Transcript of Bladder Cancer Can be Painful, Especially Financially, with Cindy Lawson DeVore

May 25, 2022

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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 Seagen/Astellas, EMD Serono/Pfizer, Genentech and Merck.

Rick Bangs:

I am pleased to welcome today’s guest Cindy Lawson DeVore. Cindy and her mom are both bladder cancer survivors and her dad is a retired urologist. She’s a personal care product manufacturer and hosts her own podcast about bladder cancer. Cindy, welcome. I’m so excited to have you join me on our podcast today.

Cindy Lawson DeVore:

Thanks, Rick. I’m really excited to be here. I love this podcast and I listen to every single one of them, so it’s a real honor to be here.

Rick Bangs:

Oh, it’s a pleasure. Before we talk about the other members of your family, let’s talk about your own bladder cancer journey. You were diagnosed in 2017, I believe. What were your symptoms?

Cindy:

I had what they call gross hematuria which is, as most of us know, visible blood in the urine. It happened only one time, just out of the blue. I saw it and thought, “Oh, my gosh.” I thought maybe I had hurt myself lifting some boxes or something in my workshop. Then it happened again, one time two weeks later, that was my symptom.

Rick Bangs:

What moved you to actually go and get a diagnosis?

Cindy:

Well, fortunately, I mentioned it to my husband and my husband said, “You need to tell your dad.” And he said-

Rick Bangs:

To your dad. The retired urologist, of course.

Cindy:

Yes. Yes. When you grow up in a family with a dad who’s a doctor, you learn from a young age that you don’t necessarily want to mention every little symptom to your father or you can find yourself in the ER very quickly.

Rick Bangs:

Oh, yeah.

Cindy:

And my husband said, “Look, if you don’t tell your father, I’m going to call him and tell him myself.” I thought, “I don’t want to have that happen.”

Rick Bangs:

It’s a conspiracy.

Cindy:

Yes, exactly. Thank goodness because I did call and let him know what was going on and he immediately said, “You need to, right away, go get a CT urogram. You need to find a urologist. You need to get a cystoscopy.” He was very matter-of-fact about the blood in my urine and felt quite confident that it could be bladder cancer.

Rick Bangs:

Right. Without any of the data that one might collect from the cystoscopy, the testing or whatever, he’s already decided that’s… Or he suspected, right?

Cindy:

He did. My dad practiced for more than 50 years. He was a full professor, a researcher and a surgeon very accomplished. He said to me, “Look, this is what I do.” He’s always approached medicine to rule out the worst case scenarios, that’s just how he rolls. Thank God, that’s how he is because that’s, lighting a fire under my rear end is what it took.

Rick Bangs:

Okay. I want to back up for a quick detour because it might explain why your dad jumped to the diagnosis already and maybe not. What about risk factors? Did you have any risk factors going in?

Cindy:

I did. In fact, he mentioned that, too. A very long time ago, I smoked for about 10 years in my stupid youth and I had quit. Oh gosh, it’s been more than 30 years since I quit. Even though I argued with him about it, he said, “You smoked.” And I said, “Dad, I smoked a long, long time ago.” He said, “It doesn’t matter. You smoked and that can actually change the DNA and the lining of the bladder.” Even though he is an expert at those, I still found that really hard to believe. No one really tells you about bladder cancer and smoking. You hear about lung cancer. You don’t ever hear about bladder cancer in connection with smoking.

Cindy:

There were a couple other things actually that were risk factors for me but smoking was the primary one that we were looking at. I also lived next to a vineyard for about five years, right before we moved into our current home, actually. Those of us who are country mice and live more than an hour outside of Washington, D.C., we have well water to supply our household water and it looks normal and it tastes great. You would think it would be perfectly safe.

Cindy:

It didn’t occur to me when I was living there that the herbicides and pesticides that were used on the vineyard, on the grapes, were probably in the groundwater as well. And of course, many pesticides and herbicides have arsenic and that certainly could be a risk factor. My husband and son also lived in that home and they have not had any problems, knock on wood, but that doesn’t mean that I might not have been genetically predisposed to that type of risk.

