Webinar: Veterans and Bladder Cancer | A conversation about Veterans Administration hospitals and how they can help

November 28, 2023

Bladder cancer can strike anyone, even our US military veterans. The VA’s National Oncology Program (NOP) helps cancer patients every step of the way for their treatment.  The Veterans Administration hospitals can help diagnose and treat this 4th most common cancer in American veterans. In this webinar, BCAN’s Director of Education and Advocacy, Stephanie Chisolm and Lisa Loftis, MA Ed, BSN, RN, OCN, urology Cancer Care Coordinator at the VA Medical Center in Albuquerque, NM, discuss what to expect, and what veterans need to know when receiving bladder cancer treatment at the VA.

With Nurse Lisa Loftis

Year: 2023

Veterans and Bladder Cancer | A conversation about VA hospitals with Lisa Loftis (Part 1)

Transcript (PDF)

Veterans and Bladder Cancer | Q&A Session with Lisa Loftis on VA hospitals (Part 2)

Transcript (PDF)

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Full Transcript of Veterans and Bladder Cancer | A conversation about Veterans Administration hospitals and how they can help

Stephanie Chisolm:

Welcome to Veterans and Bladder Cancer, a conversation about the Veterans Administration hospitals and how they can help.

Stephanie Chisolm:

The Veterans Administration National Oncology program or NOP helps cancer patients at every step of the way through their treatment. My name is Stephanie Chisholm and I’m the director of Education and Advocacy at BCAN, and I’m delighted to introduce you to oncology nurse Lisa Loftus. She’s the oncology urology cancer care coordinator at the VA Medical Center in Albuquerque, New Mexico. Before joining the VA, Lisa worked at the University of New Mexico Comprehensive Cancer Center where she specialized in hematology and urologic oncology. She earned her master’s degree in education at Tennessee Tech University and her Bachelor of Science in Nursing at the University of New Mexico. She’s an oncology certified nurse and an active member of the Oncology Nursing Society or ONS. So welcome, Lisa. It’s a pleasure to have you here.

Lisa Loftis, RN:

Thank you. It’s good to be here. I’m excited about this.

Stephanie Chisolm:

Yeah. So if you would like to put your slides up, I think one of the first things we’d like to chat about is understanding what puts veterans at greater risk for bladder cancer. What are some of the behavioral, environmental, or even occupational factors that can lead to bladder cancer in both the veteran and active duty communities? What are you seeing?

Lisa Loftis, RN:

I want to first of all say that smoking, tobacco use is something that we always think of as affecting your lungs, but it is a very big problem for bladder cancer. It increases the risk because of the carcinogens in the tobacco and then that is filtered through the blood or enters the bloodstream and is filtered through the kidneys and then it collects in the bladder. And exposing the bladder to high levels of these dangerous chemicals can ultimately change the DNA in the cells that are lining the bladder.

Lisa Loftis, RN:

And so it is a huge risk factor for bladder cancer and even stopping after you get bladder cancer can increase the chances of more successful treatment. Another thing is increased age, and that’s true with almost any cancer. As we get older, we have changes to our cells that can lead to a cancerous response and can increase our risk for a variety of things:skin cancer, bladder cancer, and a number of others. If you have a family history of bladder cancer, that’s going to increase your risk and especially if there are certain genetic variations that run in families that can be linked to increasing your chance of getting bladder cancer.

Lisa Loftis, RN:

Interestingly, extended urinary catheter use can increase risk for bladder cancer. Sometimes catheters are absolutely necessary, but if you’ve noticed when you’re in the hospital and they use a catheter as a temporary thing, they try to remove it as soon as possible. If you’ve had previous cancer treatments, maybe radiation or chemotherapy in the same area, that can increase your risk for bladder cancer later. Environmental factors such as arsenic levels in water, for example, well water, even water treated with chlorine like in our municipal areas, that can increase the risk for bladder cancer. An unusual thing that we don’t see very often, in fact, I don’t think I’ve ever seen it, but certain parasites in maybe the Middle East or Africa can increase your risk of getting bladder cancer.

