Transcript of Bladder Cancer Was Not Cathy’s First Cancer Diagnosis 

September 6, 2023

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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.

I’m pleased to welcome today’s guest, Cathy Murphy. Cathy is originally from Greenville, South Carolina and traveled the world with her Air Force family before settling in Atlanta 30 years ago. She has a master’s in public administration. Cathy has worked as an investigative journalist, a health and education reporter, a producer and co-host of a live daily talk show. She’s a survivor of three different cancers, including non-muscle invasive bladder cancer. Cathy, thanks for joining our podcast.

Cathy Murphy:

This is a real pleasure, Rick. Thank you.

Rick Bangs:

It’s our pleasure to have you. So I want to talk about these two prior cancers that you had because they’re going to be very relevant to some of the discussion about your bladder cancer journey. So what were your prior cancers and how did those diagnoses happen?

Cathy Murphy:

My first cancer was in my left breast, and that took a while to diagnose. I had a lump, it was easily apparent to me. I could feel it, and my doctor put his finger right on it and he said he didn’t feel it. So after we had a mammogram and we did a biopsy, and that’s when he said, “Yeah, you have cancer, and I’m sorry.”

So we got that and I had chemotherapy before the lumpectomy. And the chemotherapy, it was just, I was a happy cancer patient. The chemotherapy shrunk it. Every week it shrunk more. So that was a good thing. And by the time we got to the surgery, we just put a pin, we put an x-ray over my chest, we put a pin where the lump had been. And we just cut there and there was nothing around the edges, nothing in the lymph nodes, and it was my choice whether to have more chemotherapy after the surgery. And I thought, yeah, it worked beforehand. I don’t want to see this again. And so afterwards I had radiation and more chemotherapy.

So second one was 11 years later, I had a lump. It came up this time in a mammogram. And when we did the biopsy, my doctor said, “You know, you really kicked the first breast cancer. This is a different breast cancer though. It’s breast cancer, and we’d like you to have a gene test to see if you have the BRCA gene.” I did. Find out my daughter does, which means if she has any children. There’s a 50/50 chance they will. My son does not have the gene, thank goodness. And that means it stops right there. There’ll be no one else in the family, in his family and his descendants will have the gene. My brother didn’t have it.

And my aunt, we found out on my father’s side, his sister had it. And she had the same pattern of breast cancer I did. She had her left breast, it was many years earlier. So it was her whole left breast was removed, and then her right breast was removed. And then years later when her daughter got breast cancer, it was just last year, both of them were tested and they both had the BRCA gene. So it runs in the family, as we all know it does.

Then a good 11 years later ran up against this bladder cancer, and I was one of the patients with no blood at all in my urine. The distinguishing factor that led me to my diagnosis was frequency, and the frequency became more frequent. I was seeing a urologist. My family doctor sent me to a urologist, and the urologist just wasn’t going to consider cancer for a while. It took about two and a half years.

Rick Bangs:

Wow.

Cathy Murphy:

We were always checking for urinary tract infections. I never got a positive one, but I was given antibiotics just in case for a couple of them. And no blood, no pain.

Rick Bangs:

Wow.

Cathy Murphy:

And I woke up one day and said, “Hey, Cathy, you’ve had breast cancer twice. You know, you have the BRCA gene. You need to be going in there angry or just determined and say, you need something more. We did a cystoscopy in his office, and I’ll be darned if I didn’t see a bunch of grapes hanging down from my bladder. And I said, “Are they supposed to be here?” And he didn’t answer me straightforward, but I could tell by the look of on his face and the nurse’s face that they were surprised. And I don’t know why, because I’d been there so much.

Rick Bangs:

Right.

Cathy Murphy:

And as soon as we had it tested and the biopsy said I had cancer, he immediately referred me to one of the best doctors I could ever have in my life, Dr. Shreyes Joshi at Emory University.

And it was at the height of the COVID. And I’ll just say what I think is important. We had options. He told me that there were many options and that we needed to talk about BCG. And that if it didn’t work, we had to look at possibly removing my bladder. That was always an option.