Cindy:

The third thing was taking Zantac. I get acid reflux very, very easily, I always have. I can’t even look at ice cream or greasy things without getting acid reflux. My doctor had said it was perfectly safe to take ranitidine or Zantac is the major name brand associated with that drug.

Cindy:

There were rumblings in 2019 about a possible human carcinogen in the drug and I stopped taking it immediately. Then 2020, the FDA actually recalled it. There’s a byproduct chemical in it called NDMA that was in it. They’ve since changed the recipe for the drug, but it was at 3000 times the acceptable limit and many, many millions of people have taken that drug. I took it for a good number of years. Yeah.

Rick Bangs:

Wow. Yeah. I think a lot of people think that if they smoked years ago and you’ve had this lengthy time like you did, that the clock resets but that’s not exactly how it works, right?

Cindy:

It’s not, and I’ve always been in very good health. I was telling my new urologist this morning when I was meeting with her, I’ve rarely had to use my health insurance over the years, except for just checkups and things, so it was really hard for me to grasp the concept that I could have cancer.

Rick Bangs:

Wow. Okay. You’ve been pretty open about the reaction you had when you were told you were going to need a cystoscopy and you actually devoted a whole podcast to that. Tell us about your pre cystoscopy perceptions and how did the actual experience compare to what you expected?

Cindy:

Oh, my goodness. Was my dad who said, “You’re going to need a cysto.” I said, “A what? I have to get a scope? Are you kidding? Oh my gosh.” And he said, “Oh, come on. It’s no big deal.” And I said, “Of course it’s not a big deal to you. You’re the doctor who performs them.”

Rick Bangs:

Right. You’re on the other end of the scope.

Cindy:

Right. Right. I was so scared, I really was. And like I said, I’ve always been in good health. I’ve never needed a procedure like that. To me, it just sounded absolutely terrifying, the thought of a scope going up through your urethra. It couldn’t even imagine. I think I told you, I’ve had two natural childbirths, you would think I’d be able to handle a procedure so simple. But I did.

Cindy:

I went and made my appointment and when I got there, I was literally shaking and the nursing staff was so kind and so understanding. It’s anxiety producing enough when you’re going in to find out if you have a tumor or if you’ve got cancer, and then you’ve got to have somebody put a scope up your urethra. I told her, I just flat out said, “Look, I’m really, really nervous.” She said, “It’s really easy. You’re going to be so surprised at how well this goes.” Sure enough, they numb you up and the doctor popped in. It’s a little bit embarrassing because for women, you’re lying there in a very vulnerable position with your feet in the stirrups-

Rick Bangs:

Right. Right. And not many clothes on.

Cindy:

Right. My doctor popped in and he said, “I’ll be back in just a few minutes. Don’t go anywhere.”

Rick Bangs:

Yeah. Yeah. Like you were planning to.

Cindy:

Right? He came in and was very, very kind and very gentle about it and told me when he was passing the scope. It didn’t hurt at all, there was zero pain. I remember it just felt strange. What I found more remarkable about the whole experience was being able to see inside my bladder. That was really something.

Cindy:

We didn’t see what we wanted to see, we found the tumor. The whole experience and seeing that just really opened my eyes about technology and how wonderful it is that we have these very simple procedures to make a diagnosis like that. It was easy. It was less than five minutes. I tell everyone who’s facing their first cystoscopy, it’s a piece of cake. Nothing to worry about at all.

Rick Bangs:

It is quick. It’s not this lengthy thing that you have to experience. It is over relatively quickly. But just to be clear, your mileage may vary because I would not describe it quite as, I don’t know, efficient and painless as you. But when you have to go past the prostate, it’s a little more challenging.

Cindy:

Yes, and actually my dad mentioned that too. He said for women it is particularly easy. It’s a shorter distance and it’s really nothing to it. But yes, I actually have heard that from men. It’s a little, not necessarily painful for everybody, but it’s not as easy as it is for women.