Stephanie Chisolm:

Yeah, that’s probably a greater risk for people that might’ve been stationed in some of those locations. That parasite is known as schistosomiasis and part of the problem is it gets into the human urinary system and lays eggs that then can be an irritant that can cause bladder cancer at a later time. So suppose when if you were stationed in the Middle East or parts of Egypt, that might be a significant problem. Absolutely. You mentioned a few other things too in terms of the environmental exposures. These are things like arsenic in the water that could be impacting everybody, not just the veteran community, but we do know that the veterans who were stationed at some point at Camp Lajeune or veterans who were exposed to PFAS firefighting chemicals as part of their job in the military, those veterans are at greater risk as are veterans who were exposed in Vietnam to Agent Orange or any of the rainbow of herbicides that were used to kill foliage. They have greater levels of arsenic and other chemicals in them, and it is presumed to be caused by Agent Orange exposure.

Stephanie Chisolm:

And one of the things that BCAN is making part of our advocacy efforts for 2024 is we believe that in the PACT Act, which is designed to look at environmental toxins with veterans of modern warfare, we think that somehow they just forgot to put bladder cancer on there because kidney cancer is on there. So, BCAN is working very hard for the next year to really make sure that we can get that straightened out so that burn pits also include bladder cancer as a presumptive condition so that veterans who might’ve been exposed and have been stationed in places where the burn pits were happening right near their bases or in their bases would be eligible for disability benefits that would cover under that PACT Act.

Stephanie Chisolm:

So we want to make sure that if you’re interested in being part of that, we’re going to drop the link to sign up for our veteran advocacy into the chat box at the bottom of your screen. But I think that it’s really impactful. I know you mentioned the catheter use and I don’t know, Lisa, this is just me asking a question because I’ve been in this business for a long time. When you are caring for oncology bladder cancer patients, do you have a lot of patients that might have long-term catheter use because of other disabilities that are related to their service? Is that something you see? Is that a trend or am I just jumping ahead of the gun here?

Lisa Loftis, RN:

Catheter use is not something that would generally be like an automatic requirement for bladder cancer. Most of our bladder cancer patients who have catheters have them because of other comorbidities.

Stephanie Chisolm:

Right. And so that was where I was just thinking is it because they had another morbidity, another problem, a disability that they needed to catheterize that put them at greater risk for bladder cancer?

Lisa Loftis, RN:

I don’t know that they would’ve had long enough term use of the catheter for that to be the cause of their bladder in the case of the patients that I see, but very extended use perhaps over maybe a decade. That’s going to cause irritation, that’s going to cause things that will disturb the cells in the bladder lining. But short-term use or fairly recent starting of the use of a catheter is probably not what’s causing the bladder cancers that we’re seeing here. I think most of ours are probably service connected or perhaps genetic.

Stephanie Chisolm:

Okay, thank you. I appreciate that. So we know that the common signs of bladder cancer are hematuria or blood in your urine. It can be microscopic that shows up when you do a urine test when you go into the doctor or it could be what we call gross hematuria where you really can’t help but see blood in your urine. It also includes urgency and frequency. Once somebody’s having some of those experiences, would they go and be diagnosed at the VA center or do you find that most of the veterans that you are seeing for treatment were actually diagnosed outside the Camp Lajeune?

Lisa Loftis, RN:

What we typically see is that someone will come to the VA to their primary care provider or to the emergency room because of the gross hematuria, and at that point there will be a suspicion that it needs to be looked into more closely. So they will send a referral to our urology clinic here at the VA and we will schedule them. And at the time they’re scheduled, we go ahead and generally set up a cystoscopy so that we can get a better idea of what’s causing this and see if we see any lesions inside the bladder that we might need to biopsy.

Lisa Loftis, RN:

If things look suspicious, then we will schedule an operating room visit for them to actually obtain the tissue for the pathology and then we can have them come back and we’ll discuss the treatment options that they have. As far as the microhematuria where they don’t notice it but someone else does, that usually comes from just some routine lab work, just a urine test or something that maybe the primary care is doing and they’re checking perhaps for something else. They notice the blood in the urine and then again, a referral is usually initiated for the urology clinic just to check it out. Everyone who gets referred to us for blood in the urine is definitely not diagnosed with bladder cancer, so it’s not something for someone to have undue concern about, but they do need to keep the appointment if it’s scheduled.