And what I wanted to say about the COVID aspect of it was we did some really critical meetings with Zoom. And my family was with me, my adult children, and they Zoomed when they weren’t at my side. They Zoomed in and were on the Zoom and it was just wonderful. My dog would pop in and out of the camera every now and then. I really felt that the Zoom meetings were very intimate and my kids got to ask questions. He got to know my family. He explained to BCG. 65% success rate, I think is what I remember being told. And I was happy to do that. I think I had a TURBT before then. That was not so thrilling, the TURBT was rough. It was rough.

Rick Bangs:

It was rough In what way?

Cathy Murphy:

It was a hard recovery. It was a lot of very painful bladder spasms.

Rick Bangs:

Oh, okay.

Cathy Murphy:

And bleeding. The bladder spasms were just really, you could bear them because you were alive, but they felt unbearable. I would be talking and I would just have my voice taken away. It was just so much pain. But you have a catheter and I was up for this BCG stuff that I was going to get. And I was looking for that to be a good option for me. And it turned out … I hope I’m not speeding away too fast here.

Rick Bangs:

No, no.

Cathy Murphy:

It turned out the BCG did not work. We did six rounds twice. And Dr. Joshi said, “Let’s just look at this in real terms. It’s not helping you. I’m going to take you off.” Which was great disappointment to me because I wanted to be part of that 65%. And until then, I hadn’t really had a treatment that didn’t work.

Rick Bangs:

Right. Because you’d had really good success with your prior cancer treatments, right?

Cathy Murphy:

That’s right, Rick. And I just thought, well throw this medicine at me and I’ll respond. And there was one thing about the BCG though that I asked the nurses and it bothered me because I had no side effects from the BCG. And they would say, “Well, don’t feel any pain?” And I didn’t. “Frequent urination?” And I asked since I was exhausted from it, and that lasted 24, 48 hours. But other than that, I said, “Look, I’m not having any side effects. Does this mean it’s not working?” It just seems to be a blip.

I mean, you had to hold it for two hours after you went home. That was not pleasant and had to pour the Clorox in the toilet because I guess it’s a cousin to the tuberculosis, what would be infection, the medicine is. But I suspected. And then I read later that it’s a possibility that if you don’t feel side effects, that it’s really not working for you.

So the road after that was an iffy road. My family was around me when he offered the possibility of a clinical trial. And I did some research on some of these clinical trials, and he gave me some information. If I remember correctly, and I think I do, it was a new trial, and now I know it was sponsored by CG Oncology. I didn’t know at the time. There was no reason for me to know, and I don’t think anyone wanted me to know at that time. But I think he said, it’s over 35% successful. And my family looked at these options and I just said, “Yeah, why not?”

Why not? I’ve been researching is just top cutting edge at Emory. They’re a research hospital, they’re a teaching hospital. And I have given them my tissue from previous battles with cancer to use and to study for future patients. And though it was maybe 35% successful, I just felt like, why shouldn’t I be in the 35%? There’s a chance, a greater chance that I won’t be. But then I’m of the mindset, why shouldn’t I be the one who gets cancer? I never said, why me? It just felt right to go for it. And I knew if it didn’t work out, it just might be like the BCG, that it didn’t work out.

Rick Bangs:

Right. So your choices at this point, you and the doctor discussed choices. One choice was the clinical trial. What other choices were offered?

Cathy Murphy:

Well, there was also the choice of having your bladder replaced. And I probably should back up, Rick and say that right at the beginning when I realized I had bladder cancer and I had a contact, a friend at work had a sister who had very successful BCG and at worked for her. And I had started talking to her and the BCG worked for her. She had horrible side effects.

She’s now three and a half years past it. She had to have her BCGs cut in half so she could tolerate it. But it was just good to have her to talk with. And it was also nice to know that I wasn’t having the side effects she was having. It also was unpleasant to know it didn’t work for me. But the other options were having different kinds of bladder cancer. And I called, or I emailed BCAN and I asked them to put me in touch. I think it’s called, it might be called Patient to Patient or Survivor to Survivor?

