Podcast Transcript: Being a Bladder Patient with Carlos Glender

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Voice over:        

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

Rick Bangs:        

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for, by, and about the bladder cancer community. I’m also a survivor of muscle-invasive bladder cancer, the proud owner of a 2006 model year neobladder, and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network, or as many call it, BCAN, producers of this podcast.

This podcast is sponsored by Merck and FerGene. I am excited today to have Carlos Glender, our first bladder cancer survivor, join us today on Bladder Cancer Matters. Carlos is a survivor of Stage 1 high-grade bladder cancer, which is what we discussed as a slippery slope in a previous podcast. Carlos, I’m so pleased to have you here today because yours is a marvelous story of the possibilities of life after a bladder cancer diagnosis.

Carlos: 

Well, thank you, Rick. It’s an honor and a pleasure to be here. BCAN has been a very supportive network for me, and it helped me in my journey tremendously.

Rick Bangs:        

Great. Let me start with getting some context about your specific diagnosis. So what happened that led you to your diagnosis, and what was that diagnosis?

Carlos: 

What led me to my diagnosis was back in the fall of 2016 I had a little bit of blood in my urine. It was slight, and it was intermittent. Every time I urinated it wasn’t there. It was just like maybe two or three times a week. I would notice a little pink tinge. I explained it to my wife. She’s a nurse. She said I needed to get that checked. I didn’t really think much of it because I exercise a lot, and I did a lot of running. I think I ran a half marathon before then, and I just thought it was strain on my body. But my wife convinced me to go to a doctor.

My general practice doctor referred me to a urologist. I did my first consult with the urologist and then he said I need a follow-up with a cystoscopy. So I had a cystoscopy done, and the doctor found a tumor the size of a quarter. It was really a shocking experience for me. Then removed the tumor, they graded it. It was a T1 HG non-muscle invasive high-grade, but it was really a shock. It was my first time … I didn’t expect it to be a bladder cancer. I thought it might be a kidney stone or something much less severe than that. So it was a total shock to have that diagnosis.

Rick Bangs:        

Did you know anything about bladder cancer before your diagnosis?

Carlos: 

No, I did not. I’m very interested in science, and I do a lot of reading, and I knew about cancer in general, but I didn’t know specifically about bladder cancer. I thought it was a very rare form of cancer. You hear mostly about lung cancer and prostate cancer and things like that. So it was definitely really a shock to me. My knowledge was very little when I was diagnosed. But once I got the diagnosis, I read up on it. I gathered as much information as I could. I used BCAN’s resources and became knowledgeable on it because I think knowledge is power. It helps a patient and a survivor. It’s another tool that a survivor has to take charge of his outcome, I believe.

Rick Bangs:        

Yeah. I can relate to the symptoms and how it started because my situation is very similar and how you reacted to the diagnosis and what you didn’t know and this kind of need for information. It’s, I think, kind of universal. So what did your doctor recommend as your treatment, and what was your reaction when you heard what the treatment was going to be?

Carlos: 

Well, my initial doctor was a urologist at a urology clinic. When I got the cancer diagnosis, I wanted a second opinion. I was living in Ohio at the time, Cincinnati area, and I went to the James Cancer Institute at Ohio State University, which was the closest NCI. There I had a doctor, Dr. Megan Merrill, and she explained the diagnosis.

They did another surgery just to make sure that the margins were all okay. It was done under blue light cystoscopy. That’s another reason I went to the James is their equipment is state-of-the-art. I figure try to get the best medical care I could. My doctor informed me about BCG as a treatment protocol and explained to me you have your six installations of URO-PREP and then you have your maintenance rounds.

I was all for it because the alternative would have been possibly a cystectomy, removal of the bladder. I wanted to preserve my bladder as long as I could. My doctor explained about the BCG is that some patients can’t tolerate it very well, but I was fortunate that as I went through the BCG regimen, I seemed to tolerated very well. I mean, it was not comfortable by any means, but it was tolerable. It was definitely a worthwhile endeavor to receive BCG.

Going forward to today, I believe it’s played a large role in keeping me cancer-free. I’ve been cancer-free for the last four years and BCG, right now it’s really the gold standard. There’s other treatments in the works, and BCG is a very old treatment, but right now it’s probably the best that’s used in quantity. Clinical trials may have more advanced medicines, but BCG … I’m thankful for BCG. I hope the shortage does get remedied, not only for myself, but for all bladder cancer patients.

Rick Bangs:        

Well, let’s talk about the shortage. Did the shortage have any impact on the nature of your treatment, the duration of your treatment? How did you and your doctor navigate the shortage?