Stephanie Chisolm:

Absolutely. So once they come into the VA, I know on your next slide you talk about some of the different options that are available at VA facilities.

Lisa Loftis, RN:

There’s no routine screening test for bladder cancer like where they can do a blood test or something and say, oh, you’ve got bladder cancer. But while there’s not routine things, you can still have screening to try to catch things early and those screening are going to involve generally checking urine, doing cystoscopies, there’s even urine cytology that can be beneficial. That’s where they check your urine for abnormal cells and see if any of those seem to have cancerous properties. And so there’s a number of things like that that are looked at.

Lisa Loftis, RN:

If cancer is detected, you might have surgeries to remove any lesions that are found. You might have treatment such as a chemotherapy or an immunotherapy. Many of those are intravesical, which means that instead of having systemic treatment where you have an infusion and maybe chemotherapy goes throughout your body, and a lot of times that will result in hair loss and nausea, vomiting, the things we typically associate with chemotherapy treatment, with this type of treatment, because it stays within the bladder, you don’t usually have those same side effects.

Stephanie Chisolm:

So, oftentimes, especially when people have what we call non-muscle invasive bladder cancer and it’s treated within the bladder, the medication is put right up there next to the tumor, and as you just pointed out, you don’t get the same effects that you get with systemic chemotherapy that goes in through one of those ports into your veins and it travels around your body and that’s where people get hair loss. And I think that’s one of the issues that kind of sets some bladder cancer patients apart from other cancer patients in that they don’t look like they have cancer because they don’t have any of those typical characteristic chemotherapy side effects. And so that’s what makes it sometimes a little more challenging because they are still fighting a cancer and they’re still going for regular treatments just like all bladder cancer patients are being treated.

Stephanie Chisolm:

And that’s where it becomes really hard because people say, well, I thought you got this treated, and even though the treatment may take a number of months of these intravesical in the bladder treatments and then routine follow-up every year to make sure that you maintain the protection that those treatments have provided, it’s a little bit hard because patients themselves still know that that cancer’s there, but everybody else. So it makes it a little bit more of a challenge.

Stephanie Chisolm:

So, essentially, really all of the treatments that are commonly available in any of the large hospitals or even in the community practices that are not military are provided at the VA.

Lisa Loftis, RN:

Yeah.

Stephanie Chisolm:

But now the oncology program, the National Precision Oncology Program is a separate thing that’s really focused on veterans with cancer and it provides a lot of other services. So what are some of the other things that are available through the VA that I think perhaps some of our participants might not even be aware of?

Lisa Loftis, RN:

The VA offers the treatments for bladder cancer, but any kind of oncology patient can benefit from nutritional assistance. We have referrals that we can make for our nutritionists, including the recent edition of oncology nutritionists who are specially trained and certified to work with oncology patients to increase the body’s ability to respond to some of these treatments and to help them as they’re fighting the cancer. We also have physical therapy of various types that we can refer people to here within the VA or for something more specialized or if there’s too long of a wait time, we can refer them out to the community. Our urologists often do sexual health consultations. There are a number of things that can be offered depending on any side effects or any issues that a patient has, whether it’s related to their bladder cancer or not. We also have mental health counseling.

Lisa Loftis, RN:

We have social workers. The social workers can assist with transportation, setting up transportation to appointments or maybe arranging lodging for someone from out of town who’s coming for treatments. They can also help with things that aren’t related directly to their bladder cancer. If there’s benefits that are available to veterans in general that these patients could benefit from, the social workers can make them aware of that and help set them up for that.

Lisa Loftis, RN:

I’m going to go back a slide for when the VA sends veterans to physicians in the community. We offer many, many treatments here, but there are times that we refer to our partners in the community and that’s if there’s too long of a drive to get to the treatment here in Albuquerque. We are in New Mexico. It’s a very rural state, very large state geographically, and sometimes our veterans just cannot make it to Albuquerque for the frequent treatments that they would need.