Rick Bangs:

Right. Right. Agreed. Agreed. Yeah. It’s uncomfortable but it’s not incredibly painful. So you get the diagnosis and you’ve had some treatments. Talk to me about your treatment so far and how it’s gone.

Cindy:

The first thing they did of course, was schedule my TURBT surgery and when the tumor came back from pathology, it was a rather large tumor, five centimeters. The doctor called me and said, “It’s low grade.” Which of course, we all celebrated right away. I didn’t really know what that meant at the time. My dad was really excited that it was low grade. But of course I’ve since educated myself in a huge way in these things. Then, what he explained to me was, “We’re going to have ongoing surveillance. You’ll have to have cystos every three months.” I thought, “Oh, yippy.” What ended up happening with mine though, was that I’ve had multiple recurrences. I’ve had actually several TURBT surgeries because every time I went back, they were finding new growths.

Cindy:

Last summer actually, within a three-month time period I had a rather large tumor grow very, very quickly and this was following a blue light procedure. The blue light of course, they should be able to see things before they start growing, that’s the whole idea. It can spot cancer cells or suspicious areas, turn bright pink and they can biopsy those, they can cauterize, they can do a variety of things. That was an office cysto that I went to last summer and lo and behold, there’s this giant tumor in my bladder.

Cindy:

I was seriously disappointed because I actually had thought that I’d have a clear checkup for once. We were managing simply with the TURBT surgeries and surveillance but after that tumor grew so quickly, my doctor said, “Look, I think we’re looking at a much more active disease with you.”

Cindy:

I got bumped up into the intermediate-risk category. After that TURBT he did a gemcitabine instillation after the surgery and then we started BCG treatments last fall. I had the first induction, we finished with that last fall. I had another blue light at the end of last year that did show two more growths but they came back as nothing, benign and he thought they could have just been residual from before we started BCG.

Cindy:

Then I had my first maintenance treatment in January of this year, completed in February. Had another blue light in March, just this past March and for the very first time in four and a half years, there was nothing growing in my bladder. I’ve been celebrating ever since that day. I’ve got another maintenance treatment coming up starting next week, so I have three more and then another blue light this summer.

Rick Bangs:

Okay. You started with a large tumor and then I heard a recurrence and it also grew quickly, but you were low grade at your original diagnosis, so has it changed?

Cindy:

It has not and I’m glad you mentioned that because I think I mentioned to you when we were talking previously that I was in touch with Karen Sachse, who was also a guest on your podcast. I listened to her podcast and heard about her experience of being diagnosed with low grade first and she had multiple recurrences, so she actually had a second opinion done on her slides and sent them to Johns Hopkins, to the Greenberg Center there and it came back as being high grade. That scared me actually, because I thought, “Oh my gosh, I feel like my cancer is acting just like hers.”

Cindy:

I did reach out to her and she gave me all of the information about how to get my second opinion on my slides. We did send the slides to Johns Hopkins and yay, they came back confirming the original diagnosis of low grade. I have a very active, low-grade bladder cancer, unfortunately. But I’m so glad that it’s not actually high grade.

Rick Bangs:

Wow. It seems unusual to me to have the large tumor and then the regrowth and still be low grade, but that’s very excellent news.

Rick Bangs:

Okay. Now if she’s okay with this, can you talk about your mom? Because she was diagnosed a month after you were diagnosed.

Cindy:

Yes.

Rick Bangs:

Okay. Did she have any symptoms and what was her diagnosis and treatment plan, and what role is your father playing on this side?

Cindy:

It was kind of it was all meant to be. It was super, very strange. She was actually getting a scan done for something related to a gallbladder problem and they spotted something in her bladder. Of course, my dad immediately got her to a urologist. She had a cysto done and, sure enough, she had a tumor in her bladder.

Cindy:

My dad at the time was doing what they call locum tenens. He was retired but he still was practicing in different states and taking vacations while he was doing that.

Rick Bangs:

That’s like a temporary contract assignment.