Carlos: 

Just to give you a little history. After being treated at Ohio State, my wife and I moved to North Carolina. We moved to Charlotte to be closer to my daughter and grandkids. I’m treated now by Dr. Riggs at the Levine Cancer Institute. He’s a very knowledgeable doctor, and I’m really thankful for his care. I received a total of 18 BCG treatments, including the initial round. The actual Lamm protocol, I believe calls for 27. I had a significant portion of the entire regimen. My doctor explained to me that I was in a really good place statistically and that I would not need any additional BCGs after my 18th BCG. I was a little bit concerned about that because I wanted to get the entire regimen, what was recommended by medical community, but I did some research and the doctor’s right, that statistically I’m in a really good place.

There’s probably an 80% chance roughly that I will not have a recurrence. One thing that really helped me in my journey was I went to the Bladder Cancer Summit. I think it was October 2019. I asked that same question, I explained my situation, I explained where I stand as far as my treatment, and I brought it up to the panel, the John Hopkins panel of doctors. They concurred that basically I was in a really good place statistically and additional BCGs after that point may have a little bit of, slight benefit, but most of my benefit was gained by my early rounds of BCG. That really helped me deal with it.

As far as the BCG shortage, I’m concerned about that. That the pharmaceutical industry cannot produce more of this. I wrote an article in the Charlotte Observer newspaper. First of all, I called Merck, the company that makes it, and I wrote an editorial, not an editorial, but a Letter to the Editor in the Charlotte Observer newspaper showing the concern for bladder cancer patients. That this is a real critical drug that saves lives. Personally, I think I’m in a good place statistically, and I’m doing everything else that I can. I never smoked, but I’m eating healthier, I’m exercising more, I’m trying to get more sleep than I did in the past. I’m trying to do everything I can in my power to boost my immune system and keep myself healthy and prevent a recurrence.

Voice over:        

The Bladder Cancer Advocacy Network, BCAN, invites you to join us for our 10th Annual Virtual Walk to End Bladder Cancer, Saturday, May 1, 2021 at 11:00 AM Eastern Time. Our virtual walk is an interactive nationwide alternative to in-person walk events that involve thousands of participants walking from the place of their choosing.

The overarching walk theme is, “No one walks alone,” as we make people aware that they are not walking alone during their difficult bladder cancer journey. An important reminder during this time of social distancing. Critical funds raised through the virtual walk help BCAN increase awareness about one of the most commonly diagnosed cancers in the US, support hundreds of thousands of people living with this disease, and raise funds for much-needed bladder cancer research.

The virtual walk will be broadcast on BCAN’s social media channels, and will include compelling videos from bladder cancer patients, caregivers, doctors, and more. Learn more about the May 1st Virtual Walk to End Bladder Cancer at bcanwalk.org. That’s B-C-A-Nwalk.org or contact us at (301) 215-9099.

Rick Bangs:        

There’s another challenge that you faced that’s kind of unique to the time period. So the BCG shortage is certainly one, but you’ve also received some treatment and testing before and during the COVID pandemic. We had a recent podcast on the impact of COVID on bladder cancer survivors. So what changes has the combination of bladder cancer and COVID had for you and perhaps your family?

Carlos: 

Treatment during COVID, it was really limited as far as who can go with you, the protocol to enter the hospital. The Levine Cancer Institute did a great job by monitoring temperature at all entrances to the hospital, ensuring that face masks were available and worn while in the hospital. Hand sanitizer was plentiful throughout. Visitors were limited. I think they did everything they could to give quality treatment in a COVID environment and prevent anybody from catching COVID.

During COVID one thing that, prior to COVID, my wife would always go with me when I had my cystoscopy. She’s a nurse. She’s an extra set of eyes. She’s probably more knowledgeable what she sees on the scope watching than I would be. If there was any things that she had a concern about, she would ask the doctor. So I appreciated that, that she was an extra set of eyes and she was really a knowledgeable medical expert that would go with me for the cystoscopies. Other than that, I feel the quality of my care has remained extremely high, and I’m satisfied with it.

One thing about COVID is what I’ve been doing to boost my immune system to fight cancer, to fight a cancer recurrence, I believe is also beneficial in keeping your immune system strong to prevent COVID. I wear a mask. I comply with everything that I can to not catch COVID. But running in my neighborhood early in the morning with nobody else around and getting to exercise, I think is very beneficial in keeping my immune system strong, but also my lungs healthy and my entire body healthy for both COVID and cancer.

Rick Bangs:        

You’re really lucky to have a partner who is in medical. That must be terrific. What advice do you think either you or she would give to somebody who has just been diagnosed with bladder cancer?

