Transcript of I Am a Triathlete and a Bladder Cancer Patient Part 1

Listen to Parts 1 and 2

Voice over:

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit bcan.org.

Rick Bangs:

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for, by and about the bladder cancer community. I’m also survivor of muscle invasive bladder cancer, the proud owner of a 2006 model year neobladder, and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network, or as many call it, BCAN, producers of this podcast. This podcast is sponsored by the Seagen-Astellas Alliance. I’m pleased to welcome today’s guest, Damon Thomas. Damon is a triathlete who has worked in the financial services industry his entire career. He was diagnosed with bladder cancer during the pandemic in October, 2020 at the age of 58. Welcome, Damon, and thanks for joining our podcast.

Damon Thomas:

Thank you for inviting me, Rick.

Rick Bangs:

So I want to start with your diagnosis because there’s a fairly lengthy gestation here, and we’re going to go back in time to New Year’s 2018, and something happened. So what happened?

Damon Thomas:

Oh my gosh. Well, woke up that morning and went to the bathroom and saw, in addition to my urine, was a clunk of clotted blood. Unfortunately, I’d seen it before the previous New Year’s. For some reason, every New Year’s Day, that morning, I had seen some blood, but not throughout the year. And so I didn’t really think much of it.

Rick Bangs:

So two years later, and you’re having your annual physical ’cause nothing happened between the New Year’s and the physical, is that right?

Damon Thomas:

No, I hadn’t seen any blood in my urine before. Not that I was looking for it at that time. And even when-

Rick Bangs:

Hoping not to see it.

Damon Thomas:

No, of course not. And the few times, the two times I recall seeing it, I’d had a lot of champagne the night before. So my correlation was I had maybe a little bit too much champagne and that I was dehydrated, and that was a result of it. However, during a routine annual physical, I just casually mentioned that exact same scenario to my primary care physician, and he thought we should probably run some tests to see if there’s actual blood in my urine, and this is where the journey begins.

Rick Bangs:

So at that point, you’re referred to a urologist?

Damon Thomas:

So my primary care physician at that time decided to, we ordered a urinalysis test, came back negative. He was a still concerned, referred me for ultrasound. So I had an ultrasound test that was clean. Met with my primary care physician again, and he suggested just to make sure absolutely rule out everything, that’s what he used, everything, didn’t mention bladder cancer. Referred me to a urologist who I scheduled and met with shortly after that appointment. I didn’t delay it, I just wanted to go through that process. I wasn’t thinking anything, thought I was still healthy and met with the urologist.

Rick Bangs:

So then the urologist does some testing and the results are negative, right?

Damon Thomas:

Yes. So that was a really interesting meeting, going to the appointment, expecting to hear negative. This is a real big inconvenience. I’m in the doctor’s office, I meet with the urologist and have a standard urine test, and he, it was a male, he also saw that it came back negative and wanted to rule out everything and mentioned that I should have a cystoscopy. And I wasn’t familiar with a cystoscopy examine or what that meant.

So in trying to create some type of rapport and having just kind of a casual conversation, the two-way conversation was really one way. Me engaging with him, and he’s not really that interested, and my jokes kind of fell flat. But when I asked to describe it, and he told me, “It’s inserting a catheter into your urethra, and we kind of go in with a camera and we take a look and see what’s in there.” And I told him, “That’s the most barbaric procedure I’ve ever heard.” I asked him, “Was this outpatient?” He said, “No, it’s done in the office.” And I said, “Okay, well, I will follow up with you, schedule an appointment and come back,” which I didn’t.

Rick Bangs:

Okay, which you did not. Okay. So now the pandemic arrives and things get crazy for you and everybody else, and it’s, I believe, over a year later, and you’re back at primary care, and she says?