Lisa Loftis, RN:

So we will contract with partners in the community who will provide this. Then once that is finished, if they prefer to come back to the VA for their less frequent follow ups, we can do that or we can renew the contract and let them continue to be seen in the community if the distance is too much of a barrier.

Lisa Loftis, RN:

Also, we sometimes have scheduling difficulties, not generally for treating bladder cancer, but maybe for imaging that we need to see perhaps if the cancer might’ve spread or other imaging that might be needed. Sometimes we’ll have a machine that’s down or we’ll be behind a little bit for one reason or another. If we can get it done more quickly in the community, then that referral is made because we want to get the best and the most timely treatment for our veterans that we can.

Lisa Loftis, RN:

There are also times when the VA does not offer a treatment that might be necessary. For example, if radiation oncology is needed for a particular cancer, we don’t offer that at our Albuquerque VA location, so we would be able to do a community consult for that to occur. And then once it’s finished, they could return to us. We can certainly do the follow-up, we can do the cystoscopies, we can do the blood tests, we can follow anything else but the actual, some treatments we do not offer, so we send those to the community.

Stephanie Chisolm:

So you’re doing a lot of care coordination in terms of making sure that the veterans that come in through the Albuquerque VA have access to all of these things. I wonder, is there somebody like you in each of the VA centers or is it dependent on the fact that maybe Albuquerque is a larger center or what do people do across the country within the VA system? Is there always going to be somebody who could do what you do for the veterans that come into their local center?

Lisa Loftis, RN:

I think more and more of the VA medical centers are making sure that they have cancer care coordinators for various clinics and sections. I know that we have… I just do urology. We also have cancer care coordinators for other areas of need, and I think this is becoming more and more common throughout the VA system. Cancer tier coordinators, as far as I know, are not in the C Box, the community-based outpatient clinics, like where they might be able to go for their primary care. We don’t have cancer care coordinators in those, I don’t believe, but in the medical centers we are pretty prevalent. It’s something that you can actually just call the main number and ask to speak with the cancer care coordinator. If there is one, the operator should be able to put you right through. Sometimes they don’t know which coordinator does which specialty, so they might put you through to the wrong one. We all kind of know each other, so we will help guide you to whoever you need to speak with.

Stephanie Chisolm:

Yep. That was going to be my next question. So how do people find you wherever they are? How do they find one of your colleagues? So that’s the perfect thing. So they should just call the main number and ask for the oncology coordinator or somebody who’s doing something like that?

Lisa Loftis, RN:

Yes, and if there’s not a cancer care coordinator, a nurse navigator can often offer some similar services, and I think there are nurse navigators at every location.

Stephanie Chisolm:

Good to know. This is really good information to know. I think part of the challenge, of course, is what you already pointed out. Sometimes the VA center is not near where the veteran has retired and is living currently. And that’s where it becomes a bit of a challenge to get to one of those centers. But once they do get there, then it’s great to know that the National Oncology program and then the Precision Oncology program are available. Is there a difference between the National Oncology program and the Precision Oncology program?

Lisa Loftis, RN:

There’s a little difference. They work together. One is a little more focused on specific programs. The other one is just kind of like the overarching umbrella for that. We don’t personally have a lot of involvement with the NOP or the NPOP. We tend to, for clinical trials and such, that tends to happen through one of our community contracts that we have with a local state university that does a lot of research. And so we tend to keep things a little more local and we don’t end up using the national, but in other areas, that’s a very big resource for places that don’t have the same access to clinical trials that we do locally.

Stephanie Chisolm:

So even veterans who are being seen in the VA, if they’re interested, should ask about a clinical trial. Because there may be a way to refer. Sometimes people always think about, well, a clinical trial, I don’t want to be a guinea pig, but we know that clinical trials give you a few things. First of all, you get much more stringent observations, so they’re monitoring you very carefully. You might have access to something that might be very promising that is not currently available to the general community, and they’re definitely giving you an opportunity to access something and be monitored. So it’s considered very safe to be in a clinical trial. You have the option always to get out should you choose to stop being in a clinical trial. So if you’re interested in doing a clinical trial, you should even ask your VA doctors.