Cindy:

Yeah. Yeah. It was really cool actually, because he had some here in Virginia and he was down in Williamsburg, so he actually knew the urologist at the hospital there. I want to say he had even trained him, I’m not sure if that was the case or not, but they knew each other.

Cindy:

Yeah, so my dad asked him if he’d do my mom’s surgery and he did. Then they came and stayed with us and my mom recovered here when they were staying with us. She didn’t have any symptoms for hers, she had no idea that she had bladder cancer. I don’t think her tumor was as big as mine, I think they caught it pretty early on.

Cindy:

And at the time my parents were living up in the Northwoods of Minnesota, way up in the Boonies. To get city care, they had to go all the way to Minneapolis, so BCG treatments for her were difficult I guess, because they didn’t have BCG available in their area.

Rick Bangs:

Because of the shortage.

Cindy:

Probably so. Yeah, and because they were in such a rural area too, so her doctor referred her for mitomycin treatments. She had six weeks of mitomycin treatments and she’s been under surveillance and had her checkups and she has never had a single recurrence, which is great.

Rick Bangs:

Wow. Wow. She was diagnosed low or high grade because I heard-

Cindy:

She also was low grade just like mine. Yep.

Rick Bangs:

Also low grade. Interesting. Okay, how’s mom doing today?

Cindy:

She’s great. She’s doing very, very well. Mom’s had some difficulty, she’s had breast cancer, uterine cancer, and then finally bladder cancer. Fortunately with dad in the picture, my mom is a healthy 86 year old, my dad’s 88. They’re still going strong, painful hips and things like that but they’re both doing very, very well. Dad loves to talk about medicine still. He’s actually going to be a guest on my podcast.

Rick Bangs:

Oh, of course he is. You should bring mom in too for a special episode. That would be kind of cool. Okay, so you’ve had nine cystoscopies?

Cindy:

Yes, and each time there’s been something removed. I’d love to just say they were cystos for checkups, but I’ve had actually more than nine cystos. Because if you count, there were several office cystos where I’d go in and then they’d see something and then I’d have to be referred.

Cindy:

It started with the surgery center where they were just using white light cystos and going in and removing what they found, and then it was, I think November of 2020, finally my doctor just said, “We need to just refer you for blue light regularly.” Because it was silly. I was going in and having these white light office cystos done, always finding something and then having to go back and have the blue light done after in the hospital, so it was a added expense for me as well.

Rick Bangs:

Oh, okay. Because with the blue light, they won’t do it in the office.

Cindy:

Right. Yeah. You have to be under anesthesia. They use a rigid scope. I was talking to my urologist about it and I said, “Sure would be nice if they could do blue light in the office.”

Cindy:

Actually, there was a podcast that I listened to where they did talk about the fact that they’ve come out with a flexible blue light that is for office. But the thing about blue light, and my urologist agreed with me, every time they do a blue light, they’re going to see something in an active bladder cancer patient, whether it’s inflammation or whatever and they need to biopsy it.

Cindy:

There’s usually a surgical procedure involved every time they do it. Even this last one that I just had in March that came back clear, he saw inflammation that it was likely from the BCG, but he needed to biopsy it. You need to be under anesthesia and perfectly still for that.

Rick Bangs:

Yeah. Yeah. There’s a little trade off there, isn’t there?

Cindy:

Yes. Yes. But a very valuable tool. If people can get blue light, I tell people to lobby for it because it’s really like a night and day difference when you look at the pictures.

Rick Bangs:

Yeah. Certainly a lot more pervasive than it had been in the last few years. It’s really grown in popularity.

Rick Bangs:

Okay. When each one of us is diagnosed, we have to decide who are we going to tell? When are we going to tell them? All right. What are we going to say? Talk about how you grappled with this question, because we all deal with it and what you ultimately decided

Cindy:

It’s interesting because at first, I only told my closest friends and of course my family knew as well. It’s hard to tell other people that you have cancer and nobody really talks about bladder cancer in particular. Even with my closest friends, if I was having lunch with somebody and they asked how I was doing or it came up in the conversation, if I started to get into any of my fears like, “I’m concerned if this were to progress.” And share that, I would notice a change of subject. I think maybe they were trying to cheer me up in some way by changing the subject and don’t think negatively and that kind of thing, but sometimes you just need to be able to talk about it.