Damon Thomas:

So it’s interesting timeline. So we’re going into 2020. I met with our primary care physician December of 2019, and all the tests that were ordered, as I just described, all began from January, 2020. So I had this window between January 20th through the middle of March, which is when the pandemic started. So I’m with the urologist and I wasn’t looking to proactively have this exam. I thought I could just push it out to the end of the year, pretty routine and have that taken care of. I changed primary care physicians, and she had seen that the tests had been ordered and strongly urged me to have the procedure done. And being the well aware person of what’s happening in the news with Covid, I expressed my concerns of being in any doctor’s office at this point and wanted to just kind of wait. However she described the procedure and just recommended I have it outpatient.

She said it’s something you need to do, schedule as an outpatient procedure. So this is all of our March conversation. I had a subsequent meeting with my primary care physician that later in the spring around May, she had brought it up again. I hadn’t reschedule. What really kind of forced me to schedule it was that I had applied for additional life insurance as part of my estate planning, and I was aware of the order, but I really thought I would just kind of skate through underwriting and they wouldn’t see that this test hadn’t been performed, but it was caught and I needed to schedule it. Again, thinking this is going to be pretty routine, no big deal. Contacted the urologist office, scheduled the cystoscopy, but I requested an outpatient procedure as opposed to an in office procedure. Still barbaric, I didn’t want to feel anything. I thought this was horrendous, and that’s when this journey began.

Rick Bangs:

Okay, so you have the cystoscopy. So how does it compare with your expectation?

Damon Thomas:

Well, it was an outpatient procedure, and there’s all the protocol at that time with Covid and entering in hospital, having to have a Covid test, which was not comfortable at the time with the swab through the nasal passage. Yeah, that type of thing. And I’m still thinking there’s no way that can compare to having anything inserted in my urethra for an exam, so. However, I was out and I went in to surgery and came out and the physician said, “We found a three centimeter tumor and we’re going to send the slides out to pathology and get the results, and I’ll follow up with you. It’s about the size of a quarter.” Again, I’m thinking, “Okay, nothing.” Cancer was not in my thought process and wasn’t even thinking that would be a possibility.

Rick Bangs:

But you also had some complications. So walk us through what happened and how you navigated those complications.

Damon Thomas:

Yes, so it didn’t stop there, actually. So I had the outpatient cystoscopy with white light. So for those of you who have been diagnosed with bladder cancer, you’re aware there’s a white light, which is standard and blue light. So that was a standard cystoscopy with white light. Unfortunately, there was still bleeding that was occurring from the procedure. So the next day I was in surgery again, and it was a removal of quite a bit of blood from my bladder that had been building up. So I hadn’t been able to really pass urine after the exam. So that was pretty uncomfortable. So that was complication number one. That was not a good sign. As I call complication, I know you’re alluding to physical, but I’m just kind of going through the complications of my experience.

So I had the follow up with the urologist that performed the surgery, get a phone call about a week and a half later, “Have some news for you, you have bladder cancer.” And he said, “It’s non-muscle invasive bladder cancer.” And he went through the technical name of the actual diagnosis. He said, “Yes, it’s usually treated with BCG for a few weeks, and we’ll just follow up and kind of see how it goes.” I’m almost repeating verbatim how he described it. I had many questions, and after the third question, which are really short, very direct questions, he rushed me off the phone. I wasn’t happy with that. I had this diagnosis of cancer. All I’ve told is it’s non-muscle invasive, treated with a little BCG, not sure what that is, and got off the phone.

So it was a pretty unpleasant and shocking experience in the matter of two and a half weeks from going in, feeling okay, expecting to just get an all clear sign that, “Hey, you have cancer, we’ll treat it nonchalantly with a little bit of BCG and see how it goes from there,” which wasn’t comforting to me and didn’t sound very professional. And that’s where my search for a new urologist, new physician began. And after some research, I discovered a nurse navigator that became really the foundation of my source of information and guidance in this process and how to create a proper team and begin the journey.

Rick Bangs:

And we’re going to come back to that because that’s somebody that the BCAN audience, our listeners would know, and she’s been a guest here, so we’re going to talk about that. Okay, so what happened next?