Stephanie Chisolm:

I know that a number of the doctors that BCAN works with on a regular basis at some of the large academic teaching hospitals around the country have dual appointments in their local VAs as well. And so they may be doing something at the university of such and such medical center, but they might also be treating patients of theirs in the VA and maybe they can also help to get them involved in a clinical trial that way. But if you don’t ask, you don’t find out. So, this is great. Any other comments that you’d have before we open it up to questions?

Lisa Loftis, RN:

Veterans who have participated in clinical trials are not doing it sometimes just for themselves, but also for other future veterans who might benefit from things that are learned from the trial. And I’ve found that our veterans are very giving and interested in serving others in that way. And a clinical trial is certainly another good way they can continue to give back to others.

Stephanie Chisolm:

Okie doke. Well, there’s one comment that came in. Please stop saying that bladder cancer is not a presumptive condition. We know that it is. It is just not necessarily included under the PACT Act, and that’s one of the things that BCAN is really trying to do because we know that some veterans are able to get coverage when they’ve been in, what they call, the modern warfare situations where they’ve been exposed to things like burn pits, but it’s not a simple thing. You have to come up with all kinds of paperwork and all kinds of proof and everything. So we’re really working to try to make that a little bit easier to make sure that, just like exposure to Agent Orange as a Vietnam era veteran, if you were in country, it’s presumed that your bladder cancer might have been related to that. So you get the coverage. We want to make sure that it is in fact covered. So that’s a big deal for us.

Stephanie Chisolm:

There was a comment that said you left out the negligence at Camp Lejeune with poisoning Marines and dependents. Yes, that was one of the things we talked about. I talked about it very briefly, but yes, that is certainly one of the key issues. The things that were contaminating the water supply in that whole area impacted not only our active duty members, but also their families that were stationed there that were showering and drinking all of that water. And certainly you can’t open your email without seeing something about a lawyer that’s trying to get you what you deserve as a result of that. But we know that that is something that there are funds out there available to do that, and there are many occupational exposures that veterans would’ve had, even sometimes working in buildings where there’s a lot of engines running, things like that have led to many different kinds of cancers.

Stephanie Chisolm:

And so all of these things need to be documented and corrected by the VA because people have done this because they were doing their jobs, and it’s unfortunate that all of these situations have led to cancer that they might not have been exposed to those particular things. So I’m just looking to see if there’s any questions. I see a number of people have put in some fact sheets, so thank you. We’ll look at those fact sheets and if they’re really going to be helpful, we can add them. There is a question, do you know, does the VA do any genomic testing when they suspect that there’s a genetic link, something like perhaps Lynch syndrome, do they do the genomic testing on the tumor right in the VA or do they have to send you to another institution for that?

Lisa Loftis, RN:

I believe here at our VA we can actually take care of obtaining what’s needed and then we send it off for the interpretation, and that takes a few weeks. But yes, that is something that we do offer.

Stephanie Chisolm:

There’s another question about blue light cystoscopy, which uses a medication called Cysview that’s put into the bladder that soaks into the tumor itself. So when they turn on the blue light on the cystoscopy camera where they’re shining the light inside the bladder, they can see the tumor glowing hot pink. It’s expensive. Is it in many of the VAs that you know about?

Lisa Loftis, RN:

We do not have it here, and I do not personally know of a VA that has it, but that’s not really something I had looked into to see if I could find one that does. So that’s an interesting thing that I’ll look into further.

Stephanie Chisolm:

Yeah, I’m going to venture guess that it is slowly gaining in popularity around the country, but even there aren’t always in a large academic teaching hospital blue light systems because it is expensive. And if they’re not seeing a benefit to doing that, they wouldn’t necessarily do that. A lot of urologists will tell you that I can see everything just fine with a regular cystoscopy. They also have narrow band imaging, which looks at different types of blood flow to indicate where a tumor could be. So it really is very much an expensive treatment option that is not available everywhere. So I’m not sure. It would certainly be something to ask your VA system about. So if you had a question, find out if they do have it, but I don’t know that they have it in every VA system certainly.

