I gave a whole talk on what to not look at on the internet, but for the sake of time, I’m just going to get on my soapbox here for just a second. The internet is full of great resources. Unfortunately, there’s also some horrific and unreliable information out there too. And sometimes it’s really hard to know what is reliable and what is not.

Mary Dunn:

It’s really important to understand that everyone’s experience is different. I highly recommend online support groups and forums. But always keeping in the back of your mind, just because one person experiences X does not mean that that same thing is going to happen to you. If you read it on the internet, don’t assume it’s true unless it’s coming from bcan.org. And discuss any concerns with your healthcare team. So we have these clinical summaries. So those of you who go to centers where they use Epic, we can give folks after-visit summaries. And what I typically do is just type up a bulletin list of all the important things that I talked about, print it off, and give it so that there’s some written information about what we talked about that day. We use so many words that I think we assume that people know, right? Some people have no idea what any of these things mean, and why would you if this has never been part of your story before? We shouldn’t expect our patients to be experts, right?

Mary Dunn:

I would be shocked if people know what a cystoscopy was before coming into the office, so that’s why I say… I’ve counseled a patient today. He needs a cystoscopy. Bladder scope, what does it look like? What does it do? Why are we doing it? It’s not uncommon that you’ve never heard any of these words prior to your diagnosis. So this kind of ties into one of my previous slides about information overload and taking notes and asking for clarification, because sometimes we just assume people know what these words mean. Sometimes I assume people know what an ostomy is when they’re looking at me like I’m completely bananas, which they should because I shouldn’t be making those assumptions. And usually, it’s unintentional. We don’t mean to confuse people. So we could use language such as, if you have to meet with the anesthesia doctor, that’s the doctor who uses the medicine to make you go to sleep before your surgery. So just breaking it down a little bit. Thankfully, there is a glossary of terms on bcan.org that has a great resource of things that you can go to and look at anytime. That’s the website there. It’s really important to know who your care team is. So depending on the stage of your cancer, you’ll likely have different disciplines as part of your care team. So that could be physicians, so urologists, radiation oncologists, medical oncologists, nurse practitioners like me, physician assistants are commonly part of your care team, as well as a variety of other disciplines. So with so many people involved in your care, it can be confusing as to who does what.

If you don’t have a clear understanding of everyone’s role, it’s definitely important to ask for clarification, especially if you’re seeing urology to talk about surgery and medical oncology to talk about chemo and radiation, talk about radiation. Who is going to own which part of your care, not only at the initial phase but after you’re finished with treatment? Who’s going to be doing those post-treatment surveillance visits is always a big question to know. So at academic medical centers, there may be more providers involved than in private practice. And residents are heavily involved in your care at academic medical centers. And residents are physicians who are training in their specialties. So you’ll see a lot of residents. Nurse practitioners like me are nurses who have master’s degrees and educated and trained to diagnose, evaluate, and treat. So I’m an adult nurse practitioner, no kids, no thank you, with a sub-specialty in oncology. And physician assistants have similar training as well.

Mary Dunn:

Get business cards. I know that business cards seem to be a thing of the past because everything seems to be electronic. But business cards, I think, in medicine, are still really important. So you’ve got names and phone numbers and all that kind of stuff. Many providers, just to set up expectations here, don’t have direct phone numbers. So I get asked a lot for my phone number. I don’t have a phone number. I have a cellphone number, but that’s a personal number. Because we’re always in-clinic, seeing patients, or in the operating room, so we don’t have direct numbers. So we rely on other members of the team to help us triage phone calls. A lot of times, the nurses can manage those calls without getting us involved. And if they can’t, then they forward it to us and we help out on the back end.