Cindy:

I found the other thing that was happening was, I’m a very, very active person, I’m quite social and get together with friends, take trips and I play a lot of golf also. I found that I was having to cancel out of things after TURBT surgeries and when I started BCG, that was really tough to go out on a golf course. There’s a guys’ group I play with on Wednesdays, my BCG treatments were on Tuesday and I tried one time to go out on the golf course the following day after BCG. That was a big mistake.

Rick Bangs:

Yeah. Seems like it might be a little challenging.

Cindy:

Yeah. It’s very, very uncomfortable when you’ve got to use the restroom every 15 minutes or so. I finally just thought, “This is ridiculous. I’m just going to go ahead and tell people what’s going on.” I ended up telling all my golf friends and they were shocked at first and I said, “It’s okay. It’s okay because I’m fine, I’m getting treated.” And what I found was, they started asking questions. They wanted to know more about it like, what happened? How did you find out you have this? I started to see this as an opportunity actually to educate people.

Rick Bangs:

How long after your diagnosis is this happening?

Cindy:

I guess it was last year when I came out of my cancer closet.

Rick Bangs:

Okay, that’s like three years after your diagnosis?

Cindy:

Yeah, yeah. Yeah. It was a while, I just was pretty quiet about it for a while. The other thing too+ is that, like I said, people don’t talk about bladder cancer. People talk about breast cancer all the time and there’s lots of events and celebrities, spokespeople for breast cancer. Bladder cancer is not one that people even realize. I’ve heard people even say to me, “Wow, I didn’t even think you could get bladder cancer.” [inaudible 00:23:51]-

Rick Bangs:

Right. Right. How do you get cancer there?

Cindy:

Right. Right. Interestingly, I can actually explain to them, “Exposure to toxins. And that cigarette you’re smoking? You need to put it out.”

Rick Bangs:

Right. Right. It’s a teachable moment, right?

Cindy:

Right. Right.

Rick Bangs:

I want to talk about costs of bladder cancer and I want to be clear that you’ve already pre-approved that we have this conversation because I don’t normally go here without people being okay with it.

Rick Bangs:

We know bladder cancer has the highest cost for patient lifetime of any cancer and all this financial burden, so we have this thing that we call financial toxicity. Talk about your experience from the financial perspective.

Cindy:

Wow. I actually devoted a whole podcast to this one recently too, because the financial stress of managing my bladder cancer actually also, I think played a role in my coming out about the disease. The off-the-charts stress when you’re facing a new procedure while you’re still paying for the last one or maybe the last two, it’s really anxiety inducing. I’ve spent well over $50,000 out of pocket in the last four and a half years with more expenses to come.

Rick Bangs:

All right. To kind of set the stage here, you’re not somebody who doesn’t have insurance.

Cindy:

Right. I have very good insurance, in fact.

Rick Bangs:

You have very good insurance and yet $50,000 out of pocket.

Cindy:

Yes, one of the things that happened also, my husband was with the same company for 20 years and with that company, we had a $5,000 deductible that had to be met each year. That was tough. But let’s see, it was last year 2021, we had just met our $5,000 deductible thanks to my blue lights. I was just getting ready to start BCG and he was offered a new job with a different company. We went from meeting that $5,000 deductible to having to meet a new deductible with the new company, which fortunately was only $2,800.

Rick Bangs:

In the same year?

Cindy:

In the same and it was [inaudible 00:25:59]-

Rick Bangs:

Right. Yeah.

Cindy:

End of the year and I had to start my BCG and then have another blue light. The actual cost of the blue lights is like $7,000, that’s before your insurance gets it and that doesn’t include the surgeon’s fees. It’s a very expensive procedure and BCG is not cheap either. Right there in 2021, we had $7,800 out of pocket and then January rolls around, you’ve got a whole new deductible to meet.