Rick Bangs:

It is Survivor to Survivor. It’s on the BCAN website as one of the support options. And people love that option.

Cathy Murphy:

Well, they put me in touch with Gigi Harndin, just a wonderful woman who lives in California. And I had studied enough to say, “Well, I know you can’t always pick, but how about a neobladder? That just sounds good to me.” And they gave me her to talk with. And I just spoke with her again last week and said, “I’m going to mention your name and the Survivor to Survivor program.”

Because just talking with her again after a year and a half was uplifting. She’s doing great. I’m doing great. We had different options, but we felt connected, very much connected. And I was sold on a neobladder, let me tell you. And when I mentioned it to Dr. Joshi, he said, “We are not at that point yet. We may be at that point, and I’m glad you’re checking these things out, but it’s not time for us to do this. We want you to qualify for this clinical trial.”

And three months. And I did. My people asked me what they could do for me. I said, just pray that I get in this clinical trial. And if you’re not a praying person, send positive thoughts, meditate on it. This is one thing I can ask of you that would really be a boost for me. And I got in. And for me that was, I just had a very positive feeling about everything. You’re on that level playing field. Well, you have bladder cancer. So if that’s your level playing field, then I’m thinking you can only go up.

We’re in the Western world, we’re in the 21st century and there’s options. If I do nothing, I’m not going to go up. I am going to die. And if we look at life, we’re going to die anyway. But why not take advantage? I’ve just felt so fortunate to be in the same town as Emory University. I just knew of people who were driving a long way when they were getting their BCG treatments. And I was just very fortunate.

Rick Bangs:

Yeah. I think it’s just so important for patients to just even ask if there’s a clinical trial. Because it needs to be an option that they consider. That doesn’t mean they say yes, but they at least should have the option to consider one.

Cathy Murphy:

Yeah. And it’s very confusing out there. When I was looking at clinical trials, I didn’t know what to really look for. And so I trusted Dr. Joshi to offer one to me that he thought I might be a candidate for. And as luck turned out, he was in charge of the clinical trial.

Rick Bangs:

Okay.

Cathy Murphy:

So that was lovely to know. It made me feel very secure.

Rick Bangs:

That whole doctor relationship on a clinical trial is so critical. Because you want somebody that you can trust to give you information and explain what these options are and what we know and what we don’t know and what that experience might be like.

Cathy Murphy:

I’m here shaking my head yes, just to what you’re saying. You’re absolutely right. Because it was a very new trial, there was some modus operandi that were just being developed. People were just getting into the protocols and how it should be.

And at the beginning, I did whatever they told me. And I was wrecking my schedule as it was. I looked at it as a job. But I think I mentioned when we briefly talked before that I was really being worn out by having to go. I had to go one time three times, but twice a week. And the first time I would go just to get a 15 or 20 minute physical checkup just to see if I was ready for the installation that would happen at the end of the week. I’d have labs and blood work.

And after a while I just said you’ve got to work with me on this. I know you’re scheduling and you can only do, COVID, there weren’t enough. There wasn’t enough anything. The personnel was on the low end. There weren’t that many nurses and technicians apparently. And then we got it done though. We got my labs, although there were labs, the whole thing took about two hours each time I went, a little longer actually. But we got it done on the same day. And Dr. Joshi told me, he goes, “Yeah, that was an oversight on the team’s part. The research manager who was scheduling things.” He said, “That was the right thing for you to do, Cathy. It’s hard enough with what you’re doing.”

Rick Bangs:

Sure.

Cathy Murphy:

So it worked.

Rick Bangs:

Yeah. And I like what you said about you made it your job. Because I remember talking to a doctor who does bladder cancer, and I remember the doctor saying that the way he presents this to patients is he says, “You have one priority right now.” Right? Because this is life altering. “Your highest priority is to get this treated. And you have other priorities, but this is your highest priority, because it’s that important.”

Cathy Murphy:

Yeah, I immediately realized that. Well, it was a job. And as time goes on, there were aspects about any job that are not always pleasant.

Rick Bangs:

Sure, yeah.