Mary Dunn:

So different institutions have different ways of managing that. Sometimes you’ll call in and you’ll talk to an administrative support system. Sometimes it’ll be a triage nurse. Sometimes it’ll be the nurse directly in the clinic. But just knowing who do I call in X, Y, or Z scenario. Another little pearl is making sure you have an after-hours number that you can call in the event that you’re having something urgent going on that you need to get in touch with your team about is always a good number to have. Some providers communicate via regular email and some do not. That’s a very personal preference. There’s lots of ways to get in touch with us, and I think it’s important to know which way your team prefers. So what’s the most effective and the most efficient? Who prefers what? Emails get lost, I’m sure, as Steve can chime in. We get a million emails a day. I would much rather have patients communicate with me through the portal if you have access to that because it’s directly linked to your medical record. So I can just open your message and go right in and see how I can help you. So that just makes it a bit more efficient and also safer from a privacy issue standpoint. And then it’s important to know who to call for appointments versus side effect management versus treatment questions. So getting that information up front can be really helpful and hopefully help alleviate some frustration up front if you feel like you’re having to make multiple calls to figure stuff out.

Okay. At the end of the day, what we all do is about you and your caregivers. Patient-centered care. It’s why we do what we do. It’s why it’s a privilege to do what we do. There are so many people who are going to touch you along your cancer experience, whether it’s your primary team with your physicians and nurses and advanced practice providers or folks who work behind the scenes that you don’t necessarily see.

So the pharmacy team. Gosh, what would we do without our pharmacy team? The recovery team, so folks like physical therapists. The phlebotomists. And this is not even an all-inclusive list, but there are so many people who are involved on your team, which is why it’s important to clarify who can I go to for what. And just know, ultimately, we’re there to take care of you and it’s an honor to do so.

So after treatment, what happens next? So this is always for people who are getting treatment for their bladder cancer with curative intent, and you go into this post-treatment surveillance survivorship phase. That follow-up schedule can be a little bit confusing.

Mary Dunn:

And you go from seeing your treatment team a lot to, all of a sudden, having months between coming. And that sounds really great at first, but I’ve had folks say it felt really scary because they’re used to coming frequently for chemo, and then you get these months away from us can feel weird. What I tell my patients is that we’re not married to that appointment. If there’s something going on in-between visits, please reach out. That is why we’re here. But it’s important to know what the follow-up schedule’s going to be like. So when I see folks in the urology clinic, for example, for their post-op cystectomy visit, and then we do a six-week check-in to see how folks are doing, we do these survivorship care plans. So these visits focus from diagnosis and treatment to life after treatment. So managing any lingering side effects, managing the new normal, which I hate that, but for lack of a better way of putting it. Helping people manage the psychological aspect of cancer care. I could give a whole lecture on that because I think it’s so incredibly important. But making sure people are doing well from managing the psychological aspect. Because there can be that fear of recurrence, the uncertainty, all of those things.

But the survivorship care plans are actual paper documents that we give to people that give a summary of what their treatment was, what the follow-up schedule is, some of the expected potential long-term side effects of whatever specific treatment they got, and contact information. And I also send those over to people’s primary care providers so that the primary care provider is aware of what we are doing on the cancer side. And then sometimes there are tough questions and topics. So sometimes providers unintentionally don’t cover topics that may be really important to you, and reasons for this are plentiful. What could be lack of time, lack of knowledge, level of comfort about a specific topic, et cetera.

And while we might not always have the answer, I certainly don’t have all the answers, we can absolutely refer to other members of the team or specialists. So for example, social workers or financial counselors. I don’t know how to counsel people about insurance and costs and all that stuff. There are experts on the team who do cancer patient support, nutritionists, sexual health specialists, the palliative care team. And this is just a short list, it’s just stuff that patients have told me in the past. I really wish I knew more about these things.

Mary Dunn:

It’s not always that we don’t want to, but sometimes we’re just not experts. We’re not experts in everything. And there’s people who surround us every day who can help with these different conversations. So these are just some pearls of wisdom. I’m going to wrap up here so we have time for some questions. But pearls of wisdom, I won’t read them all to you, from patients and caregivers. So this is from my personal experience, experience of others, and some stories that I’ve been told. One thing that people tell me all the time when they come to main campus at UNC, “I really wish I knew how big this place was and how that parking deck is a nightmare.” And that might not seem like a big thing, but it is, because it adds like 15 minutes to the visit and you’re rushing and all that kind of stuff. People wish they knew how long they were going to be at their appointments. People tell me they wish they knew how hard it was going to be for their spouse or their partner or their caregiver. Caregivers have their own set of unique needs.