Lisa Loftis, RN:

We definitely don’t have it here and I’ve not heard of it being anywhere else.

Stephanie Chisolm:

Okay. All right. Let’s see. I had muscle-invasive bladder cancer treated through a clinical trial outside the VA. Now that I’m under monitoring with a neobladder, so their bladder was removed. They have a neobladder. The VA provides me with diapers for my incontinence at no cost. Is there anything else the VA might be able to help me with and who do I talk to about other possible VA cancer-related benefits?

Lisa Loftis, RN:

That would probably be something a social worker could help with, and that social worker could be contacted through the primary care provider at the VA or through urology. And they should be aware of programs and how to get that set up and get it started.

Stephanie Chisolm:

Okay. All right. Here’s a question, and this applies not only to where this individual is, but almost anywhere. Is there anything I can do here in Atlanta to help vets get the information from BCAN? Absolutely. That’s really easy. BCAN is willing to send information anywhere. What we need to just do is find out where to send it. So, if you’re interested in getting a starter pack of materials to take to your local VA where they can order more information free of charge, we’d be happy to send that to you.

Stephanie Chisolm:

Looks like Steve was saying that the Milwaukee VA has something, and I’m guessing maybe it was about the blue light. I’m not exactly sure. So I think are there any other questions that the people online have? Yes, Steve, thank you for clarifying. So, it looks like there is a blue light cystoscopy available in Milwaukee, which is a little bit of a drive from Albuquerque.

Lisa Loftis, RN:

But sometimes we have patients who are willing to travel. Sometimes we can even assist with the travel depending on the qualifications and the needs.

Stephanie Chisolm:

Great. Great. Well, that’s really good to know. And again, so think about this, look for in your VA system, the cancer coordinator, especially the one that’s dealing with urologic conditions, and that person should be able to make a referral to the social work department or perhaps some of the other services that might be available to you within the VA. So, any closing comments? Lisa, do you have anything else you wanted to share because this has been really helpful.

Lisa Loftis, RN:

I just want to say that the cancer care coordinator certainly can’t do everything and doesn’t know everything, but we’re a wonderful starting place because the things we don’t know, we have a lot of resources and people we can reach out to. So the biggest benefit is instead of calling and trying to figure out who to talk to and talking to someone different each time you call and not getting anywhere to actually check back to follow up, by finding the cancer care coordinator, you’ve got a one-stop shop. Whatever I don’t know, I try to get those answers for you and then I call you back with it. I also tell my patients, if you’ve not heard back from me in the amount of time you would hope, don’t be afraid to call again. Maybe I don’t have an update for you, but sometimes you just need to hear that. And I’m happy to take calls, happy to explain things and happy to, if nothing else, just be frustrated with you until we can get it figured out.

Stephanie Chisolm:

Great. And if it’s a big thing, it’s a national thing. BCAN is here and we know that Vietnam era veterans are covered because of that presumptive condition that they were exposed to Agent Orange or one of those herbicides, and then that would give them the benefits that they’re entitled to because of that exposure to these toxins. We’re working to try to make sure that the PACT Act where it’s looking at environmental toxins in modern warfare includes bladder cancer. That’s on our agenda and a promise we’re trying to put out there for our veteran community to make sure that we want to ensure that you also are getting the care that you need and the services that you need. Other than that, the environmental exposures at places like Camp Lejeune are pretty well documented and you just have to go and seek care. This has been really informative.

Stephanie Chisolm:

I did not realize there were as many services as you’ve mentioned at the VA. I know some of the bigger hospitals often have other programs and services, even things like massage therapy and exercise and things like that. It’s nice to see that some of that is coming to the VA and being implemented at the VA for our most vulnerable that have given so much and then end up with bladder cancer as a result of their service. So it’s wonderful. Thank you, Lisa. This has been terrific.