Cathy Murphy:

You don’t want to miss events because you got this installation and these labs and this blood work set and so many people are set to do it. And you can’t go, “Not this week.”

Rick Bangs:

Yeah,

Cathy Murphy:

“No, we’re not doing it this week. And by the way, I have plans at the end of the month, so we’re not doing it then either.” It just wasn’t that way.

And my payback was going to be great if it worked out. I just was going to have to wait a while to see. And it took a very long time. It took about two and a half years. So I wasn’t always skippity doo da when I went in. But I usually had a pretty positive countenance.

And when I first started, I told myself I was going to meditate and visualize during the treatment. And as it turned out, I found myself visualizing a lot when I would swim. I would visualize it was non-muscle invasive and I visualized it remaining that way. That seemed to be something important for me to visualize. And I think that helps. It helps you feel like you’ve got a little bit more control.

Rick Bangs:

Right. In terms of coping, patients are always looking for tips and techniques. So I heard you talk about meditation. I heard you talk about visualization. Were there other things that helped you with the ups and downs, things you did, things other people did? What helped you get through these ups and downs?

Cathy Murphy:

I didn’t have that many downs. I did just recently when the whole experience just kind of weighed on me and I realized just what a monster job it really was. But I went in there with a plan to get all the support I could. I held the diagnosis close for just about a week. And I just thought about, I want to share this with people who are going to support me. And I want them to know it’s not a secret as far as I’m concerned. If they will support me, I feel strengthened.

And one of my friends got some little rubber hearts and passed them around and she said, “Keep it in your pocket. Whenever you touch it, think about Kathy’s bladder and let’s make it healthy.” I asked for funny stories. I asked for funny jokes. I decided to mention it on Facebook. And I didn’t just mention it, I got right in there.

I think at first I actually offered too much information, like exactly how we were going to go through the urethra. And after a while I thought, well, that’s a bit much. You don’t need to go into all that. But by that, I was educating people. And that hit me after the fact. I wanted support, but I didn’t realize how many people didn’t know about bladder cancer. I mean didn’t. Why should they?

Rick Bangs:

Right.

Cathy Murphy:

I never thought about it. And I had people asking me for the symptoms. My symptoms were so, I didn’t have the blood in the urine. And so many people, that’s what tips them off. But I shared the frequency symptoms and so many women just said, “You know what? I would’ve never ever have thought that I would need to go to a urologist.” And well, you go to a urologist anyway because they can give you medicine that helps you not go so frequently if you don’t have bladder cancer.

But I met women who were using security pants and never been to a urologist. They were just wearing the adult security pants. And I thought, yeah, go to your urologist. Get your doctor to recommend one.

But what I used for support, I ask my mother’s church to pray for me. If you believe in prayer, it helps just to know that people are praying for you. And I wasn’t in a downer position. I guess it’s bad enough just to know you have bladder cancer and you don’t have to. But I got bored after a while.

I had a journal. I’d take even pictures of the medicine that they were putting in me if they allowed me to. And I started treating it kind of like a story since I’d been a reporter in the past. I thought, well, this is a story. It’s my story. And this is all new. And actually the clinical trial is new. And let’s just take a look at these tubes and what they say. And for a while we were joking that it was called the 007 disease just because of it was called Bond 003. We thought we’d call it 007. And that was a little lighthearted thing.

Rick Bangs:

Was writing the journal cathartic for you?

Cathy Murphy:

Very much so. Yeah. It really was. As I wrote it, I began to weave my life in it because I thought, you cannot just write about this bladder cancer.

I had my daughter stay with me overnight several times after the TURBT of course, for two nights. And the first cystoscopies just to make sure. Some are worse than others. Some you’re actually put under. And yeah, I had her stay with me. And then she would stay with me, and then her boyfriend would come over and then we’d bring in food. And different things would happened in my life and I’d just weave it in my journal.