“I wish I should have asked, can someone sit with me during chemo at UNC?” The answer is yes. “Can someone stay with me or sleep in my room while I’m at the hospital?” That’s COVID-dependent, of course. And then questions like, “If I choose not to treat my cancer, what does that mean for me? How long will I live?” So these are just some pearls. There are many, many others that we could go through.

And this is a list of vetted quality resources that I recommend perusing in the event you want reliable resources and not just Mary Dunn’s blog on the internet. I would highly recommend you stay away from any blog that you see me associated with. I know that was a lot of information, a short amount of time. And I’m, again, so incredibly thankful. I’m going to stop sharing my screen.

Stephanie Chisolm:

And I do want to just remind everybody that all of these things are possible in almost every situation. And you have to ask and you do have to sometimes stand up for yourself a little bit. And maybe sometimes it helps if you can have somebody else with you in the room so that they can also speak up on your behalf, because I think that’s certainly a big challenge. We’ve had a number of questions. Some of them are a little general, some are very specific. There was one comment from one of our advocates who’s on here. He mentioned that MyChart powered by Epic has been instrumental in his bladder cancer case in subsequent surveillance and medical team communication for over 10 years.

Stephanie Chisolm:

And he was actually able to access all of his information when he was on a visit to a hospital in Dallas while on vacation. He wanted to know, “In MyChart, do they (medical systems) talk to each other, these different medical chart systems so that if you’re not in the MyChart system, you can get your information should you have to travel?”

Mary Dunn:

Yeah, that’s a great question. They didn’t at first. And Steve, correct me if I’m wrong here, but all Epic-based institutions can see one another. It used to be, like when we transitioned to Epic years ago at UNC, that we couldn’t see anything outside of Epic, which was a nightmare, because these electronic medical records are supposed to make things easier. We can see other systems outside of Epic now. I don’t know which ones off the top of my head. But hoping that that’s going to be something that continues to improve in the future because it makes care so much easier, not only from the provider standpoint but also from the patient standpoint, so things can be in one place. Thank you for the question.

Stephen Riggs:

Yeah.

Stephanie Chisolm:

Sure. Great. There’s another question that two people have, so it’s very similar. What are your suggestions for older patients? First of all, think about older patients might not be as comfortable questioning their doctors and speaking up for themselves because, oh, my doctor told me I needed to do this, so I guess I need to do this. So what are your recommendations for older patients themselves or for adult children of older patients who might be trying to intervene and be more proactive on their parents’ behalf?

Stephen Riggs:

Yeah, that’s an interesting question. Well, I guess the easiest answer would be to say, well, I think you shouldn’t feel like that. And I’m not trying to make this simple. I just think you have to, again, understand that being thoughtful about what you want, thoughtful about and purposeful that you want to be engaged in your care. It’s not necessarily questioning the physician, right? You’re just trying to help your physician help you. That’s the way I tell people to look at it. This is not questioning whether I know the answer or not. And I also think you flip that a little bit. I think that dynamic from the provider’s side now, I guess that gap is older patients, younger providers. I don’t think providers look at that, “Hey, you do everything I tell you.” I think providers are looking for more of an engaged discussion as well and are very comfortable in the, “I don’t have all the answers. I don’t know everything. Help me help you.”

I also think maybe one strategy is bring somebody younger. Bring your friend who might be younger or just your friend who might be more vocal. So not only bringing somebody but maybe bringing somebody and saying to them, “Hey, I’m traditionally uncomfortable in this space. Can you help? Can you be that personality that I’m looking for?”

Stephanie Chisolm:

So also in that population then you face some challenges with technology. You both pointed out some great resources. Obviously, BCAN has a lot of resources for patients and their families. But what about some of the things that require them to interface with you through technology and they’re clueless, what do you do then?