Carlos: 

I would say a bladder cancer diagnosis, it’s going to be a shock to anyone. When you hear the word cancer, it’s devastating. It really is. It’s a devastating situation, but there’s a way up from that. So what you do is get as knowledgeable as you, read up on it, you seek the best medical care you possibly can. But you also try to apply what you’ve learned by research in your own life to improve your lifestyle. If you’re a smoker, please stop smoking. If you’re not getting enough sleep, try to get more sleep. Try to adjust your life so it’s a healthier lifestyle that will keep your immune system strong. Because that’s another, in addition to medical care, if a person can do things on their own to help their diagnosis, their prognosis in the future, I strongly believe in that.

It gives you control. It gives you more control of your life, I feel if you’re working to fight cancer. You could do it through diet and exercise and all that, but also be proactive. Volunteer for BCAN. I’m in a Survivor to Survivor program at BCAN. I try to help other people that are bladder cancer survivors. Also, write your Congressman. I just recently, I think last week, there’s a $10 million research grant that BCAN mentioned on their website that recommended if you’d write your Congressman. So I did. I sent an email to my Congressman and basically I took the sample that was provided, but I edited it and added my personal information and my personal story really. I took that as like a template, and I built upon it and wrote my Congressman about how necessary bladder cancer research is and to support the funding for bladder cancer research.

Rick Bangs:        

You have done a lot. That’s really wonderful. You talked about exercise, but I also believe you might participate in some competitive athletics. The rumors I heard were that you do pretty well. So could you tell us about those activities and what changes, if any, your diagnosis has had on them?

Carlos: 

Sure. I’d be happy to. I love athletics. I did a lot of running before. I was a competitive swimmer in high school, and as I’m building my immune system through exercise, I also have a parallel goal. Is that the same things I’m doing to keep my immune system strong are the exact same things that help you do really well in athletics. So it was a great motivational thing for me to keep me on my track of being healthy, because not only am I preventing a recurrence, but I’ve trained for some really interesting and fun events. Swimming events, and recently I’m starting to enter some running events. I joined the National Senior Games Association. They have a Senior Olympics. You compete at the local level. The top three go to the state level, then the top three from the state level go to the national level. I’ve done that. I competed at a national level in Albuquerque, New Mexico in 2019. I swam six swimming events.

The best swimming event for me was the 200 butterfly, which is really kind of a tough event. A lot of people avoid it because it’s a tough event. Probably the reason why I won a medal, I won a bronze medal, was that a lot of excellent swimmers, they like the 100 freestyle and the other events, but 100 butterfly’s pretty tough. I ended up getting a bronze medal in that. I also competed in the Pan-American games in Orlando, Florida in 2018. I got a sixth place, but it was an international field in my age group. But I compete at a 65 to 69 age group. What’s good about the Senior Olympics is you’re not competing against guys like Michael Phelps or anything, but you’re competing against some really good top athletes in your age group.

Just recently they started competitions, in-person competitions again at the local level. In addition to swimming, I’m going to be running track events. I decided, me and a buddy from my swim team, who’s my age we decided that we can qualify in swimming, but let’s try our luck in qualifying in running as well. So I’m going to be running the 400 meter run, the 800 meter, and the 1500 meter runs. 24th of this month. Saturday, the 24th of April. I’ll see how I do at the local level. I’m probably a much stronger swimmer competitively than a runner. Running’s fun. I’ve done marathons before, but not really the short track events.

What’s really good is if you have an inclination to compete athletically, the age group plan for competing, you just compete in your age group and try to do the best you can. It’s really a motivating factor for me to stay on path for being healthy for bladder cancer as well because the exact same things I do to become a strong athlete are the same things I need to do to keep my immune system strong.

Rick Bangs:        

So the butterfly, isn’t that like, I don’t remember exactly, but it seems like that would be one of the most rigorous strokes you can do in swimming, if not the most rigorous.

Carlos: 

Yes. It is. It’s the hardest. I had a natural ability when I was younger to do it. I went through age group swimming and then competed in high school. That was my event in high school, swimming butterfly. I’ve got to admit, I was much faster back then than I am now, but I still kept that butterfly rhythm and the feel for the water that ensures that you go fast. It’s a great sport. The team I practice with here in Charlotte, a team called SwimMac, they really adhere very well to COVID protocol. They take your temperature before you enter, you wear a mask until you get into the pool. You sign up for your lane in advance, you’re assigned to that lane and you stay in that lane, and it’s socially distanced. There’s a record in case somebody does end up with COVID, there’s good contact tracing because everybody has to sign up and they know who was in what lane when. So they do a really good job to keep it safe.