And it got to the point where my journal was a lot about my life because the quality of your life is so important. You can’t just drag around. And living with cancer is something that I will be doing the rest of my life. And I didn’t use to think that. I didn’t know. I used to think that, well, you got cancer, and if you don’t cure it, you die. Well with bladder cancer, I’m not sure. I don’t ever say I’m cancer free. I heard the term NED for the first time actually in a cancer survivor’s webpage on Facebook. And that’s a great resource. That’s where I first saw BCAN information. It’s just a great resource to be feeling like, well, this will be my life for the end of time and I’m going to live with it.

Rick Bangs:

So that was the first time you heard about no evidence of disease or NED as you referred to it.

Cathy Murphy:

Yeah. And I joked with Joshi. He had mentioned NED to me. And we never said, you’re cancer free. But I said, I’m in love with NED. This is the thing I love. I don’t have to say I am cancer free. A lot of people do that and good for them. I just am always knowing that this cancer thing, I actually can say I have embraced it.

Rick Bangs:

Now, did you feel this way just with the bladder cancer or had you felt this way with your prior cancers?

Cathy Murphy:

Oh yeah. With my prior cancers, I visualized and meditated even more. I was pretty happy camper. I mean, when I say I shrunk the tumor. I think sometimes I think you have a lot to do with it. You got to have a lot to do with it. If your attitude, if you can find a way to be positive, having my friends tell me jokes was good. And I would say I would remind them and say, “If you hear anything now you owe it to me to tell me, and I’ll try to pass along other ones that I heard.”

But yeah. One thing though with the other cancers that was so different was that bladder cancer is well, hidden. No one’s trying to hide it, but breast cancer is just so out there and everybody knows about it. And there’s all these support groups. And I was just thrilled to find out that there’s a bladder cancer walk and BCAN supports that. And I know it’s only going to grow.

But with the breast cancer, it was all over the place. And there were foundations all over the place. And people would knit you hats and send you scarves. But we don’t need a hat for the bladder. But with the other cancers, yeah, you just have to maintain a positive attitude. I mean, it’s helpful. And you do embrace it. I did. I did.

Rick Bangs:

So what advice would you have for others, and I think you’ve touched on a lot of great points. Summarize your advice to other people who might be listening who have just been diagnosed with bladder cancer.

Cathy Murphy:

Well, I know it’s a blow, so I think you should give yourself time to decide who you want to share this with. And just not anyone, but for first off. And pick people who you know will be supportive. Don’t go to your crabby neighbor. It’s just not going to be a happy deal anyway.

But find out as much about it as you can, especially bladder cancer. I feel like what I’m learning so quickly, even now, I’m learning so much about it that I don’t want to sound trite, but it’s true that knowledge is power. And it’s good to know. I think, what is it, five years after diagnosis, there’s a 75% survival rate. Well, that’s pretty good. It’s better than 10%.

Rick Bangs:

Right. And very dependent on the diagnosis and what your status at the time of diagnosis. But for many people, the odds are quite good.

Cathy Murphy:

Right. And I would check out that Survivor to Survivor program that BCAN has. BCAN has so much. So much.

Rick Bangs:

Yeah. So let me give people the website for that. That’s www.bcan.org/s2s. S2S stands for Survivor to Survivor.

Cathy Murphy:

Wonderful.

Rick Bangs:

So as we wrap up, any final thoughts you want to share?

Cathy Murphy:

Rick, you’ve let me just yak and I appreciate it. I think that helps. Thank you so much. It’s been a great opportunity and I appreciate so much what you do. I’ve listened to a number of your podcasts, and that is just a great resource.

Rick Bangs:

Excellent. Well, thank you very much. And I really want to thank you for giving us this great understanding of coping with multiple cancers and some practical advice on that. And BCG resistant bladder cancer along with navigating clinical trials as a treatment option.

If you’d like more information about bladder cancer clinical trials, please visit the BCAN website, www.bcan.org/clinicaltrials.

In case people wanted to get in touch with you, we are asking that they send emails to communications@bcan.org, B-C-A-N.org.

Just a reminder, if you’d 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. Be sure to like, comment and subscribe to this podcast so we have your feedback. Thank you for listening, and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Kathy.

Cathy Murphy:

My pleasure. 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.