Damon Thomas:

Well, what happened next was a mad search to get information, but even prior to that, I needed to break the news to my family. I compartmentalize very well. So I approached my wife, told her I heard back the results of the exam. And I just told her, I said, “Diagnosis was bladder cancer.” There’s no beating around the bush. And it’s just very direct. And she was devastated. And from her crying to my crying and then letting her know that I would give my brother a call who is also a key member of my team. My brother’s a physician, and reached out to him, but we needed to speak to our children and letting them know, and everyone’s emotional, everyone’s thinking, the worst. “Are you going to die? What’s the treatment?” I’m thinking this. So, and I think a lot of people have that. I mean, I think that’s a really common reaction.

And so once that subsided in terms of that immediate shock, it just began methodically going back to the doctor’s office who did the procedure, getting the physical lab results, all the notes from the surgery, sending that out to my brother to send out to his team that he works with, letting them know what the recommendation was and trying to make sure that was the proper treatment. And also looking for a new physician. And I live in the Washington DC area, and I am still thinking someone who is an expert in bladder cancer. I’m still thinking urologist. I’m not even thinking a National Cancer Institute facility. I’m still thinking, “Okay, get a great urologist.”

And so I found one who fit the criteria I was looking for, someone who was very active who ran half-marathons, yoga. And I met with their academic credentials and all of that lined up what I felt was pretty stellar. And I did some additional research. Met with her, my wife and I met with her. I had a list of questions, and I proceeded with an interview process with her and decided to go with her. And what stood out with me besides the fact of her academic professional and involvement with running, was the fact that she sat there and listened intently, answered my questions directly, looking me in the eye, admitted what she didn’t know based upon my question, and also laid out a plan of attack. Which was to treat this aggressively and having a TURBT procedure. And while there, introducing gemcitabine as a proactive approach to kill any cancer cells. And after that, if it’s once confirmed that it is actually bladder cancer, which there was no reason to dispute the pathology at the point, began the swab process.

It was a high grade non-muscle invasive bladder cancer. So we were treating it on the swab protocol. And so that was the first week of December. I got the results back from the TURBT and scheduled my first BCG treatment. I believe it was right before or immediately right after Christmas. It was definitely before New Year’s.

Rick Bangs:

Okay. So now you go and you have your BCG treatments. And how did those go?

Damon Thomas:

It was scary. However, the nurse at the urologist’s office that was taking care of me was very thorough, very gentle, explained everything, that it was going to be a little uncomfortable. And that whole unknown, I mean, it’s one of those experiences that you have no idea what it’s going to feel like until afterwards, and that which allows you to prepare yourself for the subsequent follow-up procedures. So I was tense, I was nervous. I tried my best to relax. I realized that it wasn’t as painful or difficult as I thought it would be. It wasn’t fun. But I managed through it, and the journey began. I began with following the scheduled treatments every six weeks.

Rick Bangs:

So in terms of side effects, what was your experience?

Damon Thomas:

My experience with side effects is probably milder than most of the side effects I see that are on the community chats and the blogs. If you’re looking to find out what should I expect from a BCG treatment, what would those side effects be? And in my experience in looking, searching for that information, it was all very doom and gloom. A lot of blood, a lot of uncomfort, not able to contain it. And maybe they were older, I’m not quite sure. However, for me, the actual process went fine. One of the side effects is having flu-like symptoms and chills. And that’s actually what I had experienced.

Prior to my first BCG, I actually reached out to BCAN and asked to speak to someone who had bladder cancer. So there was that survivor to survivor program, which I’m also now a part of. But I was assigned a survivor to survivor and had several conversations about his experience and what to expect. And so that prepared me for that first session. So throughout my entire BCG experience, and I went through BCG for a year and a half on a regular cycle. I, like clockwork, would have the installation around 9:00 AM anywhere between eight or 9:00 AM. By four o’clock that same day, I would start to feel, get chills, have a slight fever. By noon the following day, physically, in terms of that type of discomfort, was gone. I felt more like myself. I didn’t have any of those experiences.