Rick Bangs:

Right. Because you start all over again.

Cindy:

Exactly, I had my maintenance treatment start up and I had another blue light, so it’s never ending actually. That’s how it adds up so incredibly quickly and that doesn’t include the 20% co-pay part that they don’t cover, so it is extremely expensive. I didn’t even know the meaning of financial toxicity. I had never heard of it before until I started reading an article about it last year and I totally identified with that.

Cindy:

The stress of, I call it the embarrassment and fear factor, hand in hand when you can’t pay your full bill, when you’re standing there checking out of your urologist’s office and I’m paying what I can that’s on my HSA card. You’re thinking to yourself when you leave the office, “Oh my gosh, what’s going to happen? My husband’s going to retire pretty soon. We’re going to be on Medicare, fixed income. How is this going to work down the road to be able to pay for these things?”

Rick Bangs:

Right. Right. And you want to hold your head high when you go back because you know you’re going to have to go back to that office.

Cindy:

Oh, yeah. It’s life long so I worry about that stuff and I do try to not go down, I call it the rabbit hole of doom and gloom, where if I start saying, “What if it progresses? What am I going to do?” I can’t do that to myself, I have to maintain a positive attitude.

Cindy:

I’m actually at my desk right now and I’m looking at a stack of medical bills over here that I’m going to have to go through today. For people who don’t have insurance, I can’t understand how they deal with financial toxicity and how they manage to get their treatments. There really need to be some answers to help people with this.

Rick Bangs:

Yeah, and I think a lot of people don’t realize that even if you’ve got insurance, you still got the co payments, the deductibles, the out of pocket for transportation. You’ve got childcare or elder care if that’s applicable. Just all these costs associated with it. And then on top of it, the medical costs and let’s face it, immunotherapy is not a cheap date, right?

Cindy:

No, it’s not. Right.

Rick Bangs:

BCG has been around a while and a lot of the chemotherapies have been around a while, so they’re less expensive but it’s all on a relative basis.

Cindy:

Right. Right. Absolutely. Yeah. I can see a legislative reform maybe if there were ways to help, not only bladder cancer patients but cancer patients in general, to deal with the huge costs. And this cancer hits a lot of people later in life, $50,000 out of pocket should be sitting in our retirement account frankly, to support us as we’re seniors. Those are the other things I think about too.

Rick Bangs:

Yeah. Because there’s a clear opportunity cost of moving things from the retirement bucket into the medical bucket [inaudible 00:29:21], right?

Cindy:

Exactly. Exactly. Yeah.

Rick Bangs:

Okay, do you have any advice for somebody who’s just been diagnosed around this whole issue of managing cost?

Cindy:

Yeah, I do actually. There are financial navigators in the hospitals who if you’re facing for instance, TURBT surgery, who will set you up on a payment plan, you can spread the cost out over time. You do have to be careful about that because if you’re like me and you have one procedure after another, you can have multiple payment plans and that’s not easy to deal with either, so you do want to try to get those paid off as quickly as you can.

Cindy:

You need to ask for pricing upfront. If this is a concern for you, ask for the pricing before you’re charged. Talk to your insurance company, find participating providers with your insurance. That can make a huge difference as far as managing the costs. Because if you find a provider, a doctor who participates, for instance, I have Aetna.

Cindy:

My doctor is a participating provider with Aetna and they have negotiated costs for each procedure. If you go to someone who is not a provider with your insurance company, it can be two or three times what you’re actually paying and that’s what you’d be charged.

Cindy:

Insurance doesn’t always cover certain charges. I know I’ve heard in some of the bladder cancer support groups that I’m in some people say, “My insurance won’t cover blue light.” You can appeal that and you can ask for that to be covered if your doctor thinks that it is standard of care for you. My doctor actually calls it a standard of care now and I’ve come to rely on it.

Cindy:

The other thing I would say is, be sure that you go over your bills really carefully. It’s okay to dispute inaccuracies if you think that there’s something that you don’t agree with.