Rick Bangs:        

Okay. I want to go back in time. So at the time of your diagnosis, I think you indicated that you found BCAN. So I’m just curious as to how that happened, whether it was Dr. Google or your urologist. How did you find BCAN, and were there specific resources at that time, if you can remember, that you found particularly helpful as you were starting your journey?

Carlos: 

Sure. I learned about BCAN, I believe at the James Cancer Institute at Ohio State. They were a cancer hospital. The doctor counseled me on my diagnosis, but also gave me material on BCAN. I thought that was great because I wanted to learn as much as I could about bladder cancer, and BCAN was a resource that was of tremendous help. Their website is excellent. I got on Inspire, the Inspire website of BCAN, actually asked questions and read stories about people with a similar diagnosis that I had. It was very, very helpful to have that support, to know that you’re not alone with bladder cancer. It’s very rare. I thought it was really rare because I’d never heard of it prior to being diagnosed, and the support and educational materials and the resources were just excellent. I’m very appreciative of that organization.

Rick Bangs:        

The web forum is just tremendous on Inspire. When I started … I don’t think I found the web forum until 2007 or 2008 … There were less than 1,000 people. And then today there are 40,000 people on Inspire in the bladder cancer, the BCAN site. So you’re absolutely right, this is certainly a place where you’re not alone and you can go and you can ask anybody anything and feel comfortable. Somebody in those 40,000 members is going to have some ideas or suggestions for you on a practical level. So it’s really, really terrific.

Carlos: 

I’ve also made some friends. I’ve made some friends on BCAN, on Inspire. For example, Brian Okamoto in California. I talk about Inspire, use it in a story, and he’s a swimmer as well. He’s a swimmer in California, but we kept in touch and he’s diagnosed pretty much the same stage I’m at. We give each other helpful hints, and we share information and it’s been great. Additionally, when I went to the Bladder Cancer Summit in Baltimore, I met somebody that lived close to where I live. I found out that he was prior Navy like I was. I served 20 years in the Navy, and he was stationed aboard the same ship that I was. We were both stationed on the USS independence aircraft carrier. He was stationed, not the same time, he was there before I was. You can really make friends and learn from people through BCAN, through Inspire, through the contacts you make at BCAN, and that’s a wonderful thing.

Rick Bangs:        

Yeah. We’re really lucky to have that opportunity because you’re absolutely right. I’ve kept in touch with people for over a decade now, people I met on the Inspire site or through BCAN. You’re absolutely right.

I want to close by kind of recounting some of the work you’ve done to advance bladder cancer. So you talked about writing to Congress. I know you do some outreach to patients. You’ve gone to survivor forum. Anything else that we can add to that list? Because, I mean, you have a very rich history of advancing bladder cancer, and I want to give people an idea of some of the opportunities they might also have.

Carlos: 

Well, I just want to keep on doing what I’m doing. Survivor to Survivor. Where there’s an issue, be involved. Be involved to promote better cancer prevention. I was also a patient advocate for a pharmaceutical company where I felt like I was really providing helpful and meaningful input. I encourage everyone to do what you can to advance bladder cancer research and prevention. It’s a motivating thing for me, it’s one of my top priorities now that I want to do what I can to help the fellow bladder cancer survivors.

One thing I want to do, and I probably need to do, is sign up for the virtual walk, which is, I think the deadline’s coming up soon for that, but I haven’t done that yet. I want to do that as well. But it’s a great organization. I’m just glad to be a part of it.

Rick Bangs:        

Yeah, absolutely. Terrific. So Carlos, I want to thank you for our time today. You’ve really, I think provided a fascinating glimpse of bladder cancer survivorship in these times, but also some very compelling work that you’ve done to advance the cause. I want to thank you for that, and I’ll look forward to hearing more about your work.

Carlos: 

Great. Thank you, Rick. Thank you so much for the podcast. It’s been a pleasure and an honor to talk with you. It’s been great. I’m also just really appreciative of your work for BCAN in hosting these podcasts. I’ve listened to some of your prior podcasts and they’re excellent.

Rick Bangs:        

Thank you. Thank you. I know we talked about this in advance and you have said that you’d be willing to share your email in case somebody wanted to reach out to you. So what’s your email address?

Carlos:  Email address is mailto:cglender976@gmail.com.

Rick Bangs:        

Okay, thanks. Thanks for sharing that email. Appreciate your time. Just a reminder that if you’re looking for more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1-888-901-2226. That’s all the time we have today. Thanks for listening, and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Carlos.

Carlos:  Thank you.

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.