Mary Dunn:

Paper.

Stephanie Chisolm:

Paper, the old-fashioned way.

Mary Dunn:

I miss documenting with pen and paper. I’m an old soul. So a lot of my patients who are older, and even younger patients who aren’t tech-savvy or don’t have access to technology, we always have to think about these access issues as well, will… We give folks, when they come into the cancer center, a generic cancer notebook. And then we put the BCAN stuff in it. And I tell them, if this is your preferred method of hanging on to information, keep this. Bring it with you to every visit. We can print off your lab results, we can print off your results. Just keep it organized that way. A big fan of paper, even though people yell at me for printing too much. Sorry, old soul.

Stephen Riggs:

Yeah. That’s a great question. I think the number one thing I tell people is you need to be clear that… You don’t want to write… It’s like communication. The biggest problem with communication is the assumption that it’s occurred. You don’t want your physician and your physician’s team who may favor internet, MyChart, right? Every EMR has a portal, email. If you don’t do that, you need to be upfront. That’s a barrier. So number one, I’d say you need to recognize that barrier. For people who come a long distance who have no internet, you can only speak to them on the phone, so we do a lot by phone, phone visits, around that. I think also within that, you need to say, “Hey, the phone visit’s not working for me. I need to come in.”

I think sometimes as we feel easier in 2022 not coming in for a visit or doing it virtual or people like that, I think that works bidirectional. The physician has to try to understand when a phone or a virtual visit is not appropriate. And you need to say, “Timeout. I just can’t get what I need out of this. I need to go in person.” I think the other thing I like, what Mary said while there in her talk, is how do they like to communicate and how do you like to communicate? And most importantly, how do you communicate? Because a lot of times we don’t even understand that till you tell us.

So we may not even be connecting because we think, oh, you didn’t answer your email, et cetera. And you say, “Listen, I only have a home phone, and here’s the number. Or who can I call after this appointment to get more information?” Because odds are, if you’re going to be proactive, odds are there’s no way in hell you figure it out in the first visit.

Stephanie Chisolm:

Yeah. Sometimes you just have to digest it all and just sit with it for a little bit. But then again, when you’re given a diagnosis like cancer and bladder cancer, you don’t feel like you have time to sit with it, so you just get really… I think many patients get a little excited, a little anxious at the same time. So here’s another question that’s come in. If a patient is geographically limited to be seen by a urologist and practice in a non-NCI-based urology clinic, what can they do to make sure that their doctor in their community… Because we know 70% to 80% of patients are being seen in their community, not at the large academic hospitals where you are. How do we make sure that they get what they need to have in those community centers? What is your suggestion for them?

Stephen Riggs:

Yeah. It’s a hard question. It is. It’s a great question. It’s very thoughtful. We wrestle with this at the national level all the time. Now, that is not to say there’s not great care going into the community because there is. And listen, I’m not here to ever say we should be bringing them all into some central area of care. I think what I would suggest is, A, there’s a fair number of resources on the BCAN website to think about some word retrieval. And if you’re uncomfortable, if it just doesn’t feel right… I think I saw someone in the chat like, hey, they said there was no muscle in the… Or they didn’t even mention muscle in the pathology. Well, just by the fact that that’s ringing in your ear, and if you bring that up and you feel uncomfortable, you can certainly reach out to other places, not by traveling, but you can reach out and get consults from a distance. I have patients reach out to me all the time. And honestly, I ad-hoc look at their stuff and give them some feedback. And talking on the BCAN website though, looking for some resources on that, talking to patients on what they did. So not easy, but I think that’s probably why I would say you need to be more proactive in that space if you feel uncomfortable.

Stephanie Chisolm:

Okay. Great. Thank you. And then the other question, there’s just one other question I think. How important is the role of the pathologist? And when you’re being proactive, with you all as primary providers there, the pathologist is not somebody that necessarily the patient sees on a regular basis or even knows much more about, other than the fact that they have this very big data sheet that says what their cytology is all about. So how do you get proactive if you’re not comfortable with what the pathologist’s report is if you don’t have any contact with that person?