So I didn’t have the excess bleeding, I didn’t have any burning or discomfort in my bladder. I was able to relieve myself and just flush my system with water throughout the day and carry on. But because I knew I was going to have the chills every day, I had my blanket and my appetite wasn’t there. So I typically had soup, maybe a baguette, maybe a little light fruit, and that would be my meal for that day, that evening.

Rick Bangs:

Oh, wow. Did your urologist refer you to BCAN? How did you find BCAN? On your own?

Damon Thomas:

On my own. So after diagnosis, I saw BCAN on the website, but I didn’t really go beyond that. I just saw it and didn’t go deeper. And once I connected with Karen Sachs, my nurse navigator, which by the way, in the Washington DC area, we’re fortunate there are other cancer facilities in the area. And there’s a facility called the Inova Schar Cancer Institute. That also came up in my research. And there were a lot of resources that were mentioned, and that’s how I found Karen, my nurse navigator. And from Karen actually referred me again to look at BCAN. And so that’s how I found BCAN. And then I recognize that as the most credible source. And even to this day, that is the most credible source as a nonprofit around bladder cancer that I felt very comfortable with taking the information there, formalizing questions to be able to speak to my new physician or during office visits or check what was explained to me, the doctor’s office with care, and also back on the website.

Rick Bangs:

All right. Now you’re a triathlete, non-smoker, as I recall.

Damon Thomas:

Never smoked.

Rick Bangs:

Never smoked?

Damon Thomas:

No.

Rick Bangs:

African-American male. So you don’t fit the typical profile. So are you aware of any risk factors that you may have had relative to bladder cancer? Or is it like, in my case, a big mystery that will never be solved?

Damon Thomas:

Unfortunately, I think it’s a big mystery that was never going to be as solved during my lifetime. I did not fit the ideal candidate or the typical candidate of bladder cancer. I wasn’t white. I wasn’t an older white male, hadn’t smoked. But as I think back about how I possibly could have been exposed, I don’t know. I worked my way through undergrad, had a lot of different jobs, and two of those were as I worked in a lab, I started out as a chemistry major and switched to economics. So, but that allowed me to leverage what skills and ability and personality to land a job, to be able to pay for school. But I followed all the protocol. I wasn’t exposed to harsh chemicals. So I don’t know. I really don’t know.

But what I do know is this, the BCG, how it impacted me in terms of training for triathlon or just physically, it did impact my performance. I was in a few group workouts, triathlon coach I had at the time, had noticed a difference in my performance. I could physically feel a difference in terms of completing workouts. It was definitely a lot more effort there. And it also interfered with the amount of time I was typically training. So I trained six days out of the week, some weeks at seven days out of the weeks, either swimming or running or biking. And on scheduled days at BCG and the day afterwards, I had no activity. And we also scaled back the load factor, the intensity factor of the workouts for the following week or so, and just kind of slowly ramped it back up. I never got back to full training, a hundred percent training workload while I was under treatment. Just didn’t want to stress the body, and which again, had the impact.

Once I finished with BCG, I was right back to my regular self, completing the workouts and didn’t have the same type of side effects and performance. So I believe there’s a correlation, but there haven’t been studies to define that. And I see other athletes on the BCAN website or in other cancer publications who are doing great things athletically and competition wise or just casually, recreationally, and they’re living happy, fulfilled lives. And maybe it’s just me. Maybe it’s just my physiology and anatomy just really couldn’t tolerate the BCG and had a very different effect.

Rick Bangs:

That’s all the time we have today for Part 1 of my interview with Damon Thomas, a bladder cancer survivor. Tune in soon for Part 2 of my interview with him coming to your favorite podcasting platform soon. If you like this podcast, never miss an episode by clicking on the subscribe button of your favorite podcasting platform. And rating this podcast helps us reach more people. Please feel free to leave a review as well. Thank you for listening, and we’ll be back soon with another interesting episode of Bladder Cancer Matters.

Voice over:

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network or BCAN. BCAN works to increase public awareness about bladder cancer, advance bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast and additional information about bladder cancer, please visit bcan.org.