Rick Bangs:

Yeah, mistakes happen.

Cindy:

Sure. There’s actually post on my own website called triagecancer.com. They’ve got some really excellent webinars and resources on how to manage your medical bills. They’ve got a medical bill tracker worksheet. That can help you stay on top of things too.

Cindy:

The one thing that I’ve noticed about myself is if I don’t address these things when they come in, like the medical bills, it’s overwhelming and it can really cause you much more emotional stress if you let it go rather than staying on top of it. It’s part of what I call being proactive in your own care, it’s just another part of that. Staying on top of it really does reduce the stress.

Rick Bangs:

Right. Right. Feeling in control is really important.

Cindy:

Absolutely.

Rick Bangs:

Okay. You have hosted many bladder cancer podcasts and it’s patient-to-patient podcasts. Tell me what some of your favorite episodes have been and why.

Cindy:

Okay. I would say probably, my favorite is called Knowledge is Power and I really liked that one because I feel like it encompasses the essence of being your own advocate and taking charge with action rather than letting fear consume you.

Cindy:

When I first started on this whole cancer journey, I was scared to death and so much so I was ignoring my symptoms. I was trying to think that I was okay because I just really wanted to be okay.

Rick Bangs:

Right, Right. Wish it and therefore it must happen.

Cindy:

Exactly. Exactly. Like I said, I really had trouble grasping the concept of having cancer. That’s probably my favorite podcast because I do talk about having that knowledge and being proactive in your care is just so important. It makes you feel empowered actually. I think my next favorite would be The Dreaded Cystoscopy.

Rick Bangs:

Yes, yes.

Cindy:

Yeah. I’ve got a podcast called You’re Going to Put a Scope Where??

Rick Bangs:

Yes, That’s right. That’s right. Yeah. I listened to that one. That’s how I knew to ask about the cystoscopies and your going in position because I did listen to that one.

Cindy:

Right, right. Yeah. That one’s self-explanatory I think, as to why I like it.

Rick Bangs:

Right. Right. Because we all start with that saying, “You’re going to put a scope where?”

Cindy:

Exactly. Exactly. Yeah. It’s been fun to make them. I do try to inject a little bit of humor into some of my podcasts to keep them lighthearted from a patient’s perspective but it’s been fun actually doing those. Someone suggested that I start a podcast when I was talking about bladder cancer and they said, “Ah, you should.” And I thought, “Wow, that’s a really good idea.”

Rick Bangs:

Right. Right.

Cindy:

Yeah, and it’s been fun.

Rick Bangs:

Good. Good. Okay. Any final thoughts?

Cindy:

I think the biggest thing is that I’ve just decided that bladder cancer doesn’t have to be a drawback. Instead, it can be an opportunity to educate and help others and advocate awareness.

Cindy:

I have a new motto, it’s sharing is caring. And the more bladder cancer patients and survivors who will share their stories, I think the more we can help others and bring about awareness of this disease.

Rick Bangs:

Oh, that’s important advice. Important advice. Cindy, I want to really thank you for your time today. It’s been fascinating talking to you and loved hearing about your family along the way.

Rick Bangs:

You’ve given some great insights to our listeners that I know they’re going to appreciate. Let’s suppose somebody wanted to listen to one of your podcasts because I think there’s going to be some people that will want to do that. Tell us how they would do that.

Cindy:

Okay, the easiest way is to actually go to my hosting website which is called bladdercancertalk.com and you can just click on the podcast episodes link and it will take you to every episode. If you’re a fan of Apple Podcasts, Spotify or one of the major podcast platforms, you can just search bladder cancer patient to patient or even just type in bladder cancer and it should pop up. I’m on all of the major platforms. It’s easy to find it now.

Rick Bangs:

Excellent. That’s great. I’m sure people will take advantage of that. Thank you. All right.

Rick Bangs:

Just a reminder if you’d like 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. Thank you for listening and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Cindy.

Cindy:

Thanks for having me.

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.