Stephen Riggs:

Go ahead, Mary.

Mary Dunn:

The role of a pathologist is crucial, especially when we’re thinking in terms of a bladder cancer diagnosis, to distinguish between high-grade, low-grade, non-muscle-invasive, muscle-invasive. That could be a game changer. It’s never a bad idea. In fact, we do this, patients request this from time to time, to get either a second read on the pathology from a different pathologist within the institution, or to have the pathology sent out to another institution of your choice. That can happen.

When we get new patients into UNC who have had their TURBT, so that’s when we go in and scrape out the bladder tumor and look at it under the microscope, we’ll request their pathology from wherever they had that done. And we’ll read it at UNC. If you’re ever wanting more information about your pathology report, there’s definitely avenues to go down there. Steve, I don’t know if you have any more thoughts there.

Stephen Riggs:

No. I love the question. It’s a great answer. All right. So I’d say one thing. That’s the easiest thing to get a second opinion without, quote, “leaving,” right? Because you can say, “Sorry, here it is. Would you be okay sending my pathology for a second look?” Now you’ve empowered the physician. You’ve already let it out there. It’s going to be very easy. If they ask you where to send it, well, you can look on the BCAN website, you can name just the closest academic center. Again, this is being a little bit prepared for that. I think that’s important. Also, I will comment, it’s a little bit near and dear to my heart. I’ve done a fair amount of research in this area. There’s not an insignificant discrepancy rate between what one pathologist says and what the next says, assuming that the next is considered the expert. My point being that that’s never a wrong answer.

Stephen Riggs:

And I would suggest, if I was in a rural setting, if I was in a small community, I think you should put that down in your box and ask for that. You don’t have to go anywhere to do that. They send the slide, they send them back, you’re checking the box there.

Stephanie Chisolm:

So the providers aren’t going to feel a little insulted that they’re being asked to do this again because I think that’s part of the anxiety from a patient perspective of, “I don’t want them to think badly about me. Maybe then they won’t take good care of me.” There’s lots of things that go through people’s minds. And that was certainly something that came in as a question. But it’s not a bad thing asking for a second pathology read or anything like that.

Mary Dunn:

I think it’s very kind and very generous when patients are concerned about how a question that they ask is going to affect me. At the end of the day, it’s your life and it’s your body. And we want you to be as comfortable as you can possibly be in this scenario. As long as you’re not yelling at me and throwing things at me, that would hurt my feelings. But asking for a second opinion on a pathology read or a referral to another institution, those are things that are simply advocating for yourself and not at all… It shouldn’t be insulting to your team.

Stephen Riggs:

Yeah. Stephanie, it’s an interesting… I keep hearing that comment. I really appreciate it. I always think, as providers, I look at the way healthcare is delivered very differently than when it’s being delivered to me. And what I would say back is that doesn’t get on my radar, but I understand that happened. I think that is misinformation, unfortunately. And I’m sure… I’m not suggesting that that doesn’t occur, but I think that is a misrepresentation of how physicians feel in general. I would feel very comfortable saying that most good physician-patient interactions occur bidirectional, receiving and giving, being engaged. It’s much more easy engaging for me to be interacting with you because you’d be a little bit prepared and we can be a little bit thoughtful in discussing. That’s a much easier intellectual interaction and I think a much more helpful interaction than, again, me just sitting back and accepting everything you say.

Again, to Mary’s point, you’re trying to help yourself out. You’re trying to get the best care possible. Medical care is no different than life. Sometimes a squeaky wheel gets greased. Right? And you being active and in front of them and knowing that you’re prepared often leads you down to the right place, the higher quality. So you want to assume that position in that interaction.

Stephanie Chisolm:

Right. So being proactive is not being aggressive or rude, it’s standing up for yourself or for your loved one, right? Okay. Well, this has been phenomenal. This is a great resource. I’m very thrilled that we were able to update the content because this is just always such an important topic for patients.