Webinar: Patient Etiquette – How to manage your bladder cancer treatment

October 25, 2023

Bladder cancer often requires a long-term relationship with your healthcare team. Along with that come patient responsibilities to ensure your healthcare team has your support in helping to provide the best care. Urology nurse, Becci Hannigan, from Baylor College of Medicine, sheds a light on those responsibilities and provides practical tips to help navigate the patient journey.

With Nurse Becci Hannigan

Year: 2023

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Introduction to Patient Etiquette – How to manage your bladder cancer treatment (Part 1)

Transcript (PDF)

Questions & Answers on Patient Etiquette – How to manage your bladder cancer treatment (Part 2)

Transcript (PDF)

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Full Transcript of Patient Etiquette – How to manage your bladder cancer treatment

Patricia Rios:

Welcome to Patient Etiquette: How to Manage Your Bladder Cancer Treatment. My name is Patricia Rios and I’ll be your moderator for today’s Patients Insight Webinar. This educational program is brought to you by the Bladder Cancer Advocacy Network.

Our guest presenter today is Becci Hannigan. Becci is a mother, patriot, and an outstanding nurse. She received her nursing degree from Houston Community College, a master’s in post-grad from Walden University and a post-grad at Texas Tech University. Becci is certified as a cardiovascular and critical care nurse.

Currently, Becci is the urology oncology clinical lead at Baylor College of Medicine, working very closely with Dr. Seth Lerner for the past five years. She is joining us today from Houston, Texas to talk about our rights and responsibilities as patients.

Bladder cancer often requires a long-term relationship with your healthcare team. As a patient or even caregiver, we have the responsibility to ensure our healthcare team has our support in helping to provide us care. Becci is going to explain exactly what that looks like and provide tips on how to avoid pitfalls and potholes on this journey. Without further ado, I will now ask you to direct your attention to Becci. Becci, the screen is all yours.

Nurse Becci Hannigan:

I’m so happy everybody is here. I’m really, really excited about this because there’s a lot of things that I’m going to cover today that’s going to be really helpful for everybody navigating through this journey and it is quite a journey. I have some interesting information that I’m going to share with you guys, but if we’ll go to the next slide.

Nurse Becci Hannigan:

So, basically, the nuts and bolts of things. I don’t want to read everything, but what I want you to do is if you have a pad of paper and a pen, write down your questions and then at the end, I will answer your questions. So, this is going to be a lot of information and I hope it’s going to be kind of jog your interest in some things and you’ll have some good questions that’ll help you move forward in this bladder cancer journey. Okay, next slide please.

Nurse Becci Hannigan:

Okay, so what we’re going to talk about today are the rights and responsibilities of patients, but more on the side of responsibilities. I did include the patient rights that comes from the American Medical Association website and basically you have the right to competent care and respect. You have the right to consent to your medical treatment among other things, but what we’re really going to focus on today is the responsibilities that you have as a patient and a lot of people don’t really think about it, but that you actually do have some responsibilities.

Some of the most important things are going to be, be honest, about, like if you use cocaine every day. We need to know that. So, you need to be very, very brutally honest with your caregiver. This is a non-judgmental arena and we want to be able to do the best for you and in order to do that, we need to know about what medications you’re taking, whether they’re prescribed or not prescribed, what diseases you have, if there are any things that you may not think are that important. Just let us know everything about your history, and then the other thing is, and this is a little difficult even for providers or let’s say the nursing staff to talk about is whether you’re having sex or not. This comes into play specifically with certain bladder diversions with women because if you still are sexually active, it’s important that your surgeon knows this so that they can do specific types of surgery, whereas they’re just not lopping everything off and there’s just a little nub of a vagina left. They’ll do a specific manner of operating where they can preserve all of the vaginal cavity.

Nurse Becci Hannigan:

Really basic, basic etiquette things like show up to your appointment. If you make an appointment, show up or cancel. If you really think about it, these aren’t people that are just coming for a regular appointment. You’re taking up a slot for a cancer patient, which you are, but if you’re not going to make it, just be respectful and cancel that appointment so somebody else can have that appointment. Working at a teaching facility. So, we have a lot of residents and medical students and medical assisting students, so try to be open. Certainly, we don’t want to impinge upon your privacy, but just try to be open to getting care from people that are under the supervision of your surgeon. So, of course, the nurses that are taking care of you. Be open to them asking, or excuse me, answering questions that you have.

Nurse Becci Hannigan:

The patient portal is really important. I know the average cancer patient is in mid-fifties, which you should be pretty good with the internet, but then we have some octogenarians and older that can really struggle with the portals. So, we ask that you have a family member, somebody who is at your facility if you’re in a nursing home help you out. Nieces, neighbors, anybody, because nowadays, that really is the key way that providers are going to be communicating with you and how you’re going to communicate with the department.

Nurse Becci Hannigan:

Make your own appointments. So, a lot of times I’ve had patients say, “Well, it’s been three weeks and nobody has called me about my cysto appointment or my CT appointment, but nobody’s really probably going to call you. So, really take the reins when it comes to your care. If your doctor says you need to have a CT scan, it’s important for you to pay attention. Get the orders. So, make sure that you have a paper order in case you need to go more than one places and we’ll discuss this a little bit later when we talk about insurances, labs, CT scans. Anything like that, have the paper copies of those before you leave.

Nurse Becci Hannigan:

The next thing we’re going to talk about is healthcare technology. So, bladder cancer is quite a unique cancer in that many people survive a really long time. That means you’re going to be managed for a really long time and have a lot of technology used on you, cystoscopies frequently, going to the operating room every year, maybe every couple of years, ultrasounds, CT scans. God forbid we get into medications, even the simple medications like Ditropan for bladder spasms. That could be a lifetime thing.

Chemotherapy can get very, very costly. Vaccinations, and we’re not just talking about COVID and the flu. Actually, this year at BCAN, we had a physician talk about an actual vaccination for bladder cancer, which is very, very thrilling and of course at this time, it would be very, very costly, but a lot of technology procedures, some of the urologists that would be taking care of you may not have the skillset or the training to do some of the really high-end bladder diversions. For example, an Indiana pouch or a neobladder, and you may need to go to a medical center with a higher level of care. That’s another technology and then of course, we have some of the really cool things. Like testing, we have liquid biopsies where you can urinate into a cup. There’s one particularly called Cxbladder, and you can urinate into a cup and it can be used as a biopsy either to detect or to monitor. Moving forward, some of our patients are far enough away from their cancer diagnosis that we don’t do cystoscopies anymore. We just have them do this test and if something weird comes up on that test, then we would bring them back in and continue to monitor via cystoscopy, but it’s a really interesting option for some of our patients.

The other thing is ctDNA, and that’s circulating tumor DNA, and what it does is it takes your original tumor and they sequence your original tumor and then we can test your blood down the line and see if that tumor DNA can be detected and what that allows us to do is to maybe pick up on some possible micro tumors or metastasis very early before it becomes a mass or it embeds itself within a lymph node. So, that is a really, really neat piece of technology that we have available to help treat bladder cancer.

Nurse Becci Hannigan:

So, insurance. I can tell you, and you’ll see in a slide later, that I have a love-hate relationship with insurance. I love it because I do have many patients who don’t have insurance and they can’t get the appropriate care and normally we would have to refer them over to our county system, which isn’t a bad option here in Houston because it’s Baylor doctors that service that hospital. So, they do get the same care at Ben Taub as they do if they came to Baylor Medicine, but then insurance can be troublesome because when you’re comparing policies, you’re not comparing apples to apples.

Aetna may be great for cancer. Blue Cross Blue Shield may be great for fertility. You just really never know what you’re going to get because it’s very difficult to anticipate what could possibly be happening to you at this exact time.

So, a couple of things that are really important when it comes to insurance is understanding what your deductible is and how that works. Your deductible normally has to be paid upfront. So, if you have high deductible and copays, the beginning of the year may be challenging to you. Another thing you’ll keep in mind is make sure you get your next cystoscopy before December 31st so it’s covered in the current year, and you have about three months until you have to pay for your next cystoscopy. So, that’s something to think about.

Coding. So, many of you may not know about coding, but that’s how the whole medical world runs on codes. Your diagnosis has a code. Your procedure has a code, and those codes can really determine what you end up paying and if anybody has gotten a lab bill and you call the lab and say, “I’ve gotten this done a million times I’ve never had to pay for it. Why all of a sudden am I paying for it?” And they’ll tell you, “Well, it’s not coded correctly.” That’s what they’re talking about. Whoever put that order in didn’t put in a code that is appropriate in order for your insurance to pay for it. That being said, there are some tests that you’re just going to end up paying for it no matter what the code is. So, that’s another thing to think about.

Nurse Becci Hannigan:

Also, with insurance, when you’re doing surgeries, when you’re doing CT scans, labs, your insurance may have preferred facilities. Keep in mind any hospital-based lab or hospital-based imaging is probably going to end up costing you more out of pocket than if you go to a freestanding or a clinic or a doctor’s office-based operation and that’s something that never hesitate to reach out to your insurance and ask them, “Hey, where do you prefer me to go to get the CT scan?” That’s going to keep you from, let’s say, going to Baylor St. Luke’s Hospital and having it denied as opposed to going to Baylor Clinic where they would approve it and then there’s a delay.

I just recently had a patient state… She saw an initial urologist and they did some testing. She ended up coming to us and we did some testing and then she needed surgery and she says, “I feel like I’m being two weeks to death.” So, okay, we’ll get you in two weeks. We can get your CT in two weeks. We can get you back in to see the doctor in two weeks. So, you really want to stop the two weeksing from happening. So, knowing where your insurance wants you to go is really going to be helpful when you’re getting these tests done, PET scans and MRIs and ultrasounds. It’s good to know where they would prefer you to go.

And then there’s a thing called a prior authorization, which the word just brings chills up my spine. They are very challenging to get. You end up making a 45-minute phone call to answer five questions. Once you get on there, it takes maybe two minutes, but you’re on hold for 45 minutes. Every insurance has a different place that you need to call and it never fails that you’re transferred from one place to another and keep in mind, this is us doing this. It’s not you guys. You don’t have to worry about that, but they can be very challenging. So, should anything happen where the facility, the doctor or whatever tells you that you need a prior authorization, reach out to your clinical staff and we’ll talk a little later exactly about who you need to reach out to, but reach out to your clinic staff. Don’t wait for them to really take action.

Nurse Becci Hannigan:

What I really want to impress upon you guys today is this is your life. So, I want to empower you to really take charge of your care. We are here to give you that care and I don’t know if any of you have noticed, but healthcare is really struggling lately. I mean, COVID did a number to us and everybody’s having a hard time. It doesn’t matter where you go, whether it’s here in the great Texas Medical Center or it’s out in Topeka, Kansas or in a teeny tiny little town in Pennsylvania.

It’s a struggle everywhere. So, things are going to get missed in general. Keep an eye on yourself. Remember that the facilities have hundreds and even thousands of patients that they’re trying to take care of. So, you need to advocate for yourself or have somebody to advocate for you like a neighbor or your husband or anybody who is there that can really push the buttons and call and harass if needs be.

Okay. So, troubleshooting is one of the things that’s really important and there are a number of different kinds of troubleshooting that we can do in healthcare and as patients. The first one would be medical. So, it’s really important to know who you need to reach out to for different problems. Chest pain, difficulty breathing, please call 911. Do not call your urologist’s office. You would be amazed how many phone calls that I get. “Well, I’m calling you because my husband’s having trouble breathing.” “Ma’am, if you don’t dial 911 right now, please. This is a urology office. It’s not my… We’re below the diaphragm guys. That’s up above the diaphragm.”

So, anything that involves life, limb, or eyesight, do a 911 kind of operation, but there would be medical troubleshooting, administrative troubleshooting. That would be trying to get an appointment or get an earlier appointment. If you have issues with staff, like how you’ve been treated, if you need to report that. There is financial troubleshooting. So, of course that would have to do with bills and insurance verification and then there’s other troubleshooting that are more broad-based and that’s knowing what resources are available to you. One of the greatest resources is this resource that we’re on right now is BCAN, but there are other resources out there that can help you.

American Cancer Society is a fantastic resource for transportation. A lot of people don’t realize that if you don’t have a ride to your chemo appointment, American Cancer Society can provide those rides to you. There’s of course an application process, but they’ve been able to provide that for some of my patients that live quite far away, 40- 45 minutes. They’ve provided rides to patients to come in to get their chemotherapy here in Houston. They can also provide lodging. So, I’ll give you an example. The patients that we do neobladders on or Indiana pouches or any kind of cystectomy, taking the bladder out, we require that if they don’t live within an hour away that they stay in town for two weeks. That can be cost-prohibitive to some people. So, American Cancer Society, specifically here in Houston, I know for sure they have a lodge called Hope Lodge, and you and your caregiver can get lodging while you’re in the hospital and getting care postoperatively, so that’s really good.

Nurse Becci Hannigan:

The other thing is a resource would be Medicaid or whatever your state health insurance is. That’s a good resource. If you do have substandard insurance or you don’t have any insurance, Medicaid is an option. Local organizations, churches, many places are available that can give you help with at home if you need. You’d be amazed how many patients go through this journey pretty much alone. Like they might have a daughter who lives in Colorado and they’re here in Houston by themselves and this is quite a thing to go through by yourself. So, you might need some help. So, church organizations can help you. Corporate assistance for lodging depending on who you work for may have different programs. I would always recommend that you reach out to your organization, employee assistance programs. Baylor has a donation program where you can donate your sick time, those types of things. So, don’t ever think that there aren’t things out there to help you reach out to your clinical staff. And of course, BCAN is a fantastic resource and I’m certain that they could help you with a lot of this information.

Nurse Becci Hannigan:

So, basically the solutions with bladder cancer and technology. So, bladder cancer is a really high-tech cancer and the treatment alone can last two to three years. There’s a new treatment for bladder cancer. It is called Adstiladrin, and it’s a gene therapy and it’s every three months for two years. BCG is treatment for three years. So, this is going to be a very, very long-term relationship. We hope very, very long with technology and treatments and CT scans. I’ll give you an example. So, when you have bladder cancer, after you’ve had your cystectomy, or after you’ve been diagnosed with low-grade cancer, you’re going to have a CT scan every year for a minimum of five years. After that, depending on whether your non-muscle invasive cancer was low risk, intermediate risk or high risk, you can then transition over to ultrasounds, but still you’re getting something done every year that could potentially cost you money.

Nurse Becci Hannigan:

Generally speaking, ultrasounds are going to be the alternate to CT scans after five years. So, you’re in it for the long haul when it comes to bladder cancer and I think that’s a good thing. I like to see my patients that are 12 years post-cystectomy just doing really, really well. It’s fabulous. Then you have everybody’s favorite, the cystoscopy. Those go every three months for quite a long time and then you may transition to every six months and every year. Maybe seven to 10 years out, you may transition to not doing the cystoscopies and you’ll do a bladder ultrasound. We can do that for a little while.Plus we have those liquid biopsies that we can do.

Thinking about the travel that is spent coming back and forth. If you’re doing BCG, that’s six weekly. Well, all of them are six weekly and then it’s three weekly every three months you’re traveling back and forth. I have people coming from Louisiana routinely to get their BCG treatment. So, so much time on the road is spent, and just the time spent and most likely this is time spent away from your family, away from your job, away from your garden. So, there is a lot involved with bladder cancer.

Nurse Becci Hannigan:

Now here we go. My love-hate relationship with insurance. So, bladder cancer actually has the highest lifetime treatment cost of all of the cancers and for good things because it’s survivable. So, we do survive it, and then because it is such a high technological diagnosis. Talking about insurance, if something doesn’t make sense to you, reach out to the billing department. Don’t call your clinical staff. I have so many people call up here complaining about their lab bill and I have to tell them, “Well, first of all, I’m a nurse and I don’t work for the lab so I don’t know how I can help you, but reach out to the billing department,” and that’s really, really good information to get from the very “get go” of your diagnosis when you’re first in here and we’ll talk about having an advocate with you in a little bit, but have that advocate ask those questions. So, what’s the number to the insurance department, insurance verification? Do you have a phone number to medical records, to the billing department? Because these are numbers that are probably going to come up somewhere in your diagnosis as you go through this.

Prior authorizations. We did talk about the difference between inpatient and outpatient facilities. Inpatient facilities are going to be your hospital-based facilities and outpatient facilities are going to be like your freestanding. There’s a place here called Houston Medical Imaging that does a lot of the stuff for us because they can get patients in very quickly and they do their own prior authorizations, which is really good for me. Once again, we talked about preferred provider. Knowing what your insurance prefers is very good. That phone number is on the back of your insurance card. Just give them a call.

Who would you like me to go to get my CT scan? Now, you will have doctors tell you, “I really prefer you get it done here.” There are a number of reasons. One reason might be just because it’s more convenient for the doctor. Well, it is always up to you where you go. So, I want to empower you to know that you do have the last say in where you get your care, whether it’s with a specific doctor over the specific lab, over the specific radiological organization and then like I said, make sure you get the contact information and the staff may not know it right off, but I trust you. They can get that information for you and then there’s always the prophet Google. We can consult the prohet Google.

Nurse Becci Hannigan:

So, we’re just going to go over really quickly about who’s who in your care team. So, you’re going to have your surgeon, your surgeon is also your urologist.

They’re the same person. That’s the person that’s going to be coming up with your plan of care and doing your surgery and taking care of you as you recover. Then you’ll have faculty. So, if you’re in a teaching facility, you’re going to hear, “I need to call my faculty member.” That’s normally your surgeon. Your surgeon that you meet in the office at a teaching facility is most likely going to be a faculty member. You’ll hear the word fellow. A fellow is a… It’s still a student. They’re physicians who have completed residency, their full residency. So, they can go out in the world and be a urologist all on their own, but what they’re doing is they are taking sub-subspecialty training from a specific physician. For example, you’re a doctor, then you become a urologist, then you may want to become a uro oncologist. So, you would do a fellowship in uro-oncology. So, that’s what a fellow would be if you hear that word.

Residents. Most people understand what a resident is. Those are medical doctors who’ve graduated medical school, but they’re still in training to become a surgeon or a urologist or a gynecologist, whatever their specialty is. Normally, you’ll see those doctors in the hospital. They’re going to be the ones taking care of you after the surgery is over. They will very often participate in the surgery and that’s always a question. Feel free to ask if, “Hey, is the resident going to be operating on me?” You may want to know that, and you may protest if you like, but I can tell you speaking from my experience with the urologists here at Baylor, we have some really top-notch residents. They’re very, very well-trained and once again, they are medical doctors already. They’re going to see you in the hospital. So, those are going to be the people that would be rounding on you if you have a teaching facility. And I feel very sorry for you because I’ve actually been a patient in a teaching facility and it can be insanely frustrating because a thousand people come in the room.

Nurse Becci Hannigan:

Once again, I want to empower you to let them know, “I don’t want all these people in the room,” and you can say that. You absolutely have the right to say that. It can be very overwhelming. The next thing, we have the nurse. This is going to be your surgeon’s right hand. Feel free to reach out to them. Your nurses are going to be your good resources and understand that the good doctors have good nurses. So, they’re going to be probably your number one touch point as far as having your questions answered. Your nurses are going to have associate’s degrees. So, I graduated with an associate’s degree. I now have a master’s degree and I’m working on my doctorate, but you can have an associate’s degree, a bachelor’s degree, a master’s degree, or a doctoral prepared nurse taking care of you.

The next thing is going to be LVNs. You’ll hear that. An LVN is basically the same as a nurse. They don’t have quite as much education. They can do almost all of the same things that a registered nurse can do, but maybe a very specific couple of things and they’re limited at an associate degree. So, you can’t have an LVN with a master’s degree in nursing unless she actually becomes a registered nurse. These are very integral people in our team. They do a lot, a lot of work, and my opinion is they don’t get paid enough because they work just as hard as the RNs do. The next is going to be in the clinic side, you’re going to see medical assistants. Those are either certificated people or they have associate’s degrees and they have very, very specific training to work in the clinic. For example, they know how to work an X-ray machine, those types of things. They know how to run certain labs, like nurses aren’t trained how to take X-rays and do those kinds of things.

So, the medical assistant training is very specific to the clinic operation and then you’re going to have nursing assistants, CNAs, or sometimes they’re called patient care technicians. Those are the people you’re going to see in the hospital that will be helping you get out of bed and walking you. They might be the one taking out your IV, helping you get dressed. So, they’re going to be assisting in the hospital with some non-technical type operations.

Nurse Becci Hannigan:

Now, this is really important. So, who are you supposed to call when you have different problems? It can be very challenging. We give out a handout to our patients that on the very back page, it says, “If this is happening, this is who you call. If this is happening, this is who you call. “So, there’s a list that gives you a guide on whether you call 911, whether you go to the emergency room, whether you call the clinic or whether you send a MyChart message. So, for example, life, limb or eyesight, that’s 911. Please go to the emergency room. Don’t try to get ahold of us until you’re being taken care of in the emergency room. Certainly, if you are post-op like recently, post-op within two to six weeks. If you go into the emergency room really for any reason specifically with a bladder issue, it’s important that urology is consulted.

So, even if you are not in the hospital where you had your surgery, it’s very important that urology is consulted because not everybody is familiar with a neobladder or is familiar with the Indiana pouch. You have an Indiana pouch, your bladder is behind your belly button and you’re unconscious for whatever reason and they’re trying to stick a Foley up a tube that doesn’t go anywhere. That can be a little bit of a problem.  We always recommend that patients get… I was about to say life alert. I can’t think of the name. Medical alert bracelets that say that they have had a urinary diversion. This is really important because you’re not peeing. They’re going to try and get pee out of you and they’re going to stick it in the wrong hole invariably. They need to know that you have an Indiana pouch so that they can make sure your kidneys are working and draining urine, et cetera.

Administrative issues. So, you would call the clinic. Generally, our clinic is pretty big, so we have administrative people. We have people specifically that make appointments and then of course we have the clinical staff. Smaller doctor’s offices is probably going to be the same person, the nurse. There might be a front desk person, but things like appointments, you want to talk to somebody in an administrative capacity.

Financial issues. Of course, we talked about getting the number to the billing department. Please don’t reach out to clinic for that because I have no idea what your bill is going to be, why it’s so high. Most of the time, I don’t know what insurance you have unless I have to do a prior authorization and then I don’t even know what they cover. So, nurses are kind of separate from that information. We really don’t know what to expect as far as what the patient has and what’s covered. So, you need to reach out to either insurance verification or the billing department, and then we talked about the resources. American Cancer Society, your local resources.

BCAN is probably a number one resource for talking with other patients, a really, really good resource with talking with other patients that are going through the exact same thing as you. Same sex, same age, same exact diagnosis, type of cancer, muscle-invasive, non-muscle invasive. You’re going to find it all here. Some clinics are going to offer, like our clinic, we have local patients that have consented to give out their contact information, which is really nice because neobladders and females, we don’t have a whole lot of, so it’s nice to have somebody, a female that we can talk to. Oftentimes we’ll refer to BCAN, which is a fabulous resource for that kind of information.

Nurse Becci Hannigan:

Picking a team. I have a couple of resources on there. When you’re looking, if any of you are new in this bladder cancer journey, or you’re looking for a new team for whatever reason, there are a number of different resources that you can reach out to. If you’ll go to the next slide. There you go. Thank you. So, Castle Connolly is a fabulous resource. Healthgrades, vitals.com, these are the more… I don’t want to say fancy, but healthcare-specific type grading systems. You can go to Yelp. You can go to Angie’s List. There’s a lot of good information there, but Castle Connolly has a lot of very objective information as well.

Healthgrades will tell you how they’ve been graded. Press Ganey is another way. Look at that information and also read some of the responses. It was interesting, I was looking at my doctors and some of them are not really up to date. The last thing I saw in Dr. Lerner, one of them might’ve been Yelp. It was like 2017, which I think that we’re not in the Yelp crowd, but you never know. But you’ll see five, five, five, and you see this one, and that’s the one I’m going to. I’m like, “One? What’s going on? What did they say?” And most of the time it’s because it took a long time for them to see the doctor. We’re very, very busy. So, we do tend to have waits. I would ask you to consider when you’re looking at a physician what the wait time is and there’s a Goldilocks range. You certainly don’t want to be waiting three hours for a routine appointment with this physician, but I might question a doctor that can get you in really, really… or has a lot of appointments.

We overbook a lot of our patients and that’s because number one, we’re a cancer clinic. So, our patients never wait more than two weeks. A new patient will never wait more than two weeks and it doesn’t matter how busy our clinic is. We’re going to get you in and you will be seen within two weeks and the other thing is we’re a surgical clinic. So, all of our patients that have surgery have to come in within two weeks for their post-op appointments. So, very often we have to overbook. Keep in mind, you’re probably going to have a wait. Doctor’s offices. I’ve been really lucky lately. I see the VA and they actually get me in pretty quickly once I get there, but there’s almost always going to be a wait no matter where you go.

Nurse Becci Hannigan:

Healthcare is struggling once again with staff. We don’t have enough doctors. So, I just ask that you try to be as patient as possible. Ask when you make the appointment. Is the doctor usually on time? Some of us still have jobs. So, I want to be able to tell my job, “I’m going to be back in two hours or I need to take the whole day off.” Some of us have to pick up our grandkids after school, and if I have an 11 o’clock appointment, I would assume I’m going to be out by 3:00. But you know what? Ask. Ask how timely this doctor is. Do they usually run on time or how long do I anticipate waiting? That’s another thing that can be really helpful, but picking your team is really, really important. Getting a referral from your doctor, a trusted referral, and then looking that doctor up and making sure that that doctor works with you. Like I said, this is a long, long-term relationship. It’s going to be good if you guys can get along.

Lastly, I’ll say, having a good bedside manner and being able to associate with your physician and their team on a personal level is important, but I would ask that you take their competence a little more highly than their personality. Dr. Lerner, I love him. Him and I are like two peas in a pod. We have the exact same personality. He is very straight to the point. He’s ridiculously caring. He’s going to answer your questions, but if you start talking about something other than golf, if you start talking about golf, he’s going to talk to you forever.

But something that’s outside of medicine, he’s going to be like, “I’m sorry, I don’t have time to listen to that right now. I’m going to have Becci come in and we’re going to take care of this.” Very often doctors will pass off questions to the nursing staff, and that’s only because they trust their staff to answer your questions. So, try not to be too offended by that. I have seen patients get upset. “Oh, he just didn’t have time for me. Well, yeah, because he’s got 20 more cancer patients he needs to see.” So, very often you’ll get the… I call it the A-plus team. We’re not the B team. The nursing staff comes in and answers your questions, but that’s just some of my little pearls of wisdom, how you can navigate being a patient.

Nurse Becci Hannigan:

Also, I’m going to ask, and this is from a personal perspective, keep in mind that we’re human too and we’re standing in front of you at work and yes, you have cancer.

We do understand that, but keep in mind, you never know if somebody’s dad has just died and they’re still there taking care of you or maybe something’s going on with their family member. They just understand that we are there to take care of you, but at the same time, we’re human as well. So, maybe give us a little bit of break if we don’t have a cheesy smile on our face. That’s just from a very personal perspective and next slide and we are actually on to questions. I hope I gave you guys a lot of information that’s going to be helpful and I hope it stimulated questions for me. So, I’m really excited to answer any questions you guys have for me.

Patricia Rios:

First, I would like to ask Becci, again, thank you for that presentation. You went over so many great points and particularly I was trying to keep a list of the insurance, the different tests we have to get done and all of that requires being organized and so I was wondering if you could share some tips with us on how we can get organized because we have things that are in paper, things that are electronic. What is the best way that we can have all that stuff handy and be ready when we need them?

Nurse Becci Hannigan:

So, having a cancer diagnosis, any diagnosis to be honest with you, can be very overwhelming and adults, when they’re being taught, really only retain about 30% of what they’re being taught. So, if you imagine you’re going in and your doctor tells you you have an ingrown toenail and you’re being taught how to take care of it, you’re going to retain about 30% of that, but when you get the C-word diagnosis, that cancer diagnosis, it’s like you have earmuffs on. It’s difficult to process anything that is being said to you. It can be such a challenge and I watch the patients as I’m talking to them, and I can tell they’re not getting anything I’m telling them.

So, I always recommend, first of all, if you have an inkling that you have cancer, if you’re being referred to a doctor because you think you have cancer, the first thing you need to do is get a notebook because when you go to that doctor’s office, in that notebook should already be at least five questions, at least five questions that you’re going to ask. You should have somebody with you at least for that first appointment, an advocate who is able… Now, if your husband or wife is twice as anxious as you are, they may not be the best choice. You need to have a really sound mind an objective person who is going to be able to go in there and listen and truly hear the words that that team is telling you and somebody who can write notes.

I have some really incredible patients that are just tough as nails and they’re in there and you can just see that they’re just, “I’m going to fight this cancer. I’m going to win,” and they’re just intent and they’re writing everything down and you could tell that they’re really getting it, but that’s very rare. That is really very rare. Cancer diagnosis is incredibly overwhelming. So, have an advocate with you. Have questions prepared before you go to your appointment, and almost every appointment there should be a question. Write those questions down. Have a little book. Anywhere I go, I have this… I was in the army for six years and we had these little green books that we kept in our breast pockets. We called them CYA books. You can imagine what that means and it was just something that you always had with you in case you needed to write something down and I do that even to this day.

Nurse Becci Hannigan:

I’m a sticky note fiend. Sticky note’s everywhere all over my desk because when I think of something, I have to write it down so I can remember later. Always have something available in your pocket or in your purse or whatever. So, if you think of something, “Oh my gosh,” because as soon as you leave the doctor’s office, invariably the question is going to pop in your head. Write it down. This is where the portal comes into play. Patient portals, you can go, “Hey, I just saw you guys today.” Type in your little question. “Can you answer this question for me really quickly?” And then it can be answered back. So, having a book and then even using that book as a journaling opportunity.

So, it can be used by your advocate who’s writing down the answers to your questions or dates of your next appointment, but it’s also someplace where you can write down, “Becci was really sweet to me today,” remembering the valet guy, his name, so that the next time you’ve come, you can let him know. “Thank you, but you took really good care of me last time and I really appreciate it.” Those types of things. It’s good to have that information because like I said, 10, 12 years, we’re going to be best friends. So, having that book to go back on. Definitely getting medic alert is really important. Let me pull something up really quickly if I can find it. I can’t find it.

So, having organization is important. Having a book, writing notes, having an advocate is going to be really helpful throughout your journey. Lots of appointments to keep up with. Make sure with your portals that you do assign your phone to get notifications from it. That’s very, very important. All you need is a random three-year-old and they can help you set up the portal. These kids these days are really, really good at the technology. So, setting up your portal properly is very helpful as well.

Patricia Rios:

That is very true. So, there’s definitely tools available to us as simple as a notebook as well as something more advanced like the portals. So, we have a question from our audience, and this person says, “Since bladder cancer is a geriatric disease, how does one manage the ageism that you’re going to be confronted with and the older you are, the worse this is?”

Nurse Becci Hannigan:

So, interesting…interesting enough, I don’t necessarily see that unless you have significant comorbidities. I had, I think my youngest bladder cancer patient, 32. Now, this poor guy already had… He had a heart attack. He had bladder cancer. He ended up in kidney failure, got bladder cancer again, and then had another heart attack. So, I think he was way worse off than some of my 80-year old people who have had their bladder taken out and they’re still playing golf. As far as ageism is concerned, I don’t necessarily think it applies with bladder cancer, at least not in my practice in the sense that the oldest patient we took to surgery was 94 with an expectation that she’s absolutely not going to die from bladder cancer or even her surgery. So, it’s really the cardiac clearance that is going to factor in as far as your care with bladder cancer.

I have a 92-year-old lady who comes in for her bladder cancer treatments weekly. So, I don’t see it. Like I said, I don’t see it in my practice. We have a very, very broad spectrum of ages and they all do very well wherever it is that they start in. At which age? 50 or 60, 70, 80 or 90.

Patricia Rios:

Well, thank you for answering that. Now, another question. This is related to conversations with the doctor. So, this person has non-muscle invasive bladder cancer, and the only time this person gets to see and ask her doctor questions is when she’s on the exam table during cysto and this is obviously very awkward in a rushed environment and wants to know if there’s a better way to communicate.

Nurse Becci Hannigan:

So, one of the ways is the portal. So, if there are things that you want to get across, you have questions, would be the portal. The other thing is to simply tell them, “Hey, I have questions for you. Can you put me in a room and talk about this?” We do this very frequently in our practices. After we’re done the cysto, we can put them in the room and discuss things about maybe what we’ve seen in the cysto or even ask, “Hey, before I go in for my cystoscopy, can I have a few minutes with you?” That is not unreasonable to ask. Even somebody as busy as Dr. Lerner, he would be more than happy to answer your questions.

Another resource is always the staff. So, as the staff brings you into the room, you could ask them the questions. The medical assistants here are so incredible. My entire career I worked hospitals so 20 some years in critical care, I worked in the hospital. I didn’t know what a medical assistant was as compared to anybody else. I just knew that they took my vital signs at the doctor’s office and then I come here and these medical assistants are functioning as nurses, incredibly, incredibly high functioning nurses, very knowledgeable. I mean, medical assistants, very, very knowledgeable. So, don’t hesitate to ask the staff that’s bringing you into the cystoscopy room, “Hey, I have a couple questions for the doctor. Let me run them by you and see if you can help me.” If not, at least the staff can convey, “Hey, Dr. Lerner, Ms. Smith said that she was concerned about this. Can you address this after the cysto is over?” Because we are very comfortable having conversations with strange people’s penises in our hands.

We understand also that it might not be as comfortable for you to have that conversation with your penis in our hand. So, that’s something that you can always ask for a little more time and maybe even get a virtual visit. Ask if, “Hey, after this, can I just… not my cysto appointment, but I have a couple of things that I want to go over when I’m dressed. Can we do a virtual appointment?” Never hurts to ask.

Patricia Rios:

Yeah, and I like that about maximizing the healthcare team that you have there and also asking if you could speak to them after or it could be taken to another room. I think that’s a really great advice, and I think that’s the goal of this presentation is for patients to feel empowered, to be able to ask this and make these requests.

Nurse Becci Hannigan:

Closed mouths don’t get fed. So, definitely.

Patricia Rios:

We’ll remember that next time. Okay, so another question here from this person who says they heard that a PET scan is a good idea, but doctors don’t order them because insurance won’t typically pay for them. Do you think a PET scan should be done if you get diagnosed with bladder cancer?

Nurse Becci Hannigan:

So, there are different reasons why a PET scan would be done. Oftentimes it’s because things are seen on a CT scan. If a doctor is not ordering it just because he thinks insurance won’t pay for it, I would say I’d have to disagree with that. First of all, if a PET scan is warranted, insurance will pay for it and by that, I mean, you take your order to the imaging place and they say, “Hey, it was denied.” So, then there’s always an appeal. Well, actually, the first thing is they’ll ask for what’s called clinicals, and that’s going to be your doctor’s office notes, previous scans, lab results, those types of things. Clinicals get sent in. They get reviewed. Once again, they could be denied. Then you have an appeal and it gets sent up to a higher level. If that appeal gets denied, then there is what’s called a peer-to-peer.

I have in my entire five years never had a peer-to-peer denied once Dr. Lerner gets on the phone, and basically what it is is a doctor from the insurance company calls your doctor and they fight it out basically and they argue why this scan should be done. PET scans are important scans. So, I would say have the doctor order it. If he thinks that, “Well, I don’t order them because they get denied.” No, go ahead and order it for me, sir. Let me run it through my insurance and then that information is always communicated with the patient. So, it’s not something that’s done just in the back office. That insurance calls me and says that Mrs. Smith has been declined. Mrs. Smith also knows. So, Mrs. Smith is empowered to call the office, “Hey, I see here I was declined. Did you appeal it? I need you to appeal it.”

And you harass and you harass and then well, okay, the appeal was declined. Then I need you to do a peer-to-peer. One of the things you need to know about peer-to-peers is they’re very time-limited. Very often it has to be done within 24 and 48 hours, can be very challenging. So, I would say ask your doctor to order whatever tests that he feels is appropriate regardless of whether he thinks your insurance is going to approve it. Now, there are some insurances that I can tell you right off are not going to approve a PET scan. So, I know as a staff member that I’m going to have to do a prior authorization. I’m going to have to start that process early and that’s another question that you can ask your insurance company. So, what if I needed a PET scan? Is that going to be covered? And very often it’s going to go back to the coding if there is appropriate coding. A diagnosis of cancer is usually a good reason to do a PET scan because that is pretty much a number one way that we find out if anything has metastasized or spread distant from wherever the initial source is.

Patricia Rios:

Excellent. So, my takeaways are ask, ask, and don’t be afraid to ask.

Nurse Becci Hannigan:

Don’t be afraid to ask.

Patricia Rios:

Yes. Well, thank you everybody for joining us today. We have run out of time. We hope you’ll